Newsletter – Page 3 – Polio Survivors Network

Post Polio Matters Volume 10 Issue 6

© Polio Survivors Network – Volume 10, Issue 6/12 [114] February 2021	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire PostPolio Library 100+ articles
Caregivers go through more than they will ever tell you. They give up a lot and rarely have a social life. They can get sick and emotionally worn out. It’s a lot for one person and you will never know until you have walked the road of a caregiver.

Polio Survivors Network Newsletter

February 2021 — Volume 10 Issue 6 of 12 [114] n.b. Volumes 1 to 6 published under the name LincPIN

Page 10 & Backpage

ARIZONA

Friday March 12th 2:00 p.m. GMT – See Page 13
Two feet of snow in New York	How to prepare for a ZOOM meeting.

Page 12

Polio Survivor Ellen Riddle, now living in Arizona, writes again in our newsletter.

 Sunrise & Sunset see Back Page

This February spread nothing but love and smiles

Thank you so much!

Donations received since last newsletter:
November 2020
Smile.Amazon	£11.31
December 2020
J Underhay via PayPal Giving Fund	£50.00 + £3.75 gift aid
Galvin Donation	£12.50
Unknown via PayPal Giving Fund	£2.50
January 2021
P Dunham via PayPal Giving Fund	£15.00
Y Webb Cheque	£100.00
February 2021
J Barter Donation	£12.50
Total received: £207.56

Articles in this publication may be reprinted in full with acknowledgement of this Newsletter name, volume, issue and date. Exceptions are where written by an external author/newsletter when permission must be gained from the original author/s.

Page 2	Contents, Donation acknowledgements
Page 3	Editorial by Hilary Boone
Page 4	Drop, Jab and Go or how I got vaccinated by Simon Parritt
Page 5	Toni Writes …
Page 6 – 8	Reasons to get vaccinated against COVID-2 the disease caused by coronavirus by Zsuzsi Snarey
Page 9	Variant of Covid Virus – Eddie Bollenbach, Neurological Alliance highlights
Page 10	Vaccines Excerpts Covid in 2021 and Polio from the 1950’s
Page 11	From Our Readers
Page 12	Polio Survivor Ellen Riddle, now living in Arizona, writes again in our Newsletter
Page 13	PSN Virtual Coffee & Catch Up – March 12th Rotary Purple For Polio Tea Party – February 23rd
Page 14 – 15	Australian Polio Survivors’ Response to Pandemic Changes by Michael Jackson
Page 16	Items to hopefully make you smile
Page 17	Don’t ignore pain!! by Verite Reily Collins
Page 18	Post Polio News (PPN)
Page 19	Management Committee, Useful Polio Articles
Back page	Ellen Riddle photography, Goodnight Captain Sir Thomas Moore

Editorial by Hilary Boone

I am starting to write this on February 1st. Where did January go? It is so strange here we are stuck at home week after week, month after month and I would have thought the time would go slowly… Remember when you had weekdays, weekends and Bank Holidays, now each day is just the same as the next. If only those that contact us that work for Social Services, Benefits, the NHS etc realise how we wish we could reply ‘I am on annual leave till x’. Since March 12th 2020, when we started our first day of Stay Home, I have not had a full day off from being Richard’s Carer when the Carers we can employ from our Direct Payment funds are not working. Not only have I not had a full day off but there is no pay, holiday pay or pension. I just read this out to Richard and his reply ’But you do have fringe benefits’.

That reminds me, the other evening we were in the bedroom watching TV and as I went to put my phone on charge I spoke. A voice said, “Sorry I did not get that” I replied “Don’t be nosy it was not meant for you” The voice replied “I am sorry”. Richard said ‘Did your Apple Watch just apologise to you?” I replied, “Yes it did” and we both burst out laughing. I find it hard to keep pace with progress, How things have changed since the start of this millennium.

I started thinking what might be good information that we really need to take on board to get the best out of our lives. We are all the most stubborn determined folks who would not be beaten by any challenge we met. Being told by a health professional – hopefully one with knowledge of polio and post polio and how it affects our lives – that you should give up work, or think about using an electric scooter, being assessed again or for the first time for a short [AFO] or long leg foot orthosis [KAFO] is very hard to hear. That triggered a memory from early 1997 at my 3rd rehab clinic appointment since finding PPS existed. I was asked, “Have you thought more about getting an electric scooter”. I shook my head “No”. He then said “who wrote this article about pacing and resting in this newsletter and using equipment.” I was so proud to say that I had written it but got a shock when he said “Can you tell me then why YOU are not taking the advice that YOU are suggesting others do?” I replied, “Oh I am not there yet” His reply “I have news for you, you are and I would think you have been for some time. Stop being stubborn.” My scooter arrived by lorry on my 50th birthday and I had to try it up and down the street. I was so embarrassed, but…!

Now at 73 I am on my third electric scooter. Rather than restricting my life it opened it up and I started to do so much more. I have travelled hundreds of miles by plane UK to USA and back. By train Lincoln to London and across America from Florida to California. Round State Parks, huge shopping Malls, Museums, Castles, Garden Centres, PPS Conferences, from home around town and back again about ten miles, all day on grass at American Pioneer Re-enactments [see photo back page], etc and I do not have to carry my bags. I will be honest and say I do not like seeing pictures of myself on it. In fact, the first time I went to Lincoln I was in Marks and Spencer and passed a little old lady on a scooter just like mine. I thought maybe she would have a chat about what it is like and I turned to go after her. I got a heck of a shock seeing myself in a large mirror!

What is the best place, event you have managed to go to once you got wheels?

Ellen and Lonnie whom we met in Texas and visited us in Florida recently bought a lovely home in Arizona. Ellen was featured on the front cover of a PPM Newsletter Vol, 4, Issue 8 and yesterday she posted some more sunrise and sunset photos. I soaked up how they made me feel and I asked her if we could we print a couple. See front cover and back page

We recently had a photo competition but not many entries so I have another idea – we will dedicate at least one page to photos that mean something to you that you would like to share with other members/readers. Add a few words to tell us why this means so much and help us add some more ‘Ah’s and warm feelings to our Newsletters. Maybe an eek with a one liner?

Annual General Meeting 2021. We are again unable to meet up this year. The committee have decided to try this online, although we do understand that some may not have the internet access needed. If you turn to page 13 Toni explains how we plan to have a practice run through.

Covid-19 We have included some virus information that we hope you might find helpful. I could not close this newsletter without a small tribute to Captain Sir Tom Moore – an Inspiration!

Our Chair Simon writes…

Drop, Jab and Go or how I got vaccinated

As I write this I can report that I had the Covid-19 Oxford AstraZeneca vaccine just over two weeks ago. To be honest I couldn’t really care which version I had but maybe had a slight preference of the Moderna mRNA given my bias towards the slightly more novel approach. However, it was a totally painless experience and I had absolutely no after effects that I can identify. Of course, as my PPS comes in various forms of day to day variable irritations, be that various pains and/or annoying fatigue, who knows if I would have noticed anyway.

The other slightly different issue for me is that I have no upper arm muscles, and let’s be honest here this is no hyperbole, I mean NO upper arm muscles and very little arm muscle anywhere else if I am being honest. So, the preferred option for an injection site is the large muscle known as the gluteus maximum, in other words my buttock. So the procedure is not ‘roll up your sleeve’ but ‘pull down your pants’. This isn’t usually an issue when getting vaccines and injections at the GP or hospital where they are used to the issue and where to inject. Also, after around 65 years of innumerable situations where I have practiced the art of remaining perfectly comfortable being either semi-naked or even naked in a room of medics, nurses or even passing curious medical students and others, it is not something that bothers me particularly. If there ever is an issue it usually arises with other people’s embarrassment or difficulty which is perhaps a function of their inexperience or personal issues and attitudes.

Of course what I didn’t want was to arrive at some mass public vaccination room or clinic and find some health professional or worse, volunteer, confronted with me offering to drop my pants and either not understanding why or not being able to offer the vaccine there and then, after I have been ‘gagging’, so to speak, to get it as soon as I could. I did attempt to plan for this and so spoke to my GP who suggested the local clinic as they use individual rooms.

I arrived and of course the rooms were not individual and there was no note about me, but luckily for me the person administering the vaccine was a GP herself. So at least no explanation of muscle mass and polio arms was required beyond stating the facts. So, all went more or less fine as we waited for the other recipients to leave the room and close the door to exclude others whilst I was ‘dealt with’. She was slightly concerned that there was a large window in the door and so suggested we move to the side where there were now 3 or 4 other health professionals, but let’s face it I was hardly about to strip off and do a pole dance (even if I could) and so I reassured her that I was fine with the present company and suggested we just get on with it. So, having risen from my wheelchair like some later day Lazarus, I stepped forth, bent over a convenient chair and offered the desired area for her needle skills.

That was that and in just a few seconds, with my wife’s assistance, I had dropped my pants, been jabbed, pull them back up, was back in my wheelchair and on my way. So, I have had the first dose and now wait the 2-3 weeks when I will feel just a little better protected from this pesky virus than before.

Simon Parritt

Psychol, AFBPsS, MSc, BSc(Hon), BA, CPsSC, MBACP

Chartered Psychologist

HCPC Registered Counselling Psychologist

www.sp-psychology.com

Chair – Polio Survivors Network

simon.parritt@poliosurvivorsnetwork.org.uk

Toni Writes …

Firstly, a big thank you to members who got in touch to share their thoughts on our recent newsletter articles, I am sure that those who submitted the questions are very grateful for your input.

If you have any burning questions or any tips or experiences, you would like to share the contact details are below for you.

So as this pandemic rumbles on and seems to twist and turn I am sure you have had moments where you are just completely sick of hearing about it. I don’t know about you but have had days/weeks where I have avoided the news just to create some positive head space (I have lost friends during this pandemic). I think this seems to have become quite common and has come to be termed pandemic fatigue or similar such phrases.

One definition of pandemic fatigue is that it is a ‘natural response felt to the prolonged uncertainty and disruption caused by a pandemic’. Everyone is different but if you find you are experiencing symptoms of pandemic fatigue it is important to try and stay connected to people (video chats, phone calls, texts, letters, reaching out to friends) and to try to make the best of our circumstances (focus on what we can do not on what we cannot do).

A routine can help too as we can feel we are using our days/weeks to take care of the necessary things but also to set aside time to look after our own health and wellbeing. It can be hard to keep up with the handwashing, sanitising, face mask wearing, social distancing but this is what we need to keep doing for now, one day it will change. If we get fatigued by the pandemic we can be at risk of letting our guard down. Keep up the good work, it does save lives. Don’t forget that I am always on the end of an email if you want to drop me a line.

As ever we are looking out for any articles you have found helpful or books that have inspired you for our online library. Please feel free to share them (contact details below).

Take care and keep safe

Toni x

In PPM 113 we had an interview including the query… “Have any members experienced tingling or pins and needles type of sensations?” Please let us know if you have experienced these and have suggestions in addition to Hilary’s below.

Editors response: In PSN early years I asked a Neuro Physiotherapist at a meeting in Cambridgeshire this question. She told me that I needed to get my legs up every time I sat down as this will help stop the waste products in my blood pooling in my feet and causing this. I can confirm this really works. Days where we took a long car journey, flew UK/USA/UK and attended conferences back came these niggling painful sensations every evening/night. Days when we got our feet up this reduced by about 90%.

Email	psnadmin@poliosurvivorsnetwork.org.uk
Post	PO Box 954, Lincoln, LN5 5ER
Website	www.poliosurvivorsnetwork.org.uk
Phone	01522 888601

Reasons to get vaccinated against COVID-2 the disease caused by coronavirus

All living things are made of cells. Our bodies have millions of cells, each with a nucleus in the centre containing information about us in the form of very long strands of DNA, a molecule in the form of a double helix which is twisted to form chromosomes. They are the 23 pairs of these chromosomes or “coloured bodies” visible under a microscope when the cell is dividing to make an exact copy of itself.

Corona viruses are made of a very long, single strand of RNA, a strand of approximately 26,000 to 32,000 bases or RNA “letters” in length which are folded in a special way and surrounded by a fatty outer layer called an envelope The virus usually appears spherical, as seen under an electron microscope, with a crown or “corona” of club-shaped spikes on their surface. Viruses can only reproduce copies of themselves by infecting a host cell. Once inside the cell they instruct it to become a “virus factory”. Mutations or changes to the RNA can only happen inside a cell. That is why it is so important to isolate, keep our distance, wear masks and wash hands.

Corona viruses are a group of viruses that usually cause mild illnesses, such as the common cold. However, certain types of corona virus can infect the lower airway, causing serious illnesses like pneumonia or bronchitis. Most people get infected with corona viruses at some point in their lives and the majority of these infections are harmless. The new corona virus, (Severe Acute Respiratory Symptom CoronaVirus) SARS-CoV-2 that causes the disease COVID-19 is a notable exception.

Read more: https://www.newscientist.com/term/coronavirus/#ixzz6hALkUXuL#

Each pathogen is made up of several subparts, usually unique to that specific pathogen and the disease it causes. The spike protein of corona virus is called an antigen. It is the part of the virus that allows it to infiltrate the cells in the lungs, throat and nasal cavity by interacting with a receptor on the cell wall called ACE2. The immune system makes antibodies in response to the pathogen’s antigen. You can consider antibodies as the soldiers in your body’s defense system. Each antibody, or soldier, in our system is trained to recognize one specific antigen. We have thousands of different antibodies in our bodies. When the human body is exposed to an antigen for the first time, it takes time for the immune system to respond and produce antibodies specific to that antigen. Vaccines train the immune system to recognise and fight bacteria and viruses so when they try to enter the body it is ready to defeat them. After recovery, memory cells remain in the blood so that next time the body meets the infection it can quickly make the antibodies to fight the infection.

Most of us don’t have to worry about smallpox, polio or diphtheria. Smallpox is a thing of the past, while polio and diphtheria are very rare. The reason is found in the development of vaccines. Vaccines are a clever way to train the immune system to make us immune to a particular disease.

https://www.who.int/news-room/feature-stories/detail/how-do-vaccines-work

–

The first vaccine was developed by Edward Jenner in 1796. At that time it was noticed that dairymaids who had cowpox, a mild disease, were immune to smallpox. Jenner decided to test this idea by infecting an 8 year old boy with cowpox and a few months later he injected the boy with smallpox. Luckily the boy lived and did not catch smallpox. He was immune to it. Since then vaccines have saved the lives of millions of people by preventing or eliminating many diseases. Smallpox, which killed 300 million people in the 20th Century was finally eliminated in 1980. There were hopes of eliminating polio this way by the year 2000 but unfortunately due to misguided resistance to vaccination, it is still endemic in Pakistan and Nigeria.

The Pfizer/ BioNTech vaccine uses an artificially made copy of a small part of the messenger RNA or mRNA from the genome of the virus from the spike protein. Once inside a human cell it instructs the cell to make more special spike proteins normally found on the virus. These proteins then trigger an immune response, which in turn creates an immune memory so that next time the body encounters the corona virus with its characteristic spikes, it will be able to recognise it and destroy it. The vaccine contains merely a set of instructions to stimulate the immune system; it does not contain any part of the original virus. In extensive trials it was found to be 95% effective. Fortunately they also have the technology to alter the genetic sequence of the vaccine in 5-6 weeks to match that of the spike protein when it mutates or changes.

The University of Oxford team has used a harmless corona virus to deliver the viral genes into the cells of the body. The vaccine is based on a virus that causes colds in chimpanzees but it is made safe by modifying it so that it cannot replicate in humans. This vaccine also carries genetic instruction to make the spike protein. The immune system recognises these and raises an army of antibodies and T-cells to fight the virus. Clinical trials have shown that it is safe and induces a strong immune response and is 90% effective if given in two doses, the second dose given about 12 weeks after the first. The AstraZeneca vaccine developed in Oxford has the advantage that it is much cheaper than the Pfizer/BioNTech vaccine and it does not have to be stored at ultra low temperatures.

There are a hundred different vaccines in development against the corona virus that causes COVID-19.The Moderna vaccine developed in the US was approved recently for use in the UK for the 18+ population and has high efficacy. It is similar to the Pfizer vaccine in the way it primes the immune system to develop antibodies and memory cells. Some side effects were reported in the younger population but very few in the over 65s. The vaccine made by Janssen, the Johnson & Johnson group, is a one shot vaccine. It uses the same technique as AstraZeneca, but is given as a single injection, rather than two.It is being reviewed by drugs regulators for approval. This, combined with it needing only a fridge to store and a billion doses planned this year, means it could make a significant impact around the world. Another vaccine made by Novavax is waiting for approval. It is nearly 96 % effective against the older coronavirus and nearly 86 % effective against the new variant.

Some vaccines against other diseases use viruses which are inactivated by heat, some use viruses that are made weaker so they cannot replicate in the cells of the body. These vaccines generate a strong, long lasting immune response. This is the way the MMR vaccine is made for Measles, Mumps and Rubella. Some vaccines, like the one against flu use a small part of the virus. In order to eradicate a disease successfully a large proportion (60-70%) of the population all over the world need to be inoculated, thus producing “herd immunity”, because vaccination only protects the vaccinated person from developing the disease but not from transmitting it. New versions of the corona virus are emerging in countries around the world as the virus spreads which urges us to vaccinate more people all over the globe. Fortunately the new vaccines can be rapidly tweaked to be effective against new variants.

But only if enough people immunised can the spread of the virus can be halted. Unfortunately some people are sceptical of vaccines in general. This could prevent the levels of vaccination reaching high enough levels to protect everyone.

This mistrust has been fuelled by scare stories like the one about the MMR vaccine causing autism. However all vaccines are thoroughly tested for safety before they are used widely and continue to be monitored. Large clinical trials have found no link between the MMR vaccine and

autism. Despite this many people continue to mistrust vaccines and the resulting low uptake of the MMR vaccine lead to the re-emergence of measles. In 2018 nearly a thousand cases of measles and similar number of mumps were reported in the UK. The cases of mumps increased to five thousand in the year 2019. Measles and mumps can have serious complications. Covid-19 has so far caused the death of over 100 000 people and many others who recovered had their lives changed by continuing health problems. Although we have no information yet about how long the immunity lasts after vaccination, this will become clear once the large proportion of the population is vaccinated. Another unknown is whether vaccinated people can infect others by carrying the virus from an unknown source. But please remember that neither vaccine contains any virus and cannot cause Covid-19 infection.

Immunisations prevent the death of 2-3 million people every year. When new viruses emerge vaccines are our best hope of defeating them. I have been vaccinated against Covid-19 with the AstraZeneca vaccine and my husband had the Pfizer/BioNTech vaccine. We didn’t have any serious side effects apart from a slight tenderness at the vaccination site for 24 hours. We were both very happy to be immunised and I hope that I have persuaded you to do the same.

Zsuzsanna Snarey B.Sc.(Special) Chemistry

Reliable information about the vaccine can be found on the NHS website:

https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/

You could listen to BBC Sounds programme by Tim Harford called “How to Vaccinate the World”

https://www.bbc.co.uk/sounds/series/m000py6s

There is useful information from the FDA (Food and Drug Administration, USA) on the Pfizer BioNTech vaccine:

https://bit.ly/3dc1cOf

and on the Moderna vaccine:

https://bit.ly/3p7IMAf

The British Polio Fellowship provides Covid-19 vaccination information on their website:

https://www.britishpolio.org.uk/ covid-19-vaccination-information

Contact the BPF on 0800 043 1935 or Email info@britishpolio.org.uk

Variant of Covid Virus

Kindly shared with us by PSN member, Eddie Bollenbach M.A. biology

You have probably heard of the new variant of COVID virus in the United Kingdom and also another mutant strain in South Africa with similar mutations to the UK variant. Let’s constrain to the UK mutant. The reproductive number or Ro of the wild strain is 1.1 which means 10 infected people will typically infect 11 others. It is believed that the reproductive number Ro of the mutant strain is 1.5, which by division you can find that the new virus seems 70% more infectious. 10 people will most commonly infect 15 people.

The difference in infectivity is not enough to mean we cannot control the virus by maskwearing, social distancing, and hand washing. It can be handled. Now, since the genetic code of the new variant differs in 6 places in the spike protein, but USA Today says 8 places, the result is that two amino acids in the spike protein are different from the wild type. A protein is a long chain of amino acids linearly bonded to one another. Then this long line of amino acids folds a couple of times to give us the shape of the protein. A change of 2 amino acids in the spike protein will result in a slightly different shape for the spike protein. In this new variant, there are a whopping 17 new mutations altogether.

Since the shape of the spike protein matters because it is the target of antibodies induced by vaccination the concern arises regarding the antibody shape combining with the new spike protein shape.

The good news is vaccinologists believe the vaccines will still be effective and work.

Continuing research is going on now in Britain to measure this. This variant will soon be all over the world if its Ro is higher than that of the wild strain. The US hasn’t closed its border to people from the UK because the strain is probably here already and it will be treated the same way as our original wild-type strain.

Two items from the Neurological Alliance latest newsletter:1. Are YOU one of 12 million people in the UK with a for a person with one?If you have had a brain or spine injury, live with a neurologiwho does, NeuroLifeNow want to hear from you.The Brain and Spine Foundation and the Neurological AlliaNeuroLifeNow – an app and website that supports you to influence change. We’re committed to improving treatment, with a neurological condition. We are tired of people with nsupport they need. We believe that by coming together we 2. Association of British Neurologists (ABN) vaccines The ABN has published Guidance on Vaccination for COVIConditions https://bit.ly/3rj1jexThis states that all COVID-19 vaccines are safe for neurolopatients take up whichever vaccination they are offered witspecific contraindication (e.g. severe allergy, pregnancy). Pproblems who are concerned should ask their GP, who ma

neurological condition… Or carincal condition, or are close to someonnce have come together to build share your experiences in order to care and support for every person urological conditions not getting the can help to change that faster.guidance D-19 and Neurological gy patients, and recommends hout delay, unless they have a eople with more unusual medical y refer them on to their neurologist.

Vaccines Excerpts [1] Covid 2021 and [2,3] Polio from the 1950’s

[1] PSN Life Member Marcia Dreisbach Falconer, PhD Cell and Molecular Biology wrote:

Here’s a good article in the NY Times, by a doctor – here’s a little excerpt. We should all be RUSHING to get the vaccine! I am!

Right now, public discussion of the vaccines is full of warnings about their limitations: They’re not 100 percent effective. Even vaccinated people may be able to spread the virus. And people shouldn’t change their behaviour once they get their shots.

These warnings have a basis in truth, just as it’s true that masks are imperfect. But the sum total of the warnings is misleading, as I heard from multiple doctors and epidemiologists last week.

“It’s driving me a little bit crazy,” Dr. Ashish Jha, dean of the Brown School of Public Health, told me.

“We’re underselling the vaccine,” Dr. Aaron Richterman, an infectious-disease specialist at the University of Pennsylvania, said.

“It’s going to save your life — that’s where the emphasis has to be right now,” Dr. Peter Hotez of the Baylor College of Medicine said.

The Moderna and Pfizer vaccines are “essentially 100 percent effective against serious disease,” Dr. Paul Offit, the director of the Vaccine Education Center at Children’s Hospital of Philadelphia, said. “It’s ridiculously encouraging.”

New York Times 18/01/2021 Underselling the Vaccine by David Leonhardt

https://nyti.ms/3p8kshQ

[2] Polio is a crippling and potentially fatal infectious disease. There is no cure, but there are safe and effective vaccines. The strategy to eradicate polio is therefore based on preventing infection by immunizing every child until transmission stops and the world is polio-free.

The Global Polio Eradication Initiative

https://polioeradication.org/polio-today/polio-prevention/

[3] On April 26, 1954, the Salk polio vaccine field trials, involving 1.8 million children, begin at the Franklin Sherman Elementary School in McLean, Virginia. Children in the United States, Canada and Finland participated in the trials, which used for the first time the now-standarddouble-blind method, whereby neither the patient nor attending doctor know if the inoculation was the vaccine or a placebo.

One year later, on April 12, 1955, researchers announced the vaccine was safe and effective and it quickly became a standard part of childhood vaccinations in America. In the ensuing decades, polio vaccines would all but wipe out the highly contagious disease in the Western Hemisphere.

The man behind the original vaccine was New York-born physician and epidemiologist Jonas Salk [1914-1995]. Salk’s work on an anti influenza vaccine in the 1940’s, whilst at the University of Michigan School of Public Health, led him, in 1952 at the University of Pittsburgh, to develop the inactivated polio vaccine [IPV], based on a killed-virus strain of the disease. The 1954 field trials that followed, the largest in U.S. history at the time, were led by Salk’s former University of Michigan colleague, Dr. Thomas Francis Jr.

In the late 1950’s Polish born physician and virologist Albert Sabin [1906 – 1993] tested an oral polio vaccine [OPV] he had created from a weakened live virus. The vaccine, easier to administer and cheaper to produce than Salk’s, became available for use in America in the early 1960’s and eventually replaced Salk’s as the vaccine of choice in most countries.

Polio vaccine trials begin, History.com Editors

https://bit.ly/3tNFExg

© Polio Survivors Network – Volume 10, Issue 6/12 [114] February 2021	Page 11
“…The newsletter is not only informative but conveys a sense of community with those who experience PPS, something that it is difficult for people in my daily life to understand…”

From our readers … (we love to hear from you)

You will have noticed a few requests for help or advice from our readers in the last Polio Matters Newsletter. Below are some of the responses we received.

A query about keeping warm in the cold – our editor and readers replied:

“Wear layers of clothing so its easy to change to my temperature needs. Plus by a woollen hat [I think I look awful in hats but now I don’t care what I look like so long as I am warm].”

“I used to work outside in East Yorkshire winters & cold was no real problem. I am 75 & for the last 25 years cold has become a real problem! I wrap up warm!!! Since I stopped cycling I’ve started to use a recumbent, it’s comfortable, 2 years ago it became impossible for me to ride it, breathing problems. So I electrified it & ridden 7000 miles since. As you are not working hard it’s easy to get very cold! So I layer up!!!! Merino wool long johns, socks, long sleeve tee shirt, next a gillet of down, then a fleece shirt & finally a windproof breathable jacket. Also a fleece balaclava + waterproof breathable woollen hat, Sealskin gloves , merino wooden running socks & winter cycling boots. Always a hot drink in my flask! Waterproof trousers & hoodie in saddle bag. I know I look a sketch but I don’t get too cold out on a 2 hour ride. Hope this helps. Wrap up & stay warm & exercise within your ability.”

A query about how spines have been affected – our readers replied:

“I am writing to you about my experiences with Ankylosing spondylitis, I have & have had for many years problems with my spine, top to bottom. As a consequence I’ve tried physiotherapy, too targeted & painful, Pilates to vigorous, but my teacher offered the class the option of continuing with Pilates or trying “Melt Method” the class was split 50/50, I went to “Melt Method” doing most of the exercises. Since lockdown classes have been suspended but I do selected routines at home using “Melt equipment” I purchased. These routines I do daily for my spine, hands & feet & I find that they loosen me up in morning & release kinks in the evening. Even some headaches. These I do along with other exercises throughout the day. Along with my medication & the watchful eye of specialists I am able to mostly manage my P.P.S. quite well.

Me & Vit D3. I have over the years found that not all the medical profession recommend supplementation with Vit D3 & have been told not to take it by some. Never the less I do take a daily supplement which is supported by other medical professionals!

My experience; Proven by me on at least 3 separate occasions, I find that when my Vit D level drops below the halfway mark on the “scale/range” (150) that I start to gain weight & no matter what I do my weight continues to rise & at the same time my blood pressure rises in just the same a manner. When I become much lower in Vit D I experience pain all over & it’s not like the pain from my joints! It also overwhelms all my pain relief! If I then take Vit D, my pain disappears overnight!

Once I was looking at my weight graph on my smart watch once & noticed that my weight started to gain on stopping Vit D & then started to drop off when I resumed Vit D. On noticing this I referred to my log of Blood Pressure, it followed the same graph line! My conclusion is that Vit D supplementation is beneficial to me! From June till September I take 25ugs/day. October to December I take 50 ugs/day. January to March it’s 75 ugs/day. March to June 50 ugs/day. This dosage seems to work for me. Hope my experiences are of help. Thanks for an informative magazine!”

A query about tingling sensations/pins and needles – our editor replied (we would love to hear our readers views on this too):

“A neurolgical physiotherapist in the late 1990s told me that if we had restless, jiffly, aching legs then we should get our feet up every time we can.”

I wonder if any other members have experienced constant tingling sensations, like pins and needles.

Polio Survivor Ellen Riddle, now living in Arizona, writes again in our Newsletter

Twenty five years ago I was using a cane. I had decided to use my artistic talent to make it fun. I decided if people were going to stare (I felt everyone was staring) I wanted it to be because they were checking out my spiffy cane rather than staring at me using it.

This began my Cane and Staff art period. I purchased 100 unfinished canes from a source out on the east coast and began making them. Some I sold, some I gave away, a few I kept. When I stopped doing canes and walking staffs I had only a dozen or so of undone canes left. I loved working on wood. Around ten years ago I simply stopped doing my wood burning works of art. Just stopped.

I continued to draw, to paint and to write. Which evolved into my window painting stained glass period. I am toying with picking this up again. I stopped because of the RV Lifestyle carrying so much glass around… Only did this art when a friend wanted one done on an existing window.

During our RV travels I got into teacher drawing and painting more than doing my own work. Space was limited in the RV. I sketched and took photos. During the initial months of Covid 19 I took to sketching on the streets doing chalk art. The closest I’ve come to participating in the art world of graffiti (I think I would have loved it as I have loved it as I have always yearned to do murals, both of which are beyond my physical abilities due to polio/PPS).

More recently I have discovered rock art.. A small version of graffiti which I am enjoying exploring. Paint the rocks and just leave them somewhere for someone else to find and enjoy. But it is photography that is calling to me now.

Over the last seven years or so, thanks to the cameras on iPhones, I have resurrected my love of photography. I studied it as part of my degree in fine art some 50+ years ago. For years I always had a good camera at my side. Even had my own dark room at one point as I struggled to find my spot in the art world. I did end up as a commercial artist working in an art studio for ten of my working years. When PPS hit at age 46, carrying a camera round my neck became impossible due to the pain it caused.

As an upside down polio with pretty good legs and a very weak upper body most of my pains and limits revolve around my neck, shoulders and arms. Over the past ten years or so of owning one iPhone after another I have perfected my skills in using its camera. And I have a few ‘dark room’ apps that I play with. Helping nature speak for itself.

I am taken by sunrises and sunsets. I don’t think I will ever tire of taking shots of them. The awe they speak to me is what I continue to work capturing.

When I agreed to write this piece I was questioning how I would tie in my art work over the years with my ongoing struggle to cope with PPS. How would I tie it in with our ways of surviving and conquering our PPS challenges?

There is an obvious connection I just didn’t see it until I started to write. You see, as I wrote and got into editing and re-editing this piece; I uncovered a truth I have been dodging.

I walked away from doing canes/staffs because it became more difficult to do. The same happened with my stained glass painted windows, and other paintings. My weaker fine motor skills jump out at me as I push to do these type of works. Rock painting is more do-able as I don’t look at it as fine art. I don’t hold it to the standards I set with what I silently view as my ‘real art’.

My salvation as an artist, with PPS, if you will, lies in my photography. And as I finish this short piece I realise I need to embrace it more. Stretching the limits of using my camera on my phone to produce quality photos. Just because I can without so much complaining by my PPS body.

I also realise that I still need to draw and paint. I need to learn how to let these reflect the limits of my polio/PPS body are setting for me and just do it. However, for now my joy is in my sunrise and sunset photos. I hope you enjoy seeing the beauty that I see in Arizona.

Ellen Riddle

Email: ariddle4you@gmail.com

We would love to meet youWhen discussing possibilities for our Annual General Meeting for 2021 we thought it would be a good idea to see if our members are able to join us online.We appreciate some of you may not be comfortable doing this or even have access to online meetings. In order to see how an online meeting would work for our members who wish to try it out (and also for us hosting it) we wondered if you would like to join us for a Polio Survivors Network virtual coffee and catch up on:Those who have provided your email addresses should see an invite with the relevant link to the meeting dropping into your inbox in the coming days.If you have changed your email or would like to provide PSN with your email address please email info@poliosurvivorsnetwork.org.uk and we will be sure to include you.We plan to use Microsoft Teams so if you would like a brief guide on how to use it on your device please email as above.Friday March 12th 2:00 p.m GMT

It is not a formal meeting and there is no need to book. We do hope that you will enjoy meeting other Polio Survivors. Even if you can only pop in for a few minutes it would be great at least an hour (and can run it as long as we likThere are certainly positives to having a meetinfrom all around the world would be able to attecan get the time zones to line up).

to see you. We will keep the meeting open for e if we’re having too much fun)!g online as this means any of our members nd, how lovely this would be for our AGM (if we Recent PSN meeting using Microsoft Teams

The LincPin Volume 4, Issue 8, February 2004

How Do You Decorate Your Canes by Ellen Riddle

https://poliosurvivorsnetwork.org.uk/enter/wp-content/uploads/2018/10/lincpin4-8.pdf

23rd February – Rotary Purple For Polio Tea Party

Rotary Club UK will be hosting a Zoom on 23 February at 16:00 to celebrate, inform and inspire about their work. Their ambassador Anne Wafula-Strike will be co hosting the talk with Konnie Huq alongside many other fabulous guests including the Fellowships very own Colin Powell and Sarah Passingham.

‘Working across the world, with global partners, Rotary has led the fight to rid the world of polio. Join us on our polio journey, sit back in the comfort of your home and enjoy a free online celebration of the truly amazing and lifesaving achievements so far with short stories from young and not so young, snapshots of polio activities, tributes, music and lots more.’

Tickets for this free event are available here:

https://www.eventbrite.co.uk/e/rotary-polio-tickets- 136195764197

Australian Polio Survivors’ Response to Pandemic Changes

by Michael Jackson M.P.T., B.Ed. Polio Australia Clinical Health Educator

In late 2020, 183 Australian polio survivors responded to a survey through Polio Australia. On this survey we included a variety of questions related to the health of polio survivors and their use of health professionals. We asked the following pandemic related question to capture how Australian resident survivors were coping with the pandemic:“COVID-19 has caused many changes in how Australian society has functioned in 2020. What have been the most notable aspects of these changes – for you as a polio survivor – living through this pandemic?”

The question was open-ended and so there were no cues for the content of the responses, and no cues to respond positively or negatively. Responses were coded by the most emphasised aspect submitted by an individual. The question was not mandatory on the survey: 56% of the respondents chose to not answer this question, 36% reported negative experiences, and 9% reported positive experiences.

The most common positive notable aspects reported by polio survivors experiencing the pandemic were:

• Less deadlines and commitments, and so less stress

• Less pressure to travel or to participate in events

• Availability of online ordering and home deliveries

• More time for home and hobbies

• Better coping and well being

Polio survivors experiencing the Late Effects of Polio often experience varying degrees of fatigue, and yet the term fatigue was included in only one response. We are unable to say that these positive responses were related to respondents’ fatigue experiences, but the character of these responses in context of the group being asked hint at such. There appear to be mental health benefits experienced by some polio survivors during this pandemic – perhaps by those who are less energised by or reliant on social engagement.

The most common negative notable aspects reported by polio survivors experiencing the pandemic are shown in the pie chart. Reduced or difficulty with access to services was the most reported negative aspect, and this is easy to appreciate in context of how healthcare changed during the pandemic. Isolation, coping, or a change in social aspects was difficult for half of those reporting negative experiences; this may reflect those survivors who lean on social engagement for support, care, and mental health. Negative effects on physical condition was reported by 15%, this being annotated with concerns about losing strength, endurance and general fitness that was being maintained through regular exercise. A direct example of pandemic exercise disruption was the closure of public pools, eliminating a known well-tolerated mode of exercise that could not be replicated in other environments.

It is worth comparing the positive and negative aspects reported. Themes around social preferences and needs presented strongly in both types of response. Removal from participation in social events, ability to cope, and ability to travel were reported both positively and negatively. In contrasting the reshome activity, while negatives included accessing needed services and maintaining physical condition.

As is often the case with survey questions, and what we see here, is that asking a particular question can lead to other questions needing to be asked in order to gain a fuller understanding of a topic. It is unknown how these responses might compare to what may be observed in the general Australian population, in those with disabilities, or in the polio survivor population at large. The national pandemic strategies utilised in different countries, and the nuances of

survivorship in each country, may additionally have an influence on the responses provided compared to this cohort.

Michael Jackson M.P.T., B.Ed.

Polio Australia Clinical Health Educator

Email:	michael@polioaustralia.org.au
Websites:	www.poliohealth.org.au
www.polioaustralia.org.au

“I AM WEARING A PAIR OF SHOES”

I am wearing a pair of shoes. They aren’t pretty shoes.. Uncomfortable shoes. Each day I wear them. Each day I wish they’d feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. Yes, I continue to wear them and continue my journey.. I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes.. To learn how painful my shoes are might make them uncomfortable. To truly understand these shoes one must walk in them. But, once you put them on, you can never take them off…

I now realise that I am not the only one who wears these shoes. There are SOOOO many pairs in this world. Some women/men ache daily as they try and walk in them. Some have learned how to walk in them so they don’t hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No one deserves to wear these shoes. Yet, because of these shoes we are who we are! These shoes have given me the strength to face anything. I am a disabled person who has a lifelong disability. I will forever walk in these shoes.

Author Unknown

Posted by Polo Survivor Constance Hanby Habakangas

☺ Items to hopefully make you smile ☺

1. A chicken crossing the road is poultry in motion.

2. I thought I saw an eye doctor on an Alaskan island, but it turned out to be an optical Aleutian.

3. She was only a whiskey maker, but he loved her still.

4. A rubber band pistol was confiscated from algebra class, it was a weapon of maths disruption.

5. The butcher backed into the meat grinder and got a little behind in his work.

6. No matter how much you push the envelope, it’ll still be stationery.

7. A dog gave birth to puppies near the road, she was cited for littering.

8. Two silk worms had a race; they ended up in a tie.

9. When cannibals ate a missionary, they got a taste of religion.

10. Don’t join dangerous cults: practice safe sects.

Things native English speakers know but don’t know they know:

Adjectives in English absolutely have to be in this order: opinion-size-age-shape-colour-origin-materialpurpose-noun. So you can have a ‘lovely little old rectangular green French silver whittling knife’ but if you mess with that word order in the slightest you will sound like a maniac! It’s an odd thing that every English speaker uses that list but almost none of us could write it out. So as size comes before colour, green great dragons can’t exist!

Barely

Barely the day starts and it is already six in the evening Barely arrived at Monday and it is already Friday … And the month is already over

… And the year is almost over

… And already 40, 50 or 60 years of our lives have passed … And we realise that we lost our parents, friends

And we realise it is too late to go back… So…

Let’s try, despite everything, to enjoy the remaining time… Let’s keep looking for activities that we like…

Let’s put some colour into our grey…

Let’s smile at the little things in life that put balm in our hearts…

And despite everything, we must continue to enjoy with serenity the time we have left. Let’s try to eliminate afters…

I’m doing it after… I’ll say after… I’ll think about it after… We leave everything for later like ‘after’ is ours.

Because what we don’t understand is that…

Afterwards, the coffee gets cold… Afterwards, priorities change… Afterwards, the charm is broken… Afterwards health passes… Afterwards, the kids grow up… Afterwards the parents get old… Afterwards, promises are forgotten… Afterwards, the day becomes night… Afterwards life ends… And then it’s often too late…

So… Let’s leave nothing for later…

Because still waiting to see later, we can lose the best moments, the best experiences, the best friends, the best family…

The day is today, the moment is now!

We are no longer at the age where we can afford to postpone what needs to be done right away. So let’s see if you have time to read this and share it… or maybe you’ll leave it for “later”.

Don’t ignore pain!! by Verite Reily Collins veritegreenbee@gmail.com Website: www.aftercancers.com

Do you ever get the impression the doctor isn’t listening? Particularly when you say you are in pain. Well, you are not alone. Every year a major cancer conference is held in San Antonio, Texas. This year a major session highlighted that pain was often under-reported.

A recent study by Dr. Reshma Jagsi from the University of Michigan, compared what patients said about the side effects they were experiencing from treatment, with what their doctors reported.

What the study found

Patients and physicians were asked to complete a questionnaire after each treatment detailing symptoms they were experiencing. The study found:

• About 30% of the patients reported moderate to severe pain, yet

physicians reported that the patients had experienced pain at only 1

on the scale or no pain at all.

• For patients who said they were experiencing itching of the breast

often or all the time: the doctors, on about 36% of their responses,

said their patients were experiencing no itching at all.

• For patients who reported they were experiencing swelling of the

breast often or all the time: the physicians, on 51% of their responses, said their patients were experiencing no swelling at all.

• Although patients reported they were experiencing significant fatigue most of the time or always,

about 19% of physicians said their patients were experiencing no fatigue at all.

Patients frequently reported very significant symptoms while their doctors said these same symptoms were non-existent or very minor. symptoms. So we are not alone; pain is under-reported in other areas. During Q & A it was asked whether patients may be more comfortable reporting side effects on questionnaires, rather than “disappointing” their doctors with “complaints”. Dr. Jagsi replied that she absolutely thinks that’s the case, saying “we need to encourage patients that, when we tell them certain side effects are expected, it doesn’t mean they shouldn’t tell us if they’re bothered by those side effects.” She stressed that doctors need to emphasize to patients that they want to know about any side effects that they’re experiencing and that there are things they can do to help support them through the experience. Dr. Virginia Kaklamani, MD, Co-Director of the conference, said “we need to listen more to our patients.” Or perhaps learn to understand what patients are trying to say?

Implications of the findings – you are not alone

Under-recognition of treatment side effects impacts patients in at least two major ways. The first, of course, is ensuring they receive quality care including appropriate management of symptoms and side effects while undergoing treatment. Directly related to that, getting a clear picture of individuals’ experiences with side effects, which can differ across populations, is an important part of addressing health care disparities.

Resources

There is no doubt that the best resource is a patient actually speaking up and making sure their doctor and medical team understand what they are saying.

What to do

Pain relief has improved dramatically in recent years. If you are experiencing pain, go back to your GP and ask for a referral – it could help to do some research on the Internet, find out what consultants specialise in, and ask to see a named consultant.

Pain relief is getting more attention and the Covid-19 crisis can work in our favour, as focus is being given to long-covid and the problems it is causing, including pain.

“It’s our new method for determining who we should

treat first. We take people in order of how loud they scream.”

POST POLIO NEWS [PPN] www.post-polio.org.uk

An online news cutting service from Chris Salter that specialises in news relating to polio, post polio, disability and other health related issues.

Twitter, Newspaper, RSS feed, Facebook, LinkedIn, Daily digest emails.

Editor: I am going to approach what I add here differently this month. Why? Reduced availability of carers has meant less time for me to do other stuff including opening up each item of Post Polio News to read it. I scrolled down and something caught my eye on Weekly Picks and I realised that readers may not be aware of the variety of information Chris Salter adds to PPN.

Today’s Email Weekly Picks included this:

	Vincent – Lady Gaga’s MIXED METER Star Spangled Banner?!https://bit.ly/3a7wl37

Lady Gaga? I thought ‘I have got to see what this is’ and I found it really interesting!

Here are the other items included in my email under Weekly Picks. I have included a bit more information under each item.

	Dickson – Pandemic Pivothttps://bit.ly/3cZUryL

Science – Pandemic Pivot: How scientists answered the call for diagnostic tests. I am going to go back and read this once I have finished this page.

	Tuba Skinnyhttps://bit.ly/3tKHoaj

The Quarantine Album now available. “We were scheduled to record a new album in April 2020, but postponed due to the pandemic. In the meantime we thought you might enjoy hearing some previously unreleased recordings.”

	Alan – Technological challenges in vaccine rollouthttps://bit.ly/372PDEZ

MIT Technology Review – Pandemic Technology Project – This is how America gets its vaccines. By Cat Ferguson and Karen Hao, Jan 27th 2021. The Biden administration has inherited a web of tech systems and policies that it must navigate to meet its goal of administering 100 million doses in the first 100 days. After just a week in office, the Biden administration is already under immense public pressure to fix America’s mangled vaccine rollout.

	Rich – I was lucky to find this vaccine anywherehttps://bit.ly/3p9ZIpT

The Washington Post – Voices from the Pandemic – Stanley Plotkin, legendary vaccinologist, on the historic development and chaotic distribution of Vovid-19 vaccines. As told to Eli Saslow January 27th 2021.

Excerpt below:

“I’ve been so focused on helping to develop these vaccines that I barely thought about the mechanics of getting it myself until this month. How can our process be this complicated? I’ve been calling around now for the last several weeks. I could not find out where, or when, or how to receive a vaccine. I didn’t get anywhere.

I’m 88 years old. I’m in the priority group, and I qualify by all the Phase One recommendations. That should be enough. I don’t want to jump ahead of anyone in the line. I don’t want to call somebody up on the phone and say: “You know, I actually consulted on this vaccination process. I wrote the textbook on vaccines……….!”

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary – Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee Vacancies please contact Toni for more information

Operations Team

Phone Enquiries – Hilary Boone – 01522 888601

PSN Admin, Enquiries and Website – Toni Dunlop – psnadmin@poliosurvivorsnetwork.org.uk Printing – Imprint Colour Printers, Lincoln

Management Committee [Trustees]

With grateful thanks to the generous legacy from Ms A Brown, we are able to make

membership FREE whilst our funds remain above £10,000.00

Website www.poliosurvivorsnetwork.org.uk Write to us at PO Box 954, Lincoln, LN5 5ER, U.K. Email psnadmin@poliosurvivorsnetwork.org.uk

Phone us on 01522 888601 – will ring you back when we access our messages

UK Members – receive newsletter by post and/or email (overseas members newsletters by email only)

All donations, small or large, towards our work are gratefully received

Donate by cheque to Polio Survivors Network by PayPal to treasurer@poliosurvivorsnetwork.org.uk

By PayPal donate link: https://bit.ly/2KzyAyE

The Gift Aid scheme. Charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer. This ‘transitional relief’ does not affect your personal tax position. You must pay tax at least equal to the amount reclaimed on your donations in the current tax year. If you pay tax at the higher rate, you can reclaim tax relief on your gross donation at 20% (i.e. the difference between the higher rate of tax at 40% and the basic rate at 20%).If you have not filled in a current Gift aid form please contact us and we will email/post you one. Thankyou.

Editors Note: Articles from Polio Survivors and Health Professionals welcomed

The most accepted articles by NHS professionals we have found are:

PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

NB Respiratory and Sleep Problems Section very informative. ——————————

GOOD ANAESTHETIC ARTICLE – English version used by many PPS Groups

POLIO PATIENTS AND SURGERY – Information for health staff.

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf

Printed copies on our headed paper with permission are available.

© Polio Survivors Network – Volume 10, Issue 6/12 [114] February 2021	Page 20
© PHOTO CARDS by PSN member Val ScrivenerSold in aid of POLIO SURVIVORS NETWORKPack of 5 cards £3.95 including P&POrder by email to vala.scrivener412@btinternet.com Or ring Val on 01234 346 397

because WE’RE STILL HERE!www.post-polio.org

Donate to PSN by using the PayPal donate link:

https://bit.ly/2KzyAyE

Goodnight Captain Sir Thomas Moore 13.4.1920 to 2.2.2021 and thank you.

‘Captain Tom’ a true gentleman who served his country not only in WWII but right through to 2020 where he inspired us to join with him across the UK and around the world, raising funds to support NHS Charities Together. An amazing £ 32.79 million by the close of day on his 100th birthday. His family tell us that the last year of his life brought events that were beyond his wildest dreams. He deserved every one.

“Tomorrow Will Be A Good Day”

Hilary’s mobility scooter all dressed up for anAmerican Pioneer Re-enactmentSee page 3

Post Polio Matters Volume 10 Issue 6 Read More »

Post Polio Matters Volume 10 Issue 5

© Polio Survivors Network – Volume 10, Issue 5/12 [113] December 2020	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire PostPolio Library 100+ articles

Polio Survivors Network Newsletter

NOVEMBER 2020 Volume 10, Issue 5 of 12 [113] n.b. Volumes 1 to 6 published under the name LincPIN

A huge thank you for all the following donations received :

Page 2	Contents
Page 3	Editorial, Hilary Boone
Page 4 – 5	Covid-19 & Polio Vaccine – Politics or Science? Simon Parritt
Page 6	Toni Writes …
Page 7	Might I Have Post Polio Syndrome (PPS)? Dr Susan Perlman
Page 8 – 10	A Message from Dr Richard Bruno
Page 11 – 12	People with rare neurological conditions need a much better deal– Neurological Alliance
Page 13	An Interview with our member Marion Carlisle
Page 14 – 17	Did you always tell it like it really was? Hilary Boone
Page 18	Support PSN by PayPal, AmazonSmile, Nomination.
Page 19	Items of Interest – BPF & BMJ
Page 20	Bits That Have Helped
Page 21 – 22	Post Polio News (PPN)
Page 23	Management Committee, Useful Polio Articles
Back Page	Polio Place by PPN, Can you help?

Donations (since last newsletter)
September	October
M Scarlett donation	£5.00	J & E Pullin donation	£12.50
J Barry donation	£12.50
Anonymous (via PayPal Giving)	£13.75
A Jackson donation	£50.00
G Mitchell (via PayPal Giving)	£15.00
Total	£5.00	Total	£103.75

Donate to PSN by using the PayPal donate link:

https://bit.ly/2KzyAyE

Editorial by Hilary Boone

I cannot believe it is already December. What a year this has been for us all both physically and mentally due to Covid 19. I don’t know how you have fared with the paperwork coming from the government and your local authority. Ours has been weeks late and pages in government speak and makes me wonder are they really trying to help us? Our latest letter from the local authority informing us what to do from the 5th November was dated the 9th and delivered on the 21st.

For over 25 years of attending meetings I, and colleagues, have asked for the baseline paperwork to be in simple plain English and not government speak. There are other versions that are needed for those with visual, hearing, learning and other language issues. I love the letter that ends if you require a copy in another version please get in touch but how would you know?

I find as we get older with Post Polio issues we modify how we do actions bit by bit as the need arises. Every change becomes our new normal. Richard has Post Polio Syndrome and Parkinsons [6 others local to us have both and we know more across the world] and I regularly update his What You Need To Know About Me sheets and for Carers and any other professionals who need to know provide a regularly updated daily plan of his needs. I had not realised how out of date my information was till I ended up in hospital for a couple of days. I had dull pain over one eye and when I looked at a face I could not see the right side of their face. Thankfully it was not a stroke.

Once home I realised that some of the medical information on my files and that I had provided had not painted the same picture. E.g. My kyphosis [forward bend of my spine] that has got worse was not seen when sat on my scooter or lying on a bed. I have written up what I realised after I left hospital hoping that it will help others [Page 14].

The most important facts that we need to provide that will help those assessing us and get our muscles graded more specifically are explaining how we do actions now compared with how we used to do them. Ask why have you had to change the way you do the action. In 2004 I asked why I was now scrambling eggs with elbow rotation and it was found that the supinator muscles in my wrists were very weak. This has not been picked up the normal three tests of arms, grip pull and push against me. How many actions can you do once, twice, a few times but then the power drains? How many times have you answered YES you can do an action but not thought to tell the assessor how you do it? Please tell it like it really is.

I would also add that trying any equipment now that you might need in the future so you know how it works and how it feels and what it does can be a great help. Richard practiced transferring with his arm in a sling prior to rotator cuff surgery in 2001 and that made a huge difference post surgery. I have an electric scooter but have borrowed Richards wheelchair a few times. I badly sprained my ankle a few years back and spent a week pushing myself with the other foot round the house in a manual chair. I have now been hoisted so I know how that feels. Have you tried how you would manage with a leg or arm out of action?

We have had requests for information to help restless, itchy and cold legs [Page 17].

Carers, Family and Friends of Polio Survivors – we are happy to speak with you and/or your polio survivor. Personally I have 32 years experience of what it has been like going through new issues. I spent seven years at hospital appointments and my prior polio not even in the equation and because single action manual muscle testing used NO corroboration of my reported weaknesses. Then through years of research with the first few years my giving advice but not doing it myself because ‘I was not there yet’. Hard admitting I was. Then years of learning how to manage life by pacing and resting activities, using aids and assistive devices [boy that was hard till I saw how MUCH MORE I got out of life with less pain, to today.

“Bits that have helped me” from conversations on the phone, Instant Messenger and Facebook polio lists [See page 20].

Page 19 Vitamin D3 – we have been taking this for a couple of years now.

Richard and I wish all our readers a safe and probably video calling Christmas and New Year!

Covid-19 & Polio Vaccine

Politics or Science?

Simon Parritt Counselling Psychologist and Polio Survivor

Covid-19 dominates our lives today and its closest parallel is more than 50 years ago when the polio virus came for young people in wave after wave. How did we cope, we had no vaccine to protect us from being paralysed and killed by recurrent epidemics? But what mistakes were made when polio vaccines were eventually developed and then rolled out in the mid 1950s. The story is told as a medical triumph and with mass immunization programmes, as it reduced polio in just the UK from some 45,000 cases and 750 deaths a year to a handful in less than a decade.

Long Covid and Post Polio Syndrome

Modern medical science has delivered treatments and drugs that have transformed our view and relationship with disease and illness. But there are many subplots and misconceptions hidden within this narrative. Politics, jealousy, national pride and poor organisational planning, which we see so much of now, all played a large part in 1000s of young people, between 1955 and 1957, catching polio when a vaccine was available. Many died and many more survive to this day living with its life-long impact. But polio also had a cruel sting in its tail, even for those who recovered or had minimal or no symptoms. Often decades later they developed what is now called Post Polio Syndrome (PPS) and symptoms including chronic fatigue, pain, unexplained muscle weakness and for some, breathing problems. Is Covid another virus like polio that after the original exposure, infection and recovery has a nasty sting in its tail? And if so, how long is its tail? Whilst hopefully ‘Long Covid’ is not like PPS, we do not know enough as yet. What might be Covid’s impact down the line on younger, mild or even asymptomatic cases. Much like ME, it took decades for PPS to be recognised and less than 20 years ago dismissed as just normal ageing or psychological in origin. Let’s hope we don’t repeat that error again.

Asymptomatic Polio and Covid

Much like Covid-19, 70 per cent of polio cases were asymptomatic, but in the other 30 per cent it caused muscle loss, weakness and paralysis that sometimes required ventilation. A minority but significant number of patients died. However, Covid-19 has a higher death rate in older adults, whilst polio’s major impact was on children and young people, hence its early name of ‘infantile paralysis’. This in itself perhaps challenges our view of how society should manage it. It is a cruel irony that the very generation who survived the polio years, are now at most risk again.

Public Fear and Panic

Between 1947 and 1957 in the UK, there were rarely less than 5-8,000 recorded cases per year and, bear in mind that maybe 70% were asymptomatic and so went unrecorded. Each summer brought another wave of the virus and as local outbreaks were identified by public health schools, swimming pools and public events were abandoned, restricted or closed. Even in those pre social media days, panic and fear spread amongst parents and the population. With no effective treatments and no vaccine yet, infection control was the only tool available to the authorities to control the outbreaks. Not unlike what we see today with the exception that there was much less controversy over public health actions.

The American Experience

America perhaps experienced even more panic and fear. Known as the summer plague, unlike other infectious diseases throughout history which largely affected those in poor, overcrowded

COVID POLIO

and unsanitary conditions polio reached into all corner of society, irrespective of class, ethnicity, culture, wealth or poverty. Perhaps this concentrated the minds of the ‘great and good’ and those with power, influence and wealth for this was killing and paralysing their own children. So much like Covid-19 today, the push for a vaccine became intense and in the USA as early as the 1930s the National Foundation for Infantile Paralysis, known as the March of Dimes was set up by Franklin Roosevelt who had become a wheelchair user himself due to was thought to be polio in 1921.

The Kitchen Chemist

By 1952 the American Jonas Salk had discovered an innovative way of producing a polio vaccine using a live but Inactivated Polio Vaccine, IPV. However, politics, hierarchy and professional rivalry led by Sabin as well as others, were critical, dismissive and sceptical of Salk’s vaccine suggesting it was unsafe and needed much more testing. Indeed, Sabin referred to Salk as nothing more than ‘a mere kitchen chemist’. In spite of this in 1954, with the backing of the March of Dimes, trials involving 1.8 million schoolchildren known as “polio pioneers” were undertaken. In 1955 Salk and his team announced on TV that it had been a success and was ‘safe, effective and potent’. Such was the desire to arrest the virus, that on that very day 12th April, 1955, the vaccine was licensed for use and mass immunisation began in the USA.

Behind the Curve

Scepticism and doubt continued in the UK and not for the first time, we were behind the curve. It was not until 1952 that The National Fund for Poliomyelitis Research was not set up in the UK, some 15 years after the March of Dimes. The UK also continued to be critical of the Salk method but also had an agenda to develop its own British vaccine. This British approach begun to run into a succession of problems and in the end failed to meet production needs and the demand.

The Cutter Incident

Those who had political and professionally resisted the import or licence of the Salk vaccine for years were also handed a golden opportunity to delay even further casting even more doubt on its safety when the Cutter Laboratories in the USA, failed to inactivate the polio vaccine properly. The tragically 120,000 children were injected with live poliovirus and 260 caught polio and 10 died.

The Coventry Outbreak

Perhaps national and professional pride, a clumsy system requiring parents to register for a vaccine, combined with financial considerations meant that mass immunisation didn’t take off in the UK until there was a public outcry following a severe outbreak in Coventry in the summer of 1957. This was over two years after the USA had identified and resolved all safety issues and other countries had started using the Salk IPV vaccine.

The British Reticence

The British history of delay, politics and risk aversion to new treatments, played major a role in the delay that caused thousands to catch polio between 1955 and 1958. This was not new and in the past the BCG for TB and the diphtheria vaccine were adopted by the UK sometime after many other similarly developed nations were using it. This approach continues to this day when the human papillomavirus (HPV) vaccine was offered to girls in 2008 but not boys until 2018. In Australia it was offered to girls in 2007 and boys in 2013 and is now on track to eradicate cervical cancer in their population.

The forgotten Lesson

Covid-19 is not polio and we have moved on in many ways, but there is a danger again that organisational incompetence, political positioning, economics and national pride again become the enemies of effective and timely prevention, intervention and treatment of people with Covid- 19. The untold story of those who caught polio in the UK between 1955-1958 should not be forgotten. Indeed, those of us in this cohort could have had the chance of the vaccine but were

denied it, and have never know that it was not just a bad batch of vaccine that delayed its introduction and use in the UK but health and national politics that was ultimately to blame. Surely we need to learn from history and not repeat it.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc(Hon), BA, CPsSC, MBACP

Chartered Psychologist. HCPC Registered Counselling Psychologist, www.sp-psychology.com Chair Polio Survivors Network simon.parritt@poliosurvivorsnetwork.org.uk

Toni writes…

I don’t know if it is anything to do with turning 40 (where did the time go?!) or whether it is due to the pandemic rumbling on but I have been thinking about the power of kindness.

In these strange times do you find that life can become more and more fixated on some of the smaller things for a while. We can get quite worked up about things which a few months ago we would possibly not have noticed or would have chosen to let slide, realising that in the big scheme of things it really was not important.

A way to combat this that I have found useful is to actively look for extra ways to be kind, to those I already know, and to strangers. It focuses us on the positive and the reactions can make your day too. A few examples:

 Giving a genuine compliment to someone

 Sending flowers for no reason other than to say I was thinking of you

 Holding a door

 Sending a card/writing a letter

 Giving a book you have enjoyed reading to someone else

 Say thank you – especially to those in household/family

 Reconnect with an old friend

 Like or make a comment on social media feeds

 Make someone smile or laugh

 Smile – it is contagious!

What kind things do you appreciate? What memories of kind acts do you have? As ever we always enjoy hearing from our members and any little snippets they would like to include in upcoming newsletters. Also, we are always looking out for any articles you have found helpful or books that have inspired you for our library. Please feel free to share them (contact details below).

Take care and keep safe

Toni x

PS: Some of you will no doubt spot at least 3 calls for help from members in this issue, we look forward to hearing from you.

Email	psnadmin@poliosurvivorsnetwork.org.uk
Post	P.O. Box 954, Lincoln, LN5 5ER
Website	www.poliosurvivorsnetwork.org.uk
Phone	01522 888601 – Answerphone if no reply

Might I Have Post Polio Syndrome (PPS)?

Neurologist Dr. Susan Perlman is the Director of the Post-Polio Clinic at the University of California, Los Angeles (UCLA) Medical Center.

Most experts require some combination of the following to make a diagnosis of PPS:

 A confirmed diagnosis of paralytic poliomyelitis in the past [see Editors note]

 A period of partial or complete functional recovery followed by an interval (at least 15

years) of stable neurological function

 Gradual or sudden onset of muscle weakness, fatigability, muscle atrophy, or muscle

and joint pain

 Possible problems breathing or swallowing

 Persistent symptoms for at least a year

 Exclusion of other neurological, medical, and orthopaedic problems

Not all polio survivors develop PPS, though as they age, they may naturally develop premature tiring and aging of overextended neural muscle units. Furthermore, over half of polio survivors who go to their doctor with new symptoms do not have PPS. Notes one expert: “Sixty percent of polio survivors with new symptoms have a medical or neurological problem that is unrelated to polio, and that problem may be treatable. Half the remaining patients have increasing orthopaedic issues related to their polio residua.”

What Are the Risk Factors?

Though every case is different, the following factors may increase the risk of developing PPS:

 Severity of initial polio infection. Generally speaking, the more severe the initial

polio, the higher the risk of PPS

 Age at initial onset. Those who got polio at a younger age are actually less likely to

face PPS

 Recovery. Surprisingly, the greater and more complete the initial recovery, the

greater the chance of eventually developing PPS

 Physical activity. If a polio survivor has been in the habit of exercising to exhaustion

over the years, this may increase the risk of PPS

Is There a Cure?

Just as there is no confirmed etiology, or cause – and thus no definitive laboratory test – there is really no cure at the present time for post polio syndrome (PPS). There is, however, treatment revolving around a three pronged rehabilitation approach. Says one expert: “More than 80% of patients with PPS will demonstrate benefit with rehabilitation techniques.”

1. Life style modifications

▪ energy conservation ▪ assistive devices ▪ non fatiguing exercise ▪ staying warm

2. Medications and supplements

Though many medications, prescription as well as natural supplements, have been tried, none has been proved to help. There are many anecdotal reports of improvement, but further study is needed. Keep in mind that herbs can interact with prescription medicine, so always let your physician know what you are thinking of taking.

3. Quality of life

“The strongest medicine that a practitioner can provide to a patient with PPS is education and encouragement. . . . Patients who were better able to make lifestyle modifications (those with better problem solving skills, more accessible environments, more access to information and support, and a readiness to compensate with assistive devices) adapted better in their daily occupations.”—Dr. Susan Perlman.

Editors Note:- The diagnostic criteria PSN uses adds findings on history, physical examination results, and laboratory studies compatible with polio virus damage of the central nervous system in earlier life [Halstead L, MD – Silver J, MD Am. J. Phys. Med. & Rehab. Jan/Feb 2000].

https://www.papolionetwork.org/ encyclopedia.html

A Message from Dr. Richard L. Bruno:

During the past 36 years I’ve written three books and more than 600 articles, book chapters, monographs and commentaries about polio and the cause and treatment of Post-Polio Sequelae. This work was done for the medical community and, more importantly, for polio survivors. Most of the medical journal articles, chapters and monographs have been uploaded into the Post-Polio Library on the International Centre for Polio Education website at postpolioinfo.com.

More than 500 commentaries (often answers to questions from our Post-Polio Coffee House members on Facebook have been expanded, edited and uploaded to the Pennsylvania Polio Survivor’s Network “Bruno Bytes” page by their volunteer team. But about one-third of my articles, with important information for polio survivors and their families, have been sitting on my computer, just gathering electrons. That ends here.

The International Centre for Polio Education and Pennsylvania Polio Survivor’s Network have partnered to update, edit, then index and upload for easy retrieval and reading, everything I’ve written on polio and PPS to this new Internet based ENCYCLOPEDIA of POLIO and POSTPOLIO SEQUELAE.

This will be updated with new articles and commentaries on a regular basis to make sure that the post- polio community has the latest information about the cause and treatment of PPS. I can never adequately thank Carol Ferguson and the Pennsylvania Polio Survivor’s Network for taking the lead in providing information for the world’s polio survivors, for tirelessly editing and indexing my writings and providing a home for the ENCYCLOPEDIA.

So, to the world’s estimated 15 million-plus polio survivors: Read on!

www.papolionetwork.org/encyclopedia.html

The Effects of Cold on Polio Survivors – Dr. Richard L. Bruno, HD, PhD

Link: https://bit.ly/3mW6DCZ

Polio survivors are extremely sensitive to changes in temperature. At merely cool temperatures, most polio survivors report that their feet have always been cold to the touch, their skin a purplish color. However, as polio survivors have aged, 50% report “intolerance to cold” and that their limbs have become more sensitive to pain as the temperature decreases (Owen, 1985). Cold was reported to cause muscle weakness in 62% of polio survivors, muscle pain in 60% and fatigue in 39% (Bruno & Frick, 1987). When polio survivors were cooled in our laboratory from 86°F to 68°F, motor nerves functioned as if they were at 50°F and polio survivors lost 75% of their hand muscle strength (Bruno, et al., 1985a). Although during the same study polio survivors were found to be twice as sensitive to pain as those without polio, no increase in pain sensitivity was seen at lower temperatures (Bruno, et al., 1985b).

The reason polio survivors have such trouble with cold is that the parts of the central nervous system that should control body temperature were damaged by the poliovirus. In the brain the hypothalamus (the “automatic computer” that controls the body’s internal environment) was damaged by the poliovirus, including the body’s “thermostat” and the brain area that tells your blood vessels to constrict (Bodian, 1949). In the spinal cord, the nerves that carry the message from the brain that tells the capillaries in the skin to contract when it’s cold were also killed by the poliovirus (Bodian, 1949).

PA POLIO SURVIVOR’S NETWORK, Pennsylvania, USA

Papolionetwork.org

includes

Website papolionetwork.org

Page 9

-Thus, polio survivors are unable to stop warm blood from flowing to the surface of the skin as the outside temperature drops. This allows loss of heat from the blood near the surface of the skin and causes the limbs to cool. When the limbs cool, arteries carrying blood to the skin and veins that should carry blood out of the skin narrow, passively, as they get cold, trapping blue venous blood in the capillaries and causing the feet to look blue and to become even colder. The cold skin chills the motor nerves, causing them to conduct more slowly and to be less efficient in making muscles contract. The cold also chills tendons and ligaments (imagine putting a rubber band in the freezer) making movement of weak muscles more difficult. As polio survivors know, it takes hours under an electric blanket or a long, hot bath to warm cold legs and regain strength. contract.However, when polio survivors take a hot bath, blood vessels do exactly the opposite of what they do in the cold. Polio feet and legs become bright red as arteries and veins relax and blood rushes to the skin. Then, when polio survivors stand to get out of the tub, they can feel dizzy or even faint as blood pools in their legs and causes their blood pressure to drop (see Bruno, 1997). The pooling of blood in the feet also explains why polio survivors’ feet swell in the heat, swelling that increases as they get older. And polio survivors’ easily losing body heat explains why they have an increase in symptoms, especially cold-induced muscle pain, as the seasons change, especially from summer to winter.Polio survivors need to dress as if it were 20°F colder than the outside temperature. They need to dress in layers and wear heat-retaining socks or undergarments made of polypropylene (marketed as Gortex or Thinsulate) that should be put on immediately after showering when the skin is warm and dry. Polio survivors need to remind doctors that EMGs or nerve conduction tests must be performed in a room that is at least 75°F to prevent false abnormal readings and that a heated blanket is necessary in the recovery room after polio survivors have surgery (Bruno, 1996).REFERENCESBodian, D. (1949) Histopathological basis of clinical findings in poliomyelitis. American Journal of Medicine, 6, 563-578.Bruno, R.L., Johnson JC., Berman W.S. (1985a). Motor and sensory functioning with changing ambient temperature in Post-Polio subjects: Autonomic and electrophysiological correlates. In L.S. Halstead and D.O. Wiechers (Eds.), Late Effects of Poliomyelitis. Miami: Symposia Foundation.Bruno, R.L., Johnson, JC., Berman, W.S. (1985b). Vasomotor abnormalities as Post-Polio Sequelae: Functional and clinical implications. Orthopedics, 8(7), 865-869. Bruno, R.L. (1996) Preventing complications in polio survivors undergoing surgery. PPS Monograph Series. Volume 6 (1). Hackensack: Harvest Press.Bruno RL. (1997) Chronic fatigue, fainting and autonomic dysfunction: Further similarities between postpolio fatigue and Chronic Fatigue Syndrome? Journal of Chronic Fatigue Syndrome, 3, 107- 117.Owen, R.R. (1985). Polio residuals clinic and exercise protocol: Research implications. In LS Halstead and DO Wiechers (Eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation.Cold and Purple “Polio Feet”A Bruno Byte from. Richard L Bruno, HD PhDwww.papolionetwork.org/uploads/9/9/7/0/99704804/polio_feet.pdfQuestion : Why are my feet and lower legs always ice cold and purple, especially in winter? My doctor checked my blood flow and says it sounds “clear.” I’ve tried heavy socks and leg warmers. What’s going on? What can I do to stay warm?Dr. Bruno’s Response : You have “polio feet”, and legs that are always cold and purplish. Your blood flow sounds “clear” because your arteries are open. It’s your veins that are the problem because they are too “open.”

Polio survivors have trouble with cold because the neurons in the brain and spinal cord that cause the veins to contract were killed by the poliovirus. You are unable to stop warm blood from pooling in the veins near the surface of the skin, causing the feet to look purple or even blue. As the outside temperature drops, pooling allows the loss of heat from warm blood near the surface of the skin and causes your tissues to cool. Motor nerves and muscles – lying just below the surface of the skin – cool. Cold motor nerves conduct more slowly and may be less able to make cold muscles contract quickly and forcefully. Tendons and ligaments also get cold and become less elastic (like putting a rubber band in the freezer) making movement of weak muscles more difficult. Cold causes muscle weakness in 62% of polio survivors, muscle pain in 60%, and fatigue in 39%. It takes hours under an electric blanket or in a long, hot bath to warm cold legs and regain strength.

We found in our very first study of PPS that polio survivors lose 75% of their strength when the temperature drops from 85 to about 65 degrees. We also found that polio survivors’ motor nerves function as if it’s 20 degrees colder that the actual temperature. So, polio survivors should dress as if it’s 20 degrees colder than it actually is. The trick is to stay warm from the get-go. You should dress right after showering when your skin is warm and red. Try heatretaining sock liners or even long- johns made of the woven, breathable plastic fiber polypropylene (marketed as Gortex or (Thinsulate). Then put on warm socks or try batterypowered socks or ski-boot insoles. Also, keep your feet elevated as much as possible during the day.

Remember that changes in season are also difficult, since your body can’t figure out whether it’s warm or cool. Polio survivors report more muscle pain, especially headaches, during seasonal changes. Regardless of the season, whether you’re being chilled by a Northeast wind in November or by excessive air conditioning in August, dress in layers to control your body temperature, because your body can’t. Try not to wear skirts, dresses or shorts between Labor Day and Memorial Day [Labor Day was September 7th 2020 and Memorial Day May 31st 2021].

The Encyclopedia of Polio and Post-Polio Sequelae contains all of Dr. Richard Bruno’s articles, monographs, commentaries and “Bruno Bytes”

https://www.papolionetwork.org/encyclopedia.html

Polio Survivors Network thanks Carol Ferguson and PA Polio Survivors Network for providing this information on their Website for the benefit of polio survivors In the Keystone State [Pennsylvania] and Beyond [the rest of the World.]

Restless, itchy legs?

Any experiences or tips to share with our member?

Please see page 13

12 November 2020:

People with rare neurological conditions need a much better deal

A new report by the Neurological Alliance is calling for better treatment and care for the 150,000 children and adults living with a rare neurological condition in England.

The hard-hitting report, ‘Out of the Shadows: what needs to change for people with rare neurological conditions‘ includes extensive input from member charities of the Alliance, in addition to expert clinicians.

The report points out that while the number of people living with rare neurological conditions equals the number who have other conditions such as some types of cancer, people with rare neurological conditions are all too often left behind when it comes to accessing the care and treatment they need.

In addition, more than 200,000 people with neurological conditions are expected to be waiting for specialist appointments by the end of the year. People with rare neurological conditions risk experiencing further delays and gaps in their support due overstretched services and waiting lists exacerbated by COVID-19.

Specifically, we are calling for:

• Changed perceptions around rare neurological condition: just because they are complex

does not mean they cannot be managed well, says the report. People with rare neurological

conditions are entitled to equal access to care and treatment.

• Speedier access to specialists and a diagnosis: 4 in 10 charities surveyed recently for the

report said diagnosis of the people they represent takes, on average, 3-5 years. The report

points out that there needs to be greater awareness of rare neurological conditions in primary

care, so people are more quickly referred on for a specialist assessment when they have

neurological symptoms – and they can benefit more quickly from available treatments and

support.

• Faster access to new treatments: the UK often lags behind other countries in Europe when

it comes to approving and funding new treatments for rare neurological conditions. For

example, the Batten Disease Family Association told the Alliance in our recent survey: “The

NICE process takes literally years of upset and our families don’t have years; two children

died waiting to access Brineura.” Spinal Muscular Atrophy UK also told the Alliance “The

paediatric roll out of Spinraza has been quite good, but the treatment roll out for adults hasn’t

progressed at all well.”

• Improved mental health support: less than a third of people with rare neurological

conditions feel they are getting the mental health care they need according to the Alliance’s

2019 Patient Experience Survey. Again, in our more recent survey of September 2020, all 10

charities who responded reported that the mental health needs of those they represent, were

either ‘not being very well met’ or were ‘not being met at all’.

• As a matter of course, information should be provided to people with rare neurological

conditions and/or their families on diagnosis: again, the Alliance’s Patient Experience

Survey 2019 found that just a third of people (or families) with rare neurological conditions are

provided with written information about their condition at the time of diagnosis to help them

understand more about their condition and care choices.

• High quality social care and home adaptations are not just ‘add on extras’ for those

that need them: the report points to recent research by the Motor Neurone Disease

Association (MNDA) which found that some people with motor neurone disease do not always receive the home adaptations they need before they pass away, due to lengthy delays in service provision and the cost. People with rare neurological conditions, and their families, need proper well-funded support in the community.

Georgina Carr, Chief Executive of the Neurological Alliance, said:

“Taken together, rare conditions are not that rare at all – 1 in 17 people will be affected by a rare condition at some point in their lives, and it has been estimated that nearly a third of genetic rare conditions are neurological or have neurological symptoms. [See Editors Note] Yet, poor public awareness and a lack of investment in services for rare conditions has meant that, for too long, people with rare neurological conditions have experienced long waits for a diagnosis, poor care coordination and insufficient information provision.”

“We hope that this report will bring about a sea change in how rare neurological conditions are viewed, both in the medical profession and in wider society. It’s time that rare neurological conditions came out of the shadows.”

The report includes the experiences of a number of people with neurological conditions. Livvy, aged 19, has a rare, undiagnosed neurological condition that leaves her in a wheelchair, needing a feeding tube, and having multiple seizures every day. Bradley’s dad, John, died with progressive supranuclear palsy (PSP) at the age of 62, before we was even diagnosed, despite his mobility deteriorating quickly over just a few years – clinicians were not able to agree on what condition he had. Sam, aged 54, has Huntington’s, another progressive neurological disorder; he also has related mental health problems which have not been successfully addressed and he has been in and out of psychiatric wards. Now, tragically, Sam has terminal cancer.

Amanda Mortensen, mother of Livvy and Chief Executive of the Batten Disease Family Association (BFDA), said:

“We first had that gut-wrenching sense that she wasn’t developing like her peers when she was around 9 months.” Livvy is now aged 19: “Livvy has been tested for a myriad of conditions that cause her relentless epilepsy, but we still don’t have an answer as to why.”

Amanda added: “We hope the findings of this report will give people with rare neurological conditions a voice, influencing decision-makers as we shape the services of the future post Covid. We represent a multitude of unique conditions, yet our journey has shared challenges and we speak together on the need to improve the diagnostic odyssey, access to treatments, awareness and information.”

Dr Wendy Edwards, PSPA said:

“The launch of the ‘Out of the Shadows’ report has given us a great opportunity to come together as a collective with the Neurological Alliance, to shine a brighter light on the challenges people living with rare neurological conditions such as Progressive Supranuclear Palsy and Corticobasal Disorder (CBD) face, and the crucial role charities play in providing support and lobbying for more rapid diagnosis and access to co-ordinated care.”

Link: https://bit.ly/37ATjgz

Editors Note – Yes Post Polio Syndrome is classed as a Rare Disease.

Rare Disease UK

The European Union defines a disease or condition as rare if it affects fewer than 1 in 2,000 (1) people within the general population. Currently, there are over 6,000 (2) known rare diseases and new conditions are being described through medical literature on a regular basis, www.raredisease.org.uk

Editors Note: There is a link to Polio Survivors Network on this website:

National Organisation for Rare Diseases Link: https://bit.ly/3ge9MLu

An Interview With … Marion Carlisle

Q: Tell us a little about yourself and your polio journey

My mother is very sure I had polio when I was 2 (1960). She said it was the worst week of her life, though I was not hospitalised. I recovered with slight walking impediment for a year. Then apparently nothing until I was 39 when symptoms started: unexplained temperature rises, progessive fatigue.

Q: When did you first realise you had PPS?

I self-diagnosed P.P.S in 2003 (age 45) after reading Dr. Bruno’s ‘The Polio Paradox’. So much in his book rang bells. There was the gradual onset of unexplained symtpoms in my late ’30s. The fact that all blood tests fell into the ‘normal’ range and yet I could hardly function at all sometimes.

Q: How did you get a diagnosis?

I’ve been living in West Wales since 2002 and haven’t had any official diagnosis or seen any expert in the field. My local GP accepted my self-diagnosis but apart from prescribing Q10 on the NHS, I’ve had no medical help.

Q: What has helped you to cope?

I’ve been following protocol for M.E. / C.F.S patients, ie pacing, supplements and a low carb / high protein diet for many years. Accepting limitation rather than fighting it has been a key. Although I don’t need physical aids and can walk OK, new arm weakness means I don’t lift heavy things – including a half-full kettle. A background in meditation, being in the ‘here and now’ as much as possible helps me to accept what I can’t change. Perhaps mental fatigue is the most challenging – not able to read or engage socially when I’m very exhausted. Then recharging the batteries, alone and doing nothing is the only help.

Q: Is there anything that our members can help you with currently?

Yes, I wonder if any other members have experienced constant tingling sensations, like pins and needles. This tingling started just in the soles of my feet, then progessively moved up my body. This used to disappear with prolonged rest. Now the tingling never goes away and is my whole body, including my head. I also experience a strong pulse in my adrenal area, especially in the night and on waking. There seems to be no medical reason for this.

Q: What one piece of advice would you give to other polio survivors?

I know I’m not facing challenges like many polio survivors. I can walk and have been working part- time musically for the last 10 years, finding more strength by sticking to the diet and supplements protocol. So advice? Not really. I’ll just say that feeling empowered – in whatever way that means for a person – is vital. Celebrating ones talents, however small. Enjoying the world around – the elements, the natural world and being able to receive and give to others. Also spiritual gifts are so important. Through undergoing limitation (not something I’d wish on anyone), I’m more receptive to the essentials in life. There is a silver lining in having to let go ambition!

Editors Note:- I am not medically qualified but have 24 years of talking with other Polio Survivors and many health professionals. A neurolgical physiotherapist in the late 1990‘s told me that if we had restless, jiffly, aching legs then we should get our feet up every time we can. This helps the blood flow back up our legs and gets the waste products back out of our body instead of pooling in our feet. I got an electric rise leg raise chair and it made a huge difference. When unable to get feet up at meetings or pps conferences, long flights, etc then back it comes. I touchtype and use my laptop on my lap on my chair and have the following additions. To support neck have a pillow to fill the kyphosis curve of neck forwards, my elbows rest on the arms of the chair, left hand rests on the front of a 17“ laptop keyboard and right arm swivels from the elbow. If I forget to raise my legs then its not long before my shoulders and left arm really ache.

Question: Did you always tell it like it really was?

Answer: “No, but since I learned about Post-Polio Syndrome and how to use Pacing and Resting activities to better manage my life, I do now”

Question: Has it crossed your mind to self-assess again and update any information that you have prepared to take with you to medical appointments, into hospital?

I ask because I had not done this!?

I have updated my husbands regularly but not mine because I did not think much had changed.. That was until I started looking at the changes over the last few years. PSN have found over the years that when sharing our stories there is always someone else that picks up some information to help them. Here is what I learned.

I got a pressure pain round my left eye and lost patches of vision. GP sent me to A&E and after a negative Covid test they admitted me for 36 hours. Once home and talking about my time with daughter and carers there were a few points that occurred to me that I could have done/said that might have made things easier for myself and the staff.

I will start by saying that for the most part I was exceptionally well treated, assessed thoroughly and as soon as possible for which I am very grateful. I also saw and heard first hand how hard a job it is for the staff having to work hours on end wearing a mask. They deserve more than just our thanks.

The reasons we have decided that it did not occur to me were because:-

1. I had not thought about updating my What You Need To Know About Me sheets for some

years as I had not stopped and thought [maybe I did not want to see the changes] am I

doing anything a different way? Soon as I thought about it I knew I was, duh!

2. I had not realised – my daughter told me this – that they would consider me an old lady at 73

and not someone with a huge amount of knowledge about post polio and my condition.

3. My medical file is a few inches thick and it did not occur to me that there might not be an

overall sheet of which departments I have been seen in. [Four years at eye clinics after the

fall but before my prior polio was added to the diagnostic equation]

4. Those couple of days all I was thinking about was my current symptoms, the scan, the three

and a half hours in the eye clinic and the MRI.

5. Plus wondering how long am I going to be here and who would look after Richard if I had to

stay here much longer. A huge thankyou to our Carers who managed him those 36 hours?

After a few hours of gaps in my vision I rang our GP surgery and was given an appointment to see a GP. I had not met the doctor before but was sent straight to A&E for testing. I can only say how impressed I was at the way patients were treated, ensure all had masks on, kept 2 metres apart, dealt with quickly, assessments, tests and reviewed. Chatting with others nearby we agreed it helped reduce some of the worry about being in a hospital during Covid.

I was triaged then seen by Doctor and was sent for a scan of my brain [yes there is some there] but then told that I needed an MRI and to see an ophthalmologist and would need to be admitted to speed up the appointments.

I was given a Covid test which made me look like a large rabbit for a few minutes because my nose would not stop twitching. The result was negative so I was taken up to a ward. I never saw the name so had no idea what ward. Thankfully room for my scooter by my bed and I was given a lovely pink nightie and was soon in bed about 9pm.. I had been drinking all day about 2 litres of the three that is my norm when I was told that I was now ‘Nil by Mouth’ and put on a drip.

Issues that I wished I had realised I needed to make the doctors aware…..

A. I was mostly lying on the bed so hardly anyone saw how bent forward I am when

standing. [I raise my legs every time I sit down at home but their armchair did not have that

facility so I laid on the bed.] Therefore hardly anyone got to see me standing and my kyphosis –

bent forward posture. Covid and less treatments this year has caused the forward curvature of

my spine to have more body leaning over my legs so use a walker all the time to prevent falling.

When I lie on my back on a treatment couch I have to have a pillow to support my head. [I now

have photos on my phone/iPad.]

B. I went down to the Eye Clinic seated on my electric scooter. I found that I could no

longer get my chin on the rest and my forehead up to the different eye testing machines on the

ones they have at the hospital. They did not seem to understand that this was a physical issue

and the best I could do was hold my forehead against the right bit of the machine and keep my

chin still. All I did was transfer a few feet from scooter to chair.

C. Getting up from swivel chair. My legs are weak so I have to push up with my arms to stand from a chair. The eye clinic chairs – and I have raised the issue in earlier years – are swivel without arms and on wheels. The offices rarely have anything that I could use to help me stand. Two years ago I tried five different places in the room to try and get off their darn swivel chair and ended up just getting down on the floor [can you imagine her face?] asking her to open the door so I could crawl out and get up using my scooter that had to be parked outside the room. She was horrified and was saying I will call for security to help you and a couple of nurses ran towards me grabbing my arms thinking they were helping. I called out in a loud voice ’Let go, and then sang ’I do it my way’ much to the amusement of the waiting room that burst out with applause. I cant sing but I did it to cover my embarrassment, This time I just scooted the chair from the room next to my scooter and transferred across. I had developed a way of getting up onto my 3 wheel scooter [need to put my long legs each side of the tiller] after falling off one day turning on a slope.

D. After the fall in 1988 that triggered my PPS I had had some visual issues and spent four years being tested at two hospitals without a definite diagnosis. Now 2020 and after three and a half hours of test after test, drops, and scans and all sorts [cannot fault the number they did or the way they got through them] I was told there was nothing significant. So what was causing this? I suddenly remembered the issues years before and I had eventually found out through 3 others on a polio list and an Australian Optician that the issues could be weaker muscles from polio that move the eyes sideways. I took the information to my Optician and he examined me then read the information examined me again and confirmed this was my problem, if I moved my head no distorted vision. If I moved my eyes left and right and repeated it then the left eye moves slower and causes some distorted vision. The doctor tested this and confirmed it to another man training but only asking me to do it a couple of times he told me ’it is not much, don’t worry about it’. I did not think to tell them that this gets worse as the day progresses if I don’t rest my eyes. At the time I had not remembered that the opticians letter that explained all this is only on my GP records. I need to get a copy and keep it in my information file.

After 3.5 hours at the eye clinic still no food and drink now 21 hours I was back on the ward and just about to be attached to the drip again when a Porter arrived to take me for an MRI.

E. On arrival at MRI I did explain that because of kyphosis I cannot lie flat and would need a pillow under my head and my legs up as I had fused lumbar vertebrae. I also explained that I had a trapped nerve in my cervical vertebrae that would be triggered again doing this. I was told not to worry they had dealt with many different folks. What I did not like was the fact that I had to wait for half an hour listening to the man in front of me being G, G, Gd.

Then it was my turn. I did not look at the machine I just transferred to the conveyor belt and laid back but my head is still three inches above the bed. Even with their little pillow I was still inches off and I put my knees up to help but they wanted my legs over a rolled piece that meant that I could not push up on my heels to help get my head lower. I did not see what they did I kept my eyes shut. Earphones were put on my head and they went to back me into the machine.

My trapped nerve had kicked off with pain all down my left arm, my shoulders were crunched up [also have damaged acromion joint on left shoulder]. I explained I was in a lot of pain and asked how long. I was told that the first most important scan is 2 minutes [20 minutes all together] so I agreed and in I went still with eyes shut. I said nursery rhymes over and over again to keep my brain occupied and suddenly remembered I had done the same thirty years ago. That finished and a voice said can you do another two minutes it is also important., OK although tears were falling down my face from pain. That ended and “can you manage just a bit more” but I said sorry I cant do anymore because of the pain. I was pulled out.

Next day on the ward doctors rounds I apologised that I could only manage that much time in the MRI because of the pain as I could not lie flat. They had my records – which I see from the discharge sheet states chronic neck pain – but there are so many pages in there they may not have realised that I have an abnormal spine, T11 and 12 are one bone as are L2,3,4. The trapped nerve at C7. I never thought to stand and demonstrate. Had I done this earlier I am sure it would have been easier to plan what was needed to get the MRI completed.

F. Another issue raised by my daughter. I had come home and the next day felt as if I had just got over flu, about a third of the energy I had earlier that week. Her immediate reaction was “you sound if you are low on electrolytes, how many bags of saline did you get through?” ’I replied, “Only one a day and sometimes like when I was at the eye clinic and then MRI it was over five hours without.” “Mum!” you know the tone of voice… “Why didn’t you tell them how much fluid you drink each day.” I had mentioned to at least two of the nurses that I drank 3 litres a day but why would they during their shift think of anything other than does the bag need changing. To lose weight I have had sessions of fasting drinking only water with electrolytes and some plain and can fast with no hunger, fainting or anything but feeling great for five days. I did as she told me and immediately went and got some electrolytes into me and started to feel better but it took a few days to get back to my normal energy levels, just from 36 hours!

G. The next issue is being seen by an Occupational Therapist. I am 73 and got asked the memory questions. I did ok except I could only remember three of the five words. Then she said “I will take you into the kitchen and see if you can make a cup of tea etc.” Luckily I thought I have photos on my iPad of my kitchen and bathroom so I can show how we have adapted our place so that I/We can do what we need to do. She happily told me not to worry she could alter the heights of the units for me. I explained that Polio Survivors have their own way of doing actions and they are all different because our polio nerve damaged muscles are all different. That I have to use short arm levers and to work in the kitchen hold on with one hand or the other and if I need to use both hands I lean against the work surface. I have to rest every few minutes. My kitchen is small but set out so that I have what I need where I need it. She still wanted to assess me in their kitchen again reaffirming that she could alter their unit heights. Sadly I was discharged the next day before I got the chance to see how hospital based assessments are carried out. When it becomes possible again I will contact the department and ask for a look round and demonstration of how they assess and if there any points that I can raise to explain how Polio Survivors and others with neuromuscular issues might have difficulties I will.

For years I have found it hard to explain that there might be a better way of doing an action but not if our body does not work that way. This was the main reason I was so keen to be part of the User/carer team at the University of Lincoln working on the new Masters Occupational Therapy Course right through to validation. The main point that I had raised was that many polio survivors were reporting difficulties with assessments. This is the piece of equipment for that problem’ when for some of us it wont help us at all and other solutions need to be looked at. I used to work for Social Services many years back so I do understand the need to provide the most cost effective solution for the problem. However, it is not cost effective to provide equipment that will not help and it just get put in the garage. I suggest that you have some photos taken of your home and your adaptions. If possible get someone to make short video clips of you doing different actions so that you can show the what’s and why’s.

H. Pharmacy rounds. I am only on one medication now but the Pharmacist that came round had picked up from my GP records that it still showed I was taking medication that I have not

taken for some years. It may be useful for you to check your prescription sheet to see if you have any items on yours that you no longer take. A good idea that we do is to have dosette boxes for a couple of days in our going out bags. It is a good idea to carry your latest prescription sheet with you as well that will show when you last received each item.

I. Cannulas. I had had one fitted some years ago in a position that meant that I could not do actions of daily living that I needed to do the way I need to do them because of where it had been inserted.

This time I was able to show how I needed to move about on the bed and get up and down from it and ask that it be inserted where it would not cause me any problems. ’No problem, would here be ok?’ It was ok.

However, I missed the fact that most of the time I kept my left arm in one position and I ended up with pain in my biceps. Then remembered back to early 2010 when I had the same pain so knew what to do and it worked.

In 2010 I raised the issue of pain in my left biceps to our Chiropractor Dr. Barnes-Heath. He asked ‘How long have you had the pain?’ I replied about six weeks. He asked ‘what did you start doing six weeks ago?’ I thought and simulating the action said ‘Oh I am making a cross stitch picture for Alison’s Wedding but it is my right arm that moves… Oh, but it is my left hand that holds the material in one position.’ Darren laughed at my self diagnosis and said ‘I know you are not going to stop cross stitching what you need to do is change the way you hold the material every few minutes.’ It worked!

It would be really helpful if you let us know if my sharing all this has triggered something for you. Please tell us your stories of attending appointments etc so we an increase our database of information that could help other polio survivors and others with neurological conditions.

——————————————–——————————————–—————————————-

Can You Help?

A new member has reached out to ask how you cope with the cold temperatures please. A suggestion has been made to the polio survivor that they take pain medication to help with the cold but they are not keen to do this. Any tips you can share about keeping warm?

Thank you in advance.

Please email info@poliosurvivorsnetwork.org.uk or post to PO Box 954, Lincoln, LN3 4RA

————————————————————————————————————–-

Editors Comment: In my early post polio years and in the winter I would still pop out in the garden to have a quick word with neighbour wearing just a T shirt. I had swum in the North Sea for eleven years May to September as a lifeguard the cold does not bother me.

Then I got an electric scooter March 1997 and after a couple of months was persuaded to use it more and found I was able to spend hours at an Antique Fair, shopping mall, museum, State parks, etc. Doing more for less energy, it carried my bags, brilliant, my quality of life had increased a thousand fold. Being honest, I still try not to think about what I look like on it.

Then winter came and I was at an antique fair with no gloves on [I am hardy I don’t need gloves] when I went to get off to use the disabled porta loo and found my hands were so cold they were fixed round the tiller arms. It suddenly dawned on me that I was not ‘feeling the cold’ not realising that my hands were getting cold. Until I warmed them up they would not move. Time to look at the ’old ladies shops’ for socks, gloves, long johns, vests [no not liberty bodices] etc. Wear layers of clothing so its easy to change to my temperature needs. Plus by a woollen hat [I think I look awful in hats but now I don’t care what I look like so long as I am warm].

I look forward to hearing others ideas.

To All Our Lovely Members

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Items of Interest

BRITISH POLIO FELLOWSHIP

Coronavirus Survey

Our Expert Panel are currently conducting a survey to better understand how the current Covid-19 pandemic has effected Polio survivors. If you would like to take part please download the survey on our website www.britishpolio.org.uk/coronavirus-survey and either send to central office by post or email to joanna@britishpolio.org.uk

Pain Guide

The Expert Panel has also just released a new extensive guide on pain management. It can be accessed on our website on the factsheets page www.britishpolio.org.uk/factsheets

THE BRITISH MEDICAL JOURNAL

Improving our resilience to microbes could be an important non-drug intervention in the fight against Covid19, in addition to ways of preventing transmission, and I agree all public health advice should be evidence based.

One non-drug intervention might be a vitamin D supplementation program to rectify the widespread vitamin D deficiency in the UK which is largely due to a lack of outdoor-living. By now it is well established knowledge that optimal vitamin D is needed for optimal immune function and best defence against microbes, evolution designed humans like that (1). Recently existing evidence was reviewed comprehensively by Linda Benskin (2) showing a causal link between lower than 75 nmol/l blood levels and incidence and severity of Covid19. For comparison, the average D-blood level in England is 45 nmol/l, in Scotland 37 nmol/l (3,4). Several other studies have since also found correlations between vitamin D levels and severe outcomes in Covid19, including in 4.6 million Israelis (5-7). Now, a randomised controlled trial from Spain showed a significant benefit to those receiving vitamin D during hospital admission for Covid19 with more than 90% reduction in ICU admissions and 100% reduction of mortality (8). Although the study had only 76 participants and the authors called for a larger study, there cannot be any doubt, that there is now sufficient evidence for public health departments to engage in implementing a vitamin D repletion program before the next winter rise in severe Covid19 cases.

Unfortunately Public Health advice for all to take a small D-supplement of 10 mcg (400 IU) is insufficient for adults to elevate blood levels to the required optimum, as well as being poorly taken up by some of the Covid19 high risk groups in areas of deprivation.

First, do no harm!

But harm is presently done by tolerating an unacceptably high degree of Vitamin D-deficiency in the UK thereby risking poor outcomes of Covid19.

 National Library of Medicine https://bit.ly/2IccDrR

 Research Gate https://bit.ly/3ooH6Cv

 NICE https://bit.ly/3oujJYp

 Food Standards https://bit.ly/2JT7hSI

 National Library of Medicine https://bit.ly/2VLGk6v

 The FEBS Journal https://bit.ly/2Ie8yDH

7. MedRxiv https://bit.ly/33LLQua

8. Science Direct https://bit.ly/3gakP8y

Editors Note: On advice we have been taking Vit D 3 for over two years now.

Bits that have helped

N.B. These are members and other Polio Survivors comments from discussions about issues we are dealing with and are provided to give you a larger database of information that you can share with your health professionals, family and friends. We must advise you that you need to discuss this with the health professionals that you are seeing to ensure there is no contraindication that means that you should not do any of the items mentioned here.

Guts

“Asteroids” is what my husband answered to the nurse when asked about the constipation he suffers from low gut motility from polio [slow movement through the gut means more water taken out] plus the medications he takes for Parkinsons.

Vitamin C is a natural antihistamine, which means it can lower histamine levels and mitigate allergic reactions and symptoms. Consume plenty of Vitamin C rich foods, like tropical fruits, citrus fruits, broccoli and cauliflower, and berries. Once your body has had what it needs [more if you have a cold, hay fever etc] then it is eliminated from the body and it speeds up the process of food through our guts. We started having Vit C tablets a few years ago but for the last year have changed to taking ascorbic acid powder – nothing else added – and have been taking two of the tiny spoons provided in a bottle of water or diluted fruit juice. We usually have one dose a day but if that does not have the desired effect then we add it to a second drink.

Restless, jiffly, aching swollen legs

A neurolgical physiotherapist in the late 1990‘s told me that if we had restless, jiffly, aching legs then we should get our feet up every time we can. This helps the blood flow back up our legs and gets the waste products back out of our body instead of pooling in our feet. I got an electric rise leg raise chair and it made a huge difference.

When unable to get feet up at meetings or pps conferences, long flights, etc then back it comes.

I touchtype and use my laptop on my lap on my chair and have the following additions. To support neck have a pillow to fill the kyphosis curve of neck forwards, my elbows rest on the arms of the chair, left hand rests on the front of a 17“ laptop keyboard and right arm swivels from the elbow. If I forget to raise my legs then its not long before my shoulders and left arm really ache.

If I sat on a computer chair at a desk then I would be in pain and have to stop working in about fifteen minutes.

Swallowing

Some Polio Survivors have problems with swallowing. We need to take care that we do not aspirate food or drink.

Richard and I both have polio weakened palatal muscles – the ones you can see at the back of your mouth when you say ‘Ah’. They work for a few times and then weaken, so when we were only tested once this weakness was not corroborated.

We pace and rest eating and drinking. We have found that when drinking with a straw that we need to take care that we don’t suck too hard where the fluid can hit the back of the throat and make us cough. So our recommendation is that you only suck the fluid into the front of your mouth and then swallow it.

POST POLIO NEWS [PPN] www.post-polio.org.uk

An online news cutting service from Chris Salter that specialises in news relating to polio, post polio, disability and other health related issues.

Twitter, Newspaper, RSS feed, Facebook, LinkedIn, Daily digest emails.

Expert comment – UK approval of Pfizer/BioNTech COVID-19 vaccine London School of Hygiene & Tropical Medicine 2 December 2020

The Medicines and Healthcare products Regulatory Authority (MHRA) has announced that it has approved the Pfizer/BioNTech COVID-19 vaccine for mass national roll out.

“Today is a good news day, but there are challenges ahead” Professor Stephen Evans – Professor of Pharmacoepidemiology

The UK is the first country to approve the vaccine for mass vaccination. Professors Stephen Evans and Liam Smeeth react to the news.

Prof Stephen Evans, Professor of Pharmacoepidemiology, London School of Hygiene & Tropical Medicine, said:

Today is a good news day. However, we do have to acknowledge several key things that are not being said by everyone

1) We will not be able to change distancing, mask wearing etc for quite some time – months at least, and we don’t yet know when or whether that will stop.

2) Making vaccination available is not enough; people need to be convinced so that they do accept being vaccinated

3) We do not yet know about effects of vaccines that are extremely rare, and before we do there will be scares about adverse effects that are coincidental in fact, but perceived by some as being caused by the vaccine. As soon as we vaccinate very large numbers of people there will be coincidental deaths and strokes that occur in elderly people soon after receiving a vaccine. The MHRA and other groups are poised to study these things and to ensure that they are not in fact CAUSED by vaccination, but such events we know will happen, but jumping to conclusions will be unwise

4) Although we are, physically, an Island, viruses do not respect borders. “No country is an island entire of itself; every country is a piece of the world, a part of the world” (adapted from John Donne 1624). We need to ensure low and middle income countries must also get access to effective vaccination. Selfishness will rebound.”

Prof Liam Smeeth, GP, Professor of Clinical Epidemiology, and Dean of the Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, said:

“The continued progress on vaccines is fantastic news. A route towards a much better situation in the UK is becoming clear. A further circuit breaker in January or possibly February is likely to be needed. But, it is realistic to hope that by March or April the vast majority of older people, care home residents, and those with severe conditions will have been immunised. We can then work towards wider immunisation – with ideally much of the population covered in time for next winter. Life won’t ever be the same as it was before COVID-19, but it will feel a whole lot better than now.

“For the foreseeable future – and maybe forever – we are very unlikely to reach the situation we are in with smallpox (gone), polio (almost gone), or measles (controlled in populations with high enough vaccine coverage). Instead, we are going to need to find ways to fairly happily live alongside this virus.

“Maintaining public confidence in the vaccine will be key. Complete, timely data on who has been vaccinated, where, and when will be of enormous importance as we continue to monitor not just coverage, but also safety and effectiveness. Ensuring this data is entered into peoples’ NHS general practice records is crucial. General practice has proven ability to rapidly vaccinate large sections of the population, and with adequate support, is ideally placed to lead the COVID-19 vaccination programme.

“Ensuring equitable global distribution remains a major challenge. And equity is the key. Many lowincome countries with little resilience in their health systems and wider infrastructures face unimaginable challenges from COVID-19, and distribution of vaccines according to need will require affirmative action from richer countries, working with the World Health Organisation and other key players.”

Original Source Article: https://bit.ly/2JFf7jl

Rita Sandford, of Taunton, who caught polio in 1955 – Somerset County Gazette

[1st December 2020]

Rita Sandford, who has written a book about her life, with local councillor Simon Nicholls.

Phil Hill writes:

A TAUNTON woman has told how her life was turned upside down by a virus that ravaged lives in the 1950s.

Rita Sandford caught the polio virus before a vaccine was found as a five-year-old in 1955. There was no lockdown and people had to carry on their everyday lives not knowing who would be the next person to catch the deadly disease.

Rita was completely paralysed and was admitted to the Cheddon Road Isolation Hospital, where she was put into an iron lung, along with her mother, who sadly died, her brother, who was slightly affected, and father, who remained healthy.

Their home was fumigated and the council marked a large white cross on the door and barricaded the road.

Rita said: “Everyone was frightened.”

“I had to spend a long time in hospital while the physiotherapist worked on my arms and legs to see if I could improve.

“Polio attacks the central nervous system killing the nerves which my brain would tell my arms and legs to move.

“Without these nerves working, my body would not respond.

“Not all the nerves were affected and I slowly gained the use of my arms, but not my legs.”

Rita was transferred to hospital in Bath, where she was put in solitary confinement if she cried and was locked in the gym one night for not eating her supper.

She said: “It was a hard lesson for a five year old to learn, having just lost my mother, while my father, who did not drive, lived so far away.

“Most disabled people in those times were locked away out of sight. The aim was to get me up and walking so that I would be accepted back into society.

“I gradually walked using heavy full-length leg irons and a spinal support which I struggled to do. I did mainly use a wheelchair for distance.”

Rita was allowed home after 15 months and spent many months back in hospital every year. From the age of seven, she received an hour’s home tuition every day. She said: “Despite this, I was determined to live an ordinary life. I worked for 30 years, living independently, driving a van from my wheelchair, and went on many exciting holidays with friends.”

Rita has written her life story entitled To Paddle My Feet, which is available from Brendon Books, Rumwell Farm Shop, Amazon and Amazon Kindle, with all profits going to charity.

Original Source Article: https://bit.ly/2VEayYR

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Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

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Trustee/s – Vacancies please contact Toni for more information

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Phone Enquiries – Hilary Boone – 01522 888601

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With grateful thanks to the generous legacy from Ms A Brown, we are able to make

membership FREE whilst our funds remain above £10,000.00

Website www.poliosurvivorsnetwork.org.uk

Write to us at PO Box 954, Lincoln, LN5 5ER, U.K. Email psnadmin@poliosurvivorsnetwork.org.uk

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Editors Note: Articles from Polio Survivors and Health Professionals welcomed

The most accepted articles by NHS professionals we have found are:

PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

NB Respiratory and Sleep Problems Section very informative. ——————————

GOOD ANAESTHETIC ARTICLE – English version used by many PPS Groups

POLIO PATIENTS AND SURGERY – Information for health staff.

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf

Printed copies on our headed paper with permission are available.

© Polio Survivors Network – Volume 10, Issue 5/12 [113] December 2020	Page 24
© PHOTO CARDS by MEMBER VAL SCRIVENERSold in aid of POLIO SURVIVORS NETWORK Pack of 5 cards £3.95 including P&POrder by email to vala.scrivener412@btinternet.com Or ring Val on 01234 346 397
See pages 10, 17 & 18Can you help some of our members?

because WE’RE STILL HERE!

www.post-polio.org

Covid-19 & Polio Vaccine – Politics or Science?

Simon Parritt

Counselling Psychologist and Polio Survivor

COVID POLIO

Post Polio Health International:

Explore the past, the present, and help build a promising

future for the world’s polio survivors at

polioplace.org

See page 4

Post Polio Matters Volume 10 Issue 5 Read More »

Post Polio Matters Volume 10 Issue 4

© Polio Survivors Network – Volume 10, Issue 4/12 [112] Sept 2020	Page 1
Lincolnshire PostPolio Library100+ articlesStay Safe Onlinepage 11

Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post Polio Network

Polio Survivors Network Newsletter

September 2020 Volume 10, Issue 4 of 12 [112]

THIS ISSUE FEATURING PENNSYLVANIA, USA

PA Polio Survivors Network

(page 8)

Sadly we say goodbye to

Ian Radus

Photographed here on his 80th birthday surrounded by family.

Front Middle: Ian Radus

Back Left to Right: Lance Radus (youngest son), Jo-Ann Radus (daughter), Nayeli, Eagles (grand daughter, 1 of 7), Cecile Radus (wife), Marc Radus (eldest son)

See page 14

Remember these charity donation boxes from back in the day?

See page 17

Page 2 © Polio Survivors Network – Volume 10, Issue 4/12 [112] Sept 2020

The following donations were received in August 2020:

Thank you for your kind generosity.

Page 2	Contents, Donation acknowledgements
Page 3	Editorial
Page 4-5	Simon Writes Are Polio Patients a Challenge to GPs?
Page 5	Smile
Page 6	Toni Writes
Page 7-8	Bladder Basics in Polio Survivors, PA Polio Survivors Network
Page 9-10	Loneliness is the Hidden Disease
Page 11	Get Safe Online
Page 12-13	Once Stricken Twice Afflicted
Page 14-15	The Life of Ian Radus
Page 16-17	Yvonne’s Assorted Threads
Page 18	Post Polio News
Page 19	Management Committee, Useful Polio Articles
Back Page	Photo Competition, Polio Australia Facebook

Mitchell donation	£ 12.50
Scarlett donation	£ 5.00
Healy donation	£ 12.50
University of Lincoln donation via Hilary	£ 50.00
Unknown/Anonymous donation	£ 30.00
PayPal Donate anonymous donations of £1 each x 2	£ 2.00
TOTAL	£112.00

Editorial by Hilary Boone

Toni is completing this newsletter for me. The first time I have not had the time and energy to do this and it hurts. Why? because the powers that be in various organisations and departments that we deal with to manage our lives for health and social care have, in our and others opinion, let us down badly. They have made us use way too many of our daily energy tokens [day after day] by insisting we make formal complaints about the issues experienced in the last 15 months from other departments. Covid then delayed those responding. Treatment stopped, health professional visits and appointments stopped except for two phone calls where we updated them. Ending up with nothing left for 75% of what needs doing and that included this newsletter.

As you will remember, along with colleagues in Lincolnshire, I have been involved through PSN and LNA [Lincolnshire Neurological Alliance] in numerous NHS and Lincolnshire County Council mostly Social Care meetings for 25 years. That is time given up from a disabled life to share the issues that I, as a user and carer (along with our charity members), have experienced with a hoped for outcome of improvement in services for all. We asked for and were promised, but it rarely happened, ‘round the table talks’ from all departments with those working on the ground so that we could ALL share our issues and come up with possible quick wins and see improved paperwork, procedures and outcomes for all staff included saving departmental money.

Seven years ago those of us that had taken the In Control Partnership in Policymaking Course, paid for by LCC, were asked to visit the University of Lincoln to become part of the now named Together Group. We started with Social Care and were involved with ‘Open Days’, interviewing prospective students, some lectures, and it progressed to being involved with new courses from the start through to validation. Health and Social Care, Nursing, Pharmacy and, as new health departments started, the Together Group have increased in number and been involved. Why did/do we do this? We have found that firstly leaving home and going to University makes you feel part of life again. It is a two way process, the students learn from us what it is like to be on the receiving end of jobs they hope to do and we learn from the questions asked of us, we learn from lectures we are asked to join in to give comments. It is very rewarding and we can pass forward what we learn. We see positive outcomes.

Personally, one day when being visited by a new to me Social Worker (who had just moved from Mental Health to Adult Social Care) about a few problems that were making life very difficult, I suddenly realised he was just chatting. ‘I learned this other less official but effective way of gaining information’ that he was using instead of asking questions during a Uni lecture. I told him what I had realised and how much I appreciated it, I relaxed and the appointment became much easier. There is a major issue for those of us that have to deal with multiple departments of multiple organisations to manage our daily lives including our health. Each person in each department of each organisation knows their job, or we hope they do. As Polio Survivors we have at least two decades of experience that this is not always the case. Many health professionals have never heard of post polio, nor been taught anything or enough about polio by their Colleges of Medicine and many of us have had incorrect diagnoses/treatments/operations/advice for years.

Let us say they all know what their job entails, but do they know the rest of the process or how that dovetails with other organisations? Do they talk to one another? Do they read on other organisations websites what should happen and believe it does? [We know that the reablement process in Lincolnshire offers way more than we have learned happens] Have any of them ever asked how many other people we are dealing with and if we have any problems there? Covid has made all this much more difficult for us and them which we understand, but if the offers of help and paperwork for the last 25 years had been genuine then it is our belief that many of the problems we still experience should have been sorted. If there are going to be genuine outcomes I am happy to give up my time and energy. Sadly I reckon at least 90% of my time – other than at University – has been a waste of time.

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Simon Writes … Are Polio Patients a Challenge to GPs?

It has become increasingly evident that the understanding and management of ageing with polio has little expertise within the health and medical communities. As new polio is rare and older polio patients die, we find ourselves in the care of our much overworked and under resourced GPs. Even if we are referred to a specialist service there is little chance they know much about polio let alone PPS.

Sensible self monitoring is not hypochondria

Therefore, the only sensible and safe way is for us to monitor and listen to our bodies and gut feelings. Don’t ignore pain or new symptoms, always check them out. Ageing comes with a complex mix of conditions which require understanding their interaction and origins, but most can be helped or managed. Let me put in a plug for geriatricians, having in the past worked alongside some of the best, I can say they are often better able than most to think holistically and coordinate help.

Self monitoring, seeking advice or help if things seem consistently not right is essential. However, we can then be caught in a cycle of obsessional checking, worrying and anxiety, I know I am guilty of this! So balance is important. Equally, we cannot accept being ignored, told its just you age or worse all in your mind, as so many were told about PPS in the past. We share this last reaction with those who had ME or fibromyalgia, when it was labelled yuppie flu. I trust and hope that in the post Covid 19 environment, those who my develop ongoing fatigue and multiple issues will not suffer the same fate.

Information and Knowledge equals Empowerment

So, it is down to us to learn about ourselves. We should try a least to have a basic understanding of the recent medical facts and issues, as far as is known, and be able to present them in a way that ensures due weight and attention is given by your primary care team, GP or specialist treating you. It may help many to have an advocate there with you who is informed wherever possible. One reason we are here, is to help you in that wherever possible. This is vital so that when assessing and deciding what treatments, procedures or management is best for you, polio and PPS is fully understood, assessed and considered BEFORE anything is done.

Is polio relevant to me today given my other conditions?

As you are reading this, you are already unusual, as you are actively engaged and interested in learning more about polio and PPS and the latest information, management options and research findings. Most of the research is no longer happening in the UK and what has been done in the last 20 years is often only very small scale studies and so open to question. Of course, we hope that our web page will be able to continue to grow and contain lots of useful research and data for you and your health professionals. But remember if you need help we are here on the phone or email.

The invisible polio survivors in the geriatric population

How many polio survivors are invisible? They may have no memory of any original polio, have forgotten or didn’t even known they had it as a child years ago. It may have been non paralytic or asymptomatic (a misleading term which may haunt the Covid 19 population in the future). Some clearly had a very mild version, others recovered with no obvious impairment. Many who were left with some residual weakness, found it a nuisance, but carried on with a full life oblivious to the underlying level of damage. The problem seems to be that a young body has huge reserve of muscle and growth, the damage was therefore masked as it was not enough to prevent functioning well in everyday activities. However, over time and with normal ageing it becomes evident in sometimes subtle slow loss of function, probably through a lack or reserve and or the unconscious extra damage from overuse.

Live for today but don’t ignore the past

We now know that the polio virus almost certainly had a global impact on the body. It is good to live in the present but not to live ignorant of the facts. When ageing and ‘collecting’ other and illness impacts upon us all we must reject the narrative that your polio is irrelevant. It may or may not be, but it is probably not irrelevant to your treatment management and ignoring it could be very detrimental or worse. So, the earlier we accept this the better! Dealing with it in a crisis is not good, easy or for many without support it will be impossible. Indeed, a normal routine procedure or operation for others can trigger a puzzling decline or exacerbation of symptoms in a polio survivor who may even have been well before.

Just Remember

We are here for you and you are welcome to reach out to us. We are very few in number and resources, but we will do our very best to help and advise in any way we can.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc(Hon), BA, CPsSC, MBACP

Chartered Psychologist. HCPC Registered Counselling Psychologist, www.sp-psychology.com

Chair Polio Survivors Network simon.parritt@poliosurvivorsnetwork.org.uk

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‘SMILE’ by Barbara Taverner

First Time Wheelchair User

You do feel stupid when you first use an electric wheelchair but oh the joy and freedom it brings you. Yes people with you do disappear, they don’t like/enjoy the restriction placed on them, e.g. whilst shopping, etc. as it slows them down. [Editors Note: Obviously you’ve not been shopping with Richard when he is moving well, we certainly can’t keep up with him!]

Can’t always get access into shops that are crowded with goods in baskets that need negotiating which makes life more difficult. ‘Normal’ people become embarrassed. Stick at using wheelchairs. Eventually confidence does return and you become confident asking for help, to open a door, or bring something out of a shop that you cant get into for you to view. So what do you do if you come to the end of a path with no dropped kerb or if you cannot do a 3 or 6 point turn? … then smile… You better become good at reversing!

Seat Belt Use – Certificate of exemption from compulsory seat belt wearing

Do people know that one can get a certificate of exemption from compulsory seat belt wearing from your GP? Many don’t know of its existence! I’ve had one since 1998 renewable every two years, until I had so many that GPs started putting ‘indefinite period’ or till further notice that should be sufficient. However, I’ve moved home so many times that I have to change GP’s and my home address – causing more confusion to a GP knowledge.

I do wear a seat belt across my waist and the other part under my armpit. I cannot take pressure across top half of my body restrictions when leaning forward to reach something of change gear in the past. Not enough stamina. Neither stake pressure of strap nor clothing [polo neck collars etc] across my throat. I’ve been stopped twice in 1998 Lymstone Marine Camp and again S.O. Avon. Traffic lights gave me great pleasure and smugness and a concealed smile to reach into pigeon hole and show to police!

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Toni Writes …

Technology – love it, hate it or simply tolerate it as a necessity at times!

During these strange times that we are living I am sure, like me, you have had to rely on technology more and more. Maybe it has been for increased online shopping, Zoom quizzes, Facetime with family and friends. It certainly can challenge us as we try to keep up to date and begin to understand how it all now works. Do you find that when you ask for a little help that the reply sometimes sounds like a foreign language! My advice — ask the youngest person you know, they often seem to have been born with the ‘technology genius’ gene!

It is true that the internet has changed dramatically how we find answers to questions and how we research topics. We are also alert to fake news and misinformation so we are adapting to our newfound flood of information (see tips on staying safe online on page 11). Many look to the internet for help with health issues and to find others who have faced similar challenges to overcome. With this in mind, Polio Survivors Network has been keen to get its library back online. It was a space where many articles had been collated and even especially written for the charity (Lincolnshire Post Polio Network as it was known at the time) by a variety of professionals. Years of hard work were put on hold after the website hack but we are pleased to let you know that finally we have managed to get an archive library back on our website. Our special thanks go to Chris Salter for his help in providing some key files to assist with this.

We have also started a new library, one we can add information to as it is published or discovered. If there are any articles you have found interesting, websites that are especially helpful or books that have inspired or comforted you please feel free to share them with us all (contact details below).

As always we enjoy hearing from any of our members and would love to share your thoughts in an upcoming newsletter, just drop us a line when you get a moment.

Take care and keep safe

Toni x

With kind permission from Marcus at Brainless Tales https://bit.ly/2RbbhPb

Email	psnadmin@poliosurvivorsnetwork.org.uk
Post	PO Box 954, Lincoln, LN5 5ER
Website	www.poliosurvivorsnetwork.org.uk
Phone	01522 888601

Pennsylvania Post Polio Support Group –Bladder Basics in Polio Survivors

Dr. William DeMayo, MD DeMayo’s Q&A Clinic

Question: Dr. DeMayo, I have PPS. In the last few years I have experienced bladder issues. I have urine retention. On a recent CT Scan, It showed pelvic muscle atrophy. Is there a connection with Bladder problems and Polio? Were Pelvic muscles effected by the virus?

Answer: Great Question! Unfortunately, there is not a great, short answer. Nevertheless, like most good questions, there is an opportunity to use this as a learning opportunity.

First a few basics…

1) The first Basic Bladder issue is that bladder issues in men are far different then in women. I will discuss both men and women.

By far, the most common source of urine retention (inability to empty the bladder) is obstruction of outflow caused by the prostate in men. PPS itself does not cause urine retention in the bladder. Having said that, one needs to be sure that retention is in fact the problem. This is usually done with an ultrasound of the bladder after a void to see if to much urine still remains. Of note, frequent urine incontinence (inability to control urine / wetting one’s self) can be either due to urine retention with “overflow” leakage OR due to a lack of resistance to flow. The latter is far more common in PPS due to weakening of the pelvic floor as discussed below.

Also, incontinence is for more common in women compared to men due to multiple factors including a shorter urethra (the tube connecting the bladder to the outside), the urethra having less of a bend (especially when the pelvic floor drops), and lack of resistance of the prostate. Additionally, the bladder storage capacity in women tends to be smaller (partly due to presence of the uterus).

2) The second Basic Bladder issue is that neurological issues can have a major impact on urologic function. The bladder can become either over active or one can loose the awareness of bladder filling. Coordinated control of the bladder storage and emptying requires the interaction of muscles in the bladder wall, nerves from the bladder to the spinal cord, reflexes coordinated within the spinal cord and control from the brain (both with conscious awareness and without). Stroke, Brain Injury, Spinal Cord Injury, Multiple Sclerosis and many other neurological conditions can result in incontinence due to what is termed an “upper motor neuron. Since Polio is a lower motor neuron problem, we won’t discuss these more other than to say that Polio patients are not immune from any of the above conditions so they should always be considered. Also, the normal aging process can create a “hyper reflexive bladder” that can mimic an upper motor neuron problem.

3) The Bladder Basic that is most pertinent to Polio survivors is that the pelvic floor muscles play a profound role in bladder function. Any older individual is subject to this issue but those who have restricted mobility or a prior reason to have pelvic floor weakness are certainly more at risk. “Stress Incontinence” results when a cough, a laugh or a sneeze increases the pressure in the abdomen and thereby increases pressure on the bladder. It occurs when the resistance to outflow is low and this is especially the case in women. Polio can certainly cause weakness in the pelvic floor muscles and this weakness can progress in cases of PPS.

Additionally, a history of child birth, recent sedentary lifestyle and weight gain can all add to relative weakness of the pelvic floor. Weak pelvic floor muscles are directly associated with less resistance to outflow. They play an important role in supporting the bladder, directly tightening the area around the urethra as well as creating a “kinking” effect with cough, sneeze or other activity which further increases resistance.

4) The last Bladder Basic is that many times bladder management is NOT Basic. Urine infection, bladder/ kidney stones, stress, physical activities, behavioural concerns and many other issues can significantly

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impact bladder function. As such, all significant symptoms that do not resolve, should be evaluated. Referral to a urologist should always be considered if symptoms fail to resolve with treatment by a PCP. [primary care physician]

Additionally, some Physical Therapists specialize in Pelvic Floor therapy. They can often be found through your urologist, PM&R [Physical Medicine and Rehabilitation] physician or GYN. Like any muscle, the pelvic floor can be over fatigued and so treatment of a patient with PPS should be individualized and not focused on just intensive pelvic floor strengthening.

A good PT specializing in this area can often provide lots of tips to improve symptoms. An example would be an older person who repeatedly has incontinence on the way to the bathroom. By the time they realize the bladder is full they risk an accident because the act of moving from sit to stand causes a reflex spasm of the bladder and the pelvic floor is not strong enough to resist this. Thankfully, there is an opposing reflex that inhibits the bladder (briefly) after 3 strong but quick contractions of the pelvic floor (Kegel type contraction). Thus, if this person takes 10 seconds to do these 3 contractions prior to standing, they can sometimes counteract the reflex bladder activity just long enough to get to the toilet.

A full explanation of bladder management is obviously well beyond the scope of this brief article. At the same time, I hope I have provided some insight into the way some bladder issues arise and provided hope that there are solutions.

Link to article online: https://bit.ly/33dAqOB

William DeMayo, MDwww.papolionetwork.org

PA Polio Survivors Network

We are happy to be sharing our new PPS Support Group Directory that has been designed for groups that have gone “virtual” and are using zoom technology. This opportunity allows survivors from all over the US and Abroad to come together like never before. You can easily find this new Zoom Directory in the Survivor Connections section of our website. This is an ongoing project and we will be adding additional groups as they request to join us.

In addition, we also offer additional Support Group contact information for:

 “Snowbirds” traveling to Arizona and Florida during the winter months,

 PPS Cruise Information,

 A Direct Link to the Post Polio Health International Worldwide Directory,

We appreciate your nice comments regarding the “Unsung Heroes” series in our newsletters. All five stories are now available on the Polio History page of our website. We highly recommend the moving video that accompanied the story of David Salamone.

Check out our “What’s New” section, as we update it fairly often. When you see something highlighted (either in our emails, newsletters or on our website) just “click” for additional information.

www.papolionetwork.org

Article from Trustee Verité Reilly-Collins www.aftercancers.com

Loneliness is the Hidden Disease

It is estimated around nine million people live on their own in the UK. Today, thousands of these have been facing life alone during lockdown. Now that this is easing, many say ‘Covid’ fears make them worried about mixing with others.

Many may have lost contact with services and friends during lockdown. Now that this is being lifted, they are fearful of making contact and frightened to go out.

Those who have cancer are probably some of the worst off; so far many have no idea when treatment is resuming, or even planned follow ups.

During lockdown there has been much talk about Mental Health, especially as the Duke and Duchess of Cambridge have spoken out about this. But, many who live on their own are resilient and able to get on with their lives, perhaps need a little more help with loneliness, but are too proud to ask for help.

So the challenge is on to try and mitigate loneliness for so many in today’s world, and ensure they are not neglected or forgotten..

Making use of Volunteers In March the NHS put out a call for volunteers to help vulnerable people stay safe and well at home, and was surprised when so many volunteered. In fact numbers so overwhelmed the authorities that it was said that many were never called to help.

Now, surely is the time to make use of these volunteers. The RVS (Royal Voluntary Service) has volunteers that can help in all sorts of ways: practical help and companionship, deliver books to those who love reading but can’t get to their local library and drive people that can’t get out and about to GP or hospital appointments, shopping trips and to local social events and activities.

They run clubs and groups in local communities where older people can socialise, take part in interesting activities and enjoy something to eat and drink.

But these voluntary services need to be publicised, and potential users assured that they are not making use of ‘charity’, but volunteers too get something out of the interaction.

Don’t let the volunteering spirit fade away. This is where Bojo and his merry mates need to think of others, rather than where they can don a hard hat for a photo opportunity. Instead of popping up around the country making fools of themselves moving boxes and getting in the way of genuine workers, isn’t it time the Cabinet got down to some serious thinking about how they can harness volunteering enthusiasm to help the lonely around Britain?

Let’s make sure that no one on their own feels isolated any more. If everyone over a certain age, or disabled, or living on their own, could be assured it is their right to have a volunteer do something with them once a week, whether it’s taking them shopping, playing Bridge, taking to them to keep fit, etc., this might banish loneliness and prevent much mental suffering.

The Government organised food drops for the vulnerable during lockdown. Now, before it gets lost, this network could be used to give people a weekly visit or outing, and encourage more social interaction.

This should be easy to do; the annual census form has just gone out, identifying elderly people living on their own – so use this data. GPs, doctors, pharmacists, nurses, midwives, NHS 111 advisers and social care staff should all the able to point to suitable, vulnerable people, and request help for them. The RVS has a call centre who can match people who need help with volunteers who live near to them. I reckon Bojo would do more good funding this call centre for extra staff, than any Eat Out to Help Out scheme.

Schools Every Autumn it’s Harvest Festival time, when our ancestors celebrated bringing in the harvest that would provide food for the Winter. Shortly after my elderly mother moved to the Oxfordshire village of Dorchester-on-Thames, there was a knock on her door. A group from the local Primary School came bearing a box of apples and some tins. “It’s Harvest Festival, and we’ve

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bought you a gift from us”.

Mother was enchanted, invited them all in and listened entranced whilst these kids told her all about their village. Then told all her friends about the school’s initiative. There are some schools that have already made contact with elderly people, and found a terrific rapport. So if anyone is member of the PTA, or a School Governor, why not suggest ‘meet elderly locals’ sessions?’ for this Autumn Harvest Festival?

Minister for Loneliness Tracey Crouch MP is the Minister for Loneliness. Yet since she has been appointed, she has been remarkably quiet. Does the post still exist, I ask myself?

With 9 million elderly people around, their needs are going to vary enormously. Surely the Minister could come up with some ideas? It’s not rocket science, but if the Minister gets bogged down with too many advisors, committees, White Papers, initiatives, strategies etc. she is going to lose all will to improve, and the elderly will still find they are lonely as they are not being able to tick the right box.

Let’s KISS (keep it simple, stupid) and let villages, schools and groups get on with doing their own thing and reaching out. Tracey could remind Councils that those who have Council House Estates could actually visit them and appoint a resident to knock on everyone’s door and take a note of who genuinely lives on their own. One of the saddest aspects of the Grenfell Tower disaster was that Councillors had almost never visited the Estate, and had no idea of what went on – in their own Borough!

Schools could tell staff that they need to make contact with the local community; meeting older residents works a treat for those pupils who have already taken the initiative, and formed a living history contact. Copy what they are doing. And don’t sit arrogantly behind the gates not knowing your neighbours.

The Minister for Loneliness posting is made in memory of the MP Jo Cox; it could be the start of a new era for elderly people, and help with the scourge of society today: loneliness.

Social Prescribing halt. Let’s revive it.

This was just being rolled out by GP surgeries, when lockdown called a

The King’s Fund explains: social prescribing, sometimes referred to as community referral, is a means of enabling GPs, nurses and other primary care professionals to refer people to a range of local, non clinical services.

Recognising that people’s health is determined primarily by a range of social, economic and environmental factors, social prescribing seeks to address people’s needs in a holistic way. It also aims to support individuals to take greater control of their own health.

Social prescribing schemes can involve a variety of activities which are typically provided by voluntary and community sector organisations. Examples include volunteering, arts activities, group learning, gardening, befriending, cookery, healthy eating advice and a range of sports.

There are many different models for social prescribing, but most involve a link worker or navigator who works with people to access local sources of support. The Bromley by Bow Centre in London is one of the oldest and best known social prescribing projects. Staff at the Centre work with patients, often over several sessions, to help them get involved in more than 30 local services ranging from swimming lessons to legal advice.

Social prescribing is designed to support people with a wide range of social, emotional or practical needs, and many schemes are focussed on improving mental health and physical well being. Those who could benefit from social prescribing schemes include people with mild or long term mental health problems, vulnerable groups, people who are socially isolated, and those who frequently attend either primary or secondary health care.

There are Nine Million lonely people out there – don’t let them be victims of the Covid 19 pandemic!

In need of cancer support? Please contact verite.reilycollins@poliosurvivorsnetwork.org.uk or see website www.aftercancers.com — you and your loved ones are not alone.

Get Safe Online

Useful resources, Q&A sessions and advice can be found here: https://www.getsafeonline.org/

Telephone Preference Service

Did you know you can also register your mobile number by simply texting the “TPS” and your email address to 85095 from your mobile phone? There is no charge to send a message or to receive confirmation from this number. You will receive a text message confirming your number has been successfully added to the TPS database.

Keeping Safe Online

Scammers are exploiting the pandemic to trick people out of their cash, UK banks have warned. Here is their list of some of the fraudulent schemes to watch out for:

1. Fake government emails offering grants of up to £7,500. Clicking on the links allows scammers to steal personal and financial information

2. Scam emails offering access to “Covid 19 relief funds”

3. Official looking emails offering a “council tax reduction”

4. Benefit recipients are offered help in applying for universal credit, but fraudsters grab some of the payment as an advance for their “services”

5. Phishing emails claiming that the recipient has been in contact with someone diagnosed with Covid 19

6. Fake adverts for non existent coronavirus related products

7. Fake emails and texts claiming to be from TV Licensing, offering six months free but asking people to update their payment information

8. Emails asking people to update their TV subscription services payment details by clicking on a link

9. Fake profiles on social media sites are used to manipulate victims into handing over their money

10. Fake investment opportunities are advertised on social media sites, encouraging victims to “take advantage of the financial downturn”

Report Suspicious Emails and Scams

If you receive an email that looks suspicious to you or is clearly a phishing email (an email trying to get you to give information especially financial) you can report the address that is came from. Simply forward the email you received to report@phishing.gov.uk

The National Cyber Security Centre act on every email they receive and they provide advice for individuals here : https://www.ncsc.gov.uk/section/information-for/individuals-families

UK National Reporting Centre Fraud & Cyber Crime

What to do and who to turn to if you need to report a fraud or cyber crime https://www.actionfraud.police.uk/ or call 0300 123 2040

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“Once Stricken, Twice Afflicted” As told by Jack Meintsma

Full article: https://wol.jw.org/en/wol/d/r1/lp-e/102004526

As a result of effective vaccines and diligent immunization programs, science has made great progress in its effort to eradicate polio, a debilitating childhood disease. However, even decades after recovering from polio, some survivors find themselves afflicted again, facing what is called post polio syndrome (PPS).

You may never have heard of PPS. Neither had I until it became very much a part of my life. But in order to understand the syndrome’s effects on me, let me go back to a day in 1941, when I was about a year old. My mother noticed that I was slumped over in my high chair. She rushed me to the doctor. After examining me, the doctor told my mother, “Your son has infantile paralysis.” I was soon paralyzed from the waist down.

After six months on a waiting list, I was admitted to the hospital. Years of recurring illness followed. Through intense physical therapy, I gradually regained the use of my legs. At the age of 14, I was walking again. But other problems, such as incontinence, remained. Over the years, I went through several cycles of surgery, confinement to a wheelchair, and physical rehabilitation. Still, my left foot is three shoe sizes smaller than my right foot, and my left leg is an inch shorter than my right leg. It was not until I was in my early 20’s that I got the embarrassing problem of incontinence under control. Finally, I was completely over polio—or so I thought!

Then, at age 45, I began to experience pain in my legs, followed by fatigue. Also, my leg muscles moved involuntarily at night, making it very difficult for me to sleep. The symptoms did not let up; they only worsened. You can imagine my surprise when I was diagnosed with PPS—44 years after my mother recognized my initial illness.

What Is Polio?

Polio is a highly infectious disease caused by a virus that enters the body through the mouth and multiplies in the intestines. After invading the nervous system, the virus can quickly cause total paralysis. As the virus passes along to the brain and then to the spinal cord, initial symptoms are fever, fatigue, headache, vomiting, stiffness in the neck, and pain in the limbs. Many of the nerves stop functioning, resulting in paralysis of some of the muscles in the arms, legs, and chest.

But the body’s recuperative powers are amazing. Nerves that were not affected by the virus send out new “sprouts,” as if running extra telephone lines, to reconnect the muscle cells that were orphaned when their previous nerves died. A single motor neuron in the spinal cord may also grow terminal axon sprouts, which may connect to many more muscle cells than it did originally, thus greatly increasing the neuron’s capacity. A motor neuron that previously stimulated 1,000 muscle cells might eventually reconnect to between 5,000 and 10,000 cells. This is evidently what happened in my case, so that I am able to walk again.

However, it is presently thought that over a period of 15 to 40 years, these neural muscle units may begin to show signs of fatigue because of being overworked. PPS is a condition that causes symptoms to reappear in individuals who had recovered from polio decades earlier. Many victims experience muscle weakness, fatigue, joint and muscle pain, cold intolerance, and breathing problems. Though accurate figures are hard to obtain, the World Health Organization estimates that there are 20 million polio survivors worldwide and evidence indicates that 25 to 50 percent of them are affected by PPS.

What Can Be Done to Help?

Researchers suggest that the old, overworked motor neuron becomes so exhausted that some of

“Historic inoculations polio” by Sanofi Pasteur is licensed under CC BY-NC-ND 2.0

its nerve endings die, leaving many muscle fibres orphaned once again. To slow this process, a polio survivor needs to reduce the demand on the affected muscles. Some therapists recommend crutches, wheelchairs, and scooters. In my case, it became necessary for me to wear braces on both of my legs and feet. I also have specially made shoes that support my ankles and help to keep me from falling.

Moderate exercise and muscle stretching may also be required, depending on one’s condition. Swimming or warm water pool therapies are excellent means of improving cardiovascular function without straining the muscles. It is important for the patient to cooperate with the doctor or the therapist in any exercise program.

In polio survivors, repeated demands on the neurons ultimately result in the failure of some muscle fibres to work properly. Survivors may thus experience a decrease in stamina or even suffer debilitating fatigue. Loss of stamina may also result from the stress of constant pain or of dealing with a returning disability. I have found that periods of rest during the day help me recover from fatigue. Many doctors caution their patients to pace their day to day activities rather than push themselves to the point of exhaustion.

In my case, constant joint and muscle pain has been one of the hardest things to deal with. Some may experience muscle pain particularly in those muscles that they have strained during their usual daily activities. Others experience a flulike aching in all their muscles, along with exhaustion.

Pain may lessen with anti inflammatory or other types of medication. But despite medications, many polio survivors suffer from disabling chronic pain. Physical therapy along with heat and stretching may help. A sufferer who gave up her practice as an anaesthesiologist told me, “I could get out of this wheelchair and struggle across the room, but the pain is so great, it isn’t worth it.” Now, even with medication that helps, I must frequently resort to my wheelchair.

Some polio survivors have lost the ability to shunt blood away from the skin, which the body normally does to conserve heat in the muscle tissues. Without this ability, an affected limb will radiate more heat and cool down. When the muscles are cold, poor communication from the motor neuron to the muscles results, and muscles do not work properly. Thus, it is important to keep the affected muscles warm by wearing extra clothing. Some use an electric blanket or a hot water bottle during cold nights. Avoiding exposure to cold weather helps. I found it necessary to move to a warmer climate.

Breathing problems are common, especially among those with a history of bulbar polio, a form of polio that affects the spinal cord in the upper neck and thereby weakens the breathing muscles. In times past, this type of polio landed many people in an iron lung. Today, a ventilator may be used to assist weakened lung muscles. In my case, it is very hard for me to breathe when I exert myself. Therefore, every day I use a small device to exercise my lung muscles.

Survivors need to be aware of another potential difficulty. It is not advisable to have surgery and then return home the same day. Dr. Richard L. Bruno, of the Kessler Institute for Rehabilitation, states: “NO POLIO SURVIVOR SHOULD HAVE SAME DAY SURGERY FOR ANY REASON except for the most simple procedures that require only a local anaesthetic.” He adds that polio survivors require twice as long to recover from the effects of any anaesthetic and may need additional pain medication. Their stay in the hospital will usually be longer than that of other patients. If I had known that, I might have been spared a bout of pneumonia following a minor surgery. It is wise to discuss concerns with the surgeon and the anaesthetist before surgery.

My Life Today

When I was able to walk at the age of 14, I thought my problems were, for the most part, behind me. However, after many years I find myself experiencing the same problems all over again. For polio survivors like me who develop PPS, the situation is, as one writer put it, “once stricken, twice afflicted.” Of course, it is only normal to get discouraged at times. Nevertheless, I can still get around and take care of myself. I have found that the best medicine for me is to have a positive attitude, to adjust to changing circumstances as they develop, and to appreciate what I can still do.

Page 14 © Polio Survivors Network – Volume 10, Issue 4/12 [112] Sept 2020

The Life of Ian Radus

by Marc Radus (oldest son)

It was at a nursery school in Belgravia, Johannesburg, South Africa when, in 1944, 5 year old Ian Radus fell out of the tree he was climbing. After being rushed to hospital the unexpected news emerged – Ian’s fall was the result of muscle weakness. Ian was ill and had contracted poliomyelitis. Although this would be a defining moment for Ian it would in no way limit what was to follow.

The virus wreaked havoc throughout Ian’s body, in particular his legs, right arm, muscles in his back, and his stomach muscles, and his lungs were particularly badly affected. He eventually regained movement in his right arm and some very limited movement in his legs, but his doctors warned Ian’s parents that they should expect Ian to be bedridden for life. Ian remembered his time in an iron lung and how the medical theory at the time was to physically restrict the movement of the patient as much as possible. This medical approach was later proved to be completely wrong . This experience would leave an imprint on him – he would forever hate being in enclosed narrow spaces, such as going through the CAT scan machine. Something he would need to experience many times through his later life.

In order to care for Ian’s physical needs, his education and family life was disrupted several times. At the age of 9 he and his mother, Lake Radus, moved from Johannesburg to the city of Durban so that Ian could attend the Open Air School. The school carries the motto “I can and I will” and was opened in 1921 to cater for the needs schoolchildren with physical impairments.

An untold number of orthopedic surgeries meant that much of Ian’s childhood was spent in and out of hospital rather than at school. When he was 14 years old, he and his mother traveled to Liverpool in the UK so that Ian could receive more specialized treatment. Unfortunately, some of the surgery did not go to plan and this was a setback, but undeterred Ian carried on always hoping that the next surgery or treatment would give him a little more independence.

In 1954 Ian was transferred from hospital in Liverpool to a rehabilitation center in Southport. It was here that Ian discovered sport – something which would become a passion throughout his life. But here in Southport under the watchful eye of a somewhat tyrannical sports coach Ian learnt how he could push his body beyond what anyone could imagine and how he could master his body through physical activity. Ian would recall how the sports coach would get his charges to climb the rope using only their hands, make them do 100 press ups and endlessly wallop a punching bag. When he was told he showed promise as a basketball player, that meant the world to him. He went on to captain the wheelchair basketball team – the youngest player to do so.

On returning to South Africa, Ian attended Jeppe High School and then Damelin College in Johannesburg. Despite his limited time spent in school he matriculated and received outstanding results. Ian was accepted for medical school where he hoped to train as a doctor. Unfortunately, however, Ian was unable to take up his place at medical school because he was hospitalized and remained in a full body cast for 6 months. From a physical perspective, the operation was successful and Ian was able to start walking wearing only one caliper and using two canes.

While in hospital, and still disappointed about his missed opportunity to go to medical school, Ian decided on a career change and chose instead to follow in his father’s footsteps by becoming an attorney. Ian graduated cum laude from the University of the Witwatersrand and won the Law Society prize.

Ian’s motto was always if you are going to do something – do it right, or don’t waste your time doing it at all.

Ian Radus (far left) with students of the Open Air School in Durban, South Africa.

It was at the age of 33 that Ian decided to join the Mandeville Sports Club, Johannesburg. It was here where he excelled at wheelchair basketball, table tennis, swimming and track – and received Springbok colours in all 4 disciplines. It was, he said, the fittest he had ever been.

He was soon appointed Southern Transvaal & Springbok Captain & led his team into multiple South African sports championships as well as international tournaments against Zimbabwe, USA, Canada & England.

At the time, it was common for families to keep their physically disabled children safely behind closed doors away from the rest of the world. To Ian this was a waste of life. Seeing the positive effect playing sport had on disabled people’s physical, emotional and social health was all Ian needed to see to know he was right and to push past the boundaries and to do what he could to coax and encouraging disabled people to come out from the shadows and onto the sports field.

Captaining the first ever South African wheelchair basketball team in the 1976 Paralympic games against the silver medalists, Israel, was one of the proudest moments of Ian’s sporting life. Ian also competed in swimming and table tennis events at the games (photo on back page).

But Ian was not satisfied with only playing sport – he later also became chairman of Southern Transvaal paraplegic organization & vice chairman of the national Paralympic organization.

After several rotator cuff injuries, Ian decided it was time to retire from sport and to focus his attention elsewhere. Having a full spinal fusion in 1979, to correct a life threatening scoliosis, put an end to any hopes of a comeback on the basketball court. While the surgery was a success, the spinal fusion created additional limitations for Ian. He was no longer able to use “trick” moments and getting up and down stairs became almost impossible. Soon after, Ian started using a wheelchair on a full time basis.

Ian was passionate about life and living life to the full. One way to do this was for Ian to do what he could for the community. For example, he joined and later became chair of Radio Rescue, a citizen band radio volunteer service. He also trained and became a crisis counsellor at the Waverly Crisis Centre in Johannesburg. In 1985, Ian decided to look more deeply at his Jewish heritage and became observant, studying the texts deeply and helped to build a now thriving synagogue and Jewish community in his neighborhood.

In the early 1990’s Ian started to notice some strange symptoms which puzzled him and his family. Initially it was almost imperceptible – the weaknesses in his arms, pain in his legs, and fatigue. He once described it as feeling as though the parts of his body which had been most effected by polio had aged faster than the rest of his body. These symptoms grew gradually stronger and became more debilitating. Later they would start to effect his breathing. Ian’s doctors couldn’t explain it, and thought the weakness and pain in his arms and legs were due to previous sports injuries or a result of some previous surgery. It was only when Ian stumbled across the Lincolnshire Post Polio Network (as it was then) and made contact with Hilary Boone that things started to make sense – Ian had developed post polio syndrome. Ian once had an ICQ six chat conversation on the internet with Hilary and five others. A few days later Hilary was recounting this to another polio member and ended “and Ian in South Africa”. Lynn said, ‘Oh I know Ian in South Africa” and they both laughed. Hilary then said “Ian Radus” Lynn said, “That is the Ian I know, I met him when I was at the Paralympics in Toronto”! In 1998, Ian & Cecile travelled to London to meet their first born grandchild, a drive to Lincolnshire to meet Hilary was an essential part of the trip and Lynn drove up from the South Coast to meet him as well.

Ian enjoyed exploring and mastering alternative health and healing techniques ranging from hypnosis, reiki and meditation – both for managing his pain and to help other people. Ian was a committed and strict vegetarian for many years.

Being physically disabled never held Ian back. In his later life when his condition worsened, and despite enormous amounts of pain and suffering, he never stopped wanting to live life to the fullest. When he was bed bound, he used the time to tap the creative and intellectual parts of his brain. Endlessly reading both fiction and non fiction, learning, writing speeches and lectures for his community, and dedicated many hours to writing a book.

After many brave and heroic battles, Ian passed away peacefully on 4 July 2020. He leaves behind his wife of 56 years, Cecile, his three children, Marc, Jo-Ann & Lance and 7 grandchildren.

Page 16 © Polio Survivors Network – Volume 10, Issue 4/12 [112] Sept 2020

Face masks…oops, I mean face coverings

Well we all knew it would come to us having to use some kind of face covering. I’m not keen on them because, being an Essex girl, you can’t see my lipstick! Joking apart, I can’t breathe very well in them, but I do wonder if it’s a throwback terror of having a black rubber mask held over my face when going for operations as a child. Why, oh why couldn’t they just put me out with the ‘count to ten’ injection and then put the mask over my face? I used to fight like a tomcat every time.

However I am trying to be a grown up about it and get over it by practising mindfulness when I put one on. Not that I’ve been anywhere except the doctors surgery in the last 4 months, so I’m not exactly getting much practice. But I do love making face coverings. My craft room is full of a wonderful selection of materials/fabrics and I’ve been challenging myself with making up patterns from You Tube. Pyrianka is good. They obviously have, in some way, to match my outfit for the day (sad, I know, but that’s me). Lately though my outfits consists of gardening clothes or gardening clothes! so when I do go out I have to match.

I made my daughter in law and two granddaughters matching ones which they loved, and the youngest ones favourite has gold elastic. Bit of Nana rubbing off on that one!

It seems the right elastic is the so called ‘earloop’ elastic, which is soft and comfortable and much better than the dreaded knicker elastic. Once you start looking at patterns you’ll find many varied styles and having mastered the patterns its very easy to make them up. I have a lot! My daughter Kerenza is my tryer and tester and is doing her best to reduce the ‘mask’ mountain. Oh and I’ve just had a thought, I haven’t got any purple ones yet!

‘Change we must’ picture

What an amazing picture by Jane Tomlinson on the front of the July 2020 newsletter. I spent quite some time finding all the objects. We do a lot of recycling here and my sewing machine is in constant use. This lockdown shows just how much we don’t need to keep going out and buying ‘stuff’. I’m so impressed by this piece of artwork that I have cut it out and put in on the pinboard in my craft room.

‘Points’ of interest

You Tube is brilliant and I’m always finding things to watch. My husband and I are interested in all things Heritage Railway related, having visited many in the past. ‘Rail Mart’ is interesting, it’s the drivers eye view from the cab sort of thing. e.g. Paignton in Devon to Exeter, Topsham to Exmouth and my favourite St. Erth to St.Ives…Escapism.

Oakley Rabbit

Kerenza, my daughter, has made her version of one of the rabbit family that we featured in the last newsletter. His name is Oakley and he is a woodland rabbit, made in lime green wool felt he was inspired

Yvonne’s assorted threads

by the ‘Green man’, a legendary being representing the cycle of new growth every spring. We made him some brown needlecord trousers and a waistcoat onto which Kerenza stitched various leaves. Then, Kerenza being Kerenza, made him a twig throne. At which point our friend Pauline (the knitter) got involved and also got carried away making mushrooms, acorns and oak leaves, which look amazing. We managed to make him with things we already had around, which did involve a lot of searching in my craft room. I’ve usually got things, t’s just a case of finding them! Thankfully, living in the forest Oakley doesn’t need an extensive wardrobe, a quick rub down with some moss and he’s good to go.

Polio Charity Boxes

Does anyone remember the charity ‘statuette’ mainly placed outside shops in the 50’s. The polio one featured either a boy or a girl wearing a brace or caliper, or as we called it, a leg iron. They were holding a collection box in their hands and obviously donations were welcome. They were very welcome in my case, as I stood next to one outside the ‘Home and Colonial’ store minding my baby brother in his pram, so I would be 7 at the time. Mum always seemed to be in the shop for ages, no self service in those days. Having watched a couple of people put pennies in, I placed myself next to the girl statuette and stood in the same way as her, leg iron on show. More people came and put money in. Smiling at them I decided to do a bit pro active, telling them they didn’t need to bother putting the money in there as I had the same as her and they could give it straight to me! I did really well and was quite pleased with my handful of money. I proudly showed my mum when she came out of the shop (she who must be obeyed) and then watched her face change as I told her of my money making scheme. Furious, hmmm, it wasn’t good, one of those hissing in your ear sort of telling off was delivered first, then I was made to put all the money in the box. Every last penny, I mean, surely I could have kept one penny and got four blackjacks with it, couldn’t I?

Lockdown viewing

I don’t know about anyone else but I personally couldn’t have survived all this lockdown business without the odd bit of escapism. A film or an Amazon Prime or Netflix boxset has been a real diversion from all the reality of Coronavirus. There was always an old adage in Hollywood that there were no decent roles for women over 40. Well Netflix seems to have put that idea firmly in the past! I was pleasantly surprised to find two actresses, who were firmly type cast as rom com legends in the nineties, in lead roles in captivating and binge worthy series. Renee Zellweger in ‘What if’ and Reese Witherspoon in ‘Little fires everywhere’. What a pleasure to see both break the mould and I would strongly suggest both series are well worth a watch. Is Netflix the future for older actresses?

Do you shop at Amazon?

Access Amazon through www.smile.amazon.co.uk and sign up to have Polio Survivors Network as your chosen charity .

0.5% of your purchase price is donated to PSN by Amazon. Costs you nothing!

Did you know you can donate to PSN via PayPal fee free?

Donate here: https://bit.ly/3eZ3NsV

Page 18 © Polio Survivors Network – Volume 10, Issue 4/12 [112] Sept 2020

POST POLIO NEWS www.post-polio.org.uk

An online news cutting service from Chris Salter that specialises in news relating to polio, post polio, disability and other health related issues.

Twitter, Newspaper, RSS feed, Facebook, LinkedIn, Daily digest emails.

YOUR GOOD HEALTH: History of polio needn’t prevent woman from getting vaccine

Full article: https://bit.ly/35qgomE

Dear Dr. Roach: I am a woman in my late 70s, a 1949 polio patient. For many years, I have been told that because of poliomyelitis I cannot tolerate any preventive inoculations, including flu, pneumonia, shingles, etc. I was allowed to get flu shots when they first became available; however, when additives were included later on, I was instructed not to get it any longer. My concern is if I will be able to safely partake of the coronavirus inoculation when it becomes available. Most present-day doctors have no experience with polio, and often input is vague. P.G.

Dr Roach replies: Poliomyelitis was, for many years, a terror that parents feared every summer. Until a vaccine became available in 1955, polio could strike without warning. Although the vast majority of people had only mild symptoms (90% to 95% of cases were asymptomatic), about one person per thousand with polio developed poliomyelitis, a serious complication of the nervous system that was sometimes fatal and two-thirds of the time led to permanent weakness. Why some people got terribly ill and died while others had no symptoms remains a mystery, although we know some risk factors for developing poliomyelitis, such as older age, excess exercise while infected and tonsillectomy.

I am surprised to hear the recommendations against standard vaccines for you. I haven’t read that before and I have taken care of quite a few polio survivors. Experts confirm that standard vaccines, including flu, pneumonia and shingles, are recommended for those with a history of poliomyelitis. There are no additives in the vaccines placing polio survivors at increased risk.

It is too early to speculate on a coronavirus vaccine. Although many groups are working on a vaccine, efficacy and safety testing is extensive before a vaccine is approved and the process must not be rushed. However, I doubt that a history of polio will prevent you or the many other polio survivors from getting the vaccine when one is approved.

There are many places for you to get more information: Post-polio.org is one I often use. It has reliable information from experts, which is increasingly important as the number of physicians who have taken care of polio survivors decreases.

—————————————————————————-

BEYOND BARRIERS

Anne Davey Koomans’ Biography of Her Husband, David “Dave” M. Davey, Praised By Book Reviewers

Full article: https://bit.ly/3k6X7ek

“David Davey’s body was ravaged by polio at a young age, but the footprints he left behind are of unquestionable value,” says Jennifer Padgett of San Francisco Review. Anne Davey Koomans published a biography of her late husband, humanitarian and disability rights activist David “Dave” M. Davey, titled “Beyond Barriers” (Readers Magnet; 2020). Published date June 13, 2020 “Beyond Barriers” tells the exemplary life and works of the selfless Dave, who was instrumental in the passage of Americans with Disabilities Act (ADA). As a liaison for Goodwill Industries, he worked with Senator Bob Dole on the National Barrier-Free Architectural and Transportation Board. The book also tells the author’s life with Dave and their travels together.

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee Vacancies please contact Toni for more information

Operations Team

Phone Enquiries – Hilary Boone – 01522 888601

PSN Admin, Email Enquiries and Website – Toni Dunlop – psnadmin@poliosurvivorsnetwork.org.uk Printing – Imprint Colour Printers, Lincoln

Management Committee [Trustees]

With grateful thanks to the generous legacy from Ms A Brown, we are able to offer

membership FREE while our funds remain above £10,000.00

Website www.poliosurvivorsnetwork.org.uk Write to us at PO Box 954, Lincoln, LN5 5ER, U.K. Email psnadmin@poliosurvivorsnetwork.org.uk

Phone us on 01522 888601 – will ring you back when we access our messages

UK Members – receive newsletter by post and/or email (overseas members newsletters by email only)

All donations, small or large, towards our work are gratefully received

Donate by cheque to Polio Survivors Network by PayPal to treasurer@poliosurvivorsnetwork.org.uk

or use PayPal donate: https://bit.ly/3eZ3NsV

Editors Note: Articles from Polio Survivors and Health Professionals welcomed

The most accepted articles by NHS professionals we have found are:

1) Patient Plus article Post-Polio Syndrome

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

NB Respiratory and Sleep Problems Section very informative

—————————

Good anaesthetic article (English version used by many PPS groups)

2) Polio Patients and Surgery – Information for health staff

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf

Printed copies on our headed paper with permission are available

Page 20 © Polio Survivors Network – Volume 10, Issue 4/12 [112] Sept 2020

www.post-polio.org

Winner: Photo Competition ‘This Made Me Smile’Fran Henke of Polio Net“Corella eating our gaweekend. They move in here (Australia), swinlines, having fun. LesSee also Barbara Taver‘Smile’ pa

workrden light at the big flocks down ging on power son to us all.”ner’s thoughts onge 5

Photo shared on the Facebook public group Polio Australia by Lyn Glover

Ian Radus, representing South Africa at the 1976 Paralympics, Toronto

Read Ian’s life story (told by his eldest son) on page 14

Post Polio Matters Volume 10 Issue 4 Read More »

Post Polio Matters Volume 10 Issue 2

Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network

Lincolnshire PostPolio Library 100+ articles

Polio Survivors Network Newsletter

JUNE 2020 Volume 10, Issue 2 of 12 [110]

DUE TO THE CURRENT SITUATION

Newsletters will now be less pages and EVERY MONTH

REMINDER FOR POLIO SURVIVORS

Have you reported weakness that has not been corroborated by medical assessments? Did you realise that Single Action Manual Muscle Testing does what it says?

It tests muscles a single time it does NOT test their endurance level. Time constraints for appointments mean that if the first test is good the tester moves on. If your weakness, either repeating or sustaining the action starts after that first test then the weakness can be missed unless you phrase your problem with more specific information.

“Climb stairs as normal – then right leg first – now have to stop halfway as well”

“I could lift a jug full of water and pour it out with one hand, now I need to use two”

“Swallowing issues – ask for the ‘AH’ test to be repeated a few times.”

We developed My Polio Life to help you self-assess how you do all actions of daily living so that you can provide more specific information on your problems.

Continued on page 4. Confirming statements ‘there are issues with Single Action Manual Muscle Testing received May 2002 from Dr. L.S. Halstead Director of Post-Polio Program National Rehabilitation Hospital, Washington DC and Dr. F. Maynard, President of the Board of Directors of Post-Polio Health International, St. Louis MO and more on My Polio Life.

Contents

1 Front page

2 – 4	Contents and Hilary Editorial and then continues her article from the front page
5 – 6	Simon our Chair writes about the current situation from his perspectiveToni writes… see back page about a photo competition and contact detailsVerité who has many hats, a polio survivor, owner of aftercancers.com, a health journalist and a PSN Trustee talks about the NHSZsuzsanna then tells us more about masks and how to make them
7
8 – 9
10 – 11	Meet Our Members Phillip Barton, Eddie and Funmi (Funmi’s photo and one from Phillip’s childhood and a recent one are on the back page)Hints, Tips and Bits – Information on Post Polio News (PPN)
12
13	Our new condensed Information page. Plus the link to the two best articles accepted by NHS health professionals that we should carry with us

14	Back page with photos linked to articles in the newsletterThis issue and the Annual Report enclosed has been printed by Hilary Boone

Editorial by Hilary Boone

From now on a change to monthly newsletters with fewer pages. First some sad news, I took a call from Olivia Branston to say that her husband Barry had passed. They have been long-time Life Members from the Lincolnshire coast for nearly 20 years. Those of you who have attended AGM’s will remember them both. We send our condolences and we hope to be feature an article about Barry’s interesting life in an upcoming newsletter.

Second some thankyous. My daughter in Canada asked for donations to PSN instead of birthday cards and sent us the magnificent sum of £190.39, for which great thanks. Thank you to Yvonne Webb another long time Life Member for her donation of £100. Thank you to Val Singleton for a cheque for £20 profit from the sale of her photo cards. Thank you to Barbara Taverner for more information for our records. We hope to hear from more of you but know how difficult it is at this time to get out to the post. We have added a stamp and addressed envelope with this issue and hope to hear from you over the next few months. Remember nothing is irrelevant if it means something to you, there will always be someone else who will benefit from reading it, even if it is only a one-liner. You will find bits from Simon, Hilary, Zsuzsi, Verite, Debbie and Toni. Also meet members Eddie, Funmi and Philip Barton on pages 8 and 9, photos back page.

Debbie Ison (see back page) has now completed a set of six short videos explaining different therapy techniques that might help you cope with PPS and all that is going on in the world today. Give the different strategies a go and you may find that some of these techniques are more useful than others, but I hope you find one that is successful for you. We have also put links on the scrolling piece of the homepage of our website. We have also sent a donation to Dave Crippen for the use of his cartoons.

If you do not have access to the internet and would like more information then get someone to get in touch with us and we will put our thinking caps on.

Continued from the Front Page. Precis of how I realised what had been wrong for over 10 years!

I had waist down paralytic polio at age 5 but was allowed to go swimming daily. I recovered well although I was always falling. Operations on both feet at age 12/13 and the falling lessened. I got on with my life and competed in any sport that I could manage that did not involve running. I had a very strong upper body and swam for my county. I started lifesaving lessons and was soon passing the qualifications although years later it was realised that I had developed my own sideswipe kick not visible under the towed body. I started judo but because I could not bend my knees far without my legs collapsing I only got as far as orange belt. I became a secretary then passed a medical for the police [did that statement cause you to reread it?] After a few weeks I

was off to training school in Yorkshire. I did not learn until the end of the 3 month course that I nearly got sent home on the second day when I raised the fact that I could not do cross country running on Friday’s because I could not run due to polio at age 5. Because of my judo and lifesaving qualifications my Chief Constable asked them to reassess me each week. I passed the course and completed the 39 Mile Lyke Wake Walk across the North York Moors in 18 hours.

I married, had two children, passed all my lifesaving qualifications again, passed the Advanced Swimming and Life-Saving Teacher and City and Guilds 730 Further Education Teachers Certificate. I was teaching swimming in a handicapped school, Oct 1988, when I slipped. I spent seven years, including 3 weeks on neck traction in hospital, being physically assessed and given regimes of physiotherapy. I continued to deteriorate no matter how hard I tried to do the physiotherapy. I would explain I was getting worse, I would be examined and told I was not trying hard enough. I thought I had MS and Alzheimer’s. I had an MRI scan and the locum told me he was glad I was better. I told him I was not and I had had polio as a child—did that have anything to do with this? My prior polio had NOT been in the equation from Oct 1988 to Nov 1995. I have not stopped searching for information from that day onwards. I was diagnosed two years later but only after a second opinion request at another hospital. I had a days’ full tests with nothing else found – ‘confidently diagnose the post-polio syndrome’! Niggling constantly was why did it take so many years? I suddenly had a eureka moment when I thought ‘how did I pass a medical for the police when I could not run?’ There must have be something wrong with the muscle testing used on me.

Time is short for free NHS appointments and if a Grade 5, normal result is found the tester moves on. I decided to test myself as best I could. See the charts on front page. I had been laid on a leather couch in a neurologists office and had to lift my leg against the pressure of his hand. BUT… we are crafty… when we know what they are going to do it is easy to use all the body oomph to show them how good we are. He only tested each leg once. Then he tested my arms, “grip my hand” and boy can I crush fingers, then I am asked to “link fingers and push them over and pull them over”, well at six foot tall I could do this easily. Graded 5s, all normal. Those three arm tests are the basic tests for arms. Then why can I no longer lift a jug full of water and pour it out using one hand? I now have to use two hands. I used to go up one flight of stairs normally. Over the last few years I had changed to going right foot first and then stopping half way for a rest. I could not lift the quads exercise bar with my left leg. So how could he record ‘On neurological examination of the legs power at the left hip, and knee and ankle was normal’? I decided that no health professional would write something they did not believe to be correct so assessment by Single Action Manual Muscle Testing must be faulty and unreliable. I wrote to two of the most knowledgeable and experienced Polio Specialists, Lauro Halstead MD a polio survivor himself and Fred Maynard MD. In May 2002 they replied….

“If done only a single time, it can give an erroneous idea of the true muscle strength and endurance” – Lauro S. Halstead MD, Director of Post-Polio Program National Rehabilitation Hospital, Washington DC, USA.

“You have done a brilliant job of describing a real problem for polio survivors and professionals that is, the limitations of the Manual Muscle Testing” – Fred Maynard MD, President Board of Directors, Post-Polio Health International.

We then developed My Polio Life as a self assessment tool to help you look critically at how you are doing each action of daily living. Compare this to how you used to do it and record the difference. Now you have information to ask “what is happening in your body for this to be happening?”

I told the senior physiotherapist I was sent to in 2003 that I had no problem scrambling eggs but now realised that I was using elbow rotation to do this. Providing that extra information meant that specific muscles were now tested and it was found that I had very weak supinators in my wrists. I was also using ‘hamstrings and back extensors’ to get up from the floor. I have to bend from the waist to pick anything up from the floor. My back is bent forward so I cannot look up and reach up at the same time. A few months later Richard and I started monthly neurofunctional chiropractic

treatment from Dr Darren Barnes-Heath of Newland Chiropractic Clinic. This timely action on any raised issue has meant other health professionals telling us ‘you are doing really well considering the length of time you have had symptoms’!

Since Covid-19 and now Day 91 at home and unable to see Darren, we are both having more problems. My back is more bent forward, joints are stiffer and we are in a lot more pain, having to take pain killers every four hours and use Bio Freeze pain spray. Maybe we can get to start again in July?

My personal comments about how the government has too slowly dealt with Covid-19 leading to people not understanding the seriousness, attending events and protests would burn a hole in this page.

My advice is to self assess and think about the differences in how you do actions now, then think back to how you used to do the actions. Maybe you have changed the way a few times, like when climbing stairs. We tend to not want to think about things like this, so it might be a bit of an eye opener, upsetting and something you really do not want to think about. However, this specific information will be invaluable to your health professionals. This should lead them to examine you more specifically to find out why you have had to change the way you do the actions e.g. I changed from wrist action to using elbow rotation to scramble eggs in 2004. I have two different height work surfaces in my kitchen, one nine inches lower than normal. I still use elbow rotation but now have to put the bowl on the lower surface.

Have a look at My Polio Life if you have not already done this. I know many of you have over the years. Page 10 lists many actions of daily living to help you. There is not enough room on this sheet to write all the info you need to so use a separate page and write it out in full and pick a couple of words that will remind you for the form. Remember this is information for you to remind you ahead of an appointment of what information you want to tell the health professional you are seeing.

Can you imagine what you would think if ‘you’ turned up to see ‘you’ with a large file of medical articles. If you have a photo or two that shows how fit, or something unexpected you achieved in your earlier life then take that with you.

This might help, imagine you are a doctor training in 1996 and your College of Medicine taught you about polio and leprosy in the same lecture that was half an hour long. Not enough time to do more than provide a few bits of information and photos of polio survivors in iron lungs or with atrophied limbs. You have not had continuing education that has mentioned Post Polio Syndrome and you have not come across a patient that looked like those photos. How do you think you would feel if ‘you and your problems’ suddenly walked through your consulting room door?

How long is the appointment going to be? How much time will you have to explain your issues? What are the most important facts that you can demonstrate in those few short minutes? You might have to make a second or third appointment to go through all the issues you want to raise.

My Polio Life and a partly filled in copy to give you some idea of how we did it can be found at https://poliosurvivorsnetwork.org.uk/enter/wp-content/uploads/2018/10/mypoliolife1.pdf

If you have not got a copy, have no access to the internet or don’t know anyone who can print one off for you then please give us a ring.

PLEASE DO NOT TAKE CHANCES especially at the moment, always try any aids or assistive devices that will save you that bit of energy.

If you can get help to do the heavy stuff of an action then take it. Why waste energy on doing something you always used to do and ’will not give up doing it’ if there is another way and it leaves you energy to do something that makes you feel better, smile and enjoy life. Anything that you can do to ensure you do not fall or catch Covid-19 and stay out of hospital the better.

Stay safe and contact us if you need any help.

Simon Writes… FEBRUARY WAS THE MONTH OF DENIAL

As we enter the next phase of the covid pandemic, it seems people have begun to fall into different camps when it comes to coping with what to do next at a personal level. Of course, many I spoke to back in February and early March when I was warning that this was a major pandemic didn’t really believe it and dismissed it, and me as fear mongering or media hype. To me that was obviously not the case and I shut myself down from around the 20th February. It’s hard to get much satisfaction from ‘I told you so’ but it’s hard not to again caution those who seek to diminish the ongoing risk. With largely a disorganised management and inaccurate figures we have to make decisions, as post polio survivors, on what to do at an individual level, often in spite of, rather than because of any official guidance.

MY DUAL ANXIETIES

I feel the issues that confront me fall into two areas, the psychological stress and then my ongoing health monitoring and management of my conditions. There is no doubt that isolation hits some more than others but I have had increased health anxiety around the prevalence of the virus locally, not least as my chances of survival are more or less nil. Even the worrying issue of whether I would be put on a ventilator is not an issue as there would probably be no clinical benefit from being ventilated in ICU.

IS THIS PARANOIA ?

As we creep out of lockdown – too early in my view by about 3-4 weeks, people are getting less careful and I get more concerned. Almost no one is wearing a face covering, let alone a mask. My usual aches, pains and feeling unwell suddenly become more foreground and possible something else in my now hypervigilant mind. However irrational as Covid virus symptoms are so diverse, I am trying to be logical, the virus is unlikely to have floated over the fence from neighbours as they are coughing and sneezing with Bar-B-Q visitors over the weeks of good weather.

POLIO HEALTH CARE EXPERTISE

The second issue is that my respiratory team, consultants and wards have been redeployed to deal with Covid cases. I therefore must rely on local and non-specialists in any crisis, and we all know what that means, basically ignorance around what post polio is and means. The delay in any information around what to do, who to contact was many weeks in coming, as was my shielding letter which I had to chase again and again as polio was never included in the original list, even though I use a ventilator at night. Fortunately, I have a very proactive, professional and responsive GP and Primary Care Practice.

WHEN WILL IT BE SAFER ?

The longer term issues are how and when will we feel safe as vulnerable people to take the risk and return to some engagement in the outside world. I cannot trust what I don’t know. Maybe it’s the neurotic psychologist in me, but I will be anxious and in fear until I know the level of risk I am taking.

When we get to an R rare nationally under or around 0.5 I will feel safer.

When I can access accurate data on how prevalent the virus is in MY area on a week by week basis, I will feel safer.

When everyone is urged to wear masks in ALL public areas, I will feel safer.

When we have a really effective test and trace system working at a local level, I will feel safer.

When I sense that the information being published is about fact and just not politics, I will feel safer.

And of course when there is a vaccine of some kind and its widely in use, whilst not a panacea, I will feel safer.

HEALTH FIRST

And then there is the fear is of a second wave in the autumn and winter because we haven’t reduced to level enough over this summer. History doesn’t always repeat itself exactly but I hope that we are not again victims of the UK’s approach as in the 1950s where late decisions, politics and professional rivalry delayed us getting a national polio vaccination program under way until 1957 having been reluctantly forced to import supplies from the USA of the Salk-type vaccine as our vaccine production system had failed.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc(Hon), BA, CPsSC, MBACP

Chartered Psychologist. HCPC Registered Counselling Psychologist, www.sp-psychology.com Chair Polio Survivors Network simon.parritt@poliosurvivorsnetwork.org.uk

Toni writes…

I was thinking about our lovely members and I realise that I know very little about many of you. I understand you all have polio in common but so many have much life experience to share. Some members have gone on to lead very full lives, have exciting careers, raised large families, achieved things people thought weren’t possible.

I would love to hear about you or anything that you would like to share with other polio survivors. We run a series of articles introducing our members or an interview with a member – I would like to include as many of you as possible as you all have experiences to share. All of this, in turn, helps us to tailor information to our members’ needs and experiences.

Maybe you’d like to share with us your story, your achievements, your tips in a practical matter, your frustrations or even a simple hello from your neck of the woods. Others will have loved travelling or cuisine, send in a recipe perhaps or a memory from your holidays. Our newsletters are about polio survivor support and help but also about our polio survivors as individuals.

If you prefer to be more creative perhaps send in a poem, riddle, a funny cartoon or photo. Don’t forget to also check out our photo competition. I look forward to seeing the responses.

My contact details are on the back page and for those of you who have a post only newsletter copy we have included a stamp and address label to make responding as easy as possible.

As always, I send you my fondest regards and hope that you can continue to keep well during these challenging times.

Some recipe ideas follow:

Pea soup

Heat 600g frozen peas with a tablespoon of olive oil and a 400 ml can of coconut milk in

a saucepan for 5 minutes or until fully heated through Pop mixture in a blender to blitz until smooth

Season with salt and pepper to taste (or herbs if you prefer) Serve in bowls with a splash of natural yoghurt if you have some.

Pesto Pasta (serves 3)

Boil 250g spaghetti in a large pan according to pack instructions Drain well, then return to the pan

Add a tablespoon of pesto (any type) and 20g of grated parmesan Mix well. Serve in a bowl with extra parmesan on top.

For inspiration on quick meals try:

https://www.bbcgoodfood.com/recipes/collection/quick

http://allrecipes.co.uk/recipes/slow-cooker-recipes.aspx

https://www.yummly.co.uk/

From aftercancers.com – Verité Reilly-Collins, also a PSN Trustee Questions the NHS needs to answer – May 25th 2020.

Why was NHS so unprepared to deal with Coronavirus?

The mood in the media is changing. With lockdown easing, British media has turned from eulogising the NHS, to asking questions about NHS administration and its handling of the crisis.

No longer is the NHS regarded as untouchable; editors no longer think ‘the NHS is the envy of the world’. They’ve seen the world’s media questioning – loudly – why the virus took such a hold in the UK, and seen the shortage of PPE equipment, etc.

Until May, the media had been after us to “clap for the NHS”. Suddenly there was a U-turn, and we were encouraged to clap for NHS Staff – not the Service as a whole. Then the Daily Mail, one of the widest-read papers, got on board with help to provide a solution for the PPE crisis. Its Mail Force campaign produced millions of pounds in donations, which the Mail used to buy and distribute PPE to front-line staff. Thereby cutting out the NHS’s procurement department (I wonder if they’ll ever get refunded for the dud Turkish equipment they landed up with?)

Has clapping passed its ‘sell by date’?

Annemarie Plas, a Dutch national living in south London, originated the weekly “clap for carers” event on Thursday evenings. She says next Thursday’s event should be the last, concerned the event has become politicised.

She commented : “I think it’s good to have the last of the series …. I share some of the opinions that some people have about it becoming politicised”. She had been “overwhelmed” by the support for the ritual, but it was better to stop whilst it was at its peak.

Others say clapping doesn’t pay the bills, and are worried the Government will tend to ‘overlook’ any pay rise.

Now it has become the norm to do the unthinkable, and question if the NHS is doing its best to look after the nation’s health, with The Telegaph, Sunday Times and other media asking searching questions about the NHS ‘s handling of the crisis.

The daily parade of three pompous Minister on TV from Downing Street has viewers questioning what purpose these sessions serve? Plonking their folders full of garbage on the lecterns, they pretend to look interested whilst Journalists ask questions via link-up, but seemed incapable of giving a straight answer.

Contrast their pathetic performance with that of Scotland’s First Minister, Nicola Sturgeon. Assured, on top of her brief and honest answers – even if she doesn’t know the answer. One big question is bothering me. Is her hair-do a wig? Or is she also a hairdresser?

Statistics coming in from other countries

The fact that Great Britain has had one of the worst outcomes hasn’t gone unnoticed in the world’s press, from Australia to America. It is shaming to find that we are considered to have been the worst in Europe at handling Coronavirus, along with our appalling record of having the worst cancer care in Europe.

As NHSMangers.net says, “We know this has been handled badly. World class? Oh yes! In a class of it’s own; muddled, slow, confused and way behind the eight-ball”.

In the meantime, Groundswell has produced this video https://bit.ly/2znUC5t

Future

We like to think of the NHS as ‘OUR NHS’. In which case, surely it is up to us to question what went wrong, and ensure that in future we are better prepared.

Will masks be compulsory after we emerge from lockdown?

I have been making facemasks for members of my family and also for many of my neighbours during the lockdown. I used to think it strange seeing people from China and Japan wearing them but the longer we have been told to self isolate the more convinced I became that when we emerge from lockdown the wearing of facemasks will be the solution to the problem of this ever increasing spread of the corona virus.

The use of facemasks is generally accepted in many eastern countries. In Japan which has a population of 126.5 million with a large proportion of elderly there were 16,651 cases of corona virus and 858 deaths even though Japan is a densely populated country. The population of the UK is over 67 million with 267,240 confirmed cases and 37,460 deaths to date [28th May 2020]. In Japan masks are commonplace, handshaking is not the norm and shoes are removed on entering a house.

Masks are also accepted in India where social distancing is difficult. In China, Taiwan or Hong Kong, masks were relatively common even before the corona virus pandemic; people are used to wearing face coverings because of pollution or previous experience with the SARS and H1N1 outbreaks.

On March 18th, the Czech Republic became the first European country to make the wearing of face masks mandatory in supermarkets, pharmacies, and public transport. On April 6th Austria also made masks mandatory in public spaces. On April 9th Cameroon imposed masks for people leaving their homes followed by a dozen more African countries: Angola, Benin, Burkina Faso, Equatorial Guinea, Ethiopia, Gabon, Guinea, Kenya, Liberia, Rwanda, Sierra Leone, and Zambia. Germany, France and Spain also followed later. But in the United Kingdom the government urged the public not to wear masks in order to ensure that there were enough supplies and personal protective equipment (PPE) for healthcare workers. The death rate in this country is 552 per million of the population, the second highest after Spain (580 per million), compared to 7 per million in Japan, 309 per million in the USA and 102 per million in Germany. These figures have not been reported recently at the daily government briefings.

According to the World Health Organization: “Masks are effective only when used in combination with frequent hand-cleaning with alcohol-based hand rub or soap and water. If you wear a mask, then you must know how to use it and dispose of it properly.” Assuming it is a disposable mask.

Analyses show that if 50% of the population were to wear masks, only 50% of the population would be infected by the influenza virus which is similar to SARS-CoV-2 which causes COVID- 19. Once 80% of the population wears a mask, the outbreak can be stopped. Face masks are not for self protection, they protect people from the wearer by trapping infectious droplets that are expelled when the wearer is speaking, coughing or sneezing.

Corona virus spreads easily from person to person. Virus carrying droplets dry fast enough to form droplet nuclei and remain airborne, eventually landing on different surfaces. SARS-CoV-2, the virus that causes COVID-19, has been detected in aerosols for up to three hours and on plastic and stainless steel surfaces for up to three days. (N.Engl J.Med. 2020) Masks lower the chances of corona virus entering the respiratory system through droplets still in the air from an infected person. Wearing a protective mask reduces the chances of inhaling the virus but it must be cleaned thoroughly using soap and water and dried in the sun or ironed dry.

https://www.thecompassforsbc.org/sites/default/files/project_examples/ FINALMASKMANUAL_pdf_pdf002.pdf Issued by the Office of the Principal Scientific Advisor to the Government of India_ March 30, 2020

A protective mask can be made with simple household materials. Scientists have tested different household materials for homemade masks to measure their effectiveness in stopping viruses. They bombarded 0.02 micron particles (5 times smaller than the corona virus) on to different materials. They found that a double layer of 100% cotton cloth is most effective at capturing small particles, is breathable and this is also easy to use for making a mask at home. Make sure that the mask fits around your mouth and nose and there is no gap between your face and the

mask. When wearing the mask, the side facing you should show pleats facing downwards. You must never reverse the mask for reuse. Always thoroughly wash mask after every use.

IMPORTANT PRECAUTIONS:

1. Thoroughly wash and clean the mask before wearing it.

2. Wash your hands thoroughly before wearing the mask. .

3. Do not touch the front or any other surface of the mask; remove it only with the elastic

4. As soon as the mask becomes damp or humid, switch to another mask and clean the used mask.

5. After removal, immediately clean your hands with 70% alcohol hand sanitizer or with soap and water

6. Never reuse a mask after single use without cleaning it.

https://sarahmaker.com/how-to-make-a-no-sew-face-mask-with-at-home-materials/

One of the simplest and quickest ways to make a no-sew face mask is with a bandana (handkerchief or large cloth napkin) and two hair ties or simple rubber bands

First, lay the handkerchief, bandana, or piece of fabric flat. Fold the top and bottom inward to meet in the middle. Then, fold the bandana in half again. There will be four layers of fabric.

Next, use two hair ties to create ear loops. Slip one hair tie over each of the ends. Slide the hair ties a few inches toward the middle of the folded bandana.

Then, fold the ends of the bandana in to meet in the middle. You want the ends to overlap slightly, so you can tuck one end into the other. This will help keep the ends secure.

Wear the mask with the smooth side out and the ends against your face.

If the mask feels too tight around your ears, then you can adjust the position of the hair ties to make it wider. Remember to wash the bandana after each use, or if it becomes moist during use.

https://sarahmaker.com/how-to-sew-a-surgical-face-mask-for-hospitals-free-pattern/

To make a DIY “surgical” mask using a sewing machine you need 100% cotton fabric (with a tight weave), 1/8″ flat elastic for ear loops, scissors, ruler, pins or clips.

For an adult size mask:

Cut 1 fabric rectangle 16″ long and 8.5″ wide and 2 pieces of elastic, each 7″ long (or up to 8″ for a larger adult size)

For a small child-size mask:

Cut 1 fabric rectangle 14″ long and 6.5″ wide and 2 pieces of elastic, each 6″ long

For a large child-size mask:

Cut 1 fabric rectangle 15″ long and 7.5″ wide Cut 2 pieces of elastic, each 6.5″ long

This pattern has 2 layers of fabric, and an optional internal pocket in which you can add additional layers of disposable filtration material if desired. The opening in the centre shown in the third diagram is where the mask is turned inside out.

There are instructions on the following link https:// www.youtube.com/watch?v=6gcLp0y-Mfg

Zsuzsanna Snarey BSc Chem. MBChA MSSCh MA (Hons) PSN Trustee

“Introducing our member… Phillip”

Hello. I am Philip Barton and contracted polio when I was seven months old. Here is a photo of me with a physiotherapist at Bristol Children’s Hospital taken in 1951 [see back page].

I never let my disabilities get the better of me and in my teens became a Queen Scout and earned my Duke of Edinburgh’s Gold Award. My late mother told me that her proudest day was when I drove her into Buckingham Palace to collect my award from Prince Philip.

One of my few frustrations was when I started grammar school and suffered somewhat by being ‘different’ as the only boy not wearing regulation black shoes; at that time, Remploy made surgical boots only in brown. After a triple arthrodesis at Winford Orthopaedic Hospital (memorable for the fact that all the boys had to drink a bottle of Mackeson each evening) I was able to return to school as a teenager wearing my first pair of black slip-on shoes.

After qualifying as a Chartered Management Accountant, I joined a part of Midland Bank which led to me spending most of my career in the plastic card industry (credit cards, ID cards, etc), ending-up running the European subsidiary of a North American company manufacturing card personalisation equipment. Having been diagnosed with prostate cancer (now cured), I took early retirement eight years ago. We then moved to Buxton on the edge of the beautiful Derbyshire Peak District to be closer to our two children and now five grandchildren.

Since retiring I have remained busy and have had many overseas holidays; we returned from South America just before the lockdown. I am treasurer of two local community interest companies, a director of a local business group, and sat on a Home Office working party developing new legislation to help prevent ID card fraud. I am also a trustee of two opera-based charities.

Over the past three months I have at last found the time to start working through some of my retirement projects and have even managed to sit down during the day to read a book.

Unfortunately, we were unable to celebrate my 70th birthday as the party which had been planned for over a year, with visits from friends and relatives from all over the UK and USA, had to be cancelled and replaced by a Zoom call.

Having been diagnosed a couple of years ago with post-polio syndrome, which has started to affect my previously “good” right hand side, maybe now is the time to start to think about slowing down?

Editors Note: Welcome to all and please remember pacing and resting activities and using aids and assistive devices and someone to do the heavy work is not giving in, it is not a downward step. It is the best way to reduce fatigue and pain and actually do MORE of what you want to do. Yes, I did say MORE. If you do a bit and then rest a bit you allow your muscles to recover and do it again. If you push them till you crash out then they need at least a weeks holiday to recover.

OK I will admit that even after 32 years since my PPS kicked in I don’t always take my own advice. I will answer that I was just testing to see how far I could push myself. Who am I kidding? Other long time PPSers from around the world will admit they do the same thing now and then and it does give one a bit of a boost at the time.. See I can still do x… but you really have to think hard if it was worth the extra pain and crashed out doing nothing for some days.

ENERGY TOKENS – £10.00 a day, £70.00 a Week. Only you can work out how you spend yours. Take an average day and list the activities you have to do and decide how much you are going to spend for how long. Then how much for medical appointments, times with family etc. If a day is going to take more than £10 then you have to spend less the day before and after. An idea for me for £1 would do 3 hours automatic driving on a motorway with easy traffic but only 15 minutes on a winding Devon road with all the extra arm movements, braking etc. [Gosh I just realised that that was about fifteen years ago. Now, although I love driving, I only drive in and around Lincoln now as I need to use my tokens for other daily living actions] Electric scooter user for 23 years now, it carries my bags, drinks etc and I have been to hundreds of places that I could not have managed without it. Museums, Castles, Conferences. Watch envious faces in Museums when they see you looking sitting down.

“Introducing our member… Eddie”

Hi everyone I’m Eddie. I was 7 years old when polio put me into isolation in hospital and after being paralysed for 6 weeks plus, I slowly over time managed to have a near normal life until my late 50s when I started feeling changes. Not knowing and still now at 70 not sure after see my doctor who referred to a very young neurologist, nerve and muscle test I fight on, pacing myself in life, doing a bit, leaving a bit.

It wasn’t until I read the outcome of PPS that the jigsaw came together for me, my symptoms to a tee. I always have plan B now when I do anything and this helps a great deal. Keeping a positive attitude, building bridges, not brick walls in life allows me to grow my life style and adjust to daily tasks.

Editors Note: ‘Building bridges, not brick walls’ – a good phrase for us all to use.

“Introducing our member… Funmi” [photo on back page]

The shortened form of my name is Funmi. I am 62 years young. I had polio at 18 months of age. The infection left me with weakness on my left foot.

I have lived a full life. I was a nurse by profession. I raised 3 beautiful daughters and I am currently helping out with my grandson.

I became very unwell in my late 40s and it just got progressively worse. I also noticed a more significant weakening in my left foot, lower back pain, extreme tiredness, recurrent chest infections. I had tests upon tests with the doctors in hospitals but nobody seemed to know what was wrong with me. The Rheumatologist gave me a diagnosis of Fibromyalgia and Chronic Fatigue.

I am not sure how I heard about the Polio Survivors Network; it was a real “God lead” knowledge. I began to research and read about all my symptoms in the library of the Lincolnshire Post-Polio Network. This was where I first read of post-polio syndrome.

At this point I had so many medical issues from prolapse of the posterior vaginal wall, to problem with constipation getting worse, sleeplessness and constant tiredness pain all over my body and weakness and pain on my affected limp. At some point l spoke to Hilary Boone who gave me so much encouragement about dealing with my issues one by one.

I decided to take early ill-health retirement at the age of 53. I had to fight for it because my doctors felt they did not want me to give up working yet. I felt differently – I knew I had to look after myself without the stress of working. To date I believe this was the best decision I made.

In 2015 I had an operation to fuse and stabilise my left ankle. This has given me a new lease of life. Last year (2019) I visited Israel thereby fulfilling a lifelong desire. The picture on back page was taken last year on my trip to Israel on mount Carmel. My hobbies are music, reading, crafting, and travelling. I am a retired nurse practitioner and a spiritual and general wellness coach.

Chris Salter’s researched and provision of excellent information service is followed by many important and influential organisations and people worldwide. We have included some items every newsletter for years. However, conscious of the fact that many of us are elderly, some live alone, a few in residential or care homes and all self-isolating we have decided to leave it up to you. If you would like to read the items in this excellent resource we recommend that you subscribe to one of the services referred to above. Go to www.post-polio.org.uk and chose the method you prefer. We will repeat this item every issue.

POST POLIO NEWS [PPN] www.post-polio.org.uk

An online news cutting service from Chris Salter that specialises in news relating to polio, post polio, disability and other health related issues.

Twitter, Newspaper, RSS feed, Facebook, LinkedIn, Daily digest emails.

HINTS, TIPS AND BITS

Mary Read from the Lincolnshire Neurological Alliance shares the following for those seeking more technical neurological Covid information.

https://blogs.bmj.com/jnnp/2020/05/01/the-neurology-and-neuropsychiatry-of-covid-19/

https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30142-3/fulltext

https://www.medrxiv.org/content/medrxiv/early/2020/02/25/2020.02.22.20026500.full.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7170017/

https://www.cureus.com/articles/30897-covid-19-pandemic-a-neurological-perspective

Tom House [Thomas House-Arno] shares the following:

Just a note to let you know that a German poem for polio survivors that I translated for my Friend Peter Brauer MD has been posted to the WHO website – see link to the WHO Polio Global Eradication Initiative: http://polioeradication.org/news-post/not-without-a-trace/

Caroline Gordon-Wilson also Secretary Lincolnshire and East Midlands BPF shares:

When you think of riding the subway, laughter and joy aren’t the first words that spring to mind. It’s a cramped place full of grumpy people either coming home from a bad day at work or are just generally upset. Many are glued to their cell phones or “wired up” and have no time for anyone else. Yet if you’re lucky enough, sometimes you can find happiness in a subway train. One such moment was captured when a Belgian advertising agency working for Coca-Cola hired an actor to randomly start laughing on the train. Just watch and try to keep a straight face. Click Below….turn up the volume https://www.youtube.com/embed/1veWbLpGa78

Toni’s Reminders …

If you shop at Amazon 0.5% of your purchase price is donated to PSN by Amazon if you sign up to www.smile.amazon.co.uk It costs you nothing.

If you would like to donate to PSN by PayPal then this is the link https://bit.ly/2KzyAyE West End Shows – a new one each week. https://www.youtube.com/theshowsmustgoon Shows, musicals and operas online for free https://bit.ly/2MkEXqw

Concerts and operas http://www.classical-music.com/concertlivestreams ———————————————————————————————————————————-——

This is the first year I’m not going to Fiji due to Covid 19. I usually don’t go because I’m poor— Brenda S Butler

Let’s turn the shit of 2020 into fertile compost and grow a beautiful new world — Hannah Fraser Moore

What if 2020 is not cancelled?

What if 2020 is the year we have been wating for?

A year so uncomfortable, so painful, so scary, so raw that it finally forces us to grow. A year that screams so loud, finally awakening us from our ignorant slumber.

A year we finally accept the need for change. Declare change. Work for change. Become the change.

A year we finally band together, instead of pushing each other further apart, 2020 is not cancelled, but rather the most important year of them all— Leslie Dwight

In Control and Disability Rights UK have set up a register to record experiences of getting health, social care and treatment for Covid-19 during the time of the pandemic. They want to hear the experiences of disabled people, those people with long-term health conditions, carers and family members, both good and bad experiences in getting support so that they can help out and learn for the future. They will not record your name or personal details unless you want them to. Go to this webpage to give them your feedback: https://puttingpeoplefirst.limeask.com/949771?lang=en

Further info here https://be-human.org.uk/register-of-covid-19-experience/

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee/s – Vacancies please contact Toni for more information

Operations Team

Phone Enquiries – Hilary Boone – 01522 888601

PSN Admin, Email Enquiries and Website – Toni Dunlop – psnadmin@poliosurvivorsnetwork.org.uk Printing – Imprint Colour Printers, Lincoln

Management Committee [Trustees]

With grateful thanks to the generous legacy from Ms A Brown, we are able to make

membership FREE whilst our funds remain above £10,000.00

Website www.poliosurvivorsnetwork.org.uk

Write to us at PO Box 954, Lincoln, LN5 5ER, U.K. Email psnadmin@poliosurvivorsnetwork.org.uk

Phone us on 01522 888601 – will ring you back when we access our messages

UK Members – receive newsletter by post and/or email (overseas members newsletters by email only)

All donations, small or large, towards our work are gratefully received

Donate by cheque to Polio Survivors Network by PayPal to treasurer@poliosurvivorsnetwork.org.uk

By use PayPal donate link: https://bit.ly/2KzyAyE

Editors Note: Articles from Polio Survivors and Health Professionals welcomed

The most accepted articles by NHS professionals we have found are:

PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

NB Respiratory and Sleep Problems Section very informative. ——————————

GOOD ANAESTHETIC ARTICLE – English version used by many PPS Groups

POLIO PATIENTS AND SURGERY – Information for health staff.

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf

Printed copies on our headed paper with permission are available.

because WE’RE STILL HERE!

Meet Our Members photosPages 8 – 9Funmi on left Phillip Barton on right.

Six Short Videos from Debbie IsonExamples of therapeutic interventions you can try which might help with the day to day challenges of this ongoing situation. Links can be found on our website homepage and Facebook page(https://www.facebook.com/PolioSurvivorsNetwork)Debbieison34@hotmail.com1. Emotional Freedom Technique2. Changing a feeling or physicalsituation3. Changing a visual memory4. Changing an auditory memoryor inner voice5. Energy spinning and amindfulness activity6. Grounding

Email	psnadmin@poliosurvivorsnetwork.org.uk
Post	PO Box 954, Lincoln, LN5 5ER, UK
Website	www.poliosurvivorsnetwork.org.uk
Phone	01522 888601

A wheelchair should not be a symbol of disability. A wheelchair is a vehicle to liberation and freedom, a chariot for independence — Rick Hansen

Photo competition: Will be printed in future newsletters. The theme is “This made me smile”. Please send us a photo you have taken of something that has made you smile or laugh. Perhaps you have a cat that sleeps in a funny position, a flower in your garden is simply stunning, you baked a cake that tasted delicious, you received a gift from a loved one. We hope to print our winner in the next newsletter and other entries in subsequent ones. Please send your snaps by post [returned] or by email.

Post Polio Matters Volume 10 Issue 2 Read More »

Post Polio Matters Volume 10 Issue 1

Polio Survivors Network is the working name of Registered Charity 1064177, The Lincolnshire Post-Polio Network

Printed by Imprint Colour Printers Lincoln 01522 539570

Lincolnshire PostPolio Library 100+ articles

Polio Survivors Network Newsletter

MAY 2020 Volume 10, Issue 1 of 12 [109]

DUE TO THE CURRENT SITUATION

Newsletters will now be less pages and EVERY MONTH

POLIO SURVIVORSNETWORKYOUR HINTS, TIPS, BITSAMUSING STORIESEASY RECIPES and MOREPOLIO SURVIVORSNETWORKYOUR HINTS, TIPS, BITSAMUSING STORIESEASY RECIPES and MORE

These are trying and difficult times for all of us.

Time to stop being the I can do it, I can manage Polio Survivor. If you need to talk to someone to let off steam, chew the fat, then so do we all, even me. Ten minutes chat can make a huge difference.

We have tried in the past to start a Phone/Text/ Email friending service but not enough people responded. Many of us use Facebook to be in contact with many different Post-polio groups around the world. Someone is always awake and ready to reply. If you cannot or do not want to use Facebook then let us know how we might help you.

LAUGHTER IS THE BEST MEDICINE

but so is smiling at an amusing picture, reading an inspiring story from your childhood polio or since then. Do you have a special photo to share?

Maybe you have an easy to make tasty recipe. How about gluten free or with an alternative flour? A knitting or crochet pattern for a small doll or keepsake. Just remembered when I ran some craft classes for the disabled we used to put all sorts of things in those three part cards. Small cross stitch, piece of tapestry, knitted or crocheted fun character for a child, a flower or Xmas ornament. I used to make small tapestry samples from larger pictures for some of my ladies to copy. How about a garden ornament to make out of plastic packaging, page 6

What good films have you watched lately that others might enjoy. We often scroll down a list of movies but find it hard to choose something good from the title and short comment.

Please help me fill the pages!

Lincoln Cathedral lit blue to support the NHS taken by Our Carer Helen D.

Contents

1 Front page. New format, less pages, every month. Please help by sending us items to share with other Polio Survivors their families and friends throughout the world.

2 Contents and Editorial

3 – 5 New Format. Simon, then Hilary, then Zsuzsi then Verité write….

6	All care workers can have a breakdown… be patient with them. This includes anyone caring for anyone else, including caring for ourselves.

7 Toni writes – starts on the back page with photograph.

8 Photo page, some bits relate to other pages.

9 Micki Minner, Polio Epic, Tucson, USA tells us about Joanne Yager, Polio survivor

featured in CBS program you can watch link. Followed by some bits to make you smile.

10 Hints, Tips and Bits to Brighten your Day.

11 Disability Horizons, info on what they offer. Small piece on bottom of previous page

relates.

12	Interviewed by Toni – Val Scrivener tells us a little about herself, the person behind the photocards. See bottom of every last page of every newsletter for years. Thankyou for all the funds you have raised for us.Bottom of page, Fran Henke, Polio Survivor in Australia gives us link to tv program
12

Insights Interviews Series – Polio Epidemics where she is interviewed.

13 Our new condensed Information page. Plus the link to the two best articles accepted by

NHS health professionals that we should carry with us.

14 Back page with more photos linked to articles in the Newsletter.

NB This issue printed by Hilary, our printers hope to be working again for next issue.

Editorial by Hilary Boone.

From now on a change to monthly newsletters with less pages. A few members suggested a happy newsletter full of hints, tips, stories and photos, funny comments made to you by any professional,… if it made you smile then please send in. Nearly all polio survivors I have met have had a very wicked sense of humour and at PPS conferences I have met hundreds.

So guys and gals between us we know and have had/have a variety of professional qualifications, employments, hobbies and experiences of life. We also see health and therapy professionals, have families and friends. Look through this issue and if you have anything that you could send us then please do. We now have an online and at home box file ready for your items. Remember nothing is irrelevant if it means something to you, then there will always be someone else who will benefit from reading it, even if it is only a one liner. You will find bits from Simon, Hilary, Zsuzsi, Verite, Val who makes the lovely photo cards for us and Toni.

I am going to kick this off with introducing you to… “My name is Debbie Ison and I am a Therapist. I run a Therapy practice in Lincoln in the United Kingdom called Tranquil Awakenings. I am both a Therapist and a Therapy trainer in a number of different therapies. That includes hypnotherapy, neurolinguistic programming, Reiki, mindfulness and meditation as well as a selection of other therapeutic interventions. I have been invited on here today to give you some assistance, so what I am going to do is to produce a series of short videos that give you some different examples of therapeutic interventions that you can use to assist yourself with the day to day challenges of this ongoing situation. You can also use these to help release any traumas of your past that come to mind that you are still holding on to. I hope you find these videos practical and useful. Give the different strategies a go and you may find that some of these techniques are more useful than others, but I hope you find one that is more successful for you. The first video is on EFT – Emotional Freedom Technique. A tapping based therapy. There are lots of variations out there but what I am going to show you is based on the training I have had in the past. Based on a gentleman called Gary Craig who created this. For more information checkout his free website www.emofree.com

If you do not have access to the Internet and would like more information then get someone to get in touch with us and we will put our thinking caps on.

Polio Survivors Network Updates

We hope you are bearing up as we enter our sixth week of lockdown in the UK and as we all continue to adjust and adapt to the changes in our daily routines. I thought it is a good time to update you on some of the decisions we have made but I also want to thank you for supporting Polio Survivors Network with your donations, feedback, time and input to our charity – it is much appreciated.

Due to the current pandemic situation we have taken the decision to cancel our Annual General Meeting (AGM) which we were hoping to hold in June 2020. We know that many of you will be disappointed as they are very enjoyable opportunities to catch up with one another and to reflect on what Polio Survivors Network has achieved and sets out to achieve. We hope that we can review the situation in the not too distant future to look at any plans for later in the year. To fulfil our obligation to the charity commission we must provide an annual report for 2019 and of course we want to share this with you, so we plan to provide a copy along with an upcoming newsletter.

If you have been on our website recently you will notice that on the homepage there are new links to helpful articles and advice related to polio survivors that are useful when talking with health professionals. You may recognise a couple of these from the enclosures with the last newsletter sent out. Remember that many health professionals know very little about polio so it can be very useful to take along a respected article that they can refer to.

Watching the news each day can be tough so we hope that this brief newsletter provides some welcome relief and distraction. Keep safe.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc(Hon), BA, CPsSC, MBACP

Chartered Psychologist. HCPC Registered Counselling Psychologist, www.sp-psychology.com

Chair Polio Survivors Network simon.parritt@poliosurvivorsnetwork.org.uk

__________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________—

Hilary writes…

What we have to think about now is our health and that we do not do anything that means extra work for others or a possible unnecessary early deterioration in how we manage. At this time of self isolation and assessments for support not happening if you live alone and do not have any care coming in at least think about approaching your powers that be to get on the list for an assessment when they are able to start again. It is not giving in, although it can seem like it, it is thinking ahead how to manage and enjoy your life to the very best possible. Many Polio Survivors will confirm they delayed asking but once started using aids and equipment and/or having care come in the most used phrase is ‘if only I had started this earlier’.

I am/was an Advanced Swimming and Life-saving Teacher and with preliminary Tutor for the Disabled working many hours a week till my PPS kicked in. I also did a variety of sports and hobbies that did not involve running because if I bent my left knee more than a few inches my legs would collapse. I evolved ways of doing actions differently and still do.

My First Tip is regarding stretching in warm water. We are lucky we have a hot tub as we cannot use our bath because we cannot get in and out without using a bath lift so we have that wasted four inches of water underneath the seat! .

1. Think about how much energy you have used already that day and have to use to get to the next

one. Do you have enough spare? Warm water will help relax your tight muscles. If you have enough

depth of water to do simple stretches and repeat them a few times resting in between try them.

Breathing deeper is much easier. Our hot tub is a Zen Sanctuary chosen as it has integral steps out

and in, and room to lie out flat for two, seated for 5.

2. BUT [oh there is always a but] remember Safety First. Can you, with help, get in and out safely and

is there someone who can be in the home/garden with you who could help you if you get yourself in

a pickle.

My Second Tip is trying to make sure you do not topple over – triggered by my hoovering biscuit crumbs up – not mine, Richard’s ☺ – and there was one piece that would not be sucked up so I started to bend down to try scratch it loose. This triggered me to stop and think as I have to do this straight legged and therefore a large portion of my body is in front of me and could topple me. I can no longer get off the floor easily. Apart from putting my left hand on my knee to ensure it does not collapse is there anything else I can do. Yes I got the loft lid pole off its clip on the wall and used that to scratch at it then hoovered it up.

If something happens and you have to change the way you do the action stop and think “can I leave doing it till later?” is there someone else or something else that I can use.

I just had a giggle to myself a few nights ago the cat brought a mouse in for the second time in 2 days left this one dead on the carpet in the middle of the hallway. No, I did not leave it, I used my walker and holding on very carefully bent down and using kitchen roll picked it up and got rid of it. We still have not found the first one and hope he ate it.

Zsuzsi Snarey, BSc Chem. MBChA MSSCh MA (Hons) Trustee writes as a Chiropodist…

Getting into a daily routine – Follow these tips for good foot health [Photos back page]

• Wash your feet carefully every day in warm soapy water (don’t soak them, as this might

destroy the natural oils) and dry thoroughly, especially between the toes.

• If your skin is dry, apply moisturising cream all over the foot, except between the toes.

• Lightly apply a foot powder.

• Remove hard skin gently with a pumice stone, but not if it is over a bony area or joint.

• Trim your toe nails regularly, using proper nail clippers. Cut straight across, not too short, and

not down at the corners as this can lead to in-growing nails. Use a foot file.

• Keep feet warm, and exercise to improve circulation.

• Always wear the right shoe for the job. Do not walk barefoot or in socks in the garden.

• Seek prompt treatment for burns, cuts and breaks in the skin, and for any usual changes in

colour or temperature. This is particularly important if you have diabetes.

If your feet hurt, something is wrong! You might need to contact your GP or a registered Chiropodist for advice even in these locked-in times.

Verité Reilly-Collins – PSN Trustee + Owner of aftercancers.com – April 26th

Silly me – it’s taken me weeks to realise self-isolation means others protecting me. And I thought it was to keep me away from infecting them! One always thinks one is invincible, but I have to realise at 81 with umpteen conditions, I must protect myself.

It has been a series of shocks; some good and some bad. First has been the wonderful volunteering spirit that has overwhelmed me; my fridge is bursting with goodies that people leave on my doorstep. On the other hand, I never want to see any of the three monkeys rolled out again for the daily Downing Street briefing on TV. What is the point, when they are incapable of giving straight answers to questions? I’ve taken to listening to Nicola Sturgeon: at least she gives straight answers.

Boris’ letter arrived at last, and whoever wrote it for him has no grasp of what was needed. It went straight into the waste paper basket. A day later a similar letter arrived from my Bank Manager; boy – what a difference; I’ve suggested the Bank take over as Cabinet speech writers. Full of sensible advice, he took us through the Bank’s 328 years of operation, reminded us of previous crises and how we all came through. Then ended with a charming, but funny story to lift our spirits.

It has been lovely finding Mark, a marvellous local grower who delivers a £10 box crammed with fruit and veg every Friday; no more foreign produce. And Steve the Butcher who supplies ‘oldfashioned’ ham, ‘French cut’ lamb cutlets and home-made sausages. I ordered 3 months of essential chocolate supplies from the manufacturer, at wholesale prices – and laundry liquid by the gallon is miles cheaper. Now, I’ll be able to do without a Supermarket shop – and save money. In future, I am determined to support local suppliers who have bent over backwards to help – not those firms who let their shelves be swept clean, knowing this would make them a profit.

[Editor – In Lincolnshire lots of farms, restaurants, cafes etc offering new ways of purchasing.]

Verité TIP – To stop touching your face hold a glass of GIN in each hand! ☺

NHS staff? By Veritéé Reilly-Collins

Surely we must ensure after lockdown, that those on the front line in the current crisis get a welldeserved pay increase.

And I don’t mean the Administrators, or hospital CEOs on their six-figure salaries.

Come to think of it, I didn’t see one photo of a hospital CEO battling on the front line. The ones I know fight tooth and nail to be in the front of the photograph whenever a Celeb or Royal comes into view; they are past-masters at smooching the press. As a medical journalist, I’ve fallen over enough of them getting in the way whenever something newsworthy was happening.

But suddenly, they were nowhere to be seen. This time it was the poor, tired staff at the end of their 12-hour shift on Covid-full wards, brave enough to be photographed with the marks of exhaustion clearly visible on their faces. Boris even admits he had reason to be grateful to a doctor from the Lane Fox Unit.

In future

For some time past the NHS has pleaded poverty and awarded pay increases to most staff that was under the rate of inflation. And as for Care Home Staff, etc. they were at the bottom of the list when it came to handing out pay awards.

But one thing was noticeable, from a Patient’s viewpoint, was the ease with which one was handled during the crisis. When it came to it, hospital staff gave me excellent care. Telephone ‘appointments’ worked extremely well, and when it was felt that I needed to see someone face-toface, Outpatients worked like a dream – no dreary waits for hours

The threat of coronavirus kept time-wasters well away, but – thinking about the future, any Administrator worried about ‘targets’, throughput, etc., the figures treated must have been worryingly low.

You can just see it: next year, when budgets are being prepared, instead of allowing a certain number of unoccupied beds for crises, etc., you can imagine their thinking that if they were down in numbers, they can cut the number of beds …… Let’s hope this time there will be an outcry, and a demand to copy European hospitals who do have unoccupied beds available for crises situations.

Rationing

Administrators love to boast the NHS provides healthcare ‘free at the point of use’. But this comes with rationing. To provide treatment for all means we can wait for hours in A & E, weeks to see our GP and months for an operation.

Here in Oxfordshire, my Consultant admits polio care is way down on the priority list, with hydrotherapy only ‘allowed’ for a pathetic number of sessions.

Contrast that with what happens in Europe: generally the system works faster and better, with the population overall paying slightly more in taxes/insurance for their healthcare, than we do here. But polio and PPS are still well catered for.

My excellent physio Esther (Polio Physio of the Year) even used to get a lot of information from the General Hospital at Lille, in Northern France.

Well done Wales

Nursing Times has just announced that the Welsh Government has said social care workers in Wales are set to receive a £500 bonus. This is part of a move to show staff in the sector that their hard work is “appreciated and recognised” during the coronavirus pandemic.

Speaking at the daily Welsh Government press conference, first minister Mark Drakeford said the one-off payment would be available to some 64,000 care home workers and domiciliary care workers throughout the country.

This is the first step; so let’s all write to our MPs etc. to make sure all front-line staff dealing with Polio and PPS across Britain get a tangible benefit, to repay their devotion to duty during this past crises.

[Editors Note – The following has been shared widely on Facebook. A lot of this also relates to those of us who are caring for someone in our home and for those carers that we either employ ourselves or purchase their help from an Agency.]

All care workers can have a breakdown… be patient with them.

Those caring are carrying burdens and worries they can’t discuss with you. They find out things before the general public they can’t share with you.

They feel unsure. They are questioning everything they used to know. They are scared for their families. They are scared for themselves. They feel unprepared to fight this fast-changing elusive virus. They feel guilty for increasing the risk of our loved ones.

They are obsessively thinking… “Did I wash my hands enough? Did I touch my face today? Is changing outside and going straight to the shower going to be enough to keep my loved ones save? Are we going to run out of PPE? Is it safe to change the PPE recommendations because we don’t have enough to go around?”

The gyms are shut down. Their social outlets removed and churches closed. They struggle to sleep even though they know they need sleep to stay healthy and sharp. They want to hug their children but are too afraid. They want to see their parents, friends, loved ones, the people they turn to when they need to feel loved and reassured. But that would be foolish and risky.

They are concerned about their work family. They see the stress on their faces. They are trying to make the right decisions when no one really knows what the right decisions are.

The recommendations are changing daily. They are spending hours reading, learning, thinking through scenarios and trying to be prepared for the unknown. They want to provide the best care to their patients and remain safe.

Their patients can no longer have their loved ones with them. The healthcare workers are now their daughter, son, preacher, sister, brother, friend. They are the reassure, voice of reason, the sort-hearted, strong backed person they can rely on.

… so for those of you that love a carer or healthcare worker please be patient with them. They are struggling.

Editor [Who sits on both sides of the Fence. I am a Person being Cared for and also a Carer when the paid Carer goes home] Adds…. This is not an easy time for everyone. You may be living alone so are caring for you, or you could be living with someone else whose needs you are caring for as well as your own. Could you do with a virtual hug and a few minutes chat now and then? It is ok to go into another room [try only doing this in one room, the toilet is a good place as you can pretend to flush it down the toilet] and let off steam, take a deep breath, let out a huge sigh that relaxes your shoulders and go back to your caring tasks. You are doing the best job that you can now that your medical appointments are by phone or postponed and all your therapy sessions cancelled. What you are managing is definitely well appreciated. BUT it is also tough for the person being cared for. Maybe they are rebelling against the odd thing now and then because they want to take some control of something.

The only thing polio survivors have in our favour is that we have been through many struggles throughout our lives since catching polio. We achieved way above what was expected. We did not give in then because we were determined, strong willed and if anyone suggested that we would not be able to do something then we gave it our all and proved them wrong. Think of all you have achieved in your life, places been and people met? Where did your Polio take you?

OK, so with Post-Polio Syndrome we have to change some of those habits of a lifetime and not try and do it all at once. Pace and Rest, do a bit, rest a bit, do a bit more. By using aids and assistive devices, some never used before so is not easy. Then asking for the help of someone else to do the difficult bits goes against the grain doesn’t it. If we can save wasting energy by any or all of these suggestions, most of us have less pain, less fatigue and are happier.

Toni writes… Continued from back page photograph.

What is behind me is a full wall mural of the Val d’Orchia in Italy (definitely worth putting into Google to look at more pictures, it is a UNESCO heritage site). I was very fond of my husband’s nanna who died just as we moved into our home. I was kindly included in her will so wanted to buy something special in her memory. I have always been in love with Italy and as we had to decorate our new place it would be a good opportunity to indulge with something special. We had a photo turned into wallpaper and I am so pleased we did.

My husband’s original idea was that I’d sit at the table with a glass of Chianti looking over the Val d’Orchia and wouldn’t need to pop on a plane every year or two to visit. It didn’t work! I think it makes me miss it more.

Last time we were in Italy my husband took us on a long drive and wouldn’t say where we were going. Eventually we turned a corner and my son & I both said “It’s our kitchen”! He’d found the exact location that the photo was taken from. We then had a wonderful time driving around our mural!

I send you my fondest regards and hope that you can continue to keep well during these challenging times. Contact details are page 13.

Do you shop at Amazon? If you go through www.smile.amazon.co.uk and sign up to have Polio Survivors Network as your chosen charity then 0.5% of your purchase price is donated to PSN by Amazon. Costs you nothing.

Here are a few links that you might like:

MSE – Money Saving Expert, 15 free ways to relax and look after yourself	https://bit.ly/3bzDvLV
Sunny Skyz – Good news website with lots of video clips and bits	https://www.sunnyskyz.com/
YouTube – West End Shows – a new one each week	https://www.youtube.com/theshowsmustgoon
The British Museum using google maps. Link starts in Egyptian section	https://bit.ly/2Vujtg8
This link is a virtual tour of prints and drawings	https://bit.ly/2KwlYYY
This one Arts and Culture This one on YouTube	https://artsandculture.google.com/partner/the-british-museumhttps://www.youtube.com/user/britishmuseum/featured
The Natural History Museum – Life of the Blue Whale	https://www.nhm.ac.uk/bluewhale/
This Link Nature Live Online	https://www.nhm.ac.uk/visit/whats-on.html?group=naturelive
This Link with Sir David Attenborough	https://bit.ly/2zdXZvp
The Smithsonian Magazine – Five Egyptian Heritage Site Virtual Tours	https://bit.ly/3bv7m8o

Your Library Card Did you know you can use your library card to access 100s of free eBooks, eAudiobooks and eMagazines for free from your local library. Check their website.

POST POLIO NEWS [ppn] – www.post-polio.org.uk

An online news cutting service from Chris Salter that specialises in news relating to polio, post polio, disability and other health related issues.

Twitter, Newspaper, RSS feed, Facebook, LinkedIn, Daily digest emails.

COUPLE OF IDEASLet your imagination run riot with what you have in your home that you could use.On the left DIY Face Shaped Painted Plastic Bottle Planters. More examples on Pinterest. pinterest.comOn the right is from Debbie Ison, This is a candle holder healing jar, to send love, light, healing, and hope out into the world.

Dain aged 9 to Mum“If every pork chop was perfect we wouldn’t have any hot dogs”.“Thanks for explaining the word ‘many’ to me it means a lot.”Anonymousyyuryyub, icuryy4me – translate.What four letter word can be written forwards, backward, upside down and still be read left to right.Carla, a friend in the USA, offers: There is a shop assistant in the butchers shop who is 5 feet two inches tall and he wears size 13 shoes. What does he weigh?

DIY KITCHEN WIPES – see page 10Use good quality kitchen roll Cheaper roll will deteriorate

Micki Minner, Polio Epic [since 1985] Tucson Arizona www.polioepic.org

Micki was contacted mid April by the CBS Sunday Morning Show looking for a Polio Survivor that remembered the Quarantine and Isolation of the past pandemic. Local to Tucson, Joanne Yager agreed to do this. She was 15 at the time of her polio.

This was aired yesterday, 3.5.2020. You can watch Conquering the Polio Epidemic on CBS Sunday Morning on YouTube. Well done Joanne, that can’t have been easy!

https://m.youtube.com/watch?v=AyVZejcWYc8&feature=youtu.be

☺ Just seen a news report about the stresses and strains of self-isolation. It has been reported that some people are going crazy from being in lock down!

It was strange, actually, because I had just been talking about this with the microwave and toaster and all of us agreed that things are getting bad. I didn’t mentioned anything to the washing machine as she always puts a different spin on everything, and certainly not to the fridge as he is acting cold and distant.

In the end the iron calmed me down. She said everything will be fine, which surprised me because she’s usually the first one to apply unnecessary pressure and get steamed up over nothing!!!

From Lincolnshire Post Polio Network Newsletter then named the LincPIN in March 1997

THE POST-POLIO HOKEY KOKEY – Rom Amundsen, Hawaii.

Jockey shorts left leg, jockey shorts right leg, long underwear left leg, long underwear right leg, left sock, right sock.

Left knit dancer’s legging, right knit dancer’s legging, left pantleg, right pantleg, left shoe, right shoe.

STAND

Up shorts, up long underwear, up leggings, up pants, tuck, button, zip, SIT, buckle,

Pant, pant, pant, pant.

In other words it is possible to dress the bottom half of your body without standing up several times in order to arrange your various layers of clothing. It takes a while to learn, and you cant be too groggy in the morning when you do it. But you can actually get all of your layers started on your legs, sort of telescoped into each other and then stand up only once and pull them all over your butt. How many hundreds of stand-ups and sit-downs I’ve wasted in the past seven years I couldn’t begin to count.

The hazard here is that it is possible to get confused and do:

Jockey shorts left leg (etc as above), left pantleg, long underwear right leg, right sock, jockey shorts right leg, right legging, right pantleg, STAND, up jockey shorts, tangle, fall, roll over to telephone for help.

Under the current situation where we cannot access our therapists, chiropodists, chiropractors, massage therapists, hairdressers, beauty salons, etc, it is nice to dream we can…

I suddenly remembered back about 15 years ago when in the States…. I said this to Richard … “Oh I so wish I could go somewhere and be pampered.”

His reply, “ Sorry Hils they do not make them big enough!”

Page 10

DISABILITY HORIZONS – Assistive Tech & Products. Just mentioning a few… An adjustable drink holder for wheelchair. Nimble finger cutter looks great for opening packages. 10 top apps inc. where to find accessible public toilets, Red Panic button app and more. Trabasack, four different styles, of laptop bag/tray. Have one and it is useful specially for meetings. Buckingham crutch storage accessory, carry a small bottle of water in holder on your crutch. EasyTravelseat airplane transfer chair £299 – £399. Seen video worth trying if you fly when we can again. Knork – knife and fork in one £10.95, had these for some years now and use every day. PPE equipment – some now in stock.

HINTS TIPS AND BITS TO BRIGHTEN YOUR DAY

From Richard Boone. I am American and lived in Illinois. Near the end of the 19th Century my Grandmother heard there was going to be a doctor the next day in the village 12 miles away. The next day she got on her horse and rode the 12 miles returning most upset because it was only a MAN.

A doctor who after hearing my history of my polio and paralysed left leg asked ‘Can I stick pins in to see how far paralysed?’

Helen, our Carer is going to make us some cake for the weekend. She got the Free From Packet Mix out from the cupboard and read the instructions. She just asked us “Do you want a gooey or firm brownie?”. We all collapsed in fits of laughter.

Mary Guild – Scotland shares Lockdown Lingo from Facebook Group – Club 971 Lockdown Humour. Here are a few examples:

1. Le Creusot wrist – It is the new ‘avocado hand” – an aching arm after taking one’s best saucepan outside to bang during the weekly ‘Clap for Carers’. It might be heavy but you’re keen to impress the neighbours with your high quality kitchenware.

2. Furlough Merlot – Wine consumed in an attempt to relieve the frustration of not working. Also known as “bored-eaux” or “cabernet tedium”.

3. Quentin Quarantino – An attention-seeker using their time in lockdown to make amateur films which why’re convinced are funnier and cleverer than they actually are.

4. Mask-ara – Extra make-up applied to ‘make ones eyes pop’ before venturing out in public wearing a face mask.

Alison, my daughter in Canada, offers… DIY Kitchen Wipes

See pictures page 8. You will need a plastic container that will take a Good Quality Kitchen Roll. If plastic container shorter than the roll you can cut the roll down. You need water, rubbing alcohol, washing up liquid. Optional—Essential oils [my personal preference is 35 drops of Lavender and 35 drops of Thyme].

Cut the kitchen roll with a sharp knife to the size of your plastic container. Add 60ml of rubbing alcohol [if using essential oils add these to the alcohol first] to 350ml of water. Then add 4 drops of washing up liquid.

Pour this over the kitchen roll slowly to give it a chance to absorb, once fully absorbed grab the carboard tube and gently pull to remove it. The kitchen wipes will now pull from the centre for use. Watched her live using them.

Fun for kids of all ages Put some food colouring drops onto a plate of regular whole milk and then small ball of cotton wool with a little washing up liquid into the centre of the plate…

Disability Horizons magazine is an online disability lifestyle publication that aims to give disabled people a voice.

www.disabilityhorizons.com

Founded by two disabled guys in 2011, Disability Horizons publishes articles on a wide variety of topics, all to support the aim of a world where disabled people live exactly as they choose to. You can sign up for our newsletter to get all our articles directly to your inbox, along with our Ultimate Disability Survival guide.

All articles are sourced directly from our community of readers, making Disability Horizons a lifestyle publication about disabled people, for disabled people. Articles span topics from technology, relationships, sports, employment and travel. To help our community connect with each other, share, learn, support and be supported further, we’ve also created the DHorizons Tribe Facebook group.

From Coronavirus UK: a practical guide if you’re disabled. 18/3/2020 Using carers/PA’s during the coronarvirus outbreak

If you use carers/PA’s, ask them to wash their hands thoroughly when they enter your home and regularly when performing tasks for you.

As coronavirus can live on surfaces for some time, carers should clean surfaces they have touched, such as door handles and worktops, before they leave.

You might want to consider them wearing personal protective equipment [PPE] when doing things that bring them in close contact with you, such as bathing and changing.

PPE means disposable plastic gloves, a plastic apron, fluid repellent surgical masks and eye protection when there is a risk of splashing.

These, along with waste from cleaning surfaces they have touched, should be put in a rubbish bag after use and left for 72 hours away from anything else before being thrown in the normal bin.

However, it is worth noting that the government guidelines only stipulate the use of them when the person they are caring for has symptoms.

If you would like your carer to use PPE, if you use carers through the council or company, ask them about providing PPE.

If you employ carers yourself, you may need to purchase it yourself or see if your carer can. We’ve just started selling PPE on the Disability Horizons Shop.

It might also be worth calling your local GP, district nurse, healthcare worker or council to find out if they can help with this.

If they are displaying symptoms, they shouldn’t come to work and should self-isolate at home— see more on this below.

If possible, it would be worth having a list of back up staff who you can call on if one of your carers becomes unwell. If this is not an option, or you would like more advice on this, contact your local council for more information.

You, and your carers can find more advice on how to work in these circumstances on the Carers UK and government websites:

Carers UK www.carersuk.org We give carers expert advice, information and support. We campaign and innovate to find better ways to reach and support carers.

Office for Disability Issues www.gov.uk We support development of policies to remove inequality between disabled and non-disabled people.

Val Scrivener tells us a little about herself, the person behind the photocards.

Bedford has always been my home and, until the age of 17, I suppose I lived a fairly uneventful life. I loved sport and, even in my first school was winning races on sports day (winnings were a 2/6d postal order which bought me a book at our local bookshop). I high-jumped, was in the netball team, swam and also played badminton at our local youth club. I was just beginning to enjoy going to the twice-yearly youth club country dances when polio struck, paralysing my right leg. I returned to school (now in VI form) with a stick. Sport, gym and games were out and I began to feel that I fitted in nowhere and became, I suppose, somewhat isolated knowing that my former friends and team-mates were spending their lunch hour outside practising.

My father was quick to see the void in my life and one day came home with a box camera. Never did it occur to me at the time that his thoughtfulness would lead to a lifetime hobby. Much later in life I went along to the local camera club to learn how to use my newly acquired, second-hand, SLR camera and there I became fully launched as an avid lover of photography. With my late husband, John, I began some weird and wonderful travels around the world in my school holidays as, by now, I had begun teaching at a local lower school. I now restrict my travelling to the UK following several falls, but there is so much out there to photograph if you look for it.

What makes you passionate about supporting Polio Survivors Network?

I suppose the first and most obvious answer is to say, ‘Because I had polio.’ I, like many others, thought over many years that, although I have never since been able to partake in sport, I made a pretty lucky recovery. I could still walk and was able to lead a normal life. It was a bit of a shock when things began to deteriorate and I was told that the neurons boosting my muscles were only working at 10 percent capacity and that being overactive was simply wearing the muscles away.

I admire the research that seems to be taking place in the USA and I agree with comments regarding the lack of knowledge in this country, so few of my acquaintances had any idea that problems could resurface in later life once ‘recovered from polio’. It is brilliant being updated with the knowledge of recent research via ‘Post Polio Matters’. I had hoped to make the AGM this year as I feel meeting up with fellow members is very much like meeting up with family, but sadly the current situation prevents us meeting at the moment.

What gave you inspiration for the beautiful photocards sold on behalf of PSN?

I have, over the years, made special cards for friends and some time ago I had the thought that I could also make and sell cards to raise money. Being a PSN member my mind went immediately to this but I knew that I would have a better chance of selling them locally, to people who knew me. My local church seemed the ideal place to set up a pitch but in order to sell the polio cards I felt that I should be doing the same for the church. This I do once a month but it all takes time as I take the photos, print them, cut the prints to size, print details on sheets of card, stick the photos on the card and do any necessary trimming.

How can we place an order with you?

You will find the details on the back of each newsletter or on the PSN website. The orders will arrive in packs and you may ask specifically for a mixed pack/a pack showing animals / transport / scenery / flowers / cards suitable for men – it’s your choice. I can then, at the time of ordering, give you the address to which you send a cheque.

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee/s – Vacancies please apply for more information

Operations Team

Phone Enquiries – Hilary Boone – 01522 888601

PSN Admin, Email Enquiries and Website – Toni Dunlop – psnadmin@poliosurvivorsnetwork.org.uk Printing – Imprint Colour Printers, Lincoln

Management Committee [Trustees]

With grateful thanks to the generous legacy from Ms A Brown,

membership will now be FREE for as long as our funds remain above £10,000.00

UK Members – newsletter by post or email or both. Overseas Members newsletters by email

Website – www.poliosurvivorsnetwork.org.uk

Write to us at PO Box 954, Lincoln, LN5 5ER, U.K. Email psnadmin@poliosurvivorsnetwork.org.uk

Phone us on 01522 888601 – we will ring you back when we access our messages

All donations, small or large, towards our work are gratefully received

Donate by cheque to Polio Survivors Network

Our PayPal address is treasurer@poliosurvivorsnetwork.org.uk

Direct PayPal donate link: https://bit.ly/2KzyAyE

Editors Note:- Articles from Polio Survivors and Health Professionals welcomed

The most accepted article by NHS professionals we have found is: PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

NB Respiratory and Sleep Problems Section very informative. ——————————

GOOD ANAESTHETIC ARTICLE – English version used by many PPS Groups POLIO PATIENTS AND SURGERY – Information for health staff.

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf

Printed copies on our headed paper with permission are available.

because WE’RE STILL HERE! www.post-polio.org.uk

Toni writes…psnadmin@poliosurvivorsnetwork.org.ukSo I was chatting with Hilary on Skype the othe day and she wondered what was behind me as sat at my kitchen table, l me show you…Cont. on page 7

Page 12Left – Fran Henke Right – Val Scrivener

Photos on rightPage 4Zsuzsi Snarey article on how we should look after our feet. Getting into a daily routine. Follow these tips forgood foot health

See

Page 2

In the Editorial

Post Polio Matters Volume 10 Issue 1 Read More »

Post Polio Matters Volume 9 Issue 12

Polio Survivors Network is the working name of Registered Charity 1064177, The Lincolnshire Post-Polio Network

Printed by Imprint Colour Printers Lincoln 01522 539570

Lincolnshire PostPolio Library 100+ articles

Polio Survivors Network Newsletter

MARCH 2020 Volume 9, Issue 12 of 12 [108]

POLIO SURVIVORS are KNOWN WORLD WIDE TO BE STRONG WILLED and VERY DETERMINED.

COMMENT SEEN ON FACEBOOK

I SURVIVED the POLIO VIRUS 72 YEARS AGO

IF THE CORONAVIRUS COMES ANYWHERE NEAR ME

I AM GOING TO KICK IT INTO TOUCH.

WE have to STAY IN so here are some Googled VIRTUAL ONLINE TOURS

London – The British Museum and Buckingham Palace

Paris – The Louvre and the Musee D’Orsay

Amsterdam – Rijksmueum and the Van Gogh Museum

Berlin – Pergamon Museum and Berlin Zoo

Italy – The Uffizi Gallery in Florence and the Doge’s Palace

New York – Central Park, the Bronx River and the Gugenheim

Washington DC – The White House, The National Gallery of Art + 48 more Los Angeles – The J Paul Getty Museum and tour houses for sale.

Brazil – MASP in Sao Paolo, Museu Nacional before the fire in 2018 Mexico – National Museum of Anthropology

Virtual Tours of the Pyramids in Egypt and Macchu Picchu in Peru.

The Shedd Aquarium in Chicago let the penguins out for a look round.

Atlanta Zoo — Cincinnati Zoo

Georgia Aquarium – Monteray Bay Aquarium Oregon Zoo – San Diego Zoo

Galapagos Islands and The Great Barrier Reef

Experience Disney Rides to Football Stadiums Theatre and Opera Performances to NASA

Page 2

This publication is provided as a service to those seeking such information and is not intended as a substitute for professional medical care. The opinions expressed in this publication are those of the individual authors and do not necessarily constitute endorsement or approval by the Polio Survivors Network. ALWAYS consult your doctor before trying anything recommended in this or any other publication.Articles in this publication may be reprinted in full with acknowledgement of this Newsletter name, volume, issue and date. Exceptions are where written by an external author/newsletter when permission must be gained from the original author/s.

QUICK NOTES

Page 2	Contents
Page 3	Editorial, Hilary Boone
Page 4 to 5	Message from Our Chair, Simon Parritt
Page 6	Trustee Verité Reilly Collins writes…
Page 7	Post-Polio Health International writes about CORONAVIRUS [Covid-19} AND POLIO SURIVORS.
Pages 8 to 9	MEDICAL MANAGEMENT OF POST-POLIO SYNDROMECarol Vandenakker Albanese, MD, University of California, Davis, Department of Physical Medicine and Rehabilitation.Reprinted with permission from Post-Polio Heath International Newsletter
Page 10 to 11	NUTRITION AND HEALTH, by Trustee Zsuzszanna Snarey.
Page 12 to 13	Waiting for Normal. by Member Marcia Falconer PhD, molecular and cell biology.
Page 14 to 15	What I am doing for the upcoming COVID-19 (coronavirus) pandemic by James Robb, MD UC San Diego
Page 15	Debbie Ison, Tranquil Awakenings writes a short piece for our newsletter.
Page 16 to 17	NHS info on CORONAVIRUS
Page 18	A new member Joy.
Page 19	Information from Slides taken from a Presentation to Rotary in Lincolnshire. A Dip into Polio from a Polio Survivor – September 9th 2013.
Page 18 – 19	Handwashing Smiles and Songs. A few more things to make you smile.
Page 20 to 23	Things to make you sing, smile, find great things to do online.
Page 24 to 25	Two items from Post Polio News [ppn] by Chris Salter.
Page 26	Best info for Polio Survivors repeated every newsletter to give to NHS staff. COPIES ARE PROVIDED WITH THIS NEWSLETTER.
Page 27	Contact Info.
Back Page	Toni Writes…

Editorial by Hilary Boone.

We have tried to make this newsletter a mix of information from around the world and plenty of things to make you smile. ☺ All your Trustees and Toni know that this is a worrying time and we suggest that if you don’t want to read a page now then don’t read it. Save it for later or not at all. Richard and I have given up not watching the news for long each day. Photo all my family together Xmas 2019.

The best advice I have seen to help us get through all this is that we remember that the following are all free: Sunshine, birdsong, new buds opening up, flowers and their scents, the wind in the trees, babbling water, cuddles from animals, and the laughter of children playing.

We kicked the polio virus that invaded our bodies into touch and have lived amazing fulfilled lives. We were not beaten by that virus and we probably have the most experience to deal with this one if we get it and we are not going to be beaten by this one either… ARE WE?

COMPETITION… Next lines for ‘I just dropped my IpadPro on my foot in front of my little toe’… and yes it really really hurts. The funnier the responses the better. Laughter is the very best medicine.

Many places have advised that anyone with a long-term medical condition should prepare a bag with basic items, a couple of days medications, and medical notes just in case. We have included a couple of copies of the two major articles best accepted by the NHS and copies of the anaesthetic card to help you.

Anyone getting the emailed copy who cannot get copies printed off in UK please contact us and we will post to you.

PEOPLE WHO ARE AT HIGH RISK. [See Article from NHS Coronavirus on pages 14 and 15] You will be contacted by the NHS by Sunday 29th March 2020. Do not contact your GP or healthcare team at this stage – wait to be contacted.

Dave Lupton aka known Crippen, one of the leading disabled cartoonists in the country, has even more cartoons on his website – www.crippencartoons.com . On page 23 you will find one he did for Polio Survivors Network after Richard made a comment, the other is a newer one that I hoped would add a smile.

SUNNY SKYZ LIVE, LAUGH, LOVE. Chock full of video clips, inspirational stories, photographs and much more all to brighten your day www.sunnyskyz.com/

PINTEREST www.pinterest.co.uk Just in case you don’t know about Pinterest, it is a massive bulletin board of cards from people about so many different subjects. You can search on the cards and then click and go to that persons page to read about the subject.

There are recipes from many countries including gluten free, keto, etc. Knitting and crochet patterns, games, ideas for kids Lego, jewellery making, making toys, and how about some ideas for things to do in the garden.

Just look at what you can do with old jeans.

www.pinterest.co.uk/pin/315603886391834438/

This is just one person telling you how to prepare the jeans. You can save all the cards you want to in your own folders.

If you live alone then you can search for recipes, card games and all sorts of things for one person.

MESSAGE FROM SIMON, OUR CHAIR

IT IS NORMAL TO BE ANXOUS OR SCARED.

It is hard to know what to say to you all at this time. We are all part of the at risk groups and for many we probably fall into more than one at risk group. Personally I can count at least 3. So, it would be odd not to be anxious or even at times scared. However, I think for many of us, particularly those of us with major impairments from polio, we have lived with a kind of anxiety around our health and well-being most of our adult life.

EVEN PSYCHOLOGISTS GET SCARED.

As a Counselling Psychologist I am trained to help with those with extreme anxiety. In the last 10 years it has been, perhaps, the most common reason that people have sought my help. But because I was a psychologist, I was not and am not immune, at times, from anxiety. We are all human, even psychologists! At points when my breathing was bad or I developed other conditions, or my PPS was getting worse, my anxiety could sky rocket. I say this because anxiety and fear around serious events are normal and not always easily managed, even with well-tried strategies. However, maybe we have an advantage over others as we can draw on our resources and the very real past experience of polio and being a disabled person in a non-disabled world.

ISOLATION BUT NO LONGER ALONE

So now this is no longer a minority experience but the life and times of everyone. Do we not know about the restrictions of socialising and needing to rely on others good will for everyday things? As polio survivors we were trained to refuse help, to push on, to be strong and brave and not show our feelings. Whilst that may have had positives, it came at a high cost, a long deep underlying sense of anxiety and stress, always trying to be ‘as good’ and ‘independent’ physically yes, but for many also emotionally. Now everyone has to face up to the reality that we all rely on and need one another, no one is an island, that is a dangerous myth, as we now see!

ARE WE THE NEW EXPERTS?

So when we are locked in at home how will we manage to stay well, sane and healthy? I suspect that the reality is that we can show others a trick or two about being on our own or with just our partner, partner/carer or carer. We have had to find ways of being that didn’t involve rushing to the pub, the football, working on the allotment or taking weekend breaks in Prague, Magaluf or whatever. Even friends can be thin on the ground as we grew up and aged.

So I think in many ways we have lots of inner skills if we think about it, that others have no concept of. We live with the reality that life is fragile and whilst we want to live long and prosper, we live with the reality that at least once we nearly didn’t, that eve since we were always at greater risk than others, even if we have somewhere denied it. Yes, after having had a rather inconvenient brush with the polio pandemic, we do have the ability to manage our scars, physical and emotional. As I like to say, ‘no-one gets out alive’, but for many of us we have learnt the reality of that the hard way and had to work with what we were left with and enjoy just being here, now, today.

ANOTHER VIRUS THAT CHANGES LIVES

Now the world will be here too with us. We are in a way no longer alone. Help is no longer seen as begging or a hand out, or charity but a basic human value that everyone can now empathise with because they are all potential victims of Covid-19, their jobs, children, education, grandparents, finances and dally life will be affected and restricted and maybe never the same again.

We know what it’s like, and how to deal with having a virus that even if it doesn’t kill you, it means the rest of your life will never be the same again.

SOME IDEAS AND THOUGHTS ON HARNESSING WHAT WE ALREADY KNOW.

1. At last, the world has to slow down. So, we don’t have to keep up or be excluded anymore.

We can take our time, there’s now plenty of it.

2. Pace your day and pace your activities – does that sound familiar to us? Well now it is

almost the best health advice as we need to savour each moment of each activity. There IS

no rush and now everyone else has to live at our pace – this is and was always our reality.

3. Yes, we worry, we are anxious, we are scared sometimes, but there are no absolute

solutions, no pill, no magic medicine man who we think is there and don’t have access to

who will get us well and back to the grind stone of modern life. But it is OK to feel.. To say

how you are feeling our loud.. Even if you are by yourself.

4. Now is the time to make the day fit you, not the other way round. Some of us are night owls,

some morning people, some like to drift off for an afternoon nap. All this is now absolutely

fine. The one thing is to remember this isn’t about escaping reality but about shaping it for

you and your way of being. You are your own boss and time manager, take control.

5. Also there is no benefit, if you are someone who is anxious, worry and ruminate on the

dangers of life to expose yourself to checking the news every 5 minutes. Inform yourself

yes, then switch off and set a regime of times to read, listen to an audio book, learn about

something new – all just for fun, anything you enjoy for itself only.

6. One worry is that for many of us what little activity we did have might now be hard to do,

and as we age even PPS people should always exercise within our capacity, no or less than

optimal exercise will accelerate our decline. So, find activities to build into your day, even it

is walking round the room a few times regularly, or maybe if you are a wheelchair user

dancing arms to your favourite music.

7. Finally we will all get overwhelmed with fear and anxiety at times, so relaxation techniques,

breathing, meditating if you know how [google if you do not, see Debbie Ison piece on page

xx] and of course eating well and resting as much as you need will all help, and maybe this

time will have some lasting positives in our lives.

PLEASE READ.

I highly recommend reading (or is it order you to read?) the post from Alain de Botton and his School of Life, much of what I have said he has put so much better, I have just given you the link : https://www.alaindebotton.com/the-school-of-life/

You Tube – Alain de Botton – many choices.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc (Hon), BA Chartered Psychologist. HCPC Registered Counselling Psychologist

Chair Polio Survivors Network simon.parritt@poliosurvivorsnetwork.org.uk

DOODLE SPACE

© Polio Survivors Network – Volume 9, Issue 12/12 [108] MAR 2020	Page 6
PLEASE SHARE EXPERIENCES OF YOUR POLIO LIFE Tell us about the solutions you have found that work for you Tell us about the issues you have managing your post-polio lifeHelp us build of possible solutions to publish in our newsletterNEXT ISSUE – Deadline May 15th 2020

VERITE REILLY COLLINS PSN Trustee and Author of aftercancers.com

As a polio survivor, I expect we are self-isolating due to Covid-19.

As a medical journalist, I edit a website www.aftercancers.com – giving a patients’ view of cancer care.

We are told laughter is the best medicine, so can I ask if you know of any funny stories, or cartoons, I can use to cheer up people worried about Covid- 19, who read aftercancers.com or the Polio Survivor’ Network Newsletter?

More stories on https://aftercancers.com/category/humour/

More Jargon February 23rd 2020. – Our funny old ‘medical’ language.

Next time they’ve run out of old magazines in Outpatients, pick up a newspaper and see how many of today’s medical terms could have another meaning..

For starters… How many more can you think of?

Artery Caesarean Section Cat Scan Cauterise	The study of paintings.A neighbourhood in Rome.Searching for KittyMade Eye-contact with Her.
Coma D & C Dilate	A Punctuation Mark.Where Washington Is.To Live Longer.
Enema	Not a Friend
Fester	Quicker
Fibula	A Small Lie
Hangnail Labour Pain Medical Staff Morbid	Coat HookGetting Hurt at WorkDoctor’s Cane.A Higher Offer
Nitrates	Cheaper than Day Rates
Outpatient	A Person Who Has Fainted.
Pelvis Recovery Room Rectum	Cousin to ElvisPlace to Do UpholsteryB***dy Nearly Killed Them
Secretion	Hiding Something.
Seizure	Roman Emperor
Tablet	A Small Table
Urine	Opposite of You Are Out
Varicose	Nearby
Vein ……………………… ………………………	Conceited.………………………………………………………………………………

Coronavirus (COVID-19) and Polio Survivors

Everyone seems to be talking about, worrying about and asking questions about coronavirus, and that includes polio survivors. As we have seen this is a rapidly evolving situation and what we know today may change next week or next month.

Some facts that are not likely to change are:

Polio and the late effects of polio do not, in themselves, cause immune compromise.

Therefore, polio survivors are no more likely to contract a coronavirus infection or develop serious illness from it than people who never had polio!

Most polio survivors in the United States and Canada are over 60 years old, which places us in the “higher risk” category with a greater likelihood of developing severe disease after being infected with the virus than younger people.

Polio survivors who had breathing muscle involvement with their original illness and/or now have respiratory problems of any kind are at “high risk” when they become ill with any respiratory infection, including coronaviruses.

Just as it is for people who never had polio, if a polio survivor has diabetes, heart disease, severe kidney disease, or are immunocompromised due to a medical condition or certain medications, then they are at high risk of developing complications if they contract COVID-19.

What you can do: follow CDC guidelines about infection control—washing hands frequently, disinfecting frequently touched surfaces, covering coughs and sneezes, avoiding large crowds especially in poorly ventilated areas, staying home if you are sick and avoiding non-essential trips, such as long airplane rides or embarking on a cruise ship.

If you do develop cough or fever (temperature over 100.4˚F), especially if you have had known contact with someone who has coronavirus or has recently been in some of the “coronavirus hot spots,” call your doctor for advice about what to do next. If you have increased trouble breathing, you probably need to be seen by a doctor at a hospital but have someone call

ahead so that the emergency room is prepared for your arrival. Likewise, if an ambulance is called to transport you please let them know in advance that you may have coronavirus so they can take appropriate precautions.

For the latest information about the coronavirus, check the CDC’s website at www.cdc.gov/ coronavirus/2019-ncov/. If you have any specific health questions about yourself, contact your physician.

Post-Polio Health International

including International Ventilator Users Network

St. Louis, Missouri

www.post–polio.org, info@post–polio.org

314-534-0475

Medical Management of Post-Polio Syndrome.

Carol Vandenakker Albanese, MD, University of California, Davis, Department of Physical Medicine and Rehabilitation.

As the number of polio survivors gradually decreases in the US, finding medical providers familiar with post-polio syndrome is becoming more difficult. An individual provider is not able to develop expertise when experience is limited to a few patients a year. This necessitates that the polio survivor become an “expert patient”.

The term “expert patient” originated in England and refers to patients who have the confidence, skills, information and knowledge to play a central role in the management of life with chronic diseases. This concept has become part of medical education in the United States. Medical students are trained to provide more patient education and rely on the patient as part of the medical treatment team to contribute to decision making regarding their care.

To be an effective “expert patient” it is important to keep expectations realistic. Do not expect a primary physician to know much about post-polio syndrome. Be able to provide concise, scientifically based information for your physician. The Post-Polio Health International website (www.post-polio.org) has information for medical providers that can provide basic medical information and serve as a resource for specific conditions. Do not bring stacks of unreferenced information from the internet to your provider!

Establishing a good relationship with your primary doctor is key to accessing the medical care you need for the symptoms related to aging with polio sequelae. Medical management of postpolio syndrome includes management of the primary symptoms, treatment of underlying or associated conditions and optimizing health and wellness. Individual treatment plans include a detailed medical history and exam to identify problems or health risks and goals. Identifying associated medical, neurological, musculoskeletal and psychological conditions are part of the process. Evaluation may require consultation with a specialist such as a physiatrist [rehabilitation consultant in the UK] neurologist, orthopedic surgeon, pulmonologist or otolaryngologist. Interventions may include referral to a physical therapist occupational therapist, speech language pathologist, orthotist or psychologist.

It is important for providers to recognize the unique physiologic aspects of residual paralysis due to polio. Polio survivors have a number of muscles that have lost some percentage of the normal innervation. These muscles cannot strengthen like normal muscles and lose proportionally more strength with aging. If polio occurred in childhood, bone and joint development were affected in the involved limbs.

Muscle imbalances and joint deformities alter body mechanics and put increased stress on musculoskeletal system, resulting in early degeneration. Body composition, or the ratio of muscle, fat and bone may be significantly altered and affect metabolism. Many of the symptoms of post-polio syndrome are like those of aging but accelerated and more complicated. Goals of treatment are to minimize symptoms of post-polio syndrome, optimize body mechanics, protect weak muscles and joints, decrease physical demands on the body, treat associated conditions and optimize wellness.

Fatigue is a very non-specific symptom with many potential causes and contributing factors. Fatigue is exacerbated by poor sleep, deconditioning, obesity, poorly controlled chronic illness and depression. In addition to the fatigue associated with overuse of weak muscles and postpolio syndrome. Managing fatigue involves optimizing body mechanics and cardiovascular health in addition to conserving energy.

Pacing activities with intermittent rest periods is key. This may require a change in lifestyle or work schedule. Sleep must be optimized by identifying and treating sleep apnoea or hypoventilation at night, pain that interrupts sleep, or anxiety that may prevent sleep.

Muscle and joint pain associated with post-polio syndrome is often a result of overuse or excess stress on the body. Muscle pain commonly occurs in polio affected muscles that have functional strength, putting them at risk of overuse. The pain may be associated with cramping, twitching or

crawling sensation and is typically worse at the end of the day. Post-polio muscle pain is a warning sign of overuse and muscle tissue damage. Preventing the pain by modifying activity and stress on a muscle is an essential part of treatment. Using pain medication to simply mask symptoms may ultimately lead to further damage and loss of function.

Using pain medication to simply mask symptoms may ultimately lead to further damage and loss of function.

Joint pain may be due to degeneration and inflammation in the joint or stress on the connective tissue surrounding the joint deformity, altered body mechanics, or poor protection due to weak muscles and ligaments or in a “strong limb” which has been subjected to years of overuse.

Treatment of joint and soft-tissue pain must include evaluation and modification of body mechanics. This may require weight loss, physical therapy, bracing, assistive devices or mobility aids. Treatment may also include modalities, medication, injections and, at times surgical intervention.

New weakness in polio survivors may manifest in muscle known to be affected by polio or in muscles thought to be unaffected. Most likely the “unaffected” muscles had sub-clinical motor neuron loss at the time of the acute polio infection. Loss of motor units and degeneration or the axon sprouts developed when muscles were reinnervated results in the weakness associated with post-polio syndrome. Medication has not been shown to be effective in preventing loss of strength unless other factors as low testosterone or neuromuscular transmission defects are also present.

Avoidance of overuse of “at risk” muscles and appropriate exercise to strengthen deconditioned muscles can delay loss of function. Identifying which muscles are weakening due to overuse and which have become deconditioned by changes in mobility requires careful muscle testing and monitoring.

Cold intolerance, like fatigue, is a non-specific symptom common to polio survivors. Limbs with significant muscle atrophy related to polio have reduced blood flow and microcirculation due to minimal oxygen demand. Individual basal metabolic rate, related to amount and percentage of muscle tissue, is reduced in a polio survivor. Cold intolerance can be managed by improving cardiovascular circulation, insulating with layers of appropriate breathable clothing, and ensuring availability of environmental control and external heat sources.

Dysphagia and respiratory problems are related to a history of bulbar polio with residual weakness or upper airway, swallowing and respiratory muscles. A history of choking or coughing when eating or difficulty swallowing certain foods may warrant a swallowing evaluation and training in compensatory swallowing techniques.

Reduced respiratory function may be a result of upper airway obstruction {weakness of muscles in the throat) or poor ventilation due to chest wall or diaphragm muscle weakness. Pulmonary function tests and sleep studies can identify the etiology of symptoms and indicate appropriate interventions. Assisted ventilation, assisted cough, breathing exercises and pulmonary rehabilitation may be utilized to optimise pulmonary function. Significant illness may be prevented through regular vaccinations and exposure precautions.

Avoidance of overuse or “at risk” muscles and appropriate exercise to strengthen deconditioned muscles can delay loss of function.

Optimizing wellness contributes to overall health and sense of well-being. A good relationship with a primary care provider is essential to monitoring health and managing chronic conditions. Good nutrition, restful sleep and regular exercise help maintain vitality. Preventing injury and illness and modifying lifestyle to minimise risks are key to preserving function. Psychosocial support lends security and purpose to life.

Although post-polio syndrome can be a complicated condition to live with, finding the needed medical management and living well is still possible.

Reprinted from Post-Polio Health International Newsletter (Page 1-3 of Fall 2019 Volume 35 Number 4)

NUTRITION AND HEALTH by Trustee Zsuzsanna Snarey.

We all need energy to live and that energy comes from food, but it only takes a small amount of extra food at regular intervals over a number of years to lay down energy stores in the form of fat. This extra weight is harmful to health and is the source of many avoidable diseases.

Protein, carbohydrate and fat are macronutrients needed in sufficient amounts. We get proteins from eggs, meat, fish, chicken, beans and pulses, carbohydrates from bread, pasta, cereal, rice, potatoes and some fruit and vegetables. Alcohol is also a carbohydrate, high in calories but without nutrients.

Fats are a vital part of every cell in the body and provide energy to muscles as well as certain fatsoluble vitamins, but we only need fat in small amounts as it is very calorie-dense, more than twice the calories of protein or carbohydrate weight for weight. Saturated fats such as butter, coconut and palm oil or trans-fats found in processed foods, should be replaced by unsaturated fats. Monounsaturated and polyunsaturated fats, found in olive oil, rapeseed oil, oily fish, nuts and seeds, have a beneficial effect if eaten in moderation. They help to reduce the low density, bad cholesterol in the blood and also provide vitamin E and other essential fatty acids such as omega-6 and omega-3 which the body cannot make and reduce the chance of cardiovascular disease, heart attack and stroke.

Energy requirements vary from person to person according to age, gender, body size and activity levels. To calculate your personal basal metabolic rate or BMR which shows the number of calories your body needs at rest, you need to know your weight in kg, assuming you are over 60 years old, and multiply by 11.711 for men and add 587.7. For women over 60, the weight in kg is multiplied by 9.082 and 658.5 is added. To adjust for activity levels for sedentary or light activity lifestyle, this resulting BMR is multiplied by a number somewhere between 1.40 – 1.69 or for an active lifestyle by a number between 1.70-1.99. I assume this will not apply to many reading this article, certainly not to me.

In order to maintain body weight, energy intake should = energy expenditure in calories, obtained from the above calculation. To lose weight you need to reduce the calorie intake below your calorie needs. Of course, it is not easy to keep a check on the calorific value of every bit of food consumed but keeping a food diary over a week should give you a general idea if you are eating roughly the right amounts.

It is generally recommended to cut down on high calorific fatty meats, cheese, dairy and spreads, and base the diet on vegetables and fruit with some wholegrain carbohydrates which are more filling and less calorie rich. Protein in the form of lean meat, beans and pulses are important for people who had polio in order to conserve muscle. Salt, sugar, crisps and biscuits should not be part of any diet. Remember that tea or coffee with milk and sugar all contribute to your calorie intake whereas water, black tea and coffee don’t.

To work out if you need to cut down on your energy intake you can calculate your body mass index, BMI,

To calculate your BMI you need to know your weight in kg and your height in metres. You divide the weight in kg by (the height in metres) squared.

For example, if you weigh 67kg and your height is 172 cm; changing it to metres= 1.72 m, divide 67 by 1.72 x 1.72 which is 67 divided by 2.96 = 22.6

So your BMI would be 22.6 which shows that you are in the healthy range.

A BMI of 18.5-24.9 is healthy . A BMI of 25-29.9 indicates overweight, 30-34.8 is obesity class I with a moderate risk of developing diseases, a person with a BMI of 35-39.9 has a severe risk for diabetes, cardiovascular disease and cancer.

A better indicator of being a desirable, healthy weight is simply finding your waist measurement. This is a good indicator of the dangerous fat around the vital organs. Ideally, it should be below 94cm or 37in for men and below 80cm or 31.5in for women. But as long as your BMI is in the healthy range there is no increased risk of diseases with waist measurements up to 102cm or 40in for men and up to 88cm or 34.5in for women. [Source: Health Survey for England (2010-12)/ NICE http://www,hscic.gov.uk/catalogue/PUB13219]

Not all calories from carbohydrates are equal. Avoiding sugar, honey, fruit juice even sweeteners is important. 50% of energy should come from complex carbohydrates containing fibre, such as wholemeal bread, root vegetables, pulses, peas, beans and oats. Fibre is very important for health as it is prebiotic. It feeds the beneficial bacteria in the lower intestine which in turn give us many important compounds such as vitamins and short-chain fatty acids which significantly influence our health for the better and even improve brain function. Prebiotics are also found in leeks, onions, garlic and yoghurt. We all have different bacterial populations and by eating a large variety of plants we can increase the diversity and amount of bacteria in the gut which in turn discourages the growth of harmful bacteria. The human body is a host for about 1012 to 1014bacteria. That is 10 with 12 to 14 zeros after it. We have more bacteria living in and on our bodies than we have cells in our bodies.

Probiotics in yoghurt, kefir and fermented vegetables contain beneficial, live bacteria, shown to restore the normal healthy balance of bacteria in the gut. People in villages in Malawi have greater bacterial diversity due to their plant based diet than people living in the West with a consequence of having less cancer, heart disease and Type 2 diabetes. Plants contain minerals and vitamins as well as phytochemicals responsible for the colour of plants which can also protect against these diseases. Plant-based foods should fill 2/3 of your plate

GI refers to the Glycaemic Index and measures the effect of a food on blood sugar levels with 100 being the highest achieved by consuming pure glucose which is absorbed very quickly. Low GI foods include most vegetables and sweet fruit, beans and grains like wheat oat and rye. They slow down the release of glucose into the blood when food is digested. There is evidence that diets with low GI can have beneficial effects for diabetics and reduce hunger between meals.

Micronutrients such as iron, copper, zinc and iodine are very important for a healthy body. They are found in green vegetables and meat. Others are selenium, cobalt and manganese. They are needed in very tiny amounts, for example, one Brazil nut has all the selenium we need for a day.

One of the reasons for people giving up on a reduced-calorie diet is because they feel hungry. Protein is the most satisfying macronutrient so increasing the protein in the diet is sensible. Current scientific data suggest that a diet which is made up of 30% protein, 40% carbohydrate and 30% fat is an effective way of controlling appetite leading to successful weight loss remembering that the total calorific content must be reduced. This should not be confused with the Atkins diet which is much higher in fat and much lower in carbohydrates. Carbohydrates in the form of fruit, vegetables and pulses should form the basis of any diet with fibre for a healthy gut flora of good bacteria.

With acknowledgements to the University of Aberdeen and the FutureLearn course on Nutrition and Wellbeing.

Zsuzsanna Snarey

zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

Editors Note in case you have not heard of kefir :-

Kefir is a cultured, fermented beverage that tastes a great deal like a yogurt drink. It’s made using “starter” grains, just as sourdough bread has a “starter.” This starter is a combination of yeasts, milk proteins, and bacteria. It has a tart, creamy flavour, and it’s loaded with probiotic health benefits.

Waiting for Normal – written for PSN on 14th March 2020

Marcia Falconer, PhD (molecular and cellular biology) Member of PSN for many many years.

I am waiting for normal. I think it will be a long wait. All of us are in the high risk category for Covid-19 infection. We probably can’t avoid getting it at some point, but the idea is to get it when the health system is able to cope, to get it when you can get proper medical attention. When the pressure on the health system is within proper limits, the fatality rate is quite low – about the same as for regular flu – something like 0.3%. When the hospitals are overloaded and cannot access respirators, etc. the rate can be as high as 62% and certainly well above the 15% reported for seniors.

So what to do. Here is my personal list of priorities:

1) Put off catching the virus as long as possible by self-isolation.

2) Minimize social contact

3) Wash hands frequently

4) Disinfect items

5) Have a plan for cleaning help and personal service workers.

Now let me elaborate a little bit on each one. #1 and #2

are pretty much the same thing – Put off catching the virus as long as possible by self-isolation and minimizing contact with everybody else.

My husband and I will not visit anybody, nor will we have any visitors in the house. We will chat with neighbours outside, at a distance of 6′ or 2 meters. We may even visit with our grandkids on my birthday – but it will be outside and at a distance.

Do the absolute minimum of shopping. Buy online and have it delivered (or pick-up) when possible. When we have to go to a store, we will keep 6′ distance from other people and only go when the store is not crowded. If it’s crowded when we get there, we come back another time.

We will not go to restaurants. That is a HARD one for me. But we won’t. In the early stages of the pandemic, drive-through ordering is probably OK and I will consider restaurant delivery, but at the height of the pandemic, not even that.

#3 and #4

are pretty much the same idea as well. The first is obvious – we will wash our hands often, even when we’re inside in our own homes. And we will try very hard not to touch our faces unless we have just thoroughly washed our hands (or we use a tissue to cover our hands).

Disinfection is potentially a very big thing. The idea is to keep the inside of our home virus free. Period. Not just clean, but virus free. Virus are incredibly easy to transmit and hard to “kill”. Covid -19 virus remains infectious for over 3 days on hard surfaces and for a day or more on fabrics and softer surfaces. Do not bring the virus into your house.

Right now – before virus is everywhere is the time to start with house cleaning. Disinfect all door handles inside and outside. All faucets, all toilet handles, all phones, all light switches, iPhones, fridge and freezer handles, railings and banisters, counter tops, cupboard door pulls, computer keyboards, all remotes. Then continue to do this. I will not do all of these things every day – but I will do them several times a week.

Outside we will disinfect the car door handles (reaching underneath for sure). Disinfect all those knobs inside the car, steering wheel, inside door handles, window buttons, etc. These will need to be done frequently – probably every time we use the car.

What to use? Anything is better than nothing. Homemade disinfectant is great. Rubbing ethanol (alcohol) combined with any spray detergent is great just make sure that the amount of alcohol when you’ve done combing the two is 70%. A higher percentage is not better and a lower percentage won’t work. Get your grandchild or neighbour’s kid to calculate how much rubbing alcohol and how much spray detergent.

Now on to a difficult part, #5.

What to do about the people you need to help you live a good life? This will be different for each of us.

I have stopped my cleaning woman. She has a big family, cleans for numerous people and would come when she is feeling slightly sick. Bringing her in the house is a big risk.

Personal Service Workers (here in Canada they’re called PSW’s) are in a category by themselves as far as risk goes. They deal with many clients and do the most personal of things. It should be noted that Covid-19 is not only spread by contact with oral fluids (from coughing, sneezing, etc.) but also is transmitted through the fecal route.

With this in mind I would schedule a talk with all PSWs as soon as possible. They probably have received some instruction about preventing transmission of virus already but don’t rely on this. They may not have been listening, or they may think it’s unnecessary and not bother. Make sure they know that YOU know what needs to be done. (Institute your plan, politely – but firmly.)

I would suggest that a PSW should be wearing a mask and gloves when they arrive at your place. Immediately upon arrival they should remove their mask and gloves (and dispose of these in an appropriate bag that can be sealed and put in the garbage). Then they put on a protective, disposable, outer garment and fresh gloves and mask. When they leave, they remove outer garment, the mask and gloves and dispose of them in a different bag, that can also be sealed and put into the bin.

That all sounds pretty drastic.

It is. And I can even add a few more things. At the height of the pandemic, when I have groceries delivered, I will lay out newspapers at two different (but close) spots on the counter. The bags containing the groceries go on one of the newspapers. I will put on surgical gloves and remove the grocery items from the bags and wipe down each item with a disinfectant wipe and then put it on the other newspaper. When done, I take my gloves off – inside out – place them with the wipes on the first newspaper, bundle it up and put it in a plastic bag that is sealed for disposal.

How long will this go on?

At this point it’s difficult to say. Certainly for several months – possibly longer. It will depend upon the course of the epidemic. It could go on for 2 or 3 months or 6 months.

It is up to you to protect yourself:

Isolate yourself

Disinfect surfaces you regularly touch

Equally important – Stay Sane. Do things outside, read good books, treat this as a time to slow down, do the things you’ve been wanting to do for years.

And be prepared to wait for things to return to normal. These are interesting times we are living in.

Stay Safe – Marcia. marcia.falconer@gmail.com

What I am doing for the upcoming COVID-19 (coronavirus) pandemic by James Robb, MD UC San Diego

Dear Colleagues, As some of you may recall, when I was a professor of pathology at the University of California San Diego, I was one of the first molecular virologists in the world to work on coronaviruses (the 1970s). I was the first to demonstrate the number of genes the virus contained. Since then, I have kept up with the coronavirus field and its multiple clinical transfers into the human population (e.g., SARS, MERS), from different animal sources.

The current projections for its expansion in the US are only probable, due to continued insufficient worldwide data, but it is most likely to be widespread in the US by mid to late March and April.

Here is what I have done and the precautions that I take and will take. These are the same precautions I currently use during our influenza seasons, except for the mask and gloves.:

1) NO HANDSHAKING! Use a fist bump, slight bow, elbow bump, etc.

2) Use ONLY your knuckle to touch light switches. elevator buttons, etc.. Lift the gasoline dispenser with a paper towel or use a disposable glove.

3) Open doors with your closed fist or hip – do not grasp the handle with your hand, unless there is no other way to open the door. Especially important on bathroom and post office/commercial doors.

4) Use disinfectant wipes at the stores when they are available, including wiping the handle and child seat in grocery carts.

5) Wash your hands with soap for 20 seconds and/or use a greater than 60% alcohol-based hand sanitizer whenever you return home from ANY activity that involves locations where other people have been.

6) Keep a bottle of sanitizer available at each of your home’s entrances. AND in your car for use after getting gas or touching other contaminated objects when you can’t immediately wash your hands.

7) If possible, cough or sneeze into a disposable tissue and discard. Use your elbow only if you have to. The clothing on your elbow will contain infectious virus that can be passed on for up to a week or more!

What I have stocked in preparation for the pandemic spread to the US:

1) Latex or nitrile latex disposable gloves for use when going shopping, using the gasoline pump, and all other outside activity when you come in contact with contaminated areas.

Note: This virus is spread in large droplets by coughing and sneezing. This means that the air will not infect you! BUT all the surfaces where these droplets land are infectious for about a week on average – everything that is associated with infected people will be contaminated and potentially infectious. The virus is on surfaces and you will not be infected unless your unprotected face is directly coughed or sneezed upon. This virus only has cell receptors for lung cells (it only infects your lungs) The only way for the virus to infect you is through your nose or mouth via your hands or an infected cough or sneeze onto or into your nose or mouth.

2) Stock up now with disposable surgical masks and use them to prevent you from touching your nose and/or mouth (We touch our nose/mouth 90X/day without knowing it!). This is the only way this virus can infect you – it is lung-specific. The mask will not prevent the virus in a direct sneeze from getting into your nose or mouth – it is only to keep you from touching your nose or mouth.

3) Stock up now with hand sanitizers and latex/nitrile gloves (get the appropriate sizes for your family). The hand sanitizers must be alcohol-based and greater than 60% alcohol to be effective

4) Stock up now with zinc lozenges. These lozenges have been proven to be effective in blocking coronavirus (and most other viruses) from multiplying in your throat and nasopharynx. Use as directed

several times each day when you begin to feel ANY “cold-like” symptoms beginning. It is best to lie down and let the lozenge dissolve in the back of your throat and nasopharynx. Cold-Eeze lozenges is one brand available, but there are other brands available.

I, as many others do, hope that this pandemic will be reasonably contained, BUT I personally do not think it will be. Humans have never seen this snake-associated virus before and have no internal defense against it. Tremendous worldwide efforts are being made to understand the molecular and clinical virology of this virus. Unbelievable molecular knowledge about the genomics, structure, and virulence of this virus has already been achieved. BUT, there will be NO drugs or vaccines available this year to protect us or limit the infection within us. Only symptomatic support is available.

I hope these personal thoughts will be helpful during this potentially catastrophic pandemic. You are welcome to share this email. Good luck to all of us!

TRANQUIL AWAKENINGS, Lincoln

www.tranquil-awakenings.co.uk debbieison34@hotmail.com

Hello everyone, my name is Debbie Ison and I am a therapist and therapy trainer. I was introduced to Richard and Hilary Boone by Dr. Darren Barnes-Heath their Chiropractor and have been in regular contact for a couple of years now.

Hilary asked me to write a short piece for the newsletter.

During this time, we are all facing different challenges and new experiences. Through times of stillness often people find their mind begins drift to memories from their past. This can lead us to think of happy times, but it can also sometimes bring up old wounds to be healed. In order to do this effectively, however, we need strategies for how to do this. Therefore, I would like to take this opportunity to share with you just one of the many strategies that I use, based on the work of Bandler and Grinder. The more you practise this strategy the easier it becomes, and the easier it becomes the quicker it gets.

Step one think of a memory that you would like to feel differently about. Give it a number between 1-10 (10 being the strongest).

Think about how you are remembering that memory. Can you see an image, hear a sound, or feel a feeling?

Think about how that is made up:

If it is an image – Is it in colour or is it in black and white? Is it moving or is it still? Are you looking out of your own eyes or seeing yourself in the image? What size is the image? How close or far away is it from you?

If it is a sound- Is it loud or quiet? What direction is the sound coming from? What pitch is it? Whose voice is it?

If it is a feeling – Where are you feeling that feeling e.g. in your head? If it were to have a colour, what colour would it be? What shape would it be? 2D or 3D? Is it moving or still? Does it have a temperature? Does it have a texture?

You may want to write these down to help you remember.

Now change these different components one at a time and notice how they change the feeling that the memory gives you e.g. If it was an image that was in colour, change it to black and white. If it makes the memory worse put it back to how it was.

Save the positive changes. In order to do this, think about something else for a moment e.g. give yourself a simple sum, or think about what you are having for dinner. Make as many changes as you need until the memory has been neutralised.

NHS CORONAVIRUS

https://www.nhs.uk/conditions/coronavirus-covid-19/ Updated daily. Coronavirus (COVID- 19) is a NEW illness that can affect your lungs and airways. It’s caused by a virus called coronavirus.

STAY AT HOME IF YOU HAVE CORONAVIRUS SYMPTOMS – either

• A high temperature—this means you feel hot to touch on your chest and back [you do not

need to measure your temperature)

• A new, continuous cough—this means coughing a lot for more than an hour, or 3 or more

coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)

Do NOT go to a GP surgery, pharmacy or hospital.

Use the 111 online coronavirus service to find out what to do. https://111.nhs.uk/covid-19/ Only call 111 if you cannot get help online.

HOW LONG TO STAY AT HOME.

1. If you have symptoms of coronavirus, you’ll need to stay at home for 7 days.

2. If you live with someone who has symptoms, you’ll need to stay at home for 14 days from

the day the first person in the home started having symptoms.

3. If you live with someone who is 70 or over, has a long-term condition, is pregnant or has a

weakened immune system, try to find somewhere else for them to stay for 14 days.

4. If you have to stay at home together, try to keep away from each other as much as possible.

Staying at home means you should:

• NOT go to work, school or public areas

• NOT use public transport or taxis

• NOT have visitors, such as friends and family, in your home

• NOT go out to buy food or collect medicine – order them by phone or online, or ask

someone else to drop them off at your home

 You can use your garden, if you have one.

 You can also leave the house to exercise – but stay at least 2 metres away from other people.

How to avoid catching and spreading coronavirus (social distancing)

Everyone should do what they can to stop coronavirus spreading.

Wash your hands with soap and water often – do this for at least 20 seconds. Always wash your hands when you get home or into work.

Use hand sanitiser gel if soap and water are not available.

Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze

Put used tissues in the bin immediately and wash your hands afterwards. Avoid close contact with people who have symptoms of coronavirus Only travel on public transport if you need to

Work from home if you can

Avoid social activities, such as going to pubs, restaurants, theatres and cinemas Avoid events with large groups of people

Use phone, online services, or apps to contact your GP surgery or other NHS services.

DO NOT

DO NOT touch your eyes, nose or mouth if your hands are not clean DO NOT have visitors to your home, including friends and family.

ADVICE FOR PEOPLE AT HIGH RISK

If you’re at high risk of getting seriously ill from coronavirus, there are extra tings you should do to avoid catching it.

THESE INCLUDE:-

Not leaving your home – you should not go out to do shopping, visit fronds or family or attend any gatherings.

Avoiding close contact with other people in your home as much as possible.

PEOPLE WHO ARE AT HIGH RISK

You will be contacted by the NHS by Sunday 29th March 2020.

Do not contact your GP or healthcare team at this stage – wait to be contacted.

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremelyvulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerablepersons-from-covid-19

TWO GREAT ITEMS – I apologise I forgot to add the link to the Authors.

If you’ll continue to receive a regular wage from an employer throughout this difficult time then please consider continuing to pay the self-employed people whose services you usually rely on – they will receive so little. If you have a cleaner, gardener, regular baby club, child-minder, dog-walker etc. who you’ll no longer require services from right now then please consider continuing to pay them if you can, because when all of this gets better you’ll need them to still be in business. It costs money to run a business and that never stops even when the clients stop paying.

Another great suggestion I’ve seen is that buying gift cards for your favourite cafes, restaurants, hairdressers, beauticians etc to use at a later date might be the difference between them going under or being able to get back on their feet after all of this.

Behind every small business is a person and often an entire family. Be kind and considerate of others in a strange time for everyone.

MANKIND MUST WORK TOGETHER FOT ITS GREATER GOOD.

Like all living things, if not looked after, there comes a time when enough is enough and its time to come back fighting.

Over the last life time , the world has been getting sicker, caused mostly by mankind. In its anger and sickness it has shown us droughts, storms, fires, global warming and famine. But like any little irritating insect we just carry on nibling away not listening or heeding the warnings.

No matter how wealthy, rich or powerful you are, the world has come back fighting. Your billions don’t matter anymore. Your rating as the strongest, richest, most productive country isn’t important. The only thing is to brace together and even with social distancing think of the greater community. On our own like a stick we can be broken, but put those sticks together and breaking them is not so easy. Mankind must work together for its greater good.

The world is already showing us, give it a time to heal and what beauty and life it can give us. Animals returning to areas we haven’t seen, pollution dropping in ways not imagined. Yet still some of us show greed and self protection. The need of the most must over ride the needs of the one. Just stop, think and see.

This is a time for reflection slow down, spend time with those you love, rebuild relationships, learn, read, plant your gardens. Its an opportunity to actually better mankind. The world has had enough, if we don’t listen it will make us. Remember nothing is ours it all belongs to the world we live in, including our bodies. Why don’t we wake up and learn from what nature is teaching us. There is enough for all of us in this world. We just need to slow down, learn to share, learn to care.

STUFF FOR OLD FOLKS

This is what we, who are aged 70 or 80 years plus, can look forward to.

This is something that happened at an assisted living center. The people who lived there had small apartments but they all ate at a central cafeteria. One morning one of the residents didn’t show up for breakfast so my wife went upstairs and knocked on his door to see if everything was OK. She could hear him through the door and he said that he would was running late and would be down shortly, so she went back to the dining area.

An hour later he still had not arrived, so she went back up towards his room but found him on the stairs. He was coming down the stairs but was having a hard time. He had a death grip on the handrail and seemed to have trouble getting his legs to work right. She told him she was going to call an ambulance but he told her no, he wasn’t in any pain and just wanted to have his breakfast. So, she helped him the rest of the way down the stairs and he had his breakfast. When he tried to return to his room, he was completely unable to get up even the first stair step, so they called an ambulance to help him.

A couple of hours later she called the hospital to see how he was doing.

The receptionist there said he was fine, he just had both legs in one side of his boxer shorts.

I left school at fifteen years old in 1948 hoping to become a nurse. At sixteen I started my nurse training. A few weeks before my seventeenth I came home from work feeling unwell. A doctor initially thought it was a bad case of the flu. A few days later a second visit from the doctor resulted in me being sent to Basingstoke cottage hospital for tests. During this time, I was unable to feel my legs and collapsed on the floor when being stood up. I was taken to Millbrook Isolation Hospital and was told I had infantile paralysis and had to spend four weeks in hospital, paralysed from the waist down.

I was transferred to Lord Mayor Tralor Hospital and had seven months doing physiotherapy and rehabilitation to get mobile again. I was off work for two years in all and when I was ready to start work, I was not strong enough to continue nursing.

I met Cyril when I was 24 years old and we went out dancing, swimming and travelling for two years before we married. October 1957. We have had five children together. When I was in my fifties, I started to get very fatigued and ached a lot. Doctors diagnosed me with Myalgia Encephalitis (ME) and put me on steroids. My muscles continued to deteriorate. One day my daughter in law made the comment that ‘you had polio, didn’t you?’, she had read an article about polio effects later on in life. I spoke to my GP about this and confirmed that I had polio as a youngster. My mobility has gone from a walking stick to a wheelchair and mobility scooter. With help from our family my husband and I are able to enjoy reasonable health and in 2017 Cyril and I celebrated our 60th wedding anniversary.

When I left hospital in 1951 the doctor said ‘go and enjoy what is left of your life’ and in my young mind I thought perhaps he was saying it may not be long, so now at 86 years old I must say that I have got a lot to thank God for!

Information from Slides taken from a Presentation to Rotary in Lincolnshire. A Dip into Polio from a Polio Survivor – September 9th 2013.

Parents rushing child with suspected Polio to Hospital. Once admitted how did you find out how they were….

Every polio survivor was given a number. From the Lincolnshire Gazette July 16th 1952. CITY HOSPITAL

Todays report on patients in Fever Wards: Seriously ill [relatives may enquire by telephone]: 149.

Ill [relatives may enquire by telephone] 349, 262, 9, 157. Making satisfactory progress: 268, 155, 139, 160. All others convalescent

Sleaford Standard, Thursday July 27th.

Village of Digby—375 Villagers with 97 diagnosed [13 of whom died] but many people probably had a mild dose but never realised it. The village doctor, Dr. Smallthorn contracted the disease. The residential nurse was not allowed to leave. She only tended to the polio victims. Luckily she didn’t get it. “It was almost like a plague, said Rev. Cyril Clarke” Milk was delivered in wax packets not bottles and all other provisions left at the end of a the village or at a garden gate.

A 20 miles ring was placed around the village. The swimming baths were closed and every possible hospital operation was postponed for polio often attacks people convalescing

Sleaford Gazette August 18th 1950

For the first time in this County a method known as Todd Insecticidal Fog Applicator was used in the fight against Infantile Paralysis. It is possible to select a different size of fog globule. They treated, Sleaford, the cinema; Cranwell, the village pond; Ruskington, Council refuse tip behind bacon factory; Digby, The ancient Saxon church of Thomas-a-Beckett, the chapel, the school. the village hall, the beck and sewers.

A few snippets from other Polio Survivors. Remember we only had the language of our age to understand what was happening.

I had been isolated from my four older sisters and big brother for 366 days. I arrived home. Home, this cant be home. It’s the size of a biscuit tin, contains all manger of things, a table and six chairs, a side board, a piano, a 3 piece suite, a dog, now that’s different I haven’t seen one of those before. Home! This is the woman who came to see me each night, but where’s my mum? I begin to cry for her, the woman tells me it’s all right and that she’s my mum, I know she’s not, she doesn’t wear a hat or uniform like my mum. I was 2 and a half.

For 2 months I saw my parents on Saturdays for a few minutes through a window.. I was 4. I was in hospital for 4 years and my 7 siblings were not allowed to visit. I caught polio at age 5. Daily Exercises . “No pain, no gain”, “Use it or Lose it”, “don’t be a baby”. I was 6.

I cannot smell wet wool without remembering the hot wet wool packs that the nurses used tongs to place on my naked body that could not move. Nine pieces, three times an hour, three times a day, three days a week for seven weeks. I was 7.

When I got home I found all my toys had been burned. I was 8. Operations were usually done during our school summer holidays. I was 9.

So many of us thought we must have done something wrong.

We have achieved so much by being strong and we need to keep this up now.

HAND WASHING SMILES AND SONGS

Wash your hands like you just ate a whole bag of Cheetos and are about to crochet with pure white yarn.

It’s hard to resist this “Twinkle” rewrite submitted by Erika Perzan:

“Twinkle, twinkle little star. Look how clean my two hands are.

Around my wrists and between my thumbs, lace my fingers, I’m almost done.

Twinkle, twinkle little star. Look how clean my two hands are!”

TWENTY SECONDS.

Twenty seconds isn’t long, Barely time to sing this song. There’s no time to get it wrong. Not in Twenty Seconds.

All that’s left is fourteen secs To try to do what I must next. I cant talk, please send a text I’ve only fourteen seconds

Twenty seconds now is five So kick it into overdrive!

Ain’t it great to say that I’ve Washed my hands for twenty seconds.

THINGS TO MAKE YOU SMILE.

Many years back when computers still had floppy discs… Some kind person sent me an email saying I know how much you like cats I thought you would like this for your computer.

I downloaded it [not much idea about computers and viruses etc then, oh being honest not too much more now, LOL].

Now I had this lovely little cat who would curl up and go to sleep, get up and walk round the screen, sit and wash his face and even elsewhere with one leg cocked up in the air..

Great fun…..

That is until I started the newsletter and now he was climbing up pages and over the top and round the side. Getting in the way so much I got really angry and said aloud…

“Will you please stop following my MOUSE”. Then howled with laughter…. Am now….

Do you remember

‘I see you are writing a letter, would you like some help?’

The default assistant in the English Windows version was named Clippit (commonly nicknamed Clippy), after a paperclip. The character was designed by Kevan J. Atteberry on a Macintosh computer

DAVE LUPTON – aka CRIPPEN The best disabled cartoonist in the WORLD. Crippencartoons.com

All sort of different Bits from my computer.

They are driving us mad with Corona…. We have become crazy.

I went to the bathroom at a restaurant a few days ago. I washed my hands, opened the door with my elbow, I raised the toilet seat with my foot, I switched on the water faucet [tap] with a tissue then opened the bathroom door to leave with my elbow and when I returned to my table I realised… I forgot to pull up my pants!!!!!

Posted by a friend.

Tannis Morrison Williamson.

Valerie Strauss (@valeriastrauss) – Twitter.com

Folks, I’ve got about 20 years in education and I’m a school prinicipal. I cannot emphasize enough how important it is for parents to NOT attempt to replicate the school environment, daily routine, or curriculum instruction at home. Don’t make up worksheets or download a curriculum guide to follow at home. Don’t set recess breaks and don’t reconfigure your house to include a classroom area! You are NOT BEING ASKED to homeschool your kids. We are at day 2 of a system Shutdown – your kids are probably still digesting the fact that they may not get to see their friends and teachers for the foreseeable future, not to mention we are in the middle of a global health crisis. Little Suzie is not in any position to learn a new math concept today.

Modern education isn’t what we experienced as kids. The best thing you can do (and the closest to their educational reality) is to do things with them. Play a board game. Do the dishes and sing a song. Have them help you in the laundry, bake cookies, DANCE in the kitchen. Go sliding, have a boil-up in the yard, and have them shovel the driveway. Also, give them alone time, screen time, and ask them to tell you a story. Be with them and show them that everything will be OK. You are their parents and family members. NOT their teachers. [Unless you are homeschooling them already]. Whatever happens, we will make sure your child has the tools needed to succeed in school when the time comes. For now be a family.

30 NATIONAL PARKS YOU CAN VISIT FOR FREE

Kitchenfunwithmy3sons.com

Acadia, Arches, Badlands, Big Bend, Bryce Canyon, Canyonlands, Channel Islands, Cuyahoga Valley, Death Valley, Denali, Dry Tortugas, Everglades,

Glacier, Grand Canyon, Grand Teton, Great Smokey Mountain, Guadalupe, Joshua Tree, Mount Rainier, Olympic, Redwood,

Rocky Mountain, Sequoia, Shenandoah, Virgin Islands, Wind Cave, Yellowstone and Yosemite.

DAILY QUARANTINE QUESTIONS. By Lucie Petts.

1. What am I GRATEFUL for today?

2. Who am I CHECKING IN ON or CONNECTITNG WITH today?

3. What expectations of “normal” am I LETTING GO OF today?

4. How am I GETTING OUTSIDE today?

5. How am I MOVING MY BODY today?

6. What BEAUTY I am either creating, cultivating, or inviting in today?

Filthiest Public Surfaces.

SANITIZE / WASH HANDS AFER EACH USE.

1. Gas pump handles.

2. Mailbox handles 3. Escalator Rails 4. ATM Buttons

5. Parking Meter Kiosks.

6. Vending Machine Buttons.

7. Public Door Pull and Push Handles.

8. Touch Screen Food and Medical Kiosks.

9. Public Sink and Toilet Handles.

Looking to rehome my humans. It’s day 2 of them staying home and they are interrupting my nap time. The small one NEVER stops talking. This is ridiculous!! Why are they home? Don’t they know I really don’t like them that much? They are very needy. Must go to a good home. Asking 500 snackos or best offer. This is an emergency and I need them gone ASAP so I can nap peacefully.

NORMAN.

Posted by Michelle Williams.

Chatterpack.net A list of free, online, boredom-busting resources! March 17th 2020.

Hello everyone,

I just wanted to say THANK YOU for all of your messages, emails, and comments. It means the world to me to know how many people from all over the world are benefitting from this resource list.

I work for the NHS and run ChatterPack on a voluntary basis in my *spare* (!) time to help share information and resources to those who need it. I wont be around to update this much over the next few weeks, but I promise to do my best as I can see from your messages how much this means. Have fun, explore the world from the safety of your home and please stay safe.

Huge Love to you all. Claire Ryan.

Virtual tours – Roman fort, virtual farm trips, and much more.

Online learning – Loads of creative and language and all sorts of other courses from Colleges and Universities.

Geography and nature Literature online Anxiety/Mental health/loneliness`

Music Miscellaneous and entertainment.Prayer Resources

Arts and Culture

www.facebook.com hauserofficial

Hallelujah from HEAVEN. HAUSER

https://www.instagram.com/hausercello

POST POLIO NEWS [ppn] – www.post-polio.org.ukAn online news cutting service from Chris Salter that specialises in news relating to polio, post polio, disability and other health related issues.Twitter, Newspaper, RSS feed, Facebook, LinkedIn, Daily digest emails.

Video: 955 POLIO OUTBREAK AWARENESS FILM “REMEMBER ME” 88444 | Periscope Film.

Made in the 1950s by the March of Dimes, REMEMBER ME is a poignant reminder of the polio crisis that gripped the United States in the 20th Century. Made just after the Salk vaccine had been developed, the film attempts to remind the audience of the suffering of infantile paralysis victims, and continue to fund the fight against the disease. It also encourages the audience to respect the abilities of these children and adults and not their disabilities. At 1;44, a man is seen typing with his toes. At 2:00, empty summer camps and swimming pools are seen in the wake of a 1955 outbreak. At 2:30 a shopping center is seen, its parking lot empty because of the outbreak. At 3:00, a polio victim arrives at a hospital. At 3:25, a hospital in Boston is seen, with young patients in the hospital. At 4:00, a hospital in Wisconsin is seen with many child patients. At 4:30, an extremely weak adult victim is shown, and at 5:20 the crutches and braces used for treating deformed victims are shown. At 5:50, a patient immobilized in a cast is seen. At 6:10 children are shown being treated in iron lungs with round-theclock nursing care. The film ends with the reminder — polio is not over.

Two vaccines are used throughout the world to combat polio. The first was developed by Jonas Salk, first tested in 1952, and announced to the world by Salk on April 12, 1955. The Salk vaccine, or inactivated poliovirus vaccine (IPV), consists of an injected dose of killed poliovirus. In 1954, the vaccine was tested for its ability to prevent polio; the field trials involving the Salk vaccine would grow to be the largest medical experiment in history. Immediately following licensing, vaccination campaigns were launched, by 1957, following mass immunizations promoted by the March of Dimes the annual number of polio cases in the United States would be dramatically reduced, from a peak of nearly 58,000 cases, to just 5,600 cases.

Eight years after Salk’s success, Albert Sabin developed an oral polio vaccine (OPV) using live but weakened (attenuated) virus.[58] Human trials of Sabin’s vaccine began in 1957 and it was licensed in 1962. Following the development of oral polio vaccine, a second wave of mass immunizations would lead to a further decline in the number of cases: by 1961, only 161 cases were recorded in the United States. The last cases of paralytic poliomyelitis caused by endemic transmission of poliovirus in the United States were in 1979, when an outbreak occurred among the Amish in several Midwestern states.

Poliomyelitis was first recognized as a distinct condition by Jakob Heine in 1840. Its causative agent, poliovirus, was identified in 1908 by Karl Landsteiner. Polio had existed for thousands of years in certain areas, with depictions of the disease in ancient art. Major polio epidemics started to appear in the late 19th century in Europe and soon after the United States, and it became one of the most dreaded childhood diseases of the 20th century. The epidemics are attributed to better sanitation which reduced the prevalence of the disease among young children who were more likely to be asymptomatic. Survivors then develop immunity. By 1910, much of the world experienced a dramatic increase in polio cases and epidemics became regular events, primarily in cities during the summer months. These epidemics — which left thousands of children and adults paralyzed — provided the impetus for a “Great Race” towards the development of a vaccine. Developed in the 1950s, polio vaccines have reduced the global number of polio cases per year from many hundreds of thousands to under a thousand today. Enhanced vaccination efforts led by Rotary International, the World Health Organization, and UNICEF should result in global eradication of the disease, although in 2013 there were reports by the World Health Organization of new cases in Syria.

We encourage viewers to add comments and, especially, to provide additional information about our videos by adding a comment! See something interesting? Tell people what it is and what they can see by writing something for example like: “01:00:12:00 — President Roosevelt is seen meeting with Winston Churchill at the Quebec Conference.”

This film is part of the Periscope Film LLC archive, one of the largest historic military, transportation, and aviation stock footage http://www.PeriscopeFilm.com collections in the USA. Entirely film backed, this material is available for licensing in 24p HD and 2k. For more information visit. Original Source Article » https://www.youtube.com/watch?v=ap2xx27x_wc&feature=youtu.be

The Doctor Who Had to Innovate or Else | The Atlantic. [MARCH 18, 2020] Conor Friedersdorf writes:

As the United States braces for the peak of the coronavirus pandemic, not knowing exactly when it will come, how severe it will be, or how short hospitals will be on intensive-care-unit beds and ventilators, the story of the Danish physician Bjørn Ibsen and his many helpers could not be more timely. Patients in dire condition survived because he innovated during an emergency, because agile hospital administrators recognized the value of an insight and scaled up its application in real time, and because hundreds of people volunteered their labor to provide care.

The story begins in 1952, when Copenhagen suffered a polio outbreak. Within a few weeks, Blegdam Hospital admitted more than 300 patients who were suffering from temporary paralysis that prevented them from breathing properly. At first, doctors didn’t fully understand their condition.

The fatality rate exceeded 85 percent.

Ibsen was a Danish-born anesthesiologist who had spent time at Massachusetts General Hospital before returning to his home country. He hadn’t been involved in treating the initial cases in the outbreak. But he attended an emergency meeting of physicians at the hospital, where, according to historical accounts, Ibsen hypothesized that insufficient oxygen and a build-up of carbon dioxide was killing patients.

Vivi, a 12-year-old girl, was sweating, gasping for air, and on the verge of death when he recommended that she be treated in a different way: As was sometimes done in the operating room, they should perform a tracheotomy and force oxygen into her lungs using “manual intermittent positive pressure ventilation”–– in other words, pump oxygen by hand for every breath she needed. While this was a radical new approach, the dearth of other options overcame resistance to the idea. A surgeon performed the tracheotomy. At first, Ibsen was unable to force air into the patient’s lungs, but after administering a general anesthetic he did so successfully.

Soon Vivi regained consciousness and her fever fell. It seemed that the radical new approach actually worked. But how to apply it to a sudden influx of patients when each required someone sitting at their bedside 24 hours a day, hand-squeezing oxygen into their lungs as often as they needed to breathe?

Enter the helpers. The hospital soon organized shifts of perhaps 1,500 volunteer medical students, later augmented by dental students. They worked under hundreds of nurses, some semiretired. “The medical students worked 6 or 8 hour shifts so that three or four shifts were needed,” the respiratory physiologist John B. West recounted in a 2006 journal article. “It is daunting to think of the responsibility of these students who were essentially ventilating blind with only the patient’s appearance to guide them, at least in the initial stages.”

This went on for months. So many severe cases arrived that polio patients needing ventilation took up three floors of the hospital. Once the new methods were adopted, the mortality rate fell to 26 percent. Ibsen’s innovative treatment would be used in other hospitals, and it soon spurred advances in mechanical ventilators. The approach had broader consequences, too. Ibsen saw the general usefulness of putting dire cases that required care by multidisciplinary medical teams in one place.

“After the polio outbreak had subsided, Ibsen was offered a job at Copenhagen’s Kommunehospital, where he was asked to supervise surgical patients in the recovery room and the wards,” the science journalist Stephen Pincock recounted in The Lancet. “Ibsen turned the surgical recovery ward into a unit where all types of patients could receive critical care … This was the world’s first dedicated intensive care unit.”

Practitioners of intensive-care medicine credit him as a founding father. R. V. Trubuhovich of Auckland Hospital in New Zealand credited Ibsen with being “foremost in advocating a separate location to be established in hospitals where intensive care management could be supplied to the critically ill.”

The COVID-19 pandemic will generate many more patients over a longer time horizon, and differ from the 1953 polio epidemic in many ways besides. Still, Ibsen’s example is inspiring. Few at that Copenhagen hospital could have known at the time that their deeds would echo down through the decades as their collective success inspired imitators and advances that transformed medicine. May any of us put in a position to serve similarly in this pandemic succeed as admirably.

CONOR FRIEDERSDORF is a California-based staff writer at The Atlantic, where he focuses on politics and national affairs. He is the founding editor of The Best of Journalism, a newsletter devoted to exceptional nonfiction.

Your newsletter needs your stories, hints and tipsA way of doing something, or an aid that helps you might help someone else. Tell us. How about a recipe that tastes great on the lips but not on the hips.Articles and items for Post Polio Matters are always welcome, by post, by email and by phone if writing is not easy for you.CARERS – We’d love to hear from you too. Help us understand what you go through in helping us to manage our lives.Deadline date for next issue is JUNE 1st 2020.

REMINDER FOR MEMBERSHave you changed your home, email address or phone number recently?Did you let us know?

Editors Note:-

Articles from Polio Survivors and Health Professionals very welcome for future issues

The most accepted article we have found by NHS professionals is:

PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

And in case you need an anaesthetic an excellent leaflet translated into English now used by many PPS Groups around the world is:

POLIO PATIENTS AND SURGERY. Information for health staff.

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.europeanpolio.eu/ documents/13642_Polio_operation_eng_TRYK.pdf

Copies of both have been sent to members and are available on our headed paper with permission

POST POLIO SYNDROME EXISTS

Colleges of Medicine please add more facts to your lectures on the Polio Virus and the effects that it could have had on our bodies. Ensure health professionals understand how varied our nerve damage, our recovery and stable years have been. The majority of us recovered so well that externally we do not look like the photos found in old medical books. There is a massive overlap of symptoms with other neuromuscular conditions. Tell new professionals about Post Polio Syndrome and direct them to our website so they can find more information. Thankyou.

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee/s – Vacancies please apply for more information.

Operations Team

Phone Enquiries – Hilary Boone – 01522 888601

PSN Admin, Email Enquiries and Website – Toni Dunlop – psnadmin@poliosurvivorsnetwork.org.uk Printing – Imprint Colour Printers, Lincoln

Management Committee [Trustees]

Membership

With grateful thanks to the generous legacy from Ms A Brown, Membership will now be FREE whilst our funds remain above £10,000.00 UK Members can choose to get their newsletter by post or email or both. Overseas Members will get their newsletter by email

Contact us via our website Contact Us page Write to us at PO Box 954, Lincoln, LN5 5ER Email psnadmin@poliosurvivorsnetwork.org.uk Phone us on 01522 888601

(please be prepared to leave a message, your name and phone number we will ring you back as soon as we access our messages)

Donate by cheque or

Cheque payable to Polio Survivors Network

PayPal send funds to treasurer@poliosurvivorsnetwork.org.uk

All donations, small or large, towards our work are gratefully received Towards our GENERAL FUNDS (including printing and posting of newsletters)

Or our CONFERENCE AND MEETING FUND (supporting attendance at national meetings/conferences)

We are always grateful for postage stamps, 1st and 2nd class both normal and large size.

If you pay tax at the higher rate, you can reclaim tax relief on your gross donation at 20% (i.e. the difference between the higher rate of tax at 40% and the basic rate at 20%).

If you have not filled in a current Gift aid form please contact us and we will post you one.

Thankyou.

© Polio Survivors Network – Volume 9, Issue 12/12 [108] MAR 2020	Page 28
© PHOTO CARDS by MEMBER VAL SCRIVENERSold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 including P&POrder by Email to vala.scrivener412@btinternet.com Or ring Val on 01234 346 397

because WE’RE STILL HERE!

www.post-polio.org

How to Contact Us

Toni writes…

.Are you like me and find change difficult? Initially when writing this piece, I was thinking about silly things but a few weeks later with big changes coming every day – adjusting is proving a challenge. Change can be tough can’t it, sometimes it can be the smaller things that are hard to adjust to. Some change we choose but much we do not.

I know that I can learn so much from many of you. You will have been through so much change over the course of your post-polio lives. Some changes must have been very difficult to adjust to and maybe you are still not quite accepting of a situation and do all you can to fight against it. Maybe there are other changes you have accepted or perhaps you have found sneaky ways of getting around the issue and new ways of doings things. What have you found has helped with the adjustments you have had to make? It would be lovely to hear some of your experiences. I’m sure these will be skills and ideas than can be used in our current covid-19 environment.

I send you my fondest regards and hope that you can keep well during this stressful time – Toni Dunlop

Whilst we are speaking of change, have you changed your address or contact information recently? Please let us know so we can keep up to date with you.

We have heard that some are not always getting the newsletter by email, if this is true of you or anyone you know, please contact me and I can look into this. We have changed the way we send out now and hope this will help address any issues.

Email psnadmin@poliosurvivorsnetwork.org.uk

Mail PO Box 954, Lincoln, LN5 5ER

Website www.poliosurvivorsnetwork.org.uk

Phone 01522 888601

I got this this morning from Phill Munn [Munnart aka Phill Munn – on Facebook or try trendsmap.com/twitter/ tweet/1041206646226268160

Have a look at his fantastically different art from around Lincoln. He is a Postman and has a great sense of humour and I laughed so much at this.

“Good morning everybody, I’ll be out on the Ermine today with Jess. It’s going to be a lot more quiet on the streets, and probably some police and army presence, we shall see. I shall try and get some photos. Please don’t offer to feed Jess, she’s eating me out of house and home. Stay safe”.

PSN would like to thank all contributors, Imprint Colour Printers and the Postmen for their help in getting this newsletter + medical enclosures to you.

Post Polio Matters Volume 9 Issue 12 Read More »

Post Polio Matters Volume 9 Issue 11

Polio Survivors Network is the working name of Registered Charity 1064177, The Lincolnshire Post-Polio Network

Printed by Imprint Colour Printers Lincoln 01522 539570

Lincolnshire PostPolio Library 100+ articles

Polio Survivors Network Newsletter

NOVEMBER 2019 Volume 9, Issue 11 of 12 [107]

“Act locally, think nationally”Watching areas where local campaigners have taken the NHS to task, there have been small, local victories. It seems that if residents get their MP on-side, and mount a targeted campaign, they often win.What changes are needed where you live?

TurnFRUSTRATIONIntoHAPPINESSwithONE Nationally Used Assessment Form

NEURO NUMBERS 2019 – www.neural.org.ukThe importance of data… During the development of the NHS Long Term Plan there was a very clear message from NHS England that if the benefits of a proposal could not be evidenced, it would not be included. It is for all these reasons that The Neurological Alliance has long campaigned for more and better data in neurology, which until recent years, has been virtually non-existent.Lincolnshire Neuroscience Forum/Lincolnshire Health Authority Survey of GPs 2000 Only 36 of 347 GPs responded with a 10.4% figure of 6,633 patients with 34 conditions What if all GPs had responded? A possible 64,788Lincolnshire HARG Report 2018 6,064 patients with 6 neuro conditionsLINCOLNSHIRE JSNA – Neurological Conditions [New topic Oct 2018]brings together detailed information on local health and wellbeing needs and looks ahead at emerging challenges and projected future needs.NEURO NUMBERS 2019 states ONE in SIX have a neurological condition. POPULATION LINCOLNSHIRE 2018 – 755,833 divided by 6 is 125,972

Page 2

QUICK NOTES

Since our last newsletter was published we have had 20 members join. We extend a very warm welcome to you all and hope you enjoy your first newsletter. Please feel free to contact us with a piece to introduce yourselves.

Further Post Polio information:

 http://www.post-polio.org/

 https://www.polioplace.org/front

 https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Post-PolioSyndrome-Fact-Sheet

Page 2	Contents
Page 3	Editorial, Hilary Boone
Page 4	Message from our Chair, Simon Parritt
Page 5	New Features – Toni Dunlop, Administrator
Page 6 – 8	An Interview With NEW ARTICLE
Page 8	Introducing Our Member NEW ARTICLE
Page 9 – 12	Basher Boris v. Crafty Corbyn start Electioneering slugging it out over NHS ‘facts’ and The NHS wastes money but ignores ‘credit control’ on its doorstep! – Verité PSN Trustee and www.aftercancers.com
Page 13 – 14	Why cant we manage Co-Production. Iggy Patel, Halo Able Tec. Added comment from Hilary Boone.
Page 15	I am not LAZY. I have MUSCLE FATIGUE from Polio known as POST-POLIO SYNDROME. – Hilary Boone
Page 16	In 2005 West Berkshire Neurological Alliance raised funds for a General Specialist Neurological Nurse for Six Rare Conditions, Independent Impact Study by the University of Reading .
Page 17	Local adult neurology services for the next decade. Report of a working party – June 2011 Royal College of Physicians. Lincolnshire Neurological Alliance made presentation to Dr. Martin McShane, Director of Commissioning & QIPP NHS Lincolnshire on August 22nd 2011
Page 18 – 19	Continence for Polio Survivors – Zsuzsanna Snarey, Trustee
Page 20 – 21	Post Polio News – Usefulness of electromyography to predict future muscle weakness in clini
Page 22	Best information found for Polio Survivors repeated every newsletter to give to NHS staff
Page 23	Contact Information
Back Page	New articles, Reset and pause, Val’s photocards

Editorial by Hilary Boone

A big autumn hello to all our members. Where did this summer go? Our summer holiday were just those four days away ‘down South’ featured in the last newsletter. Thankyou Mick Harper for persuading us to try and see if we could manage. We did, with the fantastic support provided by Richards Carer Helen. Being honest we came home exhausted and in more pain and it took nearly five days doing almost nothing to get back to our norm. Was it worth it? Yes definitely. Lovely memories of people and places to remind us of happy days. We need more.

Why only 4 days holiday? Because I have been so snowed under with paperwork for two years from many different departments [Adult Social Care, Carers First, various NHS departments, the local Clinical Commissioners, the DWP, DLA to PIP, the local Council etc.] taking up energy tokens out of my PPS life. I have had to stay home whilst Helen has taken Richard out to get it done. My social life reduced to almost NIL. We explain PPS and how we manage our lives but because each of them is one department they assume that what they want from us is manageable. Add it all together and it is a mountain – an Everest that this Hilary does not want to keep climbing.

Add to that the help we get from the NHS is minimal and is mostly quick yearly reviews. Social Services think we have lots of appointments and multi disciplinary assessments, and rehabilitation etc… If only. Most I speak to agree it is our own research and that of our support groups that gives us the information to manage our lives.

Brexit is not a subject many of us want to add to the struggles of our daily lives. This newsletter provides you with some information from various view points that I have picked out of a huge number available. The main point that Veritéé makes is that for the next few weeks our MPs and councillors are more likely to listen to what we have to raise with them. Act locally but think nationally. What problems are there where you live? Can you talk to your local user organisations and other support groups to put forward the problems in your area?

What do we want in Lincolnshire? We want the same thing Lincolnshire Neurological Alliance [formerly named Lincolnshire Neuroscience Forum] have been campaigning for since we started in January 1998. The same services as in larger counties with university hospitals. Lincolnshire as we have told you before is called ‘A Black Hole’ when you mention neurology.

In 1998 there was just one visiting neurologist one day a month at our major County Hospital. Yes just one day a month. That was all the exceedingly low and population extraction figures from nationally published neurological documents Lincolnshire Health Authority thought they needed e.g. 24 patients with Myasthenia Gravis and 112 members in the support group and not everyone joins.

By 2000 we had the results of a joint LNF and LHA survey of GP’s asking just one question, how many patients with one of the following 34 conditions? Only a 10.4% response but 6,633 diagnosed with a neurological condition. We had proved their figures were incorrect. More clinics were started, a resident Neurologist appointed, a Neurophysiologist and the MS Nurse moved from Nottingham to Lincolnshire. Sadly whilst things improved for a few years – the Resident Neurologist moved to Shropshire – and whilst others appointed things have started to decline. The reason is exactly the same as before. Without data we cannot prove the need. There is no neuro data available. How can services be planned if the folks at the top have no idea how many patients with neurological conditions there are?

Just look at the block on the front page. If Neuro Numbers 2019 is correct with one in six having a neurological diagnosis then the services in Lincolnshire [and many other counties] are nowhere near enough. Unless the Read Code data from all GP’s is accessed we will just have whatever figures each document manages to collate.

Members please tell us about the problems you have with the NHS and Adult Social Care, nothing printed without your permission. The more evidence we have of the issues being faced, the easier it is to campaign for improvements.

Off to the Neurological Alliance AGM next Wednesday so more to report next newsletter.

Wishing you all a very Happy Christmas and the all the best for 2020!

MESSAGE FROM OUR CHAIR

Christmas Promises

This issue is the last of 2019 and the pre Christmas issue but perhaps the most important issue is also the upcoming election and how the outcome will impact us as disabled people and polio survivors. I can only urge you all to vote and to consider how the policies impact upon us as disabled people, and to also think of the many younger disabled people who will be impacted by the outcome of policies that are being promised.

I have spent the best part of my life working as a Psychologist in various settings both privately as well as in a GP surgery through to the geriatric department of a London teaching hospital and also within the voluntary sector where I was also the CEO of a disability charity. In many ways we have made huge progress in technology and medical treatments, but we have slipped back in so far as holistic care has been marginalised. The health and social care reforms have created multiple separate silos of professions, specialties, authorities and budgets. The impact upon disabled people, perhaps like many, but especially PPS and others with complex needs, has been a failure to meet our needs and put an increased burden on us, our family and relatives to become managers of the huge bureaucracy whilst also fighting the ignorance of our needs as polio survivors, patients and human beings.

I suggest that when looking at what we should be asking our politicians at this time is about the need to return to a centrally funding and unified NHS health and social care service. Hiding cuts by squeezing local authorities funding and pretending that the internal market has worked cannot be hidden behind just promising more money. It is time to really put patients at the core and take a different and more holistic approach, We should not be hoodwinked by the ‘rambo’ type solutions and promises of cash that politicians offer at election times.

Yes, it is clearly about funding, but it is NOT all about funding but how and where the funding goes but what we expect from it. Don’t fall into the trap of blaming things on administrators, clinicians need administrators, lots of them, and good ones. What they don’t need is multiple levels of funding streams and health and care commissioners. We need to return to putting individuals, both patients, doctors and professionals at the heart and not conditions, illnesses and worse, spurious outcome measures. This is about independent living and the social model being at the centre of how we manage our lives. We need to adopt an holistic approach that recognises the multi-disciplinary nature of everyone’s life health journey – of whatever ever age.

This is the challenge we need to confront our politicians with. Throwing money at targets and staff numbers around like sweeties is not alone going to make us happier, more included or even ultimately healthier. As a polio survivor when we need an orthotic, or an assessment for respiratory problems, or some other health or support issue be it heart or cancer, home support or therapy, we need to be treated, in one place, by one service and with one holistic assessment shared by all providers We should be treated as independent autonomous individuals with a life and identity that is more than our condition. We must demand by right the support that enables us to be full, contributory and independent members of our community, family and society.

Fixing us isn’t what it’s all about, even if it that were possible. What is essential is enabling us and supporting us to live independent lives, with choices that deliver, not outcome measures or simplistic friends and family questionnaires, but to have the best possible quality of life.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc (Hon), BA Chartered Psychologist. HCPC Registered Counselling Psychologist

Chair Polio Survivors Network simon.parritt@poliosurvivorsnetwork.org.uk

© Polio Survivors Network – Volume 9, Issue 11/12 [107] NOV 2019	Page 5
PLEASE SHARE EXPERIENCES OF YOUR POLIO LIFE Tell us about the solutions you have found that work for you Tell us about the issues you have managing your post-polio lifeHelp us build of possible solutions to publish in our newsletterNEXT ISSUE – Deadline February 2nd 2020

New Features

Toni Dunlop, Administrator

A quick hello from me. I want to say what a lovely group of people you are. As I deal with many of you via email or occasionally over the phone I thoroughly enjoy my interactions. Many of you have a great sense of humour, a lovely way with words and a real appreciation for the small but important things in day to day life. This is something that has sadly been brought very close to home for me in recent weeks with a number of bereavements in my family. Every day is precious, make the most of them all.

I wanted to let you know that you will find a couple of new articles in this edition of Post Polio Matters. We hope to turn both into a series with your help.

The first article is “An Interview with”. This will take a question and answer format and we hope to have at least one in each newsletter. If any of you have a project, cause, interest or experience that we can turn into a brief interview feel free to contact me (details below). We can do this over the phone by letter or by email, whatever works for you.

The second is “Introducing our Member” which will feature a brief paragraph or two from one of our members, you are all amazing. These will often be new members but we would love to hear from all of our members. I may well be contacting you over the next few weeks to ask for your help. Many have commented that they enjoy reading of other polio survivor experiences as they find it inspiring, comforting or can relate to what is expressed. Any information provided can be published anonymously if preferred and a photo is optional.

We hope that you enjoy these articles and as always please let us know your thoughts.

– Toni Dunlop

Email: psnadmin@poliosurvivorsnetwork.org.uk

Post:

Polio Survivors Network PO Box 954

Lincoln LN5 5ER

Tell us a little about yourself and your polio journey

I caught polio in 1953, aged 4, and to begin with was totally paralysed, not even able to speak. I spent some time in an iron lung and then on an isolation ward.

My early memories are of being in a ‘glass dome’, with my parents looking at me. All the doctors and nurses were wearing white coats, with full face masks. All very scary for a 4-year-old, which is probably why I am unable to remember much more. Once I had passed the worse, I began to regain the use of most of my muscles and eventually was allowed home. I then had extensive physiotherapy whilst wearing leg braces, and built-up shoes.

I remember having ‘rather barbaric’ electric shock treatment on my lower legs and feet as they were still very weak. Eventually I was more or less recovered, with a general weakness on my left side. Unfortunately, this weakness, particularly in my chest and back muscles, developed kyphoscoliosis which resulted in me having to have a spinal fusion when I was 14 years old. This was particularly unpleasant with a full body plaster cast from my chin to my hips for 6 months meaning I had to remain horizontal for this entire period, followed by a further 6 months wearing a full Milwaukie straight jacket.

Since then all has been reasonably straight forward, until about 30 years ago when I began to experience post-polio syndrome. This has steadily become worse with extreme fatigue, pains in my lower back and legs, breathing difficulties, and more recently difficulties with my speech and swallowing.

What, in your experience, is one of the larger issues facing polio survivors currently?

The main issues facing polio survivors is the reluctance of the medical profession, and subsequent governments, health authorities, and support agencies, to recognise that post-polio syndrome exists and is a real challenge to a large number of polio survivors around the world.

This means that access to medical support and management of the long-term is very sparse to say the least, with many countries providing no support at all. In fact, many governments actually deny that there are any survivors of polio in their countries, quoting that they have a strict vaccination program.

What is the World-Wide Fellowship of Polio Warriors?

It is a registered charity working to support polio survivors around the world, by acting as a resource by directing sufferers to support groups, medical advice and by any other means that the trustees deem necessary.

We have a members website at www.poliowarriors.org and an information website at www.poliowarriors.info with an accompanying smartphone app, ‘Polio Warriors’. These provide mapped listings of support groups, medical practitioners, and polio survivors who have registered with us.

Why was it set up?

A 2001 report by The March of Dimes, a non-profit agency founded by US President Franklin Roosevelt, a polio survivor, noted that up to 20 million polio survivors around the world face the threat of new disabilities 15 to 40 years after their original illness. The World Health Organisation (WHO) in March 2019 estimated there are 20 million people worldwide with some degree of disability caused by poliomyelitis.

For years most of these polio survivors lived active lives, their memory of polio long forgotten, their health status stable. By the late ’70s, polio survivors were noting new problems of fatigue, pain, and additional weakness. By the mid-’80s, health professionals and policymakers

recognised these new problems as being real and not “only in the patients’ minds.” Studies on this phenomenon called “post-polio syndrome” have been – and are still being – conducted in research institutions and medical centres.

For many polio survivors it is extremely difficult, if not impossible, to locate good medical, welfare, or social support. I decided to develop the smart phone app and websites to provide map-based directories of where some support was available and also where polio survivors were living around the world. After a while I decided that I could no longer do this alone so founded The World-Wide Fellowship of Polio Warriors which is now an England and Wales registered charity.

How can people get involved?

Please register with us and add more names to our world map of polio survivors. Also, we’d love you to consider volunteering with our specialist team research work. If you would like to help us please email peter@poliowarriors.org

Tell us a little about yourself and your polio journey

My father served in the Royal Navy, and we were all excited when he was appointed for three years to Turkey. Istanbul was a colourful and fascinating place as a teenager, but it came to an abrupt end when I caught polio. In those days the ‘Military Covenant’ was taken seriously; I was flown home and sent to the Royal National Orthopaedic Hospital at Stanmore (normally it was a six-month wait to get in).

My first day there, I was examined by the Great Man, Prof. Seddon – then one of greatest experts on polio. Gently he told me “you may never walk again”. I told him I had no intention of staying in hospital – which annoyed him as it was his pride and joy – and he immediately passed me over to the care of his most junior doctor, J.I.P. James. Mr James and I got on like the proverbial ‘house on fire’; saying “it can’t hurt”, we tried out different ideas, and I walked out of Stanmore.

When did you first realise you had PPS?

I had a vague idea, so asked Hilary. She told me all about it, gave me enormous help, and I joined up as a member of Polio Survivors Network (PSN)

How did you get a diagnosis?

Theoretically, I’ve never had a diagnosis from an expert – but then there doesn’t seem one around in today’s NHS. The NHS website has wiped polio off its pages, and now there is only information about PPS. Anyway, what Hilary has put together is good enough for me.

What, in your experience, is one of the larger issues facing polio survivors currently?

Ignorance. I now call in to play acting techniques learnt at school, and when a doctor or nurse lectures me “why didn’t you have the polio vaccine” I burst into crocodile tears, very loudly! I am fed up with such crass comments, and find tears the best way of putting across the fact that we caught polio before Salk produced his vaccine; my mother was so frightened of polio she would have been first in the queue if there had been a vaccine, and breathed a sigh of relief when Dad was appointed to Turkey as in those days it was supposed to be polio-free.

However, ignorance amongst nursing staff is rife, and recently I used my savings to pay for an operation privately; the Pre-Op. Assessment Nurse at Chelsea and Westminster Hospital wouldn’t arrange for me to see the Anaesthetist before my op. and I was scared of a repeat of the horrendous problems I had had when an Anaesthetist from The Royal Marsden hadn’t

administered the correct dosages, even though I clearly remember telling her twice I had had polio.

I had the operation privately, saw the anaesthetist for a good half hour a week beforehand, and sailed through it all. Worth every penny!

What one piece of advice would you give to other polio survivors?

Belong to PSN. I find the Polio Matters newsletter always has two or three things I have ringed for action or to follow-up.

What simple change would make the NHS more user-friendly for you?

To follow the same protocols as most European hospitals. In Europe I would phone the consultant for an appointment; here we are supposed to waste our time seeing a GP for a referral – when usually they haven’t a clue. In Europe you are assumed to have a brain; in Britain the NHS is surprised we have anything between our ears. I remember the wonderful Professor Guiloff sending me off for an MRI Scan at Charing Cross, then telling me with great satisfaction that the scan showed I definitely had a brain.

You have also had cancer and have a very helpful website aftercancers.com. Why did you write this site?

LIVESTRONG, the American cancer charity, says “We believe in information – not pity”. This was exactly what I wanted when I got cancer. I did NOT want “poor you” comments. Neither did I want advice on eating miracle foods, nor alternative treatments. What I did want was sensible, down-to-earth medically-approved advice based on clinical trials and scientific evidence – and understanding and help for what my body was going through, especially handling poisons contained in cancer drugs.

Strangely, help was difficult to obtain. All the charity adverts on TV tell us “we are there for you”, but cancer charities in Britain tend to follow the NHS line, and this service is one of worst in Europe for dealing with cancer issues. Every major survey of European post-cancer survival rates places UK at bottom of table, but try to find out what is happening in America or Europe, and you come up against a brick wall.

https://aftercancers.com/why-write-this-site/

Hi there, my name is Lynne Morton I am 53 years old in November. I contracted polio when I was 13 months old, in 1967 I was given the polio vaccine and the very next day I was rushed to hospital put into isolation and diagnosed with polio. I contracted the disease from the vaccine! All of this is in my medical records; apparently it was tested in the lab and was found to be contaminated so basically the thing that was supposed to stop me getting the disease actually gave me it!

I have managed to live a good life; I have 4 children and a beautiful granddaughter who keeps me on my toes and another grandchild on the way.

I’ve tried to not let the disease stop me too much but recently I am finding it very hard as I feel I am just not taken seriously in regards to my symptoms, and postpolio syndrome seems to be a taboo subject in the health department. I know many other polio survivors are experiencing the same as me, but we will soldier on and hopefully one day make the practitioners see this is something to be taken seriously.

If you would like to be featured in an upcoming newsletter please send your introduction in (short piece) and an accompanying photo if you wish.

Basher Boris v. Crafty Corbyn start Electioneering slugging it out over NHS ‘facts’

All politicians will claim that the NHS, first discussed during the 1930s, worked on during the War, and eventually launched in 1948, is ‘dear to their hearts’.

Translation – we know it’s a vote-winner so watch what we are going to promise! But if you believe politicians’ promises – you really do need treatment.

NHS Providers chief Chris Hopson said “over dramatising NHS difficulties” or making “disingenuous” funding claims did the service “no favours”

Vote Bait

Health is going to be a political football, kicked around from party to party – so here is a guide (using figures obtained from the BBC) to who is saying what – and what I cynically think might happen.

1. Boris Johnson refers to building 40 new hospitals

Whilst he told the Conservative Party Conference that he “pledged billions of pounds for hospital projects across England”. Plans include £2.7bn investment for six hospitals over five years, BUT a further 34 hospitals will only share an initial £100m in funding to start developing future projects. That will go on ‘consultations’; architects’ fees, planning, etc. – NOT on actual building.

And – with a country-wide shortage of staff, how are they going to find enough people to manage these proposed new hospitals?

2. Jeremy Corbyn says waiting times for cancer treatment have risen

He is right. The NHS has become worse at meeting waiting time targets for cancer treatment.

The proportion of patients waiting for more than two weeks to be seen by a specialist, after a GP referral for suspected cancer, has risen from 92% to 95% since 2010. And people who have to wait more than two months from a GP referral until they actually receive treatment has risen from 79% to 86% (relatively small in percentage terms but representing thousands of people waiting longer to be seen).

Wait times are so bad in my area that GPs regularly refer patients ‘out of area’ where waiting times are less; costs in hospital transport are extra – but this comes out of a different budget!

Boris Johnson said cancer survival rates had increased year on year since 2010

Cancer survival has doubled during the past 40 years right across the World. Since 2013 the UK lies at the bottom of European cancer survival rates (according to World Health Organisation, Cancer Research UK, National Audit Office etc)

Mr Corbyn said the NHS was experiencing the longest spending squeeze in its history

Between 2010 and 2018, spending rose by just 1.3% on average. Last year, more money was announced that will bring the annual increase over the next five years to 3.4% – below the longterm average but an increase on most of the past decade.

Mr Johnson said there were 17,000 more NHS doctors and over 17,000 more nurses on wards than in 2010. Mr Corbyn said 43,000 new nurses needed to be recruited to fill vacancies.

The BBC says the prime minister’s figures are broadly correct.

According to NHS workforce data, there are now 18,055 more doctors employed directly by the NHS to work in hospitals than there were in May 2010, and 16,989 more general nurses. BBC

Mr Corbyn is also correct to say there are currently about 43,000 nursing vacancies across the NHS.

Why do we need roughly 60,000 more nurses now than we did a decade ago? Because the UK population is ageing and increasing – that’s why healthcare is such an important political issue.

Mr Johnson highlighted missed targets in Wales, while Mr Corbyn did the same for England

NHS Wales is run by the Labour-led Welsh Government, while NHS England is under the control of the Conservatives. Surely, our health is too important to be a political toy?

There is a list of targets that haven’t been met by both health services, including the widely publicised accident and emergency waiting times.

This target aims to ensure at least 95% of patients who attend A&E are dealt with within four hours of arriving. In the past year I have found this meant waiting 3hrs 55 mins. before being seen by a doctor, who took notes, then disappeared – leaving one waiting even longer.

It hasn’t been met in England since 2015, while in Wales it has not been met in at least a decade.

Is NHS funding worse in Wales?

The Welsh Government allocates budgets for certain departments, such as health and education, but the overall pot is broadly determined by central government. And Mr Corbyn said the problems in Wales stemmed from cuts by Conservative central governments to the Welsh Government budget.

Funding was cut between 2011 and 2017 before it started slowly increasing again. But real-term spending in Wales on public services overall won’t return to where it was in 2010 for another three years.

Finally… the effect of Brexit on the NHS

Expect to hear a lot from Labour in this election about a post-Brexit “Trump trade deal” and the price the NHS would pay as a result.

Mr Corbyn certainly pushed the point home during PMQs, while the prime minister insisted the NHS would always be protected. In the end, as with so much in Brexit, it depends on what is negotiated.

Hitting NHS nails on the head

Patients Over Politics – take action in the Patients Association election campaign – contact them on their website, www.patients-assocation.org.uk

Dr. Jennifer Dixon, CEO of the Health Foundation, comments “despite the promised spending, there are structural questions of funding left unaddressed, such as the real lack of detail on funding social care properly – an issue which is currently crippling the NHS”

You might watch

www.999CallfortheNHS (independent) “Summer 2019 We’re determined to continue fighting with other campaigners to stop USA Accountable Care moving into our NHS – now called “Integrated Care” and Health Campaigns Together (backed by Unions). www.healthcampaignstogether.com

They each hold regular meetings bringing a variety of local campaigns together, they advise campaigns on their websites and blogs, and are run by “hands on” campaigners who are willing and able to give individual campaign advice.

“Act locally, think nationally”

Watching areas where local campaigners have taken the NHS to task, there have been small, local victories. It seems that if residents get their MP on-side, and mount a targeted campaign, they often win. It’s the mass rallies with catchphrases that look good on banners, but don’t say anything definite, that lose out.

An effective campaigner told me The key “awareness-raising” which needs to be done by all campaigners is of local councillors. They should be opposing the proposals of the CCGs (dictated by Govt). Instead, they are rolling over without asking any questions and swallowing the cost

cutting “newspeak” of patently untrue claims from NHS managers. Most Health and Adult Social Care councillors are simply not doing their job of holding NHS managers to account and scrutinising all the details. If they were they would retaliate in the only language which NHS managers understand: legal threats.

She is right – because of polio I need my neck supported when lying down on an A&E trolley. As a cost-cutting measure pillows are being removed; I find murmuring “Injurylawyers4U” produces pillows p.d.q. [pretty darn quick]

What you can do

What’s needed locally? Think small and focus on a project that is do-able. Save our NHS is a lovey catch-phrase but – save what?

When someone wearing a massive party rosette and a false smile comes knocking on your door

ASK what is happening about ….. then bring in your local health issue.

NOW is the time to hit hard – when politicians will promise anything to get YOUR Vote. You are probably face-to-face with a local Councillor, or someone who is active behind the scenes, so now is your chance.

I can’t wait!

(with thanks to Cartoon Stock for their royalty-free image)

The NHS wastes money but ignores ‘credit control’ on its doorstep!

‘If you watched TV in the 80s, you might remember Sir John Harvey Jones fronting the ‘Troubleshooter’ series. He had personal reasons to be grateful to the NHS as his daughter had polio but got the best treatment she could have received. That was in the 50s and the NHS still in its infancy, Matrons were hands-on, not today’s CEOs who are unknown in their own hospital. No MDTs – instead there was a ward round with everyone treating you, from your surgeon to physios and nurses, clustered around your bed. They discussed your treatment with you there rather than in a far-off room with no-one able to say “that’s not me”.

My favourite shot in ‘Troubleshooter’ showed Jones’s utter astonishment, visiting an NHS hospital on a Friday afternoon, and finding it closed down. Then explaining that if you wanted to run a business successfully, you didn’t leave expensive equipment idling when it could be working.

Today, nothing much has changed. One wonders what Jones would think about the continuing saga of the NHS. As he once said, ‘the NHS has the same problems now as it did when I looked at it: vastly over-managed, over-administered, its people under-trusted. …… There is just far too much micro-management”.

Money pumped in [to the NHS] seems to have gone on increased rewards, paying a vast administrative organisation that can’t even do the accounts properly. It’s mind-blowing!

Things have got to change, and along comes David Gilbert with his book ‘The Patient Revolution‘, asking “Could the solution to NHS problems be in the hands of the patients themselves?”. His book comes up with numerous reasons why patients might have answers – not the patients who slavishly repeat the mantra ‘NHS is the envy of the world’ when patently it isn’t. But those Patients who think through medical problems, then want to suggest ways of improving their care.

The NHS must learn to listen to us. Especially for non-medical problems. It doesn’t take rocket science to work out if the motor opening hospital entrance doors breaks down, and you can’t buy a new one off the shelf; get a company to make a one-off replacement.

But instead, last winter the John Radcliffe hospital in Oxford bought in a massive industrial

heating unit belching out warm air 24 hours a day. Costing a fortune to run. And the doors stayed open because no-one fixed the motor. Surely a patient’s company might have supplied the motor unit for free? Matron would have known just whom to ask.

Patients are an untapped resource!

Any hospital cares for a cross-section of people as patients. Perhaps instead of asking all those Politically Correct questions on forms about race etc.., someone might ask us what is/was our job? and next time a ward needs – say – a cupboard to house equipment, a glance at data from recent patients would surely throw up some who had been joiners or carpenters who would be happy to give something back?

Patients are often physically immobile, but many of us find our brain is still very active. Faced with health problems, we go on a hunt for ways to improve this., and often turn to the Internet. From our experience, we can filter out quacks and charlatans, and come up with ideas to improve our health and wellbeing.

I remember discovering via the Internet that I had Peripheral Neuropathy. The trouble I had to convince my doctors that this was a cancer drug side effect! It was only after I showed the hospital info from top official US websites that I was able to arrange suitable treatment.

We can all help

Doctors can’t know it all – but by telling each other what we discover in Newsletters like this, by exchanging accurate information, etc. Patients can gradually change treatment for the better.

When an Election is called it’s surprising what you can achieve if you put your mind to it!

The trick is to get your MP onside and make sure they ask for a share of Government funds for your particular interests.

Polio and the PSN are going to have to compete with vested interests demanding funding for their project. Therefore, unless there is a particularly strong campaign locally for one thing e.g. closure of A&E, etc. it’s best to ask for overall funding for NHS in the manifesto and fight over the spoils once they are allocated.

NHS is going to have to compete for funding this winter with potholes, education and a host of other services wanting a share of the government pot, so the more emails on ‘funding for the NHS’ the better.

When you send an email to your MP, it is highly unlikely they will have time to read it, particularly in the run-up to an election. What happens is, one of the PAs/secretaries/party workers will be given the task of counting up how many emails/letters/etc received under each topic, then reporting to party HQ, who tots up the returns across the country and decides which has the most demand.

So don’t spend hours over your email – just make sure Subject says what it’s about in LARGE letters.

If applicable, get the Unions on your side: Unite and/or Unison are the two biggies.

Charities such as Age UK, Patients’ Association, etc. will all be lobbying. If you belong to any you can add your plea for extra funding to their efforts. But again, keep it short.

Get other patients involved. This can be difficult, and don’t be surprised if they shy away and say “I don’t want to be involved”. There is a mindset that believes if it complains they will be marked – and there is nothing you can do about this except move on to the next person. Eventually you will find a like-minded patient and the two of you will be formidable.

And if you want inspiration, no French doctor would have dared tell a Frenchwoman, as I was told, that her skin problems “are due to your age”, neither would an American woman have taken it lying down if US healthcare tried to operate a post-code lottery!

We just have to forget the stiff upper lip and go for it – and have some fun!

Verité Reily Collins – veritegreenbee@gmail.com

WHY CAN’T WE MANAGE CO PRODUCTION? 2.10.2019 by Iggy Patel [Halo Able Tec – iggy@haloabletec.co.uk]

You would think after all most 30 years of talking about co production, we’d have nailed it by now. You’d presume as everyone seems to think it’s a good idea co production would be a concept so firmly embedded into our culture that nothing would happen without it being co-produced. It’s so natural that it doesn’t even need to be mentioned it just happens. So why doesn’t it?

Who doesn’t think people should actually be getting involved in local democracy, helping to shape what is needed, working together to improve matters. Isn’t that co-production? So why aren’t people invited to have their say at council meetings? Or to work on policies and processes? To remind those that are there, that these things actually matter and affects people on a daily basis? Why must reports come only from officers who are paid to produce such? Can they truly be Independent?

Unfortunately as our politics seem to show, trying to get anything done is a nightmare. What sort of democracy is this? Whether in Government, NHS or Local Authority, those in power seem to want to hold on to it and stand and tell people you will do as you’re told. I make the decisions. Isn’t it time to stop that bossy, top down attitude, and to try and work towards a true democracy.

You wonder why then we can’t get co production done or even started. Still every day I see snippets all over social media which says it’s time to talk, we must meet and discuss, even this last week the NHS where promoting at quite an expense and with countless people attending personalisation. Which in essence is all about independence, choice and control, something you can’t really do without co-production. How do you know what my needs for independence, choice and control even are without talking to me?

For it to really happen we need a change of thinking, we need those in power whether in National Government or Local to remember they are there to serve the people and not for their own financial or personal interests. We need to change our way of thinking away from I’m in it for myself, what’s best for me, to we are all in it together, what’s best for all of us.

One of the first steps to co production as to be involve people at the start. Don’t develop plans and reams of paper which is all technical and needs a dictionary to understand. Remember at the end a service user needs to understand it. Bring in people at the idea stage, take the people along the journey. Don’t just send a postcard at the end. Too often we are brought polices, within which the detail or practical considerations are missing. I have literally just read a report with wonderful diagrams and jargon filled where it shows the communication with the client happening three quarters of the way in the process, all the decisions and planning already being made. This Policy is supposed to be a new way of working locally.

People say no one’s going to do it for free, well I along with a number of colleagues have gladly attended meetings 10 years for free. It’s my life, as a disabled person with physical and learning disabilities in order to have the benefit of living independently, with choice and control for me it’s not about money. It is literally my life my basic rights, that I fight for. The sticking point is always we talk and nothing ever happens. I and my colleagues have drawers, boxes full of files, from meetings, which never get anywhere, only to be reinvented a few years later. When asked why it is the same crowd faces all the time. The answer is pretty obvious, if you can’t be bothered to listen to us, we are not going to go out and tell people to get involved you’ll be heard. The word of mouth is a powerful tool that can work for you or against you. It’s free and easy, it’s up to you whether you want it to work or not.

For years I worked in the system, trying to get things done as a local authority worker in effect co-producing and partnership working without even actually calling it those things. No words, no fancy titles, just doing it, and time and time again I was faced with egos and power struggles. As an example often I would ask people in departments to pass me a process or report or document and in some occasions it could take up to a year before I finally got to see it. Now I work out of the system, if I want a document I’ll ask, if it’s not forthcoming I will use the powers available to me via Freedom of Information or Data Protection and get the same reports in weeks. Surely that’s just

ridiculous isn’t it! The point is here if you can’t talk to each other properly within, how can you go outside and ask for people to help you?

Sure I and my fellow disabled friends and colleagues will work with any organisation and give you our time because it’s important to us. However if it has, it usually becomes just another talk, discussion, meeting without any succinct manageable plans with achievable targets, you’ll soon notice we’ll stop attending. If you can’t make it happen stop doing it and give it to someone who can get it done.

I guess at the end of the day, everyone tries to fight for what is truly important to them, not just a pay packet, but knowing that you make a difference, you’ve achieved or done something for society or someone that will make it better. Or will it be more of the same I’ve done my 8 1/2 hours, give me my money and good night?

Whether its democracy or co production you want you only get what you truly put in. If it’s something you are passionate about, regardless of the financial benefit you will move forward. Somethings, some freedoms are worth fighting for whatever the cost.

Hilary Boone adds… along with Iggy and many friends and support group workers have also attended many meetings for up to 30+ years. We have been giving up valuable time from our disabled User/Carer of a disabled user lives to positively raise issues that we experience hoping that changes can be made so others do not struggle to get through the same problem.

Sadly after all these years we have realised that every time there is a change in boundary, trust name, Government Act, change of political party in power nationally or locally, everyone starts again, archiving all the previous information. How many times have we heard ‘Forget the past, this is a new way of working’.

Just one example of an issue that costs the LCC money.

To receive a direct payment to help manage our lives we are assessed by a [RAS] questionnaire. Our answers to the questions award points, totalled then multiplied by a figure for the year.

Then a Financial Assessment to see if we have enough money to pay towards this amount. The form lists funds coming in and then amounts we can deduct. Disability Related Expenditure Special items we have to purchase because of our disability can be deducted. The larger items, like a wheelchair, are divided by 500 [10 years] smaller items over 1 year. If the final figure is a positive amount then that amount is deducted from the yearly figure. We have to pay that money into a separate bank account and Social Services pay in the remainder by instalments.

Every late March we are sent a Financial Assessment Charge Explanation for next year.

“If the amounts of money we have used to work out how much you should pay is wrong, please tell us in writing by May …… You can do this by crossing out the information that is wrong and putting the right amount next to it” Example border added for this publication.

On 12th March 2012 – 5 of us who attended a Lincolnshire County Council paid for Partners in Policymaking Course were asked to repeat our presentation to a huge meeting of County Staff.

We asked for lines from words to figures. We asked for a column to put the new figure in. We asked for increased information on what ‘other outgoings’ and ‘miscellaneous’ referred to.

March 2019. There is still no change to the form. Users, Carers and Staff spend more time and stress trying to deal with this and that costs the Council money.

So are they really listening? Are we more than box tickers to say they have consulted?

Fc Buildings Insurance	– £ 4.00
Fc Council Tax	– £ 9.45
Fc Other outgoings	– £ 2.42
Fc Miscellaneous	– £ 1.40

I am not LAZY. I have MUSCLE FATIGUE from Polio known as POST-POLIO SYNDROME.

PLEASE will each of the many departments/organisations I have to deal with understand that in total this has to be fitted into managing my disabled life.

Slide 1. Our muscles were affected by the Polio virus and some nerves were killed.

Those that were not killed grew axonally sprouted roots that took over some of the orphaned muscles fibres. This was our recovery system.

We do not know how many orphaned muscle fibres were reactivated in each area. Many thought parts of our body recovered fully.

Slide 2. Simply shows that when the working part of the muscle wants a rest it asks resting muscle to take over. No polio and there is about 70% resting and when this takes over there is still about 40% still resting.

Many of us thought that many of our muscles recovered to normal. However, a muscle graded 5 normal that was affected by the polio virus might only have 60% usable. 30% working and 30% resting to take over. Now many of think back we remember that whilst we could achieve highly we did not have the stamina of our non polio peers.

Polio affected muscles graded 4 do not have enough resting muscle to take over. We can use this muscle but are advised to stop 20% before we have used up the muscles energy and rest and allow the muscle to recover so that it can do it again.

To manage our lives we advise our members to use Energy Tokens. £10 a day and £70 a week.

Unfortunately each individual polio survivor has to work out how much each action will cost you. Some examples on chart opposite, note the change if you have help.

If your day is going to take more than £10 of tokens then you have to do less the day before and after. Things like do not get dressed, don’t have a shower just flannel wash. Eat already prepared meals. Get someone else to drive.

Paperwork should be as minimal as needed to comply with rules and regulations. It should not take us hours and hours to read, provide the information and check it when complete to make sure there have not been any misunderstandings. Why does every department formulate their own assessment forms?

ONE NATIONAL FORM WOULD SAVE £THOUSANDS!

Pathophysiology and diagnosis of post-polio syndrome

Daria A. Trojan*, Neil R. Cashman

Department of Neurology and Neurosurgery

Montreal Neurological Institute and Hospital

McGill University Montreal, Quebec, Canada

Post-Polio Syndrome

One explanation is that these extra nerves are dying off.

less nerve supply, less functional ability

Recovery – some nerves grew extra roots

that took over orphaned muscle fibers

Acute Polio

Some nerves die

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Polio grade 3

Polio grade 4

Polio grade 5

Working Muscle Resting Muscle Non-functioning muscle

WE KNOW THAT PACING AND RESTING ALLOWS US TO DO MORE

WC Beasley [1961] and Jaquelin Perry [1995]

Found on research that Polio Muscles functioned at a lower rate.

Grade 5 at 60% – 4 at 40% – 3 at 20% – 2 at 10% – 1 at 1%

No Polio

Get self washed and basic dressed for home	50p
Add putting on one brace and shoes.	£1
Add getting out and putting on coat, hat and gloves	50p
Get shower on bath seat wash hair without help	£1
Get shower on bath seat wash hair with help	75p
Get simple breakfast	50p
Get simple snack lunch or reheat already prepared meal.	50p
Prepare and cook a dinner	£2
Eat meal pacing and resting swallowing	50p
Washing up and putting items away.	75p
Add Paperwork for NHS ASC per hour, resting regularly.	25p
Drive about 10 miles in Lincoln easy traffic	50p
Drive about 10 miles in Lincoln in heavy traffic	£2
Load or unload both sets of electric wheels by hoist	50p
Hospital medical appointment on own.	£4
Hospital medical appointment with driver who loads and unloads wheelchair assist with undressing/dressing.	£2

In 2005 West Berkshire Neurological Alliance raised funds for a General Specialist Neurological Nurse for Six Rare Conditions,

MND, Huntington’s, Myasthenia Gravis, Ataxia, Late Onset Polio, PSP Multiple System Atrophy.

This post won a Leadership for Improvement Award and an Independent Impact Study by the University of Reading

EVALUATION SUMMARY

This specialist nursing post was funded by 4 Berkshire charities, the West Berkshire Neurological Alliance, the Motor Neurone Disease Association [Reading and West Berkshire], British Polio Fellowship [Berkshire Branch] and Huntington’s Disease Association [Reading Branch]

It established a clinical nurse specialist [CNS] for neurodisabilities, based within the Royal Berkshire hospital NHS Foundation trust, to work with patients across the Berkshire West area who have rare, complex neurological conditions.

A multimethod evaluation of the post was undertaken by staff rom the University of Reading.

The post was highly cost effective. Cost savings from the reduction in bed stay more than covered the cost of the post. Savings in 2006 [the year following appointment of the CNS] were of the order of twice the cost of the post – ranging from 165% to 274% of the post costs, depending on the method of calculation.

This is likely to be an underestimate of the cost benefit, since it does not include any additional income to the hospital trust from freed capacity to increase the number of hospital admissions.

Patients and Carers valued the post highly. The majority believed there was little improvement to be made to the service, beyond ensuring it was continued, in the words of Carer asked to choose something to improve the service

“She [CNS] is wonderful. She gave me so much support, without which I don’t think I could cope. My wife [of over 50 years] only wish is to stay at home, and [CNS] gets us all the help we need. Her job is vital, she cannot be done without. FOR HER: more money, more help with her workload.”

FINDINGS.

1. The evaluation found that he post met the outcomes desired by the funders.

2. It provided rapid and timely access to specialist knowledge and services.

3. Patients and Carers reported greater satisfaction with health services

4. Patients’ length of stay in hospital was reduced.

5. Patients and Carers were extremely positive about the post, indicating that the CNS helped

meet national and local policy objectives, providing

6. A patient centered service, with patients offered information about their condition

7. Rehabilitation, advice and support to meet continuing and changing needs.

8. Support for Family and Carers.

9. Care during admission to hospital or other health and social care settings ensuring patients

neurological needs are met when they are having care for any other reason

10. Appropriate speed and flexibility of service delivery, within and across professional and

agency boundaries.

This post was then funded by the NHS.

Local adult neurology services for the next decade.

Report of a working party – June 2011

EXCERPTED

Neurological disorders are very common

• Accounting for about one in 10 GP consultations

• Around 10% of emergency medical admissions [including stroke] and

• Disability for one in 50 of the UK population.

They include many different conditions of varying severity, some very common and others exceeding rare, from migraine to motor neuron disease.

This new report makes three proposals:

1. An expansion and improvement of local services with a shift in emphasis from scheduled to emergency care

2. Better organised care for patients with long-term neurological conditions, managed in part through an enhanced role for specialist nurses and general practitioners with a special interest in neurology.

3. Better local planning of services with increased clinical involvement within a commissioner/ provider forum, creating a neurological network to improve clinical and financial outcomes.

Lincolnshire Neurological Alliance made presentation to Dr. Martin McShane, Director of Commissioning & QIPP NHS Lincolnshire on August 22nd 2011

January 1998 at the Lincolnshire Neuroscience Forum first meeting we learned that Lincolnshire County Hospital held ONE NEUROLOGICAL CLINIC ONE DAY A MONTH.

In 1999 Lincolnshire Health Authority showed us the Specification for Neurology Top 16 Neuro conditions. At Number 16 was Myasthenia Gravis with 24 patients. The MG rep stood and said we have 112 members and not everyone joins. HB stated there are 5 support groups here not listed all with all more than 24 members. Lincolnshire Health Authority admitted their figures came from extrapolating a population figure from the 16 nationally published figures. Sadly we then learned for years the national figures had come from adding up the local health authorities figures.

In 2000. The LNF asked and LHA agreed to survey their 347 GP’s with just one question. “How many patients do you have with a diagnosis of the listed 32 neurological conditions? Only 36 [10.4%] of the 347 replied with 6,633 patients – Population of Lincolnshire 634,300. How many would there have been if all GP’s had responded?

Lincolnshire Neurological Alliance have had to campaign hard over the last few years to get neurological conditions added to the Joint Strategic Needs Assessment.

From research-lincs.org.uk [The Joint Strategic Needs Assessment (JSNA) for Lincolnshire reports on the Health and Wellbeing needs of the people of Lincolnshire. It brings together detailed information on local health and wellbeing needs and looks ahead at emerging challenges and projected future needs.

How big is the problem and how do we compare?

What services & activities are in place and how well are they performing?

What inequalities exist? What are the unmet needs and gaps? What are people telling us? What are the risks of not doing something?]

Nineteen years later in 2019 – despite many requests from LNA and promises from a variety of Public Health/NHS departments – Lincolnshire are still unable to provide accurate DATA for how many patients have neurological conditions.

“How can you plan neurological services if you do not know how many patients?”

Continence for Polio Survivors by Zsuzsanna Snarey

It is hard to talk about continence as it is an embarrassing subject. Many people do not seek advice from their GP because they believe it is a normal part of ageing or because they are too embarrassed. Many people are not aware that there are successful treatments available and don’t like to bother their GP. But given that the polio virus affected the whole body it is probable that bladders and bowels were also affected. It is a very common problem of polio survivors. Even in the general population, approximately 10% of all adult women suffer from urinary incontinence]. It affects 11% men and 20% women over the age of 60. That means 1 in every 5 older women and 1 in every 10 older men have problems with continence. Older women experience more incontinence than breast cancer, heart disease or diabetes. The number of affected men also increases with age. Men aged over 75 are likely to experience bladder problems because of an enlarged prostate. This can be treated with drugs from the GP.

If you decide to consult your GP he will probably ask you about your symptoms and medical history, whether urinary incontinence occurs when you cough or laugh. This is called stress incontinence. If you need to go to the toilet frequently during the day or night, you might have an oversensitive bladder. The GP will ask if you have any difficulty passing urine when you go to the toilet and if you are currently taking any medication, also how much fluid, alcohol or coffee and tea you drink. Caffeine has an irritating effect on the bladder. You might try and see if giving up tea and coffee has any beneficial effect. You may also have some tests and examinations to rule out things that may be causing incontinence.

We also need to think about the ‘almost’ leaks and the people who get to the toilet ‘just in time’, because providing advice and treatment at this stage may prevent incontinence from developing later. Lower urinary tract symptoms and incontinence is never normal and should always be investigated and treated. A significant, painless urinary infection can cause a general sense of being unwell, fatigue, weakness and confusion. A painless urinary infection can cause incontinence and frequency of urination during the day and the night. If undetected and untreated, it is responsible for a great deal of problems.

The normal bladder functions as a reservoir to store between 350–500ml of urine. The bladder has two phases – filling and emptying. The kidneys constantly filter urine into the bladder, gradually filling it. During filling, the bladder, which is made of muscle, should remain relaxed and slowly expand to a point where you become aware of a sensation of fullness. It is normal to be able to put off urinating until a convenient time and place is found. When ready to pass urine, the bladder should squeeze to empty itself completely. Then the filling begins all over again.

In females there is only one actual bladder neck sphincter, the external sphincter, comprising striated/skeletal muscle under the voluntary control of the somatic nervous system. This muscle can be exercised and will strengthen with pelvic floor exercises. Compared to males, females are more at risk of problems with their urinary continence, as they have a short urethra and only one bladder neck sphincter. They are also more at risk of infections because the anus is fairly close to the urethra.

Males have two sphincters:

1. Bladder internal/neck sphincter, smooth muscle is continuous with the detrusor muscle and

is under involuntary control or autonomic control; the function of this sphincter is to keep the

bladder closed at the time of ejaculation.

2. External bladder neck sphincter, striated/skeletal muscle at the base of the prostate and is

under voluntary control of the somatic nervous system. This muscle can be exercised and

will strengthen with pelvic floor exercises.

The pelvic floor muscles are made up of slow and fast twitch fibers. It requires the combination of both slow and fast twitch fibers for the pelvic floor to work. It is also important to also understand the interrelationship between pelvic floor and abdominal muscles. When abdominal muscles are contracted strongly the entire pelvic floor contracts in response. This is known as co-contraction. It may be advisable to be instructed by a qualified nurse about the correct way of doing pelvic floor strengthening exercises.

Urgency and accompanying urinary leakage may be due to an over reactive or irritable bladder which may want to empty even when not very full. You may feel as though you are busting but when you get to the toilet there may not be much urine to pass. There are many reasons why a bladder may become irritable such as infection, poor bladder habits, poor fluid intake, constipation. Sometimes we just don’t know the reason why. Bladder training involves learning techniques to help you to calm the bladder down.

The aim is that your bladder will, eventually, squeeze to empty only when you are quite ready for it to happen and will hold larger volumes of urine. This may take time, patience and determination. You should expect good and bad days for a while. Learning pelvic floor muscle control is essential to success.

Other ways to help yourself are

• Drinking 2 liters of water a day and cutting down on tea and coffee

• Not drinking 2–3 hours before going out where there is no toilet access

• Not drinking 3–4 hours before going to bed

• Not suppressing a desire to void

• Visiting the toilet so that voiding volume generally is 200–300 cc

• Taking time for toilet visits

• Going to the toilet before going out where there is no toilet access

• Going to the toilet just before going to bed.

• Make access to the toilet as easy as possible

• If having trouble getting pants off quickly, consider elasticated waistlines.

• Increase ability to fully empty the bladder by leaning forward slightly when sitting on the toilet – rest elbows on knees to give urine a “straighter” path.

Swollen legs which cause more voiding at night may be relieved by elevating legs as much as possible when sitting, exercising such as walking to stimulate the venous pump in the legs, and using compression stockings. Swollen legs can be caused by diseases other than weak muscles. If you have swollen legs you should discuss it with your doctor. Contact your GP if these symptoms have arisen within 1–2 years or if the above advice is of no help.

Many health conditions are a result of being overweight or obese. Weight gain is a result of eating too much fatty, sweet or high-calorie foods, coupled with too little exercise. Many of today’s common health conditions are called “lifestyle diseases” as they’re caused by our poor choices of (more) food and (less) activity over time. If you’re overweight, you’re in a high-risk group for poor bladder or bowel control.

Editors Note: Foods move slowly through our guts and more water is excreted and stools becaome harder.Further reading ’Slow Guts & Polio Survivors’ http://postpolioinfo.com/library/SlowGuts.pdf

POST POLIO NEWS – www.post-polio.org.ukAn online news cutting service from Chris Salter that specialises in news relating to polio, post polio, disability and other health related issues.Twitter, Newspaper, RSS feed, Facebook, LinkedIn, Daily digest emails.

Usefulness of electromyography to predict future muscle weakness in clinically unaffected muscles of polio survivors | PM&R.

[Manuscript received: 12 April 2019; Manuscript accepted: 24 October 2019; Accepted manuscript online: 08 November 2019] Abstract only.

Background – Post-polio syndrome-induced muscle weakness may develop in limbs that have had normal muscle strength and been considered unaffected by polio.

Objective – To investigate the utility of electromyography (EMG) for predicting future muscle weakness in clinically unaffected limb muscles of polio survivors.

Design – Retrospective Study Setting – Academic polio clinic.

Participants – Polio survivors (N = 77) who underwent EMG between April 2008 and March 2010 and were followed for at least 2 years.

Materials and Methods – Chart reviews were conducted to extract baseline EMG and manual muscle strength test (MMT) results to investigate the relationship between baseline EMG abnormalities and change in muscle strength over 2 years for various upper and lower limb muscles that control movement in the limb joints.

Main outcome measures – Sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) of EMG findings for prediction of subsequent muscle weakness.

Results – EMG data were available for 44 deltoid, 59 biceps brachii, 60 triceps brachii, 59 vastus lateralis, 59 tibialis anterior, and 55 gastrocnemius (medial head) muscles. The percentage of muscles with an initial MMT of grade 5 that developed weakness over 2 years of follow up was approximately 15% for most muscle types. Sensitivity of EMG to predict subsequent weakness was higher in the lower limbs (0.67-1.00). Specificity was higher in the biceps brachii (0.83). PPV was higher in the biceps brachii (0.50). NPV was higher in the lower limbs (0.89-1.00) but lower in the deltoid (0.75).

Conclusion – EMG abnormalities were detected in some clinically normal muscles of polio survivors. EMG abnormalities predicted muscle weakness 2 years later, although the strength of this relationship varied depending on the muscle. Original Source Article – https://bit.ly/2NSYrEj

Polio Vaccine May Stall The End Of Polio | npr Goats and Soda

[November 15, 20195:04 PM ET] Jason Beaubien writes: As the global effort to eradicate polio gets tantalizing close to its goal, the program is running in to new challenges.

One of the biggest obstacles this year is the proliferation of so-called “vaccine-derived” polio outbreaks.

Conventional polio caused by the traditional form of the disease is now only occurring in two countries in the world — Afghanistan and Pakistan. The World Health Organization calls this form “wild” polio and there’ve been roughly 100 cases so far this year. This is a tiny number compared to the 350,000 cases that occurred globally before the Global Polio Eradication Initiative was launched in 1988.

But what’s troubling now is that there are currently more kids being paralyzed by cases of vaccine-derived polio than by the original “wild” variety.

“We have seen a lot more countries impacted this year than last year,” says Dr. John Vertefeuille, the head of polio eradication at the U.S. Centers for Disease Control and Prevention. There’ve been outbreaks this year in the Philippines, China, Myanmar, Pakistan and a half a dozen African countries.

“Because of the rising number of individual outbreaks,” Vertefeuille says. “The CDC has taken a decision to do a surge staffing effort focusing on Africa.”

He says the CDC is in the midst of sending up to 100 additional personnel to Africa to help track, manage and wipeout vaccine-derived polio outbreaks over a six-month period.

Currently around the world, all children are supposed to get vaccinated against polio. In the U.S. and other wealthy nations, kids get 4 injections of inactivated polio vaccine spread out over their first 7 years of life. This injectable vaccine does not contain live virus, so it does not and cannot cause vaccine-derived polio. In lower income countries with weaker health systems, an oral vaccine containing a live but weakened version of

the polio virus is used. It’s cheap and easy to administer through a few drops in a child’s mouth.

In the early days of polio eradication, this live oral vaccine also had the added benefit that it could circulate in a community just like the real, wild virus. In places with poor sanitation, wild polio and the virus in the oral vaccine can spread from sewage to drinking water. At first this was great. Kids who hadn’t been vaccinated by health workers ended up getting exposed to the oral vaccine and protected against wild polio because of their lousy drinking water supplies. But over time the virus from the oral vaccine starts to regain strength and if it’s allowed to circulate long enough, it reverts back to the point that it can cause paralysis just like the original virus.

“We actually do genetic analysis so that we can understand the closest relative of each (virus) detection that we see globally,” says Vertefeuille at the CDC. And in these vaccine-derived outbreaks, they can see that the virus that’s paralyzing kids is directly linked to the vaccine that was distributed earlier.

Andrew Noymer, an associate professor of public health at the University of California Irvine says the global polio eradication effort has made incredible progress over the last three decades but now it’s reached a difficult moment. He compares the current efforts to vaccinate every child against polio to being stuck on a treadmill. “You have to keep vaccinating all the children so you won’t have any paralyzed children,” Noymer says, “But the more you vaccinate, the more live virus continues to circulate. And the minute you step off the treadmill, you get some paralyzed kids.”

One way to get off that treadmill would be to get rid of the live oral vaccine and switch to the not-live, injectable vaccine used in the United States. The Global Polio Eradication Initiative has tried to move in that direction but there are several challenges. First there just isn’t enough supply globally of the injectable vaccine to cover the hundreds of millions of kids in low income countries. Training vaccinators to give injections is much harder than training them to give two drops in to a child’s mouth.

Also the vaccines work slightly differently — with the oral version doing a better job of breaking chains of transmission and stopping outbreaks.

The Switch

A few years ago the world looked like it had a chance to get off the virus/vaccine treadmill at least partially. There are three distinct strains of polio and each strain requires a different vaccine to prevent against it.

In 2015, the WHO declared Type-2 wild polio eradicated. But the problem was that the oral polio vaccine still contained live weakened Type-2 virus and while the wild Type-2 was gone, occasionally there continued to be outbreaks of vaccine-derived Type-2 polio.

So the Global Polio Eradication Initiative orchestrated a manoeuvre that insiders call the “switch”. In April 2016, everywhere around the world the old oral polio vaccine that contained all three strains of the virus were to be pulled out of circulation and replaced with a new vaccine. The new oral vaccine would only contain virus to protect against types 1 and 3. Health officials expected that some rogue Type-2 viruses would pop up and they had plans to quickly attack any Type-2 outbreaks that might occur. But they also expected that Type-2 vaccine-derived polio would die out relatively quickly.

“It was it was a bold move,” says Noymer, who studies the history of outbreaks. “It was a sign of incredible progress. But it was a gamble and it didn’t pay off.” Now, three years after Type-2 polio was declared eradicated, the most problematic form of polio is vaccine derived Type-2.

That’s because in order to respond to those predicted vaccine-derived Type-2 outbreaks, health officials inoculate kids near the outbreak with a specially stockpiled vaccine that protects only against Type-2. But there can be spill over from these mop-up campaigns, which gives the virus another chance to get into the environment, circulate and regain strength in communities. People who were never immunized end up getting exposed, sparking another outbreak.

Since the switch in April 2016, health officials have distributed roughly 300 million doses of this emergency vaccine to combat outbreaks. By doing so they’ve put hundreds of millions of viruses in to the environment that kids are no longer routinely being vaccinated against.

The switch seemed like a good idea at the time, but it turned out to be a blunder, says Noymer. Public health drives and particularly eradication campaigns can be hard to sustain. In the mid-20th century there was a lot of talk about “donor fatigue” and whether efforts to wipe out malaria and other tropical diseases would get the funding needed to finish the job. But he says the situation with polio now is different.

“The danger in the 21st century, in the age of social media and the age of anti-vaxxers is not that the donors will lose interest and be fatigued because they’ve shown to be very patient,” Noymer says. “But rather that populations will start saying, you know, we’re sick of this.” He says the real threat could be that parents no longer see any reason to get their kids repeatedly vaccinated against a disease that they don’t see anywhere around them. “And then, of course, you get more people who are susceptible to polio if that were to come to pass.” Original Source Article https://n.pr/33YfFWy

REMINDER FOR MEMBERSHave you changed your home, email address or phone number recently?Did you let us know?

Editors Note:-

Articles from Polio Survivors and Health Professionals very welcome for future issues

The most accepted article we have found by NHS professionals is:

PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

And in case you need an anaesthetic an excellent leaflet translated into English now used by many PPS Groups around the world is:

POLIO PATIENTS AND SURGERY

Information for health staff

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.ptu.dk/fileadmin/FILER/PDF/ISSUU_PDF/BROCHURER/ Polio_operation_ENG.pdf

Text copies of both have been sent to members and are available on our headed paper with permission

POST POLIO SYNDROME EXISTS

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Rely-Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee – Vacancies please apply for more information.

Operations Team

Phone Enquiries – Hilary Boone – info@poliosurvivorsnetwork.org.uk

PSN Administrator, Email Enquiries and Website – Toni Dunlop – psnadmin@poliosurvivorsnetwork.og.uk Printing – Imprint Colour Printers, Lincoln

Management Committee [Trustees]

Membership

Contact us via our website Contact Us page Write to us at PO Box 954, Lincoln, LN5 5ER Email psnadmin@poliosurvivorsnetwork.org.uk Phone us on 01522 888601

(please be prepared to leave a message, your name and phone number we will ring you back as soon as we access our messages)

Donate by cheque or

Cheque payable to Polio Survivors Network

PayPal send funds to treasurer@poliosurvivorsnetwork.org.uk

All donations, small or large, towards our work are gratefully received Towards our GENERAL FUNDS (including printing and posting of newsletters)

Or our CONFERENCE AND MEETING FUND (supporting attendance at national meetings/conferences)

We are always grateful for postage stamps, 1st and 2nd class both normal and large size.

If you pay tax at the higher rate, you can reclaim tax relief on your gross donation at 20% (i.e. the difference between the higher rate of tax at 40% and the basic rate at 20%).

If you have not filled in a current Gift aid form please contact us and we will post you one.

Thankyou.

© Polio Survivors Network – Volume 9, Issue 11/12 [107] NOV 2019	Page 24
© PHOTO CARDS by MEMBER VAL SCRIVENERSold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 including P&POrder by Email to vala.scrivener412@btinternet.com Or ring Val on 01234 346 397

because WE’RE STILL HERE!

www.post-polio.org

*new* article – Introducing our members

See page 8

*new* article – Interviews with members, supporters and sympathetic causes

See page 6

Take time whenever possible to pause and reset. Spend time in natural settings, reflect on the beauty around you. It is good for the soul.

Each season has its beauty.

Post Polio Matters Volume 9 Issue 11 Read More »

Post Polio Matters Volume 9 Issue 10

Polio Survivors Network is the working name of Registered Charity 1064177, The Lincolnshire Post-Polio Network

Printed by Imprint Colour Printers Lincoln 01522 539570

Enter 100+ articles

Polio Survivors Network NewsletterAUGUST 2019 Vol 10 of 12, Issue 106 n.b. Volumes 1 to 6 published under the name LincPIN

BE WISEPOLIO SURVIVORS IS IT TIMETO TELL IT LIKE IT REALLY IS?

Some photos from the trip organised by member Mick Harper, also Chair of the BPF Lincolnshire Branch and East Midlands Region.

Photos from the cruise on the River Thames from Reading to Henley-on-Thames and the next day from Southampton Docks to West Cowes on the Isle of Wight, to Portsmouth Docks and back again on the Blue Funnel Ocean Scene.

Ocean Scene

Queen Mary 2

Richard

Page 2

QUICK NOTES

 The Trustees Annual Report 2018 and Minutes of the Annual General Meeting 2019 are included as separate documents with your newsletter whether by post or by email.

 A correction was required for an article appearing in the October 2018 Newsletter. It was entitled ‘Therapeutic cannabis and the Post Poliomyelitis Syndrome (PPS)’ article by Dr Peter Brauer. This is again enclosed with your newsletter or attached to your email. Our apologies have been passed to Dr. Brauer for this error.

 Please also find enclosed (or attached to your email) a very interesting article by Dr Peter Brauer Common Misconceptions Concerning the Post-Polio Syndrome to add to your database of information. See note below regarding all publications in our newsletters. We would be interested to hear your comments.

The Polio Survivors of Australia website is another great resource:

https://www.poliohealth.org.au/research-categories/

Page 2	Contents
Page 3	Editorial, Hilary Boone
Page 4	Message from Our Chair, Simon Parritt
Page 5	Your New Administration Officer, Toni Dunlop
Page 6	Osteoporosis and Post Polio Syndrome, Zsuzsanna Snarey
Page 7	Anne Wood (25.02.1945 – 18.04.2019)
Page 8 – 9	Aspects of Muscle Compensatory Processes and Physical Activity in Survivors of Polio, Gunnar Grimby, Professor of Rehabilitation Medicine, Goteborg University, Sweden
Page 10 – 13	How you found staying strong all the time is difficult especially when you are dealing with the many different organisations and departments whilst trying to manage your Post-Polio lives? Hilary Boone
Page 14 – 15	Not Walking My Talk! A Cautionary Tale! Vicki McKenna
Page 16	Letter to The Rt Hon Frank Field MP, Chair, Motability Select Committee from Caroline Gordon-Wilson
Page 17	Two items from ppn – Post Polio News, Chris Salter
Page 18	Post Polio Syndrome Exists (repeated every issue)Polio Survivors Network believes the following two articles are important as they have been well accepted by many NHS Health Professionals:• Patient.co.uk article on Post-Polio Syndrome• Polio Patients and Surgery Information for Health Professionals(English version from PTU, Denmark)
Page 19	Contact details
Back Page	Post Polio Matters… because “We are Still Here”WOW VoicesVal Scriveners’ Photo Cards for sale to raise funds for Polio Survivors Network.

Editorial by Hilary Boone

The daily temperatures have been up and down like a yoyo. 38 degrees for a few days in July [nearly the hottest recorded in the UK] and now it is August and around 20 for the week. Thunder storms, flooding and the awful worry the folks in Whalley Bridge had having to move out until the damaged dam was declared safe.

Mick Harper, Chair of Lincoln and East Midlands British Polio Fellowship group [and PSN member] has been chartering a boat from Southampton Docks for a day’s cruise to raise money for charities in that area for over 20 years now. Since moving to Lincolnshire he has also arranged a coach to take local folks to the area for a long weekend. Richard and I decided, even though it was a lot to manage in four days, that this year we would join. Along with dual member Caroline Gordon Wilson we were picked up by wheelchair accessible coach in the bus stop layby near our home. Off we set via south Lincoln to pick up John and then via Leicester and Northampton to the Hilton Doubletree Hotel at Reading. Saturday saw us cruising through many locks on the River Thames to Henley-on-Thames and Sunday, Richard our excellent coach driver, drove us to Southampton Docks where we boarded the Ocean Scene for a long trip to West Cowes on the Isle of Wight and then Portsmouth Docks and back. We saw so many different vessels including other ferries, cruise ships, military ships, HMS Warrior, HMS Victory, canoes, power boats, yachts including one that flew and best of all the Queen Mary 2 passed us en route for seven nights in the Fjords with ‘hello’ sirens passing between our two vessels. Next day home on the coach, totally exhausted but it was fun. Some photos on back page.

However, there were consequences of using up too much of the daily allowance of energy tokens [10 a day, 70 a week] on those four days. The first two days at home were spent snoozing in the riser recliner almost all day except for getting the already prepared meals from the fridge and eaten. The next two days we managed a little more and by the weekend were back to ten tokens a day. For me there was another consequence. When visiting our Neurofunctional Chiropractor, Dr. Darren Barnes-Heath I said I was having “a little problem with my left arm, just biceps area”. I then continued without realising to say “and shoulder and elbow and below the first finger of my hand and taking paracetamol and using Bio-Freeze pain gel”. Darren said ‘So a bit more than just your biceps area then?’ He started to assess my arms and upper body and asked ‘So tell me how much and what did you overdo from normal on this trip?’

I thought about it and was surprised how much there was to tell about the extra strain on my arms and shoulders from having to push up to get my body over my knees to stand. Getting up from coach seats was not easy, a couple of times impossible so I crawled to the front of the coach to go down the steps sitting on my bottom. I worked a way to do it but not until the last day. Then there were all the disabled toilets with bowls and rails at different heights. Then the chairs in restaurants/cafés where, to start with, I transferred to a chair [too low and no arms] so decided it was best to stay on my scooter seat. Due to the deep tides and ramp angles on the Ocean Scene, Richard had to use his manual chair and I used my new rollator/wheelchair. I ended up having to sit on this as the other seats available were too low by a couple of inches for me.

Darren treated me and gave me some gentle exercises to do in our hot tub and the pain is less. Darren pointed out that I had not thought about the difference in walking/getting up wearing my two new blue Rocker orthoses and shoes compared to my old single AFO and trainers. When I get home my shoes feel like diving boots so I take them off and wear socks with rubber non slip bits as I prefer no shoe weight and being able to feel the floor. There is also an increase in height with my new orthoses and shoes so I am having to push myself a tiny bit further up to get my body over my knees to stand up. Doing this over and over again across four days meant my muscles were constantly used more than usual. I need to think about what other equipment I need to take on trips out to make life less painful. I need a booster seat [LOL] for seats that are too low and for toilets that are too low a toilet raiser. Maybe I can work out how to combine the two and make a zip on padded cover with handle for carrying [I will patent if it works] ☺ Any other ideas gratefully received.

Be Wise. Polio Survivors is it time to tell it like it really is? Read article on page 10. I would love to hear your views/comments to share in our next issue.

MESSAGE FROM OUR CHAIR

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc (Hon), BA Chartered Psychologist. HCPC Registered Counselling Psychologist

Chair Polio Survivors Network simon.parritt@poliosurvivorsnetwork.org.uk

Another Year Older

As I approach my ‘three score years and ten’ I am on that rollercoaster of weakening muscles and reduced function that PPS brings on so many of us, over and above what age does to all people. I have always known that this day would arrive, unlike I suspect, many of you who probably bought the myth of ‘normal’ future life into old age. I recall some 20 years ago travelling to an exhibition at the V&A in London, travelling on my own, no wheelchair, no aids and no freedom pass. I remember thinking at the time, I must enjoy this as it may not last and this could be the last time I am this independent.

This weekend I spent my birthday with my wife, Alexa, staying in London and, amongst other events, again went to the V&A to see the renaissance rooms, which by the way were a delight and a taste of Italy and one of my favourite cities, Florence. It struck me how different it was this time, I am now mostly a wheelchair user, I have to check access, use accessible taxis, indeed even dropping in for a coffee or a meal somewhere I am confronted with endless barriers, both physical and attitudinal. I won’t go into the state of the pavements, particularly off the main streets and the poor state of so called dropped curbs the whole experience is bone shaking.

Service with a Smile … or not?

All the above is of course par for the course as a disabled person, but there is another aspect that is particularly annoying. That is the attitude to my wife, who I rely on for so much of my access to living an inclusive life. I wonder if others meet this problem also. On the rare occasions that I travel alone, at least some people and officials help with cases, or moving me up difficult areas or other physical barriers. However, if I am with my wife, I am left to get on with it, or rather she is. Maybe there is an assumption that she is my paid PA or carer and so no one needs to offer any help to her, or me! It is all her ‘JOB”. This extends to taxi drivers booked for disabled access, hotel staff, restaurants, etc. At airports she is often left struggling with the cases and dealing with me, or they offer to push me whilst my diminutive wife is left carrying my breathing equipment and several bags and cases like some pack horse. It does nothing to enable me to feel included and live a good life if my partner is treated as some kind of slave.

Access versus Attitude

Sadly, this maybe more true of the UK as my experience in Italy and Spain is different in general. In many countries access facilities may not be so good, and there might even be an older charity attitude of ‘poor you’. However, it does mean that everyday people are more actively wiling to just help. ‘There but for the grace of God go I’ may have some part of this different culture. I also wonder if this reveals an attitude in the UK of unconscious jealousy or irritation with us. The state gives you all these benefits and access to parking and special help, so we don’t have to help on a personal day to day basis.

Have we thrown out the baby with the bath water when we think we can subcontract and professionalise compassion and care, and in doing so abdicate our humanity.

© Polio Survivors Network – Volume 9, Issue 10/12 [106] AUGUST	Page 5
PLEASE SHARE EXPERIENCES OF YOUR POLIO LIFE Tell us about the solutions you have found that work for you Tell us about the issues you have managing your post-polio lifeHelp us build of possible solutions to publish in our newsletterNEXT ISSUE – Deadline October 14th 2019

TONI DUNLOP – YOUR NEW ADMINISTRATION OFFICER

As some of you may already know, my name is Toni Dunlop and I have been appointed as an Administrator (part time) for Polio Survivors Network. I have also been appointed as Administrator and Coordinator for the Lincolnshire Neurological Alliance (part time) which certainly meshes well with this role as it is an umbrella organisation for individuals and support groups of people with neurological conditions.

Firstly I would like to thank you very much for having me here. I will be completely honest with you all – I didn’t know post polio syndrome existed until earlier this year when I was researching the condition for my interview. I guess I am typical of many (including professionals) that you have no doubt all come in to contact with over the years. I am keen to learn more about the challenges and successes that polio survivors face.

In the short time I have been with Polio Survivors Network I have been constantly amazed at the resilience that polio survivors show day to day. I am also distressed by some of the situations I have heard and seen that some of you face due to lack of support or service from professional organisations – you are already dealing with so much and this unnecessary stress does not help anyone. I’ve also been heartened by the sense of humour many of you display and the ‘not going to let anything stop me’ attitude that keeps you fighting another day. I am full of admiration of the resilience you continue to show.

Before working for Polio Survivors Network I worked in the NHS (at United Lincolnshire Hospitals NHS Trust) for around 10 years. Working in complaints was my first NHS role which was both challenging, distressing at times and very rewarding. Building up a rapport with patients and their families was very important to me and I received thank you cards for my efforts even when a satisfying resolution for the patient or family wasn’t always possible. This role gave me a real insight into the ripple effects of poor communication, cancelled appointments and poor attitude of staff. Oftentimes patients were desperate just to ensure their experience wasn’t repeated, that no one else would go through what they did.

After a while I was asked to move to risk management as the incident officer. This was a role which included the investigation of never events and serious incidents. My people skills and tact were certainly enhanced during this time! I was then promoted to system administrator and later left this role to work at a local university in the digital services team where I enhanced my technological skills – it was great to be working with students too. Prior to working in the NHS I worked in a civilian role for the police force. I was part of the CRB (now DBS) disclosure team. It was a fascinating role and I quickly had to become very familiar with data protection and red tape!

I am a family lady with a huge weak spot for anything Italian! I fell in love with Tuscany when I went on my honeymoon in 2001. La dolce vita! I’m a complete foodie and love to cook, new cuisines and cultures fascinate me.

I certainly hope that I can use my skills and enthusiasm to support you and the Polio Survivors Network in the coming months. I look forward to getting to know you. Please feel free to drop me an email to psnadmin@poliosurvivorsnetwork.org.uk

Osteoporosis and Post Polio Syndrome By Zsuzsanna Snarey

Most of us who had polio when we were young are now having problems with mobility. As we get older and walk less and less, our bones begin to get weaker and more porous because bones need to be stressed by carrying weight to keep their strength. Those who walk less are more at risk of falling and breaking a bone. This is not a trivial matter. If you break your “good” hip or fracture an arm that you depend on to assist in walking with sticks, crutches, or to propel a wheelchair, or for transferring, it makes a tremendous impact on your lives and your independence. It is important to get persistent spinal pain checked out because it could be a sign of a vertebral fracture and if that is the case, you do want to get the opinion of a professional.

Bones are made mainly of calcium which is found in milk, cheese, and green vegetables, almonds, sesame seeds, sardines, dried fruit, pulses, tofu and fortified foods but in order to be absorbed successfully vitamin D is also needed. This is made in the skin and a sufficient amount of vitamin D can be gained by exposing face and hands to sunlight for just 15 minutes a day. It also can be found in oily fish, like herring, salmon and mackerel and also in eggs. 1000 to 1500 mg of calcium is recommended together with 400 to 800 units of vitamin D. The female hormone oestrogen also protects the bones but it declines after the menopause resulting in loss of bone density. This can show in loss of height and a dowagers hump. Hormone replacement for women (oestrogen with or without progesterone) can slow bone loss, preserve bone strength, and decrease fractures by approximately 50%. Unfortunately, it is not available for women who have had breast or uterine cancer. A new drug, Raloxifene (Evista), can be used for women who have had breast or uterine cancer or for those at high risk for these forms of cancer. Women are more at risk for osteoporosis than men.

It is important to ask your doctor for a Dexa scan to establish the health and strength of your bones. If your bone density is less than it should be you could have osteopenia or if it is more serious osteoporosis. The results indicating a risk of fracture are expressed as a T-score in negative numbers (comparing it to a healthy young person) and a Z-score (comparing it to an average person of the same age). T score of -1 to -2.5 is osteopenia; T score of -2.5 or less represents osteoporosis. Bone strengthening medication should be prescribed together with calcium tablets combined with vitamin D such as AdCal. The most commonly prescribed medication is Alendronic Acid, taken once a week with a large glass of water half an hour before breakfast. It is important to stay upright and not lie down in bed afterwards. An alternative is Zolendronic acid by infusion once a year. There are other newer treatments also available.

You could ask your doctor about a referral to a physiotherapist for ‘gait training’ and ‘fall prevention’. Every day try and spend a few minutes on balance exercises at home. If you do not fall you are less likely to suffer a fracture, but for many of us falling is a fact of life. It is a good idea to stand up for a few minutes every half hour and not sit for too long in front of the TV or the computer. Tai Chi is excellent for improving balance and bone strength but not an option for the less able. Exercise is definitely an area that should require input from a polio specialist who understands PPS, so you do not overuse or overstress extremities that have already been weakened by polio. Single action manual testing can miss the fact that you can only repeat the action a few times or hold the action for a few seconds before the muscles weaken. Correct assessment is essential so that you do not overuse or overstress muscles already weakened by polio. Exercises can be done to your level of activity by stopping before pain and fatigue sets in and then resting to allow the muscles to recover. However, you may have unaffected or stronger muscles that can be safely used for exercise.

Editors Note: ‘gait training’ and ‘fall prevention’

Referring to the article about how we do our actions of daily living. Please ensure that you tell any therapist advising you how you walk, get up from dining chairs, the floor etc, demonstrating if possible. Many times polio survivors have experienced being told they are not doing the action the proper way, e.g. falls adviser at a major health event and a therapist at a neuro condition meeting demonstrating to me this is the way you should be getting up from the floor.’ Finding it difficult to understand when I explained that I have polio damaged muscles that will not allow me to do it that way. I had to demonstrate before I was believed.

Anne Wood (25.02.1945 – 18.04.2019)

Long-time member of the British Polio Fellowship and the Lincolnshire Post-Polio Network [renamed Polio Survivors Network some years ago], Anne Wood, passed away unexpectedly at home at Easter. She was a multi-talented lady, but what follows is mainly taken from an autobiographical account that Anne wrote in 2011 about her burning passion in life – singing.

Anne started singing at school when she learned the descant and tenor recorder and piano and joined the madrigal group, before studying GCE O level music. Music and singing continued to play a large part in her life for the next fifty plus years, including teaching piano and recorder. When she left school, she and a friend produced a couple of variety shows in aid of charity, with acts including dancers, a harmonica player and an accordion band. She also recalled a young ventriloquist named Keith Harris auditioning for one of their shows with Orville the Duck.

Meeting guitarist and singer, Malcolm, at a musical party, they married a year later. They joined Southwick Operatic Society and formed a harmony folk trio, Timbrey Fayre, with a fellow guitarist and singer. Anne added to the musical mix with a small piano accordion, tambourine, maracas, bamboo pipe and recorder. Weekly rehearsals into the small hours were fortified with coffee, beer, laughter and fun. They arranged all their songs in 3 parts and wrote a few numbers of their own.

Timbrey Fayre entered and won the Worthing Talent Contest. Well known band leader, Ken Lyon, offered them a spot on the weekly variety show “Tuesday at the Dome” in Brighton. Anne found it daunting to sing in a 2,000 seat theatre, but enjoyed it nonetheless. Over a number of years they did paid gigs at Masonic dinner dances, clubs, parties and shows. Timbrey Fayre recorded 3 programmes for Radio Brighton, and joined the Radio Brighton team for the Local Radio Station’s Talent Contest in Manchester, judged by comic, Mike Yarwood, and tenor, Bruce Trent, and broadcast on Radios 1 and 2. Radio Brighton also asked them to record a Boxing Day concert with popular singer Jake Thackray and local folk singer Miles Wooto.

Anne was a founder member of Shoreham Light Opera Company, their first production being an opera “Perseus and Andromeda”, written by and starring Patrick Moore, the astronomer. Anne played the soprano lead, Princess Zara, in “Utopia Ltd” by Gilbert and Sullivan, soprano lead, Fiona, in “Brigadoon”, and several other roles. Anne mostly gave up stage work after this, partly because she was looking after her young daughter, but also because she found herself getting too tired to tread the boards. She enjoyed many more years of singing via Shoreham Oratorio Choir, Brighton Consort, and Portslade Community Choir, including trips abroad to perform.

By now, Anne had been diagnosed with Post-Polio Syndrome and was walking with sticks. Sadly, by 2011 PPS finally claimed Anne’s angelic voice and she had to say goodbye to her days as a soloist, moving into the chorus. She was able to enjoy singing holidays in Taunton and Marlborough until she started to need her electric wheelchair. After that she sang with the Shoreham Singers-by-Sea, run by jazz musician, Herbie Flowers, for a few more years before retiring completely.

Anne leaves behind daughter, Becky, and granddaughters, Isobel aged 5 and Grace aged 1. A brave and compassionate lady, she leaves a gaping void within her family.

Editors Note: Anne was a member from the very early years of our Charity. She was also a member of some of the Post Polio Support Groups via Facebook and you only have to look at the sympathy messages to see how many polio survivors across the world she knew. She would keep us all updated with how she and her family were. Would tell us about medical appointments and somehow, even though some of the issues were serious and should not be happening, manage to make us laugh about those ‘not so useful ones’. She was always one of the first to reply with a supporting message to anyone having their own issues. Her family’s favourite picture of Anne is on the back page.

ASPECTS of MUSCLE COMPENSATORY PROCESSES and PHYSICAL ACTIVITY in the Survivors of Polio.

Gunnar Grimby, Professor of Rehabilitation Medicine, Goteborg University, Goteborg, Sweden

Reprinted with Permission from International Polio Network News, [now known as Post-Polio Health International] St. Louis, Missouri, USA

POLIO NETWORK NEWS – Winter 2000, Vol 16. 1

N.B. Readers please note the date about polio muscles as a lead into pages 11 to 16.

With the increasing understanding of the factors causing new symptoms in polio survivors comes an increasing awareness of the benefits and risks of physical exercise and training. Some training studies have been reported lately in the literature that can be of help in recommending appropriate training regimes. An important aspect is that different muscles in different persons can be very differently affected by polio: some may be atrophied to the point where no exercise or training is possible; some may be moderately weak but in an unstable state showing progressive weakness and a risk for overuse; others may be moderately weak but stable to where some training might be of value; and in some muscles, compensation by re-innervation has resulted in “nearly normal” or “normal” muscle function, but there might be risk for disuse. It is, thus, important to individualize the training advice, not only among individuals but also for different muscle groups of a particular individual.

In practice, this is a great challenge to the physiotherapist, and other professionals who design the training programs, and requires a detailed analysis of the muscle function both with clinical testing and laboratory investigation using dynamometer measurements and electromyography. Our experience is that by having detailed information, the polio survivor has a better opportunity to adopt a daily physical activity pattern that provides the appropriate amount and type of exercise but without overuse and fatigue.

Does too much Daily Physical Activity and Exercise Training cause Acute and/or Persistent Damage of Polio-Affected Muscles.

To answer this question, detailed knowledge about the compensatory processes in the polio-affected muscles is necessary. Compensation occurs through re-innervation by adjacent nerve fibers to muscle fibers (muscle cells), which have lost their innervation by the death of nerve cells in the acute polio phase as well as later on. The polio-affected muscles otherwise would have atrophied. This compensatory mechanism seems to be very powerful: a nerve cell can re-innervate 4-5 times the normal number of muscle fibers and, in extreme cases, even more than 10 times. The other compensatory mechanism is hypertrophy of the muscle fibers, most likely caused by extreme use of the weak muscle that is still strong enough to be used in daily activities. Even to rise from a chair or walk on a flat surface may give a near maximal load and by that be a stimulus for increase in size of muscle fibers, but not in number, just as in very heavy resistance training. Muscle fibers may then reach a size double or three times the normal size. Thus, whereas physical activity does not seem to be a prerequisite for reinnervation, it is for the increase of muscle fiber size.

Is there a Danger in Having Large Motor Units (that is, too many muscle fibers innervated from the same nerve cell) and too Large Muscle Fibers?

Our recent follow-up studies over eight years (Grimby et al, 1998) indicate that very large motor units, more than 20 times normal, with around 10 times the normal number of muscle fibers, may have problems. Either they may lose some of their muscle fibers and thin out due to defective neuromuscular connections, or they may just die easier. We have no systematic information available whether physical activity and overuse could bring about such a loss of muscle fibers or nerve cells. A defective neuromuscular transmission can be identified in some motor units, but we have not found in our studies an indication that this is a major factor for muscle weakness. Whether it can contribute to muscle fatigue is still under debate. The other compensatory mechanism – hypertrophy (increase in size) of muscle fibers – has a positive effect on the maintenance of strength, but it could be a negative for endurance, as capillarization and the aerobic metabolic system of the muscle cell (mitochondria) do not increase in response to the increase in size. Indeed, such large muscle fibers may be less resistant to overuse.

We know, in fact, very little about the risk of overuse causing persistent muscle damage. What we know now is the risk for long-lasting fatigue after too strenuous exercise in polio affected muscles. They need a longer recovery period than “normal” muscles, which must be taken into account when designing training programs and adjusting daily activities. In training studies, we have the experience that with long enough rest periods, which could be days or weeks after a too strenuous bout of exercise (Agre et al, 1998), full

recovery will occur. Thus, there is a risk for overuse but, with proper attention to the fatiguing symptoms, the function will recover after the exertion. The risk occurs when the polio survivor does not rest enough, and his/her muscles remain in a constant condition of overload, with its negative effects on function. Although this is not easy to prove scientifically and experimental studies would be unethical, we must rely on a successive collection of data to understand the balance between the pros and cons of physical activity. My personal view is that an approach of trial and error under professional monitoring will yield in practical terms what is a beneficial level of physical activity and what could be deleterious for a specific individual.

The Literature now Documents a Number of Training Studies.

Of prime importance is separating resistance from endurance training programs. A person with weak muscles may use them close to their maximum only for a short period of time, e.g., climbing stairs. Thus, there will be no time for adaptation to endurance. By reducing the intensity, such as walking slower and taking short breaks for other types of activity, both resistance and endurance training at an appropriate level may be achieved. Another way is to choose a medium where the load can be more individualized between muscle groups as in pool training. In a study with a control group at our polio clinic, increased general endurance and less pain in daily life was demonstrated in the group with pool training compared to the group that received advice about their physical activity. There was no deterioration of function after the pool training (Willen et al, 1999). Other training studies indicate the possibility of improving the general endurance of polio persons by using individual training programs, as on a bicycle ergometer, or group training on the floor with combined endurance and submaximal resistance training with music (Emstoff et al, 1996). In general, it would be of value to encourage endurance types of programs with proper intensity and the possibility of individualizing the load as in pool training, giving proper time for rest between the exercises. The role of resistance training for polio muscles is more controversial. However, short-term resistance training at high or maximal intensity has been demonstrated to give an increase of muscle strength in moderately affected muscles, measuring more than 3 on the manual muscle testing scale (Einarsson, 199 1). Such an increase in strength seems to be maintained, probably by adaptation of the physical activity level in daily life, and could be beneficial and allow a broader type of exercises with relatively less effort. Such a program did not result in any negative effects or evidence of muscle damage when properly supervised. Also low intensity strength training can improve muscle performance and reduce the experience of fatigue. There was no change in serum creatine kinase after a 12- week musclestrengthening program, which would have indicated muscle damage (Agre et al, 1997).

To Learn the Appropriate Level of Physical Activity to Avoid Unnecessary Overload on the One Hand and Disuse on the Other is Important for Maintaining Optimal Physical Function in PolioAffected Muscles.

As important is to avoid pain, it being both a limiting factor for physical performance and an indication of overload that could be on muscles as well as joints and other tissue structures. The experience of pain is evidently closely related to physical activity. Individuals who spontaneously chose a walking speed close to their maximum speed were more prone to experience pain in their daily life (Willen et al, 1998). The results of that study indicated also that those who were less affected by muscle weakness experienced more pain than individuals with weaker muscles, and they might, thus, have a pattern of daily activity that was too strenuous. Advice and adaptation of the daily physical activity to avoid pain is an important feature in the post polio management.

REFERENCES.

Agre, J.C., Rodriguez, A.A., & Franke, T.M. (1998). Subjective recovery time after exhausting muscular activity in post polio and control subjects American Journal of Physical Medicine & Rehabilitation, 77,140-144.

Agre, J.C., Rodriquez, A.A., & Todd, F.M. (1997). Strength, endurance and work capacity after muscle strengthening exercise in post polio subjects. Archives of Physical Medicine & Rehabilitation, 78,681-686.

Einarssson, G. (1991). Muscle conditioning in late poliomyelitis. Archives of Physical Medicine & Rehabilitation, 72,11-14.

Ernstoff, B., Wetterqvist, H., Kvist, H., & Grimby, G. (1996). The effects of endurance training on individuals with post-poliomyelitis. Archives of Physical Medicine & Rehabilitation, 77,843-848.

Grimby, G,, St. Alberg, E., Sandberg, A., & Stibrant Sunnerhagen, K. (1998). An 8 year longitudinal study of muscle strength, muscle fiber size, and dynamic electromyogram in individuals with late polio. Muscle Nerve, 21, 1428- 1437.

Willèn, C., & Grimby, G. (1 998). Pain, physical activity, and disability in individuals with late effects of polio. Archives of Physical Medicine &Rehabilitation, 79,915-91 9.

Willèn, C., Stibrant Sunnerhagen, K., & Grimby, G. (1999). Dynamic exercise in water in individuals with late polio. Manuscript submitted for publication. [Arch Phys Med Rehabil. 2001 Jan;82(1):66-72 ]

Page 10

How you found staying strong all the time is difficult especially when you are dealing with the many different organisations and departments whilst trying to manage your Post-Polio lives?I have helped many Polio Survivors and their families who have written/rung/emailed over 23 years. Richard and I have been having more and more issues over many months now. It is not easy sharing the following with all readers but I am doing this in the hope that it will help others.31 years ago I started to have unexplained new symptoms of weakness and functional decline that seven years later turned out to be Post Polio Syndrome. It was not long before I started having to complete forms to obtain benefits etc. Seeing it in black and white was not easy.Whilst we fully appreciate we have to complete forms. There are so many. Forms for benefits DLA/PIP, ESA, Blue Badges, council tax band reduction for disability, bin collection from where you keep them. Social Services and NHS Assessment forms to see if you qualify for any help. Financial assessment forms, carer’s assessment forms, maybe you need changes to your bathroom so more folks visit and Disabled Facility Grant forms, etc., all in ‘official speak’On Friday 26th July 2019 I received an email mentioning that the day before I had not been ‘on par’ at an event and it triggered me to sit back and think. They were right I had not been my normal self at that meeting. I was embarrassed and felt awful that I let myself down but why? Then it dawned on me… I had reached lower than rock bottom without realising it dealing with all this **** paperwork month after month and this was really a cry for help thankfully answered.For 24 years now I have attended many meetings with the NHS/Social Services to discuss their new proposals and paperwork to provide the user/carer point of view that the government say must be obtained. It is not easy going from a job with salary and retirement plans to having to live on benefits and cope with disability. Volunteering is our way of saying thank you for our benefits.I contacted a few of my peers who have also been giving up hours from their disabled lives for years taking part in these consultations and surveys. We did not want anyone else to go through the problems we had been going through and thought giving up our time would help improve services for all, users, carers and staff. Sadly we agreed that the procedures and forms that have to be completed have get worse and worse. The meaning of some paragraphs, rarely in plain English, are even misunderstood by some staff; take longer and longer to complete; adding unnecessary stress to our lives. A few years ago following one up and coming ‘new change’ it was agreed we could trial it before release. However, meetings just stopped and eventually we learned that the new system was live. Some of us had to sort out problems in the early days that might not have happened had we been given that promised trial. We reluctantly agreed that we have just been ‘Box Tickers’ so that the many organisations involved could ‘tick the box’ to say they had consulted. I now only go to meetings where there is a chance of a positive change.Agency staff that come into our homes are often restricted in what they can do. To manage our lives well and get the most for the funds we are allocated many of us employ our own staff but have to register as an employer with the Inland Revenue complying with all the Employment, Equality, Health and Safety Laws etc. I am sure many will suggest we could use the CAB or an Agency to help with all this work. Sadly the information still needs providing by us and the final documents produced by staff/assessors etc., all have to be checked for errors. Our experience is that it does not save much time/stress in the long run.Back to last Friday… I took a huge deep breath because I now realised that I needed to stop the downward spiral and tell ’them’ collectively that my husband and I need to live our restricted ability disabled lives more reasonably. My peers agreed with me that assessments and requests for help/equipment/medical help do not have to be as complicated and long drawn out for us andThe Postman delivers you a letter and you are happyThen you see that it is yet another form to fill in from yet another department asking many of the same questions….

the staff involved. Changes are needed now and with all sides raising the issues they see and coming up with ways to reduce the stress and costs dealing with things that do not work well. Sadly as I go through this for final check I can report that in the last week another four page document with little more than an hour to respond.

As I see it the major problems for Polio Survivors seeking help are:-.

1. Polio Survivors. Yes, us. We are such strong willed, determined, do not need any help thank you polio survivors because we have had to be for decades. We have gone to college, university, joined the forces, done all sort of physical jobs, brought up children, decorated, gardened, done all sorts of hobbies, sports, voluntary work. Tell us we could not do something and by heck we would prove to you that we could. When we start to have new difficulties we ignore them hoping they will go away. When we finally seek medical help and it is suggested that we do x, or start using y what do we answer ‘Oh, I am not there yet’. This includes me. In my third year of finding PPS I was at a rehabilitation appointment when the doctor asked me ‘Who wrote this article about pacing and resting and using equipment in your newsletter?’ I proudly told him it was me. He then looked over his glasses and said ‘Why are YOU not taking your own advice then?’ What could I say!

2. Colleges of Medicine gradually reduced the number of facts that they taught their students about polio following the success of the 1955 vaccine with reduction in cases. Twenty years ago as LPPN we were told that for doctors polio was a half hour lecture with leprosy. Is that enough time for health professionals to learn about how the polio virus affected our nerves and muscles, how we recovered, how we used the muscles we were left with to perform actions of daily living? They are also rarely taught about the later stage of Polio following 10 to 50 years of recovery of new pain, fatigue, and functional decline most commonly called Post-Polio Syndrome.

Items, I believe, show this lack of teaching enough information on polio:

• [1996 to me by a Neurologist] “Post-Polio Syndrome does not exist, I just read an article”.

February 1996 BMJ article ‘Study Throws Doubt on Post Polio’, the results of the fifth year of the

Mayo Clinic Study and….

• [2006] The Mayo Clinic Study went to 15 years in 2005 and my article ‘Polio Survivors Throw

Doubt on Study’ and ‘The Mayo Clinic haunts post polio patients again by Dr. Ruth Bridgens,

‘Mune data review’ by Dr. Mavis Mathieson, ‘Examining a Controversial PPS Publication by Dr.

M. Falconer and Prof E. Bollenbach and by Dr. Mary Westbrook ‘Inaccurate Mayo Clinic News Release Threatens Polio Survivors’ Wellbeing and Healthcare’; all demonstrated that their results and conclusions were not consistent with the polio population as a whole as stated.

•	[2000 Kent member] “Post Polio Syndrome, Oh I have just heard about this new disease”The facts were first medically recorded in 1875 by Carriere, Raymond, & Cornil and Lepine!

• [2009 A&E Lincoln] ‘Have you come from a 3rd world country, we don’t have polio in the UK’.

3. Lack of understanding of how our polio damaged muscles work. Most health professionals who do not regularly work with polio survivors often have no idea of the ways we use what muscle power we have to do what we can and what we call it.

3.1 A member was being got up for the first time following a female operation. She asked for her arm crutches to be passed to her and was told “you don’t need them we will support you, it says here on your admission sheet that you said you could walk” . She replied “ that is because since I recovered from waist down paralytic polio I have ‘walked’ by using my arm crutches and swinging my paralysed legs through. What else would you call that but walking?

3.2 A physio recently asked a member ‘your medical records state you are fully mobile with your calliper & arm crutches if you can’t move your legs then how can you walk?’

There appears no understanding that to ‘walk’ when you are wearing calliper/s, using a cane, arm or elbow crutches that you either raise your shoulder or lean to one side to lift the leg on that side off the ground to swing it through, ‘walking’ with arms, shoulders and upper back muscles.

Picking something up from the floor whether wearing callipers or not if you cannot bend your legs without collapsing then you have no option but to bend at the waist to reach down and back up again using your upper body. I have had to do this for 67 years. How about you?

Muscles are attached to bones by tendons that help them move. When a muscle contracts [bunches up], it gets shorter and so pulls on the bone it is attached to. When a muscle relaxes, it goes back to its normal size. Muscles can only pull and cannot push. Therefore muscles have to work in pairs to move a joint. One muscle will contract and pull a joint one way and another muscle will contract and pull it the other. When you want to move, electrical impulses come from the brain, down the spinal cord and are transmitted through the motor nerves to the muscles.

The Polio Virus if it progresses through to the nervous system kills motor nerves. The greater number of motor nerves killed in a muscle the less ability of that muscle.

The following diagram is taken from a PSN Presentation slide titled Pathophysiology and Diagnosis of Post-Polio Syndrome by Daria A Trojan and Neil R. Cashman, Department of Neurology and Neurosurgery, Montreal Neurological Institute and Hospital, McGill University Montreal, Quebec, Canada.

Normal No damage

Acute Polio You can see the middle nerve is dying off.

Recovery Shows those nerves that did not die were able to grow axonally sprouted roots that took over some of the orphaned muscle fibres. As the nerve supply to the muscle increased then the ability of that muscle increased.

Post-Polio Syndrome Shows one possible explanation of new weakness in that those axonally sprouted roots are dying off thought to be from overuse. Less nerve supply less ability.

HOW DO YOU use your polio damaged muscles to perform actions of daily living?

Polio Survivors are all different. There is no set pattern. We have varied muscle ability from paralysed [no ability] through various stages of weakness to possibly never damaged. If one muscle does not work/work well, we ‘ask’ another nearby muscle to assist us to do it our way.

To explain… At 5 years of age I had waist down paralysis, recovered well and learned to walk again. I retained some weakness on my left side from hip to knee and right side from knee to toes. I said ‘I had polio’ [past tense]. Just couple of examples.

1. Judo – if I bent my left knee more than three inches that leg would collapse so I had to do

judo with almost straight legs. In a competition my opponent only had to touch the back of

my knee and down I went. I managed to pass to the third Orange Belt but no further.

2. Life-saving – I had absolutely no propulsion from a life-saving leg kick so developed a

strong right leg sidestroke type kick that allowed me to complete the test in the required

time. I passed to Distinction Award and became a Pool Lifeguard, Swimming and LifeSaving Advanced Teacher and a Grade 1 Examiner, till 1988 when a fall kicked in PPS.

Richard at age six months also had waist down paralysis but did not recover as well as I did. At school he wore a half leg calliper for a few years and full leg calliper until he was 16 plus the wonderfully styled and coloured orthopaedic shoes.

Walking – His left leg paralysed, right leg weak and both ankles were fused. Age 16 he hated wearing the calliper so he tried walking without. With his left hand in the pocket of his trousers against his thigh he could stop his knee from collapsing. He threw the calliper away and with orthopaedic shoes and cane he walked like this until 1997 when he turned not realising there was a slope and fell. He decided time to go back to wearing a calliper. Sadly a few more falls and further damage to his shoulders meant he had to think seriously that a further fall could prevent

him being able to transfer using his arms. 3 years ago he decided to use his electric wheelchair full time.

My presentations since 2000, and mentioned in quite a few newsletters, are health professionals please DO NOT ask us “Can we do an action?” because we are unlikely to do more than proudly say ‘Yes’. Ask us HOW DO WE DO each action and now the picture in the mind of the health professional is likely to be the same. Just answering ‘Yes’ does not tell them how you do it.

Take the question ‘Can you get up a flight of stairs?’ Write down exactly how you go up and down a flight of stairs with and without carrying anything. How long does it take you and how many times a day do you do this?

Are you going up and down like non disabled folks?, or do you do any of the following:- Go one leg first each step

Stop once or twice for a short rest,

Use the bannister rail to help pull you up or steady you down,

Only do this once to come down in the morning and go back up again to bed,

Can you now carry anything at the same time up or down, e.g. Are you lifting the items up a few stairs at a time, Throwing the non breakable dirty washing, down the stairs, … Do you have to go down facing the stairs.

Does someone help you, or are you using a stair lift.

How many still go up a flight of stairs backwards step by step sitting on your bottom but still consider that answering “yes” to the question was correct?

Working in the kitchen. What do you have to do to prepare and cook food, get items out of a below counter fridge, do the washing up, laundry, taking out the rubbish etc.? I am sure you like me do not think about how you do each action you just do it, and that is your ’NORM’. Unless you explain to health, social services, benefits, personnel how they will have no idea. Go into your kitchen [or think about how] and write down some facts about each action. It is not easy seeing in black and white how you cannot do things as easily now; having to use aids and special equipment again or now for the first time etc. It seems like a downward step and for years we do not want to even think about this. The most often heard comment on this subject at PPS Groups is those who come back a few years later and say I wish I had listened when you told me before. I now use an [x] and life is so much easier to manage now.

Some ideas to think about. Do you hold on with either one or the other hand, do you lean against the work surfaces to use both hands. Do you put one hand on your knee to balance to reach down? Do you slide saucepans? Have you moved items to different places so they are more easily used? Have you bought special equipment? Have you had your kitchen adapted?

I have just remembered about fifteen years ago I was helping a lady from the Boston area complete a DLA application. I asked her, ‘Do you have any problem preparing vegetables?’ She answered ‘No’. I was really surprised as she had started our discussions telling me how her arms were not as strong now. I asked her again ‘Are you sure you don’t have any problems?’ She looked up at me and embarrassingly said ‘Oh, I don’t have a problem because my husband has done the vegetables for the last couple of years, I really will have to think about my answers.’

We have been so strong, so capable, never given in for decades. We know it is hard to accept that changes are taking place, that we now cannot do as much as we did before. It could be down to a combination of post-polio, age, other medical conditions, etc. It is hard to start using aids and equipment again or for the first time. Asking others for help when we have done years of helping others goes so against the grain. It is hard to pace and rest each activity but If we do we can do with less pain and fatigue, it just takes longer to do it. We have ten energy tokens a day and 70 a week [change to £] We have to work out how much each action costs using an average day. Using a diary put in the token amount you need to spend like dressing, getting meals/drinks, then fit in tokens for things you must do, e.g. medical appointments. Now you can see where if you got help and/or equipment there are tokens for doing things you really want to do.

It is time to tell it like it really is. Be wise and get the help and manage life more easily!

NOT WALKING MY TALK! A CAUTIONARY TALE!

By Vicki McKenna, B.A., Lic.Ac. Vickimckenna51@hotmail.co.uk

Author of A Balanced Way of Living. Practical and Holistic Strategies for Coping with Post Polio Syndrome, Available on Random Harvest.

http://www.postpolioinfo.com/randomharvestabout.php

Six weeks ago, as I felt a severe and crushing pain in my knee and sensed that my muscles had turned to mush I reminded myself of my own words; ”muscles often become weaker when overused by polio survivors and because of all this it makes no sense at all for us to do exercises that result in fatigue and exhaustion”. As Dr. Bruno says: ‘Feeling the burn means that nerves are burning out.’” At that moment, six weeks ago it was clear that I had stopped walking my talk and instead had been over exercising my muscles and now had to reap the consequences of overuse.

I had developed Post Polio Syndrome (PPS) symptoms in the 1990s and in 1998 I started working on my book –”A BALANCED WAY OF LIVING; Practical and Holistic Strategies for Coping with Post Polio Syndrome”. Through the book I was able to share all I had gleaned from my years of treating patients using traditional acupuncture and other Daoist healing techniques. For the next 21 years I followed the strategies outlined in my own book, and in Dr Bruno’s marvellous book –“The Polio Paradox”. Through the years I have been careful not to overdo, I have kept walking to a minimum by using my scooter out of doors, exercised with gentle swimming and practising Chi Gung and generally have taken good care to ensure my polio damaged neurons stayed as well as they could. I avoided stairs, never walked more than a few yards to my car or my mobility scooter and I have only had one bad fall where I broke my polio leg in 2011 slipping on a blob of one of my favourite food groups –mayonnaise! And all that caution paid off – I slowed down the rate of PPS and up to this summer (2019) I was still walking with just a calliper (worn since I was a small child) and one elbow crutch for added support.

You know that feeling of freedom when you go away on holiday? Its the anticipation of fun and endless possibilities opening up ahead and as I walked out of my front door and down my front steps, manoeuvred my scooter into the back of my car and took my place behind the steering wheel I was excited and energised to be embarking on a several hundred mile journey to Wales to spend time with family I don’t see that often. Little did I know as I took my seat behind the wheel that this would be the last time, for the foreseeable future that I would make such an easy and independent departure from my home.

That sense of freedom – that unhooking from the normal routine set me free to take what we refer to in Scotland as a “mad turn” and I felt invincible. Stairs – no problem, on my feet for longer than in years, walking longer distances than I had done in ages – bring it on! For a week I pushed my limits, reverted to all the polio survivor Type A pathology I had denounced and seemed to get away with it. And then… on the last night of my holiday I knew the staircase I faced was a mistake but staggered up it anyway. My good leg felt wobbly but I was sure that with rest it would recover. How wrong I was!

The next morning I woke up and swung my good leg out of bed and as my foot went down onto the floor my knee straight away felt weird. For some years I have felt a slight obstruction in that knee – perhaps some loose meniscus but it never turned into a problem so I ignored it. Now it felt as if my knee was jammed and also very very weak. To my horror I realised it had swollen like a balloon and once I tried walking the pain was excruciating. A nine hour drive home to Scotland followed, we scrapped our plan to stop half way overnight and pressed on – I just wanted to get home! The next day with my knee now three times its normal size and massively in pain we visited the Accident and Emergency at our local hospital here in Glasgow. To cut this long story short it seems I had pushed my good leg too far – I had overused it and now fatigued, exhausted

and weakened it had become all too easy to sprain it. Rest, ice, compression and elevation followed but unable to straighten it or put weight on it I had to take to wheels full time indoors and outside. Not that I go out much but more of that later!

As ever Doctors have been slightly mystified – they tell me its no big deal – 6 to 8 weeks and all will be well — meanwhile “crack on” as one orthopaedic specialist said. With no real experience of polio and its long term effects this generation of medics don’t really get it — there is an expectation that I should be able to walk using my other leg. I then explain I can’t as its paralysed from polio. They shrug and try to look sympathetic….I get the feeling they also fail to understand that the polio affected muscles of my overused “good” leg wont spring back into action in the way a “normal” leg might after a sprain.

Six weeks on and I am finally able to get out of my chair and put some weight on my “good” leg- – walking with 2 elbow crutches and weight bearing also on my calliper leg – the latter no doubt stunned to find itself with a degree of responsibility previously unknown to it! The things I miss the most these days are – walking (obviously), swimming and getting out of my home easily – I now rely on my kindly husband to push my chair into the lift (elevator), then he sets up the ramps to manoeuvre me down the steps of the apartment block to the car park. I then get pushed up the ramp of my van to sit in the back like the Queen of Sheba and get carted off and later brought home. I haven’t yet practised my new walking mode out of doors – no risk taking for me! Getting out is such a hassle (and all the pushing is affecting my husband’s back) that I now rarely bother to venture forth. And I am not after your sympathy here! I am just telling you this tale to share and to warn other polio survivors – many of whom doubtless don’t need a warning as they have already experienced this situation of overuse causing the loss of function in a previously fairly OK limb.

One week was all it took to change my life around. I have grieved for the loss of my leg, for the loss of a great slice of independence, I have felt angry at myself for being so careless with my one precious limb but ultimately I have dusted myself down as we polio survivors do and got on with adapting. Most polio survivors contracted polio as children and therefore have grown up adapting from an early age to disability. It is harder to adapt at my age of 67 than when I was a young energetic child, but adapt I will.

And as we all know there are blessings! So much support from my marvellous husband, my wonderful daughters, son in laws and grandchildren, extended family, my dear friends and of course my lovely polio community (especially as ever Dr Dick Bruno!) who have given tons of advice and good wishes and a big thanks to Helene for the loan of her power chair!

Acupuncture, aromatherapy oils, visualisation, Chinese linaments, – all these things are helping to heal my poor old worn out knee and leg. And I am still childminding my gorgeous grandkids and seeing my patients to give them acupuncture. It is clear that for me caring for others nourishes my spirit – it gives me a sense of purpose. Also I have discovered that, although challenging, my transition to a wheel based life is suiting my body rather than pushing myself to walk as I previously did. I now feel much more rested using wheels indoors. I realise how much I have resisted using them – it felt like giving in, giving up. Turns out giving in is actually an acceptance and a surrendering to the reality of what is and cultivating that attitude has been a real turning point. And I feel so much better wheeling most of the day rather than pushing to keep walking. If I can just walk enough to get into my beloved car I will be very content!

Editors Note: Vicki’s story appeared on a Facebook Group list as I was preparing this Newsletter. I often wonder if readers think that maybe the problems that Richard and I have that I write about in our Newsletters, they are not going to experience. What PPS Group leaders call the ‘I am not there yet’ replies. Therefore I asked Vicki permission to add this to this newsletter, as in fact did other newsletter editors around the world. We know how hard it is to make changes that to you look and feel like you are giving in. We will tell you that as we have made changes to using equipment and making changes to our home and settled into a new routine, we can report less pain and fatigue and in fact doing more of what we really enjoy.

Member Caroline Gordon-Wilson would like members to read and comment

on the letter she wrote to The Rt Hon Frank Field MP, Chair, Motability Select Committee, House of Commons, London SW1A OAA – 25th January 2019

Having followed the investigation into Motability Operations first reported in The Daily Mail, I watched the recent Select Committee meeting with great interest. I feel I need to write to you from the opposite side of the coin as a Motability customer because there are some comments I would like to make.

I have been disabled since the age of six and have worked all my life until circumstances meant I could no longer buy my own car and get it adapted at which time I gratefully turned to the Motability scheme in order to maintain my independence and there is no doubt that it is a wonderful scheme. However, I was horrified to read of the obscene salaries being paid to the senior management and the size of the company’s reserves. It appeared to me that none of the reasons given at the meeting regarding these issues have been addressed by the Motability management. I heard a lot of waffle, prevarication and avoidance of the direct questions the management was being asked but no clear answers from them. It seems to me they have been amassing money at disabled people’s expense and would still be doing so it this had not been exposed by investigative journalism. Among the self-congratulations it was mentioned that customers now did not have to pay for certain adaptations and a lot less for the more expensive adaptations. This is true but despite this they are still awash with money.

I now live on a low income and would very much like to receive some of my DLA but it all goes to Motability. We as individuals sign a contract with Motability for our DLA to be paid to them in return for a car but the DLA goes up each year during the life of that contact but they still take all of it – it should be a sum set at the start and any increases year on year should come back to us especially as it was stated that the cost of vehicles to Motability have decreased. I was pleased to hear that customers whose cars are returned in good condition will now receive £500 instead of £250 but this will only offset whatever the customer pays for the next one.

Catherine McKinnell MP twice suggested that we were being charged too much of our allowance in the first place. This was ignored. Would it not be a gesture of goodwill to its customers if Motability gave us some of our allowance back as a lump sum payment? I understand this is government money in the beginning but once it has been awarded to us it becomes our money to use as necessary.

Although I respect Lord Sterling for instigating the scheme I felt his remark that individuals do not have to have a car they can “go to the cinema or something” rather condescending. We do not get DLA or PIP to go to the cinema (if we could get there and access it anyway) we are awarded this payment to help us get around however we choose to do that. Just because some of us choose to have a car does not give them the automatic right to take all our allowance. It is true that there is a small range of cars where not all the allowance is taken but these are not suitable for everyone who have special needs when choosing a car such as how difficult it is getting in and out of, is there space for a wheelchair, is it automatic (these can cost more), etc.

I am Secretary of the local branch of a disabled charity and without the car I could not do my job of going to meetings and enjoying outings as well as taking others who either do not drive or have given up and who rely on me to participate in branch activities.

While these executives are sitting in their smart apartments overlooking the Thames I wonder if they ever give a thought to those disabled adults and children who are funding their lifestyle. I think not.

Thank you for taking up the reins and looking into this matter and asking for further information from the management and perhaps some clear answers as to how this situation has arisen in the first instance. I will await the results with interest and, hopefully, some positive changes that will help their customers.

Yours sincerely, Caroline Gordon-Wilson. Member of PSN and Secretary Lincoln and East Midlands Branch of the British Polio Fellowship. Email: carolinegordonwilson@gmail.com

PS: Customers are getting £500 back if they return the car in good condition and customers are being offered a manual wheelchair when they lease a Motability car. This is little compensation for the £millions amassed by Motability Operations. The CEO has resigned (but not until next year, no doubt with a huge pay-off, but to date the DWP has still not laid out a new set of rules under which Motability needs to operate in the future.

India: KTR helps polio-stricken boy stand on his feet | Telangana Today. [14th Aug 2019 11:40 pm]

In January this year, TRS working president takes up case with officials of Chief Minister’s Office to mobilise funds from Chief Minister’s Relief Fund. Assures nine-year-old Sairam and his family of complete support for his recovery.

Hyderabad: A small gesture by TRS working president KT Rama Rao helped a nine-year-old boy from Godavarikhani to stand on his legs, literally.

Sairam is not only able to walk on his own, but is also looking forward to play with his friends. Unable to walk due to polio, Sairam, who comes from a poor family and a class IV student, depended on his family for his daily chores.

But, in January this year, Ramagundam MLA Korukanti Chander took Sairam to Rama Rao in Hyderabad and sought the latter’s help to perform a surgery.

The TRS working president responded promptly and took up the case with officials of the Chief Minister’s Office to mobilise funds from the Chief Minister’s Relief Fund (CMRF). He entrusted party leader K Srinivas Yadav to provide all necessary support to get the surgeries done for full recovery of the boy.

About eight months later, on Wednesday, Sairam along with his parents, Rajamallu and Laxmi, and Ramagundam MLA Chander returned to meet Rama Rao. He thanked the TRS working president for his support. Rama Rao enquired about the boy’s health, and assured all support for his full recovery.

“He returned with his surgeries done and was able to walk normally, thanks to CMRF. These are the memories that will stay with you, when you call it a day,” said Rama Rao, sharing his experience on Twitter.

Original source article https://telanganatoday.com/ktr-helps-polio-stricken-boy-stand-on-his-feet Stiffness modification of two ankle-foot orthosis types to optimize gait in individuals with nonspastic calf muscle weakness – a proof-of-concept study | Journal of Foot and Ankle Research.

[Open Access] [Received 23 April 2019; Accepted 02 July 2019; Published 07 August 2019] Abstract.

Background. To reduce gait problems in individuals with non-spastic calf muscle weakness, spring-like ankle-foot orthoses (AFOs) are often applied, but they are not individually optimized to treatment outcome. The aim of this proof-of-concept study was to evaluate the effects of modifying the stiffness for two spring-like AFO types with shoes-only as reference on gait outcomes in three individuals with calf muscle weakness due to polio.

Methods. We assessed 3D gait biomechanics, walking speed and walking energy cost for shoes-only and five stiffness conditions of a dorsal-leaf-spring AFO and a spring-hinged AFO. Outcomes were compared between stiffness conditions in the two AFOs and three subjects.

Results. Maximum ankle dorsiflexion angle decreased with increasing stiffness in both AFOs (up to 6– 8°) and all subjects. Maximum knee extension angle changed little between stiffness conditions, however different responses between the AFOs and subjects were observed compared to shoes-only. Walking speed remained unchanged across conditions. For walking energy cost, we found fairly large differences across stiffness conditions with both AFOs and between subjects (range 3–15%).

Conclusions. Modifying AFO stiffness in individuals with non-spastic calf muscle weakness resulted in substantial differences in ankle biomechanics and walking energy cost with no effect on speed. Our results provide proof-of-concept that individually optimizing AFO stiffness can clinically beneficially improve gait performance.

Original source article https://jfootankleres.biomedcentral.com/articles/10.1186/s13047-019-0348-8

REMINDER FOR MEMBERSHave you changed your home, email address or phone number recently?Did you let us know?

Editors Note:-

Articles from Polio Survivors and Health Professionals very welcome for future issues

The most accepted article we have found by NHS professionals is:

PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors

http://patient.info/doctor/post-polio-syndrome

And in case you need an anaesthetic an excellent leaflet translated into English now used by many PPS Groups around the world is:

POLIO PATIENTS AND SURGERY. Information for health staff.

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims

http://www.ptu.dk/fileadmin/FILER/PDF/ISSUU_PDF/BROCHURER/ Polio_operation_ENG.pdf

Text copies of both have been sent to members and are available on our headed paper with permission

POST POLIO SYNDROME EXISTS

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee/s – Vacancies please apply for more information.

Operations Team

Phone Enquiries – Hilary Boone – info@poliosurvivorsnetwork.org.uk

PSN Admin, Email Enquiries and Website – Toni Dunlop – psnadmin@poliosurvivorsnetwork.og.uk Printing – Imprint Colour Printers, Lincoln

Management Committee [Trustees]

Membership

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(please be prepared to leave a message, your name and phone number we will ring you back as soon as we access our messages)

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If you pay tax at the higher rate, you can reclaim tax relief on your gross donation at 20% (i.e. the difference between the higher rate of tax at 40% and the basic rate at 20%).

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Thankyou.

© Polio Survivors Network – Volume 9, Issue 10/12 [106] AUGUST	Page 20
© PHOTO CARDS by MEMBER VAL SCRIVENERSold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 including P&POrder by Email to vala.scrivener412@btinternet.com Or ring Val on 01234 346 397

because WE’RE STILL HERE!www.post-polio.org
WiktionaryHANDICAPABLECoined as a more positive-sounding term.https://en.wiktionary.org/wiki/handicapablePolio Survivors ‘What works for me’2 in 1 Rollator and Transit wheelchair.Flip down foot rests if you need to be pushed. Height adjustable. Under seat bagPSN Member Anne Wood 25.2.1945 to 18.4.2019 Her family’s favourite photo	Toni Dunlop stopped outside Post-Polio Health International Offices in St. Louis for a quick photo

WHAT is WOW?

The WOW petition campaign began at the end of 2012 when several disabled people decided to do something about austerity cuts the Torys & LibDems in the coalition government were making and targeting, they believed, disabled people. They set up a petition on the government’s e-petition website (43154) calling for a Cumulative Impact Assessment of Welfare Reform and a new deal for sick & disabled people based on their needs, abilities and ambitions.

wowvoices.uk/send-us-your-voices

If you are a disabled person, carer or a health professional you can send your experience of how the cuts to services, the NHS and welfare reform have affected you personally and the people you know.

You can send a written account, a recording or a video. You can send your file or a link to where you have uploaded it by email to info@wowvoices.uk or via the website https://wowvoices.uk/send-us-your-voices/

You can also choose if you would like your experience to be published on the Send Us Your Voices website (remember it will also be shared on social media) or not. If you prefer you do not need to use your real name.

WOW Voices state that they won’t disclose your identity or give your email address to anyone without your consent.

WOW Voices state that some of the facts the ‘voices uploaded’ you may not believe could possibly have happened. If you have not personally or know someone who has had to apply for a change from Disability Living Allowance to Personal Independence Payment then it is probable that you will not believe some of the facts reported. Some examples are assessors not taking into account/totally ignoring the facts given by highly qualified health professionals. Some people who had high level DLA have received letters awarding them NO points at all!

Post Polio Matters Volume 9 Issue 10 Read More »

Post Polio Matters Volume 9 Issue 9

Polio Survivors Network is the working name of Registered Charity 1064177, The Lincolnshire Post-Polio Network

Printed by Imprint Colour Printers Lincoln 01522 539570

Enter 100+ articles

Polio Survivors Network Newsletter

APRIL 2019 Vol 9 of 12, Issue 105. n.b. Volumes 1 to 6 published under the name LincPIN.

POLIO SURVIVORS do NOT all look

as if they had paralytic polio in their earlier lives

[and non paralytic where paralysis not seen]

Health Professionals need your help because they are rarely taught enough facts about Polio and Post Polio Syndrome.

The level of invisible internal nerve damage by the polio virus is often not seen or understood.

Gwen Hunt BSc. RN in 1995 Head Nurse of 50 bed ward And in 2003 with Post-Polio Syndrome

PREPARE information on your Polio, Post Polio Syndrome, other medical diagnoses, Medications, Allergies, Aids and Equipment and any prior issues when in Hospital. Plus, as a minimum the two articles on page 18, and a couple of photos like the above. [read more page 10]Print this out and carry in your bag; your car; by the door of your home large green cross on file; give a copy to friends/family members; add the information to a USB stick on a keyring, or on your mobile phone, iPad.

POLIO SURVIVORS Please Help Health Professionals

Annual General Meeting

July 6th 2019 Lincoln

Page 2

QUICK NOTES

Annual General Meeting has now been fixed for Saturday July 6th 2019 and will be held in the City of Lincoln.

Further information will be sent out with the Annual Report in the next couple of weeks. If you are able to join us and want information before then then please email or ring.

New Part Time Admin Officer starts on May 6th 2019, come and met her at the AGM.

Apologies for the delay in sending this newsletter due to personal issues taking energy away that was needed to complete this.

Next issue will be late June 2019 with deadline for inclusion June 4th 2019.

Remember if you see something that might be of interest to other members please let us know we would rather have it sent to us ten times than not at all.

Page 2	Contents
Page 3	Editorial by Hilary Boone
Page 4	Message from Our Chair, Simon Parritt
Page 5	Polio Survivors Benefit from Sharing Experiences – some online resources.
Page 6 – 7	Orthoses are we getting a raw deal? Zsuzsi Snarey.
Page 8	Orthotics Campaign. United Voices for better NHS Orthotic Care
Page 9	Where the NHS excels by Verite Reily-Collins.
Page 10 – 11	Polio Survivors do NOT all look…. From front page…
Page 12	How do you cope accepting the help you now need?
Page 13	Diagrams to colour in as visual aid to your Polio and new issues.
Page 14 – 15	Simon’s Research Wanderings (but don’t quote me)
Page 16	What was Polio like for a 13 year old. Richard Daggett ‘Not Just Polio. My Life Story’
Page 17	Two items from ppn – Post Polio News, Chris Salter
Page 18	Repeated every issue – Post Polio Syndrome Exists.Polio Survivors Network believes the following two articles are important as they have been well accepted by many NHS Health Professionals.Patient.co.uk article on Post-Polio Syndrome and Polio Patients and Surgery Information for Health Professionals. English version from PTU, Denmark.
Page 19	Contact details
Back Page	Post Polio Matters… because “We are Still Here” Nils van Leerdam, Ambroise NL, from page 7 My Hungarian Family by Zsuzsi Snarey.Book cover Blood, Bone and Marrow, Biography of Harry Crews – from page 17 Val Scriveners’ Photo Cards for sale to raise funds for Polio Survivors Network.

Editorial by Hilary Boone

Firstly I must apologise for the lateness of this issue due to a personal issue taking most of my available energy. We only have so many energy tokens a day and when they are spent there is nothing left in the kitty. Strange choice of words as I typed kitty ‘Dixie Lee’ jumped on the foot rest area of my riser recliner behind my laptop and settled himself down to sleep.

Annual General Meeting is being held on Saturday in Lincoln,… info here once booked…

Admin Officer. I would like to thank Simon D-S for the work that he did for PSN for six months and was sad that due to personal reasons he no longer had the time available from his University Course to extend his contract. I am happy to announce that shortly after you read this our new Part Time Admin Officer, Toni, will be in post. She is also taking the post of Part Time Admin Officer for the Lincolnshire Neurological Alliance which will be of great benefit to our Lincolnshire members. The LNA have worked for over 20 years now for better neurological services in Lincolnshire but it is the same old story…. No accurate numbers and changes upon changes of boundaries and organisation names and so many start all over again with yet another person/s charged with working on the project. The pilot program a couple of years ago for Parkinsons that was going to be for all neurological conditions pathways fizzled out. We have had meetings with the new Director of Public Health, Professor D. Ward and hope for some more news in July.

To ensure everyone seeking information about PPS from us can now afford it we have decided that Membership is now FREE whilst we have the funds to support this.

“Safe, effective, and potent.” With these words on April 12, 1955, [64 years ago] Dr. Thomas Francis Jr., director of the Poliomyelitis Vaccine Evaluation Center at the University of Michigan School of Public Health, announced to the world that the Salk polio vaccine was up to 90% effective in preventing paralytic polio.

This reduced the number of cases of polio and as they reduced the Colleges of Medicine taught less and less facts. We learned in 1997 that for Doctors it was half an hour lecture with leprosy. How many of you have been on the receiving end of comments like ‘we don’t have polio in this country, do you come from a third world country? – are you sure, you don’t look like it to me? – and my favourite, ‘Oh yes, Post Polio Syndrome I have just learned about this new disease’ and look surprised when I tell them that it was first medically recorded in 1875, is not a disease but a possible later stage following years of stable functioning. Continues page 10...

Best Wishes for Speedy Recovery. I, on behalf of all our Members, would like to wish Caroline [also BPF Secretary for the Lincolnshire Branch and East Midlands Region] a speedy recovery following her fall and operation at QMC in Nottingham. See Back Page.

PLEASE SHARE EXPERIENCES OF YOUR POLIO LIFE Tell us about the solutions you have found that work for you. Tell us about the issues you have managing your post-polio life.

Help us build of possible solutions to publish in our newsletter

NEXT ISSUE – Deadline June 4th 2019.

MESSAGE FROM OUR CHAIR

One size does not fit all

I have been thinking, although we are all polio survivors and share a lot of experiences, we are also very individual and different. This is true in many ways but importantly it is also true medically and psychologically. Myths pervade that try to bunch us together and that can be useful to lobby and get attention. There was a theory around that Type A personalities, go getting driven people were more likely to get polio. The truth is probably that previously illnesses were a mostly contagious diseases of the poor and working classes. Polio was different, it was indiscriminate and not just a result of poor nutrition or living conditions. The elite and powerful and middle classes were also deeply and personally affected, especially their children. As a result, more attention, funding and PR was given to polio than diseases of the poor had ever or rarely previously had. You might say we became part of some elite disability group of interest to medics, researchers and all of society. Even the President of the USA, F.D. Roosevelt was diagnosed with polio in 1921 (though we now believe he probably had Guillain-Barre Syndrome). https://www.sciencemag.org/news/2003/10/did-fdr-have-guillain-barr

Times change

As George Harrison put it, all things must pass. We are now largely a forgotten historical and increasing minority, and an ageing group in the west. With polio vaccines, again only groups who are poor, in war zones or problematic political environments are at risk of getting polio due largely to lack of access to vaccine. It has become much like most contagious diseases were, an illness associated with poverty and deprivation of one sort or another and, of course, war.

From celebrity to invisibility

I often feel we are not used to this down grading of polio’s status, especially with professionals! It is a problem for us when we need support as we are the perfect example of diversity and the need for individualised holistic care. Today that is expensive and has increasingly given way to protocols, categorising and treatment that is only resourced if it meets a medicalised model of evidence-based practice. The problem that this requires research, and polio is no longer a sexy or lucrative subject. In addition, funding is given to research which lumps similar symptoms and conditions into treatment groups. Therein lies a problem, polio survivors do not fit into such boxes, we never have done of course, but in the past mavericks and outliers of the medical and care professions were often allowed to ‘wing it’ and do ‘what worked’ regardless. Of course, that may have been financially wasteful by today’s standards but maybe we are throwing out the baby with the bath water as we shift away from holistic and individualised care and supporting difference and diversity in our healthcare system.

People not just treatments

In psychotherapy, and psychological therapies it has become increasingly accepted, if not by the government and bodies such as NICE, that it is the relationship between patient therapist that is the most important factor in the wellbeing and outcome rather than any one particular technique or intervention. It is a shame that this is something we have to fight for when I feel sure many good clinicians would welcome more autonomy and time with their patients. I fear we often forget that medicine is not just a science and not just about cure and about so but much, much more than that.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc(Hon)), BA, CPsSC, MBACP

Chartered Psychologist. HCPC Registered Counselling Psychologist, www.sp-psychology.com Chair Polio Survivors Network.

Simon Parritt <simon.parritt@poliosurvivorsnetwork.org.uk>

POLIO SURVIVORS NETWORK AGM – Saturday July 6th 2019 in Lincoln.

POLIO SURVIVORS BENEFIT FROM SHARING EXPERIENCES

Managing our lives now with Post-Polio Syndrome is not easy

What works for one may not work for everyone but if it works for you it is worth sharing.

Here are some of the other Post-Polio Resources with sharing experiences around the World.

Welcome to Sunny’s Blog. – sunnyrollerblog.com

CONVERSATIONS ON LIVING WELL IN LATER LIFE—-WORDS AND WISDOM FROM POLIO SURVIVORS

PolioToday.org is published by the Salk Institute for Biological Studies.This website is designed to raise awareness of post-polio syndrome and to be a resource for polio survivors. Dr. Jonas Salk, who developed the first safe and effective polio vaccine, founded the Salk Institute in 1960.Watch Videos of 14 Personal Stories, Expert Opinions by Dr. Perlman on 15 PPS subjects Breathing and Sleep Symposium 2009 – 4 videosBreathing and Sleep Symposium 2010 – 8 videosBreathing and Sleep Symposium 2011 – 7 videos

Facebook.

There are a variety of Post Polio Groups on Facebook where there is always someone awake somewhere in the world if you need to chat.

Public Groups are where anyone can join and the admin try to ensure that everyone respects the values of the group and will remove anyone who does not.

Closed Groups – not listed below – and where your messages cannot be seen by anyone not subscribed to that Group. Talk to your PPS Support Group for info. The following are just a few examples of the Public Groups.

Polio Survivors Rotarian Action Group

Polio Australia, Polio New Zealand,

Post Polio Alliance of South Florida, Polio Survivors in Ireland,

New Orleans Area Polio and Post Polio,

Land of the Sky Post Polio Support Group

The Post-Polio “COFFEE HOUSE”, Polio Mom, Polio Survivors at Work

polio place – www.polioplace.org

A service of Post-Polio Health International.

Preventing poliomyelitis was the focus of the work done in the first half of the Twentieth Century. Other scientists and physicians left an important legacy by developing treatments and devices during that time.

Many people have been instrumental in improving the lives of polio’s survivors – the people for whom the vaccine was too late. Explore the lives of 37 notable individuals.

ORTHOSES – Are we getting a raw deal?

My experiences with Orthoses. By Zsuzsanna Snarey.

When I had polio at the age of eight my mother refused to have callipers for me having seen the wasted limbs of the children who wore them. I managed to learn to walk again although it took a whole year before I took three steps. It took many more years before I became independent and always used a stick outdoors.

I brought up three children, became a teacher and it was not until the age of sixty that my left knee started to give me problems. When I saw the GP I was told that the waiting list to see an orthopaedic surgeon was 9 months. My husband was working at the time and his employers gave him private health insurance which meant that I had an appointment the following week. I took with me the advertisement for UTX Swing callipers from the British Polio Fellowship magazine. The orthopaedic surgeon agreed with me about the need for protecting my hyperextending left knee and immediately phoned the Ambroise representative Ken who later visited me at home, took measurements and delivered the calliper a few weeks later. He told me that I had to be seen at the orthotics department of the hospital with them where I was severely told off for “going through the back door” and jumping the queue.

In time the callipers needed servicing via RSL Steeper who acted as intermediaries with the Dutch company Ambroise. It took about two months before I received them back. So eventually I had to have another calliper to wear while I was waiting.

About ten years later I started having pains in my right knee but I was told by Robin Luff at the Lane Fox unit that it was not possible to wear two callipers. My right knee was getting more and more painful, I started to use two sticks and walk less and less. But it took me two years and several appointments with three different specialists and persistent demands before I managed to get the second calliper. First there was the problem of funding, then the fitting because an orthotist who was qualified to take the measurements had to come specially from London and once made the calliper had to be returned to Holland three times before I could use them. They were still making a dent into my leg. All this took another six months.

Finally I had two callipers for each leg but they were still not fitting comfortably. In final desperation my husband decided that we should have a short holiday and travel to Holland to resolve the problem. I contacted Nils van Leerdam CEO of Ambroise NL. www.ambroise.nl/en/ team/ and we agreed on a date. He said that I would need to stay for three nights at a local hotel. I found a three star hotel (the Conferentiehotel Drienerburght) in Enschede on the site of the University of Twente which was near the offices of Ambroise, booked a crossing at Dover and we set off on Monday morning. We spent the first night at the Premier Inn Dover where I discovered that we left my suitcase behind! We stocked up on essentials at the local Tesco.

We crossed the Channel early Tuesday morning and arrived in Enschede in the afternoon. The town is near the German border. My appointment was at 9 a.m. on Wednesday. Nils took note of the alterations necessary on my callipers and took several photographs of my legs against a graduated chart attached to the wall. This was fed into a computer to make my new callipers. We returned in the afternoon for fittings of the old callipers which took a few hours but finally they were made comfortable. On Thursday morning the new callipers were fitted. This also took several adjustments until I was told to go and try them out for a few hours. We explored the excellent Rijks Museum where we had lunch. We returned at three o’clock to sort out a few minor problems. On Friday there was still a chance of making alterations until finally all was well and we started on the return journey on Saturday, very early in the morning with a packed breakfast which in fact lasted us the whole day! We arrived at the crossing at about 4 o’clock and were home by 9 p.m. in Nottingham.

The 18th century French surgeon Ambroise Paré introduced modern amputation procedures and made an above knee device that was a kneeling peg leg and foot prosthesis with a fixed position adjustable harness, knee lock control and other engineering features that are still used today. His name was chosen for the company set up by Nils van Leerdam when he completed his PhD and

invented the UTX Swing calliper. UT stands for the University of Twente and the X stands for Intelligent Knee Stabilisation pronounced IKS in Dutch. He might have been inspired by the fact that his grandfather suffered from polio. The aims of the company are the 3C’s : Control, Comfort and Cosmetics. In the reception there is a large photograph of a very attractive young lady wearing high heels and a short skirt with a UTX Swing calliper! Quite impossible to achieve for me! I am going to carry on wearing long skirts and trousers to hide them. Wearing trousers has its problems, but it is possible to put them on using a plastic bag over the shoes. Another solution is to have wide leg trousers which are much easier to put on and off with callipers. I have to rely on my callipers more and more since I first needed one 16 years ago.

Hilary’s story – shortened considerably.

I had waist down paralysis at age 5 with good recovery. After a couple of operations for dropped feet I managed many sports that did not involve running.

I slipped on a wet patch on a school corridor in 1988 and this time when I got up I started to have new issues. Painkillers and physio did not help and I ended up in hospital on neck traction. I spent the next seven years going through a variety of NHS departments and always ended up with yet another physiotherapy regime. but I just got worse. November 1995 hearing results of MRI scan ‘I am glad you are better’. I replied ‘ I am not better, I have continued to deteriorate. I had polio as a child has that got anything to do with this?’ His reply ‘Oh, there is something called the Late Effects of Polio ….

It took research and 2 more years and a referral to a second hospital, Queens Medical Centre, where I had a full days tests that could find nothing else and I received a letter ‘confidently diagnosed the post-polio syndrome’.

I learned from other Polio Survivors online that I needed to use aids and assistive devices to reduce falls, pain and fatigue. I asked for referral to the Orthotic Department and to keep this story from running to pages and pages I have had at least seven provided by the Orthotics Department at Lincoln and, if wearable, all uncomfortable.

Thanks to my travelling to PPS Conferences I had one made in Ottawa in 1999 [thanks MF] that took FIVE hours and was comfortable from day one. It lasted 7 years till I fell and broke it for the second time and it would not glue. I met Ken from Ambroise and if I bent my left leg more than a couple of inches I collapsed. I was fitted with a left leg Utx like Zsuzsi which allowed me to walk almost normally. This was great for about five years until I was not able to walk far enough to warrant putting this on and I started using my electric scooter more often. I had also had to go back to a UK made uncomfortable AFO.

In 2008 just before we left the USA to live in Lincoln Richard went to see his Orthotist to ensure he had all the bits necessary if his KAFO broke. I found it was only £125 for an AFO. I was asked to walk backwards and forwards 10 metres with and without my shoes on. My feet and legs were then examined. Then the Orthotist picked up my UK made AFO and said, ‘but there is no pressure relief for the ball of your foot’. Oh, if only I had remembered that was exactly what the Canadian Orthotist had said was wrong. The Orthotist opened his box of tricks took out the required jelly shape AFO with pressure relief space for the ball of my foot. March 2008.

2018 The strap on my right AFO needed replacing so I made a temporary repair. Then I realised that my stubbed toes and falls were because my left leg had started to drop, I had to ask GP for referral. Lincoln Hospital made new for my right leg but had to go back for alterations. They made new for left leg but it threw my knee out and caused me to fall so I went back and an appointment would be given a physiotherapist/orthotist but I have heard nothing in 3 months.

I decided to visit a Private Orthotist for an assessment. I had a thorough assessment. I was shown 7 different options to manage my dropped feet. One I could try for an idea, although it would have to be fitted. I stood walked a few paces and instead of looking at the floor I could see her face. I sat down and burst into tears. I returned a week later and now have two BlueROCKERS – www.allarduk.co.uk/foot-drop-adult/bluerocker-r. They have made a huge difference. No longer a bent old crone using a walker but almost standing straight again and using a cane. Huge benefit for my health. OK it has cost me £1450 but worth every single penny.

Hello – I am Rebecca. I am mum to David who was born with Cerebral Palsy. In 2009, following years of slow, poor quality NHS Orthotic care for him, I set out on a local campaign with other patients and carers to improve the Orthotics service in North Staffordshire. It wasn’t until we had succeeded and had some national publicity, that patients from all over England contacted me to say they were facing the same challenges we had had with their Orthotic care.

Namely:

Long waits to get an appointment to see an Orthotist

Having one Orthotist measure you and a different one (with a different opinion!) fit it Devices and footwear being completely unsuitable / unwearable / ugly

Things taking so long to come that they would be outgrown or no longer suitable by the time they arrived

Orthotists having to rush through appointments .

So, in response to receiving some very sad stories about orthotic patient care, the campaign ‘went national’ in 2013. Orthotics patients and their carers generously shared their stories with us and gave their permission for us to pass them on to NHS leaders. With the help of Healthwatch we managed to get the attention of NHS England. They published a report in 2015. For some patients this report did improve their care, but for others the report joined the many other reports on the sorry state of NHS Orthotics provision that local providers and commissioners had ignored.

Some of the many reports on Orthotic Care.

•	NHS Improving the quality of Orthotics Services in Englandwww.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/11/orthcs-final-rep.pdf

•	York Health Economics ConsortiumOrthotic Service in the NHS: Improving Service Provision [July 2009]

John Hutton – Project Director, YHEC Limited – University of York [The Hutton Report] Manjusha Hurry – Research Fellow – YHEC Limited – University of York. [July 2009]

http://www.nsoc.org.uk/evidence/york-report.pdf

• Centre for Economics and Business Research Ltd.

The economic impact of improved orthotic services provision

A review of some of the financial and economic benefits of a better functioning system for the provision of orthotic services

http://www.nsoc.org.uk/evidence/Orthotics_review_Cebr_report_04%2007%202011.pdf

•	Report for the British Healthcare Trades Association (BHTA) Final report July 2011.http://www.nsoc.org.uk/evidence/Orthotics_review_Cebr_report_04%2007%202011.pdf

Readers.

Please let us have your stories – good and bad. The more information we have to add to our database the easier it is to respond when we are asked at local and national meetings. We need to hear from more members and then we can provide a response in our next newsletter so that you can also use the information where you live. Contact by post or email. If you can only talk on the phone then let us know and we will arrange a suitable time.

Where the NHS excels – by Verite Reily-Collins.

When it comes to arrogance the NHS’s hierarchy has it in spades. Anyone who has attended an NHS conference recently knows you just can’t beat them when it comes to back-slapping and self -congratulation. But – sometimes someone stands up to their self-congratulatory committees, and recently a Lambeth nurse had the guts to do this.

Here is a video of the brave nurse who stood up to the big chiefs at an NHS Executive Board meeting, and dared to challenge them. You can see what happened on https://aftercancers.com/ challenging-nhss-back-slapping/

Gay Lee got in to the meeting and pointed out that probably the most important problem facing the NHS today was shortage of staff. Those of us with long-term problems from polio know how difficult it is to get treatment, let alone see a consultant who understands our condition.

But instead of seriously talking about problems facing the service, all Lord Prior could do was spout self-congratulatory stuff. All gung-ho and back-patting.

Gay has worked tirelessly for the NHS for over 40 years, so when she highlighted the major problems facing the NHS such as the lack staff, workforce strategy and funding, she was on solid ground. Problems which the meeting seems to have ‘overlooked. ….

NHS administration (those with the six-figure salaries) seem to live in a cocooned world. Grand statements about X-amount of extra staff overlook the reality that it takes years to train these staff. Therefore those heads of NHS services that were at this meeting need to be challenged on performance. But instead they have a huge staff to shield them from reality.

Now, it is even more difficult to get any adverse comment aired/ So when this video shows Gay bravely challenging Lord David Prior at an NHS meeting I am full of admiration. .

The man sitting on the right as you look at the video is Simon Stevens, CEO of NHSE – who used to be a senior executive at United Health in the USA.

Apparently the latter said nothing to Gay after the meeting and although David Prior did come up and speak briefly he left as soon as he saw that the new Chief Nursing Officer of NHSE wanted to speak to her.

As Gay says, “the bottom line is that it will take a long time….to train enough staff… and there is not even a strategy document ’til the autumn”. So who is going to be the next person brave enough to challenge the NHS in public?

Verite Reily Collins

Polio Survivor, Cancer Survivor, Health Journalist, Trustee, www.aftercancers.com

Readers.

What other medical diagnoses do you have as well as Post Polio Syndrome?

We know quite a few who have Parkinsons [7 in or near to Lincoln and we know others around the world], some have MS, Cancer, Type 2 Diabetes, Sleep Apnoea, many Fibromyalgia but..

Fibromyalgia is common in a Post Polio Clinic by Trojan DA and Cashman NR – www.ncbi.nlm.nih.gov/pubmed/7763212

Polio Survivors do NOT all look… From Front page.

Gwen Hunt. BSc, RN… had paralytic polio as a child but there are no photographs of her with polio. She recovered and entered body building competitions as the picture on the left. Became a Head Nurse for a 50 bed ward then Post Polio set in and the need for a wheelchair. What did she do then, sewed a Harley Davison patch on the back of her Quickie Wheelchair, the biker bros loved it!!!

Charlie Minner, BA, BSN, MSe, CCRN (Med). Yes all three photos are Charlie, aged 10, 19 competing in gymnastics on the rings for his College Team and at 53. He built his own ultra-light aircraft, glider, his home in the mountains of Tucson and others. He was a master craftsman. Charlie loved to Fly Gliders, Watch Soaring and work at Soaring Contests. Micki Minner, a long standing researcher into PPS that I have known for many years is a committee member of Polio Epic Tucson, USA, www.polioepic.org

Please look back at the pictures on the front page. Would you have imagined that Gwen could recover from paralytic polio to enter body building contests, note she worked out poses so that any thinner limbs were not as noticeable. Even I was stunned to see Charlie’s photograph on the rings and learn that he become part of his College Gymnastic Team? Did you know that

Lord Snowden, Jack Niklaus, Sir Arthur C Clarke, Mia Farrow and Alan Alda had polio?

Did you recover that well that at best recovery you had no obvious visible effect of having had polio in your earlier life?

What sort of photos/drawings do you think they show medical students about polio? Just a few examples below. When you have mentioned you had polio, have you been told that you must have had a very mild case? Have you been able to reply that you were paralysed and/or wore callipers for some years, and/or also spent some time in an iron lung?

Could this be a reason why some of us have such a hard time convincing health professionals we had paralytic polio and recovered well but now have new issues?

How do your photos change from with polio, at best recovery and now? Richard sitting in an electric wheelchair with a full leg brace and built up boots was thought to have been like that all his life till we showed the PPS Doctor a photo of him twenty years earlier with a strong muscular upper body working putting the engine of his truck back in. How about making up a tryptic of your polio life, or just two photos showing considerable ability and now with new functional decline and carry these with you. Helps health professionals ‘see’ more about the person in front of them.

With respect, even if you are told they know all about polio and PPS, you cannot rely on this. We have a great number of examples to show this is true. It cannot be easy meeting a Polio Survivor for the first time who has obviously got considerable knowledge and personal experience. Imagine yourself as the Health Professional meeting you for the first time. In this country I have only met one Health Professional so far who knows as much as I have learned in the last 24 years.

To make health professionals lives easier prepare some information on you, your polio and any other diagnoses that you have. Information about how you are now having to do actions of daily living in a different way than a few years ago. Ensure you have printed copies of the two best accepted by the NHS medical articles that we repeat each newsletter on page 18..

In our young lives and through our early to middle adult years we were very strong willed and determined to manage our lives to the full. Help was not needed, we could manage, If you tried telling us we could not do something we did everything possible to prove you wrong. There was no such word as CAN’T in our vocabulary.

We have achieved highly in our lives. Member Jann Hartman started a list of famous polio survivors many years ago but this is now no longer available. Wikipedia have a list under the following headings.. We know and expect there are many more to add, especially in Medicine. Acting [15], Business [11], Disability Rights Activists [6], Film television and radio [17], Literature [29], Music [26], Politics [31], Science and Medicine [15], Sports [20], Visual Arts [14] and Miscellaneous.[14] en.wikipedia.org/wiki/List_of_polio_survivors

You only have to look at this list and picture Jack Niklaus playing golf and what other sportsmen and women have achieved to realise how far people could recover and achieve from having had paralytic polio in their earlier lives.

As important are the Survivors who have used callipers, arm crutches, wheelchairs, iron lungs and respiratory machines yet still lived a full life. Richard Daggett from California [see photo back page] and Jim Costello from Post Polio Support Group, Ireland [who still sleeps in an iron lung a few nights a week] come to mind. Mums that brought up their children by finding other ways to manage tasks – one member told me she looked after her baby on a mattress on the floor to manage all necessary.

Problem is when you are diagnosed with PPS and you are asked to change the habits of a lifetime, pace and rest, use aids and assistive devices, and ask others for help you fight it year on year because that is the way you have managed up till now. Strong willed and determined polio survivors do not give up. However, those of us who have passed through this will all tell you that this is not giving up at all. In fact by taking these actions it allows you to do loads more albeit in bits [yes loads more] and less painful life doing what you enjoy. I have been asked many times should we have done less earlier? Probably, but would we? Probably not.

Even if you do not look as if you had polio and think therefore it must have been a mild case [my GP told me this because I had just told her I had been a policewoman and was stunned to find that I had been paralysed waist down] whatever damage the polio virus did to our nerves is important.

More important is charting the actions of daily living that you do each day and in separate columns writing how these actions have changed from your norm. [Remember your norm may not be the way others would do that action]. It is these changes that are the questions you can ask of health professionals. i.e. Two years ago I could walk up a flight of stairs just holding the bannister rail. Now I am having to pull myself up each step with the bannister rail and stop half way for a rest. Please can you tell me what has changed in my body causing me to do this?

How do you cope accepting the help you now need?

I am a member of the University of Lincoln, Health and Social Care Department Together Group. This is a group of service users, carers, and retired professionals who are available for Open days, interviews, planning new courses, taking part in lessons, being a book in the human library talking about your experiences, etc. Why did a group of us that had attended a Partners in Policymaking Course start doing this six years ago? Because we had given up some of our lives to attend NHS and Social Service meetings with little outcomes for us but they were able to ’tick their box they had consulted’. We believed we could see better outcomes telling students what it really is like to be on the receiving end of the services they will provide once trained. In fact we have had lots of affirmative feedback that it does.

At one of the first year sessions I had a door opened for me and my scooter and I said ‘Thankyou, I have got the door’ but they continued to hold it open and stand in my way and I could not get past. I repeated it to no avail and struggled to pass them. This happened often and it really bugged me. During the lesson there was a chance for me to raise this as an example. After some discussion one student said ‘We are trying to help you, ok I get the bit about not doing it the way you want or need it done, but if you repeat it in a stronger way, or complain, then I thought maybe rather than get it wrong I wont offer help anymore.’ Further discussion took place as to how we might phrase what we said so that folks still offered. It was a very interesting discussion and it was something many of us said that this had not crossed our minds.

So how do you feel now that you need more help in the home and to get out socially and to meetings, medical appointments, etc.? I still want to be the person I was, especially in my own home, doing the things I used to do. We have had Direct Payments for some years now to employ staff to support us. I so remember the first time I saw Richards PA open the dryer and take out my undies and fold them onto a pile. I just had to get away from seeing this. I was so embarrassed. It took about a year, and getting to know him better and finding his sense of humour was similar to ours and often used to lighten the load. I told him how I had felt and he looked at me all seriously and said ‘It is ok, I have a wife and a daughter and I know all about knickers [panties for our USA readers] and then he smiled and said ‘hey but yours are way bigger than theirs’ Oh how we all laughed.

Now some 9 years later we are needing more help and although it is ‘our house’ and ‘my kitchen’ and ‘I cook this way’ and ‘hang the washing out like this’ etc… we have to take a back seat and let those helping us do it their way. It makes me feel less of a person than I used to and want to be. I know I am getting older and I know that I have to pace and rest everything I do, and I have to listen to what I have been advising for years.

To manage our lives we have ten energy tokens a day and 70 per week and we have to work out how we can use them. Change it to money and how are you going to spend it. I cannot say do so many minutes of this and rest because it is individual for each and every one of us and for each different task and then we have to add what else we have wrong with us or have had to do the day before, etc. Take an average day and list the actions you have to do. Start with waking up and getting out of bed and washing dressing getting and eating breakfast, etc and list everything for the next 24 hours and do not forget turning over in bed.

I attended a Conference in Dublin some years back and was asked to join a panel for a question and answer session. My main focus is not on CAN we do x? But ‘HOW do we do x and how has that changed? I asked the audience ‘How do you roll over in bed?’ Seeing the quizzical looks on their faces I explained ‘I expect you will have to go back and try how you do it before you can answer this’. Many nodded agreement. With each slight deterioration we get a new NORM.

The above is from My Polio Life – a self-assessment tool that we devised to help you collect information on your Polio Life for you to use. You can then pick appropriate information to make up a double line spacing sheet of notes, maybe couple of photos, for each appointment.

Remember this is for your use and we suggest that you keep it handy at home. You can take it with you to appointments but only refer to something in it if needed. Remember appointment times are short and large documents, medical articles, lots of notes cannot be read in the time. Why the chart of bodies gives a fast overview. Mine is 5 bodies and Richards 8 now.

The idea is to colour these in using lighter colours for mild weakness and go darker to paralysis and there are some examples on the back page to add pain, tremors, canes, crutches, little wheelchair picture, stair lift, etc.

Write in the space underneath anything that you think is important. Operation dates, other diagnoses. This is for your use so you can add anything that you think will help remind you of points to raise at other appointments.

Some have bought a hard file and broken My Polio Life down into sections and added any hospital letters or test results under Department headings, e.g. Physio, Respiratory, Orthotist, etc. Some just add copies of any of these that they think are important to this file.

Take it with you, or get someone to bring it into hospital if you are an in-patient so that you can have this by your bed to refer to if asked questions you cannot answer. From personal experience we know that any printouts you give them are just put in your file where it is never seen again, especially if yours is a few inches thick.

A couple of sheets have been included with your printed newsletter. Those emailed copies will have a pdf of the sheet attached to the email.

A laminated copy of your coloured in bodies and a couple of photos of doing something you achieved and how you are managing now can speak volumes in less than a minute.

Operation. Bone cut and moved 20 degrees to straighten foot

Operation. Fell cut nerve in finger. Finger removed speedier recovery.

Best Recovery at age 18 [1969] PPS symptoms age 43 [1994].

Simon’s Research Wanderings (but don’t quote me!)

Guess what !

CBT and Exercise therapy are not as effective as claimed by many who help us polio survivors!

Experiences and perspectives of patients with post-polio syndrome and therapists with exercise and cognitive behavioural therapy.

A study published in 2016 in the Journal BMC Neuroscience, compared the impact of cognitive behaviour therapy (CBT) and exercise therapy for patients with PPS. They found, perhaps not surprising to many of us, that the ‘one size fits all’ paradigm which has gradually replaced individual holistic care is so good for us. The results showed that interventions ‘did NOT show a decrease in fatigue or improvement in secondary endpoints like Quality of Life and self-perceived activity limitations’

The conclusion was ‘Confirming the negative quantitative study outcome, the qualitative results did not demonstrate lasting effects on fatigue. Patients did, however, experience some benefits on self-esteem and acceptance of the disease. This study showed that it is of great importance to work with interventions that fit the patients’ needs on a practical (fit into their daily routine) and psychological (fit their need for support) level.

It is interesting here to note that the measures that are collected by therapists on their interventions are perhaps showing positive result when using short term follow up and quantitative outcome measures, but the ‘real lived experience of the patients’ was different as any improvement was short lived and actually the quality of life measures didn’t show much of an improvement. What there was, is probably what we all know, that being accepted and listened to and having some individualised focussed attention rather than ignored is what helped rather than anything actually done.

Bakker et al, BMC Neurol Feb 2016

Its not Just the UK

Polio and Post-Polio Syndrome,

viewed by patients and health professionals in primary care

Some research published in 2018 from researchers in Malaga Spain found that many people with PPS symptoms were using self-coping and managing with family and others help, but when seeking help from health care professionals:

“They presented compatible symptoms with post-polio syndrome, which remain unidentified due to the lack of knowledge of it among patients and health-care professionals. The health care provided was considered deficient due to several causes as for instance lack of involvement, communication problems.

The day-to-day polio experience is focused on personal overcoming with major roles played by family support, difficult relationships with the healthcare system and lack of knowledge of the post-polio syndrome.”

So, nothing new there then!

Muñoz Cobos F Rev Esp. Salud Publica. 2018 Jun 25;92.

Watch out for Snakes! Acute Flaccid paralysis in adults (AFP)

Interesting piece of research published in 2014 from India found that 133 consecutive cases of Acute Flaccid paralysis (AFP), so often mooted by many as being like polio may have several diverse origins. They write that AFP is:

A complex clinical syndrome with a broad array of potential etiologies that vary with age. We present our experience of acute onset lower motor neuron paralysis. The most common etiology was neuroparalytic snake envenomation (51.9%), followed by Guillain Barre syndrome (33.1%), constituting 85% of all patients. They found no cases of acute poliomyelitis in adults.

It is India remember! Ref: Kaushik R et al. J Emerg Trauma Shock. 2014 Jul;7(3):149-54

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc(Hon)), BA, CPsSC, MBACP

I don’t think most kids today know what an apron is.

The principle use of Mom’s or Grandma’s apron was to protect the dress underneath because she only had a few.

It was also because it was easier to wash aprons than dresses and aprons used less material. But along with that, it served as a potholder for removing hot pans from the oven.

It was wonderful for drying children’s tears, and on occasion was even used for cleaning out dirty ears. From the chicken coop, the apron was used for carrying eggs, fussy chicks, and sometimes half-hatched eggs to be finished in the warming oven.

When company came, those aprons were ideal hiding places for shy kids.. And when the weather was cold, she wrapped it around her arms.

Those big old aprons wiped many a perspiring brow, bent over the hot wood stove. Chips and kindling wood were brought into the kitchen in that apron.

From the garden, it carried all sorts of vegetables. After the peas had been shelled, it carried out the hulls. In the fall, the apron was used to bring in apples that had fallen from the trees.

When unexpected company drove up the road, it was surprising how much furniture that old apron could dust in a matter of seconds.

When dinner was ready, she walked out onto the porch, waved her apron, and the men folk knew it was time to come in from the fields to dinner.

It will be a long time before someone invents something that will replace that ‘old-time apron’ that served so many purposes.

REMEMBER:

Mom’s and Grandma’s used to set hot baked apple pies on the window sill to cool. Her granddaughters set theirs on the window sill to thaw.

They would go crazy now trying to figure out how many germs were on that apron.

I don’t think I ever caught anything from an apron – but love. Sent in by member Janet Whitworth.

1. Johnny’s mother had three children. The first child was named April. The second child was named May. What was the third child’s name?

2. There is a clerk at the butcher shop, he is five feet ten inches tall and he wears size 13 sneakers. What does he weigh?

3. What word in the English Language… is always spelled incorrectly?

4. In California, you cannot take a picture of a man with a wooden leg. Why not?

What was Polio like for a 13 year old?

Richard Daggett writes…. I was born on June 14th 1940.

On July 17th 1953 I woke with a headache and stiff neck. I was 13.

Later that day I was admitted to hospital.

In the afternoon they did a spinal tap, it was very painful.

That night my legs began to ache and shortly after midnight I started to have trouble sitting up.

Then my arms would not co-operate.

I was given a tracheostomy under local anaesthetic with the doctor giving a running commentary so everyone else could understand what they were doing to me. Everyone but me!

Then they put me in a ‘Drinker Collins’ iron lung.

I could not swallow so they inserted a tube through my nose to feed me……

Not just Polio. My Life StoryBy Richard Lloyd Daggett Forward by Jaquelin Perry MDAvailable on Amazon in Hardback £16.35 and Paperback £9.95

Polio Survivors Association – www. – Biographies – Richard Daggett

Richard Daggett is President of the Polio Survivors Association and is a lay member of the American Academy of Home Care Physicians. He is a certified speaker in the United Methodist Church and a journalist, mostly writing on the disabled condition. His articles have appeared in medical journals and medically related newsletters. Daggett caught polio in 1953 at the age of 13. He spent six months in an “iron lung” and almost three years in hospital.

Daggett was born in Los Angeles and has been a Downey resident since 1950. He studied psychology, geology, history and physics through the UCLA Extension Program. In 2010 Richard’s autobiography “Not Just Polio: My Life Story was published.

In 1974, Daggett and other severely disabled polio out-patients of Rancho Los Amigos Medical Center were discussing some of their common concerns. Among these were how to remain independent in their own homes, and how to obtain and maintain adaptive equipment necessary for their independence. This group of polio out patients decided to organise as the Polio Survivors Association and in 1975, formed a non-profit corporation to promote the wellbeing and improve the quality of life for severely disabled polio survivors. Mr. Daggett has led the Association since 1980.

Daggett has been honoured for his advocacy efforts by the California State Senate and the California State Assembly, as well as the County of Los Angeles and the City of Downey. He was the Los Angeles County Volunteer of the Year in 1989. When he accepted the Volunteer of the Year award he said, “As individuals, or even as a group, I know we cannot solve all of the world’s problems. But, if I can improve the life of one person, then my life is enriched.”

Written by Nicole Arevalo, for a school assigned, based on personal interviews.

www.polioassociation.org/Biographies.html

Hilary Boone met Richard Daggett and Dr. Jaquelin Perry in 2003 at Rancho Los Amigos, California, USA.

Two of the news items from ppn 11th April 2019.Blood, Bone, and Marrow – A Biography of Harry Crews. By Ted Geltner; Forward by Michael Connelly.A biography of the late Harry Crews, iconic American writer (and Polio Survivor) whom I have to admit I had not heard of until I read this absorbing story. Highly recommended. ppn editor.The first biography of Harry Crews, writer of the “Dirty South” and wildman extraordinaire.In 2010, Ted Geltner drove to Gainesville, Florida, to pay a visit to Harry Crews and ask the legendary author if he would be willing to be the subject of a literary biography. His health rapidly deteriorating, Crews told Geltner he was on board and would even sit for interviews and tell his stories one last time. “Ask me anything you want, bud,” Crews said. “But you’d better do it quick.”The result is Blood, Bone, and Marrow, the first full-length biography of one of the most unlikely figures in twentieth-century American literature, a writer who emerged from a dirt-poor South Georgia tenant farm and went on to create a singularly unique voice of fiction. With books such as Scar Lover, Body, and Naked in Garden Hills, Crews opened a new window into southern life, focusing his lens on the poor and disenfranchised, the people who skinned the hogs and tended the fields, the “grits,” as Crews affectionately called his characters and himself. He lived by a code of his own design, flouting authority and baring his soul, and the stories of his whiskey-and-blood-soaked lifestyle created a myth to match any of his fictional creations. His outlaw life, his distinctive voice and the context in which he lived combine to form the elements of a singularly compelling narrative about an underappreciated literary treasure. [page 20]2018 international meeting of the Global Virus Network | Antiviral Research.Highlights.* The GVN is an international research network comprised of 45 Centers of Excellence and 7 Affiliates in 29 countries.* The 2018 Global Virus Network (GVN) Meeting was held in Veyrier du Lac, France from November 28–30.* The theme was “Eradication and control of (re-) emerging viruses”.* International collaboration is critical to developing new and effective viral vaccines and therapeutics.* The 2019 international GVN meeting will be held on June 9–12 in Barcelona, Spain.Abstract.The Global Virus Network (GVN) was established in 2011 to strengthen research and responses to emerging viral causes of human disease and to prepare against new viral pandemics. There are now 45 GVN Centers of Excellence and 7 Affiliate laboratories in 29 countries. The 10th International GVN meeting was held from November 28–30, 2018 in Veyrier du Lac, France and was co-hosted by the two GVN Centers of Excellence, the Mérieux Foundation and the University of Veterinary Medicine Hannover (TiHo). The theme of this 10th International GVN meeting was “Eradication and control of (re-) emerging viruses”. This report highlights the recent accomplishments of GVN researchers in several important areas of medical virology, including strategies for the eradication of smallpox, measles, polio, SARS and vector-borne or zoonotic infections, emergence and intervention strategies for retroviruses and arboviruses, preparedness for outbreaks of Filo- and other hemophilic viruses, pathogenesis, impact and prevention of respiratory viruses, as well as, viruses affecting the central and peripheral nervous system. Also threats in crisis settings like refugee camps were presented.Original Article. https://www.sciencedirect.com/science/article/pii/S0166354219300385 [Pay to view]

Your Newsletter needs your stories, hints, tips and bitsA way of doing something, or aid, that helps you might help someone else. Tell us. How about a recipe that tastes great on the lips but not on the hips.CARERS – Are you a Carer and would like to write and tell us how we might help Carers understand what you go through helping us manage our lives.Articles and items for Post Polio Mattersare always welcome, by post, by email and by phone if writing is not easy for you.Deadline date for next issue is 4th June 2019

REMINDER FOR MEMBERS Have you changed your home, email address or phone number recently? Did you let us know?

Editors Note:- Articles from Polio Survivors and Health Professionals Welcome for future issues

The most accepted articles we have found by NHS professionals are:-

PatientPlus article POST-POLIO SYNDROME

Written by U.K. Doctors for Doctors http://patient.info/doctor/post-polio-syndrome

And in case you need an anaesthetic an excellent leaflet translated into English now used by many PPS Groups around the world.

POLIO PATIENTS AND SURGERY. Information for health staff.

Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims http://www.ptu.dk/fileadmin/FILER/PDF/ISSUU_PDF/BROCHURER/ Polio_operation_ENG.pdf

Text copies of both have been sent to members and are available on our headed paper with permission

POST POLIO SYNDROME EXISTS

Colleges of Medicine please add more facts to your lectures on the Polio Virus and the effects that it could have had on our bodies. Ensure health professionals understand how varied our nerve damage, our recovery and stable years have been. The majority of us recovered that well that externally we do not look like those photos in the old medical books. There is a massive overlap of symptoms with other neuromuscular conditions. Tell them about Post Polio Syndrome and link to our website and give them links to where they can find more information.

Management Committee [Trustees]

Chair – Simon Parritt – simon.parritt@poliosurvivorsnetwork.org.uk

Secretary, Zsuzsanna Snarey – zsuzsanna.snarey@poliosurvivorsnetwork.org.uk Treasurer, Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk

Trustee – Verite Reily-Collins – verite.reiycollins@poliosurvivorsnetwork.org.uk

Trustee/s – Vacancies please apply for more information.

Operations Team

Phone and email Enquiries – Hilary Boone – info@poliosurvivorsnetwork.org.uk

PSN Admin – [Toni] – psnadmin@poliosurvivorsnetwork.og.uk Researcher – Michael – researcher@poliosurvivorsnetwork.org.uuk Webmistress – Leah Rice – admin@poliosurvivorsnetwork.org.uk

Management Committee [Trustees] and Operations Team

Membership

Membership Fees

With grateful thanks to the generous legacy from Ms A Brown Membership will now be FREE whilst our funds remain above £10,000.00 UK Members can choose to get their newsletter by post or email or both. Overseas Members will get their newsletter by email

Use our new online membership service

Write to us at PO Box 954, Lincoln, LN5 5ER Email – psnadmin@poliosurvivorsnetwork.org.uk

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SEE BACK PAGE – Val Scrivener is making and selling brilliant photo greetings cards

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© Polio Survivors Network – Volume 9, Issue 9/12 APRIL 2019	Page 20
© PHOTO CARDS by MEMBER VAL SCRIVENERSold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 inc. P & P.Order by Emailing johnval.scrivener412@btinternet.comOr ring Val Direct on 01234 346 397

because WE’RE STILL HERE!

www.post-polio.org

From Page 13

Looking at this is a quick way for health professionals to see progression of issues.

You can have any number of bodies in your chart. You could change some to photos. These are a couple of examples of how you might colour in your sheet.

The body on the left shows yellow mild weakness, red is pain, pink zigzag is tremor, brown cane, and x relates to the operation.

The body on the right has changed the weakness to moderate and added a full leg calliper and the x on the hand relates to an operation as above.

42 48

Nils van Leerdam CEO of Ambroise NLHolding Zsuzsi Snarey’s Utx swing calliper.Read her story on page 6.

ppn item page 17

Blood, Bone and Marrow, A Biography of

Polio Survivor Harry Crews

AvailaThionotheat a by twhy I uns

ble on Amazon £7.99 / Kindls is the story of two fame of them Catholic and r Jewish, joined by martime when this was forbe authorities and the recame to England after ad polio as a result of uccessful attempt to es

e £3.99ilies, the riage idden ason having an cape.

Post Polio Matters Volume 9 Issue 9 Read More »