Newsletter – Page 2 – Polio Survivors Network

Post Polio Matters Volume 11 Issue 4

Polio Survivors Network Newsletter

January 2024 — Volume 11 Issue 4 of 12 [Edition 124]

Lincolnshire Post-Polio Library100+ articles

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

Resilient Reflections: Finding Strength in Stillness for Polio Survivors

Take time to reflect on the year just gone and ponder the year ahead.

Find strength amidst the unique challenges faced by polio survivors.

Enjoy the shared practical insights and experiences from our amazing polio survivor community.

This publication is provided free thanks to the generous donations of our lovely members.

Thank you so much!

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 Usually by Hilary Boone, Message From Our Chair by Simon Parritt
Page 4	Do dogs get better health care? by Verite Reily Collins
Page 5 – 6	How to manage and survive with Post Polio in the latter years by Zsuzsi Snarey, Meal Substitute Idea
Page 7	Handy feature on Apple iPhone, Don’t Do This, Do That by Millie Malone Lill
Page 8 – 9	Global Polio Eradication Initiative 2023/2024, What Does a Person Experiencing Post-Polio Look Like? By Polio Australia Inc
Page 10	Toni Writes
Page 11	From Our Readers, World Health Organisation update
Page 12	A couple of films worth watching …
Page 13	Managing Pain: Insights from the Polio Survivors Network Community
Page 14	Once I Could Run by Charles Mobley, Did You Know?, Useful Resources
Page 15	Management Committee, Useful articles on Post Polio Syndrome
Back page	New Resource, Photocards available to purchase

Donations and Charity Incentives Paid(since last newsletter)
Donation from J & E P	12.50
Estate of AB	40.30
Donation from AJ	30.00
PayPal Giving Fund	4.38
Donation from JS	30.00
Sale of Photocards MH	12.00
Sale of Photocards HB	26.50
Total	£155.68

PayPal donate link:

https://bit.ly/2KzyAyE

Editorial Usually by Hilary Boone

Unfortunately Hilary has been unable to provide her full editorial for this edition of Post Polio Matters, we hope she is able to be back to the keyboard for our next newsletter and that you enjoy our shortened version. We send our love to both Hilary and Richard at this time.

A few reflective words from Hilary: I would like to thank my husband Richard for all the support he has given me since we met online on the SJU Polio List in 1997.

I flew to Florida on 20th May 2000 and we travelled in his truck up to the GINI Conference in St. Louis not far from where he was born and had his polio operations.

We have been together ever since. First it was six months in the UK and six months in America. Without meeting him I would not have been able to attend so many PPS conferences in the USA. We married on 25th March 2006 and moved permanently to the UK in 2010. We have attended many Polio Meetings in the UK since then.

MESSAGE FROM OUR CHAIR … it’s January 2024 !

These months aren’t my favourite, given the weather and short days. I also caught polio in the first week of January 1956 aged 5, with only one term at school under my belt, or is it cap! I didn’t return for another two years. So much for polio being ‘the summer plague’! We maybe share various experiences as children who succumbed to polio or, as I did the bulbar form, and so being in an iron lung, paralysed, unable to swallow, breathe, or move. We all experienced that schism in the fabric of our lives as well as our parents, siblings and friends to varying degrees.

The child before and the child after polio, rarely talked to one another. I didn’t often look back and long to be the adult version of my physically able, bright, risk-taking young self. I even think I may have had an early demise, given my propensity for risk taking, much to my parents’ terror. As a small toddler gone missing, I was once found alone, crawling along the top of an 8-foot brick wall and when on my grandparents’ farm in Goxhill, North Lincolnshire I enjoyed climbing on the haystacks, a totally forbidden activity, given the dangers of falling between the bales and not being found or heard. Just two of many examples of my reckless, or was it adventurous early self? Perhaps learning to breathe, walk, talk and even eat again in a new way, with a new body for me, was just another adventure. Of course, it involved nearly 2 years of hospitals, away from my parents, my home, my friends and my former life and world. The truth is, as some of you might empathise with, I never did return as that 5-year-old Simon, and whilst everything and everyone was the same, I was not. The buildings, my school and outward surroundings were unchanged, as was my bedroom, but all seen through a different lens and a different Simon.

I was now a 7-year-old with all the experiences of those two years. I had seen, felt, struggled and confronted things that my peers, my teachers and many around me had no concept of. So it wasn’t just my paralysis or physical impairments and care needs that were in focus, I felt older, more mature in my head and yet also young and different from my peers. I appeared be just a small disabled, or rather ‘crippled’ or ‘handicapped’ child, as they said then. I fitted the ‘spastic society (sic)’ collection boxes child in callipers outside high street shops. I never liked them and yet was fascinated by them. A small note here, I threw out my callipers when I got home and adjusted to falling – a lot. This wasn’t ideal as with paralysed arms, after my knees my head was the next thing to hit the often concrete ground, as the stitches, scars and my poor parents nerves could attest to.

I am now ageing with PPS issues rapidly catching up with me and living with prostate cancer for the last 4 years. I do now indulge in thinking of how I was shaped by fate and a particular form of polio, and how I relate and shares things with that pre-polio 5 year old Simon, who is no doubt still there inside me after all this time.

Thank you for reading and if there are any thoughts of reflections that this has triggered please feel free to share here, or privately to me or for the next newsletter.

Our main hobby was re-enacting pre 1840

American Pioneer Times. We camped out about 30 days a year at three events in Florida, it was great fun sleeping and living in a tent. We also camped in the UK with the British Westerners

Association near Holbeach.

Do dogs get better health care? by Verite Reily Collins Fido doesn’t have to wait for an appointment

If your dog is sick, how long does it wait to see the Vet? Last time I had a sick dog, I phoned the vet and was told “bring him in this afternoon”. I had just come out of hospital, and as the Receptionist fussed over him, I thought how I would have liked a touch of the same TLC. During the consultation, the vet told me ” I need to take a blood test” and I groaned.

Whilst in hospital, it had taken 18 hours of painful jabs before nurses managed to get blood out of my shell-shocked veins. I came out looking like a junkie, with bruises up and down my arm. How on earth would the vet manage?

There was a click as he dropped a blood-filled syringe into the dish. “All done”, he said, as my dog wagged its tail. “How did you manage that?” I gasped, relating what I had experienced in hospital .

“Ah” said the vet, “you have to remember if we don’t do this correctly, our patients bite”.

Point taken. So next time …….

If you have a sick dog, would you meekly accept a Receptionist telling you “the first appointment I can offer is in 3 week’s time”?

No – if we were told this when we phoned a vet’s surgery, we would be up in arms on behalf of our pet, Yet we meekly accept it for ourselves. When Prof. Thomas, a Consultant Surgeon, talks about “fortress surgeries”, I know exactly what he means. If I phone the vet for an appointment, one of the girls talks cheerfully, asks how the dogs are, and sounds totally sympathetic when I say one is sick.

Phoning my GP, the Receptionist is totally disinterested, and when offering me a long-distant appointment, this is done with a ‘take-it-or-leave-it’ attitude. Of course I have to pay up front to see the vet (£25 for a puppy check, £45 for a consultation for my dogs), but we all pay for the NHS – and apparently our GPs are the third-highest paid in in the world (average £100,000 pa) after USA and Germany.

As Prof. Thomas writes, “despite valiant efforts of some GPs … they have been severely criticised for their performance during the pandemic”. Come to think of it, one hasn’t heard of any vets insisting on telephone appointments – Fido wouldn’t stand for that!

Perhaps because we have to pay for Fido to see his vet it makes for better service. If we aren’t happy, we can complain to the receptionist. Yet when we go into our GP’s surgery, can you imagine complaining to fortress reception, lined up behind the surgery desk, ready to repel boarders? I think not.

When I was a teenager one of my boyfriends had an eminent vet for a father. He looked after the Queen’s horses and was often called abroad to examine famous racehorses. When I was not feeling too good, I frequently asked his advice, and remember him once saying “this works for Bovine Mastitis, so it should work for you”. I knew I was in good hands as Liverpool General Hospital called him in whenever they had a case of Anthrax amongst farmhands.

So, next time I am told “the doctor can’t see you until…..” I shall seriously consider if it would be a good idea to speed things up and make an appointment with the local vet.

Verite Reily-Collins PSN Trustee, Health Journalist and owner of www.aftercancers.com

How to manage and survive with Post Polio in the latter years

Strength gradually decreases with advancing years, but this is even more pronounced with people who have PPS. A person who has had polio is already using their muscles at the optimum level and even a small loss of muscle can cause a significant effect. Walking with crutches or braces may tax whatever muscle strength they have, but losing even a small part of that muscle power may be more noticeable and enough to stop them from walking. That can be a drastic change in function.

One of the theories of increasing muscle weakness in PPS is that Polio caused the death of certain nerves and the muscles which have lost their nerve supply are taken over and supplied by surviving nerve cells. These nerve cells are doing extra work and are more vulnerable to overuse. This combined with normal aging has a dramatic effect on strength. It is therefore very important not to overuse polio effected muscles.

Strong muscles are needed to keep bones strong, and lack of muscle is almost always associated with thin fragile bones that can break more easily than normal bone. The terms osteopenia and osteoporosis are used to describe these weakened bones. The bones that can break most often are the vertebrae, the hip and the arm bones. Vertebral fractures are usually discovered when someone complains of back pain. Fractures in arms occur when a person is trying to protect themselves from falling using their hands. Hip fractures are also the result of falls. Preventing osteoporosis is vitally important, because immobilisation can lead to further weakness. There are several treatments available, Calcium tablets with vitamin D (Adcal), weekly Alendronate, or yearly infusions of Zoledronate are just a few. Smoking and drinking alcohol should also be avoided because they speed up bone loss.

PPS symptoms of abnormal fatigue, muscle and joint pain, new muscle weakness are often caused by many years of overuse. It is important to make changes in daily life to ensure preservation and protection of muscles and joints. The help of family members should be involved, as well as assistive devices, like callipers, and using a computer chair or hair dressers’ stool to move around in the home, installing a stair lift and using electric scooters outside. It is also important to recognise that with decreased activity the amount of food intake should also decrease otherwise the increased weight will overload muscles and joints, leading to further fatigue, pain and muscle weakness. Exercise for weight reduction is not an option for those with PPS. The only option is reducing the food intake. Daily or weekly weight checks are important and a dietitian’s help may be needed in the last resort.

Muscle weakness can also be the result of disuse. Too much sitting, being in a plaster cast after a fracture, being in bed with flu, after surgery or an illness causes deconditioning of the muscles. This happens more quickly with people who have PPS and they also recover more slowly than others with normal constitution. A gentle exercise program in a graduated manner can help recovery. The intensity and amount of exercise must be tailored to the individual as polio survivors are all different.

Polio survivors often have difficulty in tolerating cold temperatures especially in the extremities due to lack of muscle contractions leading to bad circulation. Several layers of clothes can help but only in the short term, until the cold air gets through. Massage is useful as it encourages the circulation, but care must be taken with heat sources to avoid burns. There are battery heated insoles that can be placed inside shoes or boots. They keep feet warm for several hours. There are also electrically heated foot warmers that can take booth feet and warm them up while watching the television. Once the feet get very cold the temptation to warm them up quickly by putting them into hot water must be avoided because it will result in nasty, itchy chilblains. I know from personal experience how hard it was to get rid of chilblains over many years. Once I had them, they kept coming back each winter.

By Zsuzsanna Snarey – Polio Survivors Network Trustee

Meal Substitute Idea

Next time you can’t face the thought of spending time slaving over a hot stove, a Dietician suggested this simple milkshake, using Ovaltine or Horlicks as a meal substitute:

This makes a nutritious alternative to a meal, when you just can’t face the thought of cooking. However, to ensure you get all your nutrients, eat some fruit and/or vegetables along with your milkshake . The old stand-by Ovaltine or Horlicks has lots going for it, and if you make the drink with milk, not water, it contains lots of protein. This drink can be made cold in the summer, or with hot milk in winter, and if you whizz it up in a food processor it’s lovely and frothy.

Ingredients:

• 2 heaped tablespoons (30g) dried skimmed milk powder

• 5 heaped teaspoons (25g) Ovaltine Original Add Milk powder or 5 heaped teaspoons (25g) Horlicks

Malted Food Drink powder

• 1/3 pint (180ml) hot or cold full-fat milk (or used skimmed or semi-skimmed if you prefer)

Directions:

 Mix dry ingredients together in a glass

 Gradually mix in hot or cold milk & stir well

This 220ml milkshake provides 320kcals and 17-19g Protein

Handy feature on Apple iPhone

You may be aware of the Health app on Apple iPhone. It can be very useful for adding an emergency contact and healthcare information. Here is a very brief guide to setting it up on your iPhone. These instructions are for iOS 17 so please see the Apple support website for other versions as some may vary a little.

For additional support see Apple’s official guide: https://support.apple.com/en-gb/105072

Setup / Create your Medical ID:

 Open the Health app

 Tap your picture at the top right, then tap Medical ID

 Tap Get Started or Edit, then enter your information

 Under Emergency Contacts, tap Add Emergency Contact, then add your contacts. In some

countries, after an emergency call ends your iPhone alerts your emergency contacts with a

text message and sends your location (if available).

 Tap Done to finish

View your Medical ID:

 To view your Medical ID from the Home Screen, touch and hold the Health app icon, then

choose Medical ID.

Don’t Do This, Do That

by Millie Malone Lill

You know how we polio survivors are. We have overcome so much in our lives that we think we are invincible. Well, we are. Sort of. We need to know how exactly to play the game to insure that we win. It’s not cheating! It’s strategy. First we need to define the goal. To beat the Polio Dragon and finish the game as close to intact as possible, that’s the goal.

Do Not: Try to downplay your level of disability to avoid making others uncomfortable. Do: Simply tell it like it is. “If I go shopping with you today and then out to lunch and maybe a movie after that, I will be in bed for two days. I would love to have lunch with you, though. Maybe we could have a pizza delivered.”

Do Not: Avoid asking for help when you need it. Do: If your store offers delivery, take advantage of it. If your neighbor is making a trip to the store and offers to pick up your needs, smile and say Thank You. You can call your order in, perhaps, so your friend doesn’t have to do anything more than pick it up and drop it off for you.

Do Not: Get your feelings hurt when others do not understand PPS. I’ve had PPS for over 40 years and I still don’t quite get it. Do: Explain in simple terms that you have a neuromuscular disability a little bit similar to MS. If they ask for details, say it is progressive but can be managed if you are careful. That’s usually all it takes.

Do Not: Stress yourself by worrying about what other people will think if they see you using a walker, cane, crutches, wheelchair or whichever tool you need to live your best life. Do: Realize that what other people think of you is not your business and also that the chances are they aren’t thinking about you in the first place.

Do Not: Beat yourself up by thinking of what you used to be able to do versus what you can do now. Do: Try to be grateful that at one time you could do all of that. Even able bodied people find that time and age take away some abilities.

Do Not: Waste time being angry or resentful at your disability. What good does that do? You will still be disabled, but you will also be angry and upset. Do: Find things in your life that make you happy. I highly recommend writing a gratitude list every evening. Every day contains something that you are grateful for if you take the time to look for it. I find ending my day with gratitude makes falling asleep much easier.

I’m no guru. I am an elderly woman dealing with PPS the best way I know how. Although having contracted polio 78 years ago, I have managed to have a pretty decent life. I try to find humor wherever possible and I maintain an attitude of gratitude. My Facebook friends have brought me comfort and joy as we share our lives, our sorrows and our triumphs. To me, the secret of beating that Polio Dragon is to thwart his attempts at making me miserable. I find things he can’t control and my life is a good one.

Global Polio Eradication Initiative (GPEI) – a brief review of 2023 and full focus on 2024

As the year draws to a close, efforts intensify against the virus in 2024

The Global Polio Eradication Initiative has two goals laid out in its current strategy: to interrupt all remaining transmission of endemic wild poliovirus type 1 (WPV1) and to stop all outbreaks of variant poliovirus type 2 (cVDPV2). 2023 was a critical year for progressing on each of these, and while our urgent and diligent work to end polio must continue into 2024, the GPEI achieved incredible things in the past twelve months.

Continuing work in endemic countries

Despite significant geo-political and environmental challenges in the two remaining WPV1- endemic countries, Pakistan and Afghanistan, the polio programme has continued to reach greater numbers of children with polio vaccines.

Wild polio transmission was beaten back to just a handful of districts in eastern Afghanistan and the southern area of Khyber Pakhtunkhwa province in Pakistan. In both countries, efforts are increasingly focused on reaching and vaccinating the last remaining ‘zero dose’ children – children who have received no vaccines of any kind. The number of these missed children continues to dwindle, with the success of improved collaboration with the national immunisation program, new efforts like Pakistan’s Nomad Vaccination Initiative and focused vaccination activities at border crossings between the two countries. Just one family of the virus remains endemic in each country, and coupled with this increasing geographic restriction, the situation resembles the end of wild polio eradication efforts in former virus hotspots like India, Nigeria and Egypt.

In addition, after a wild poliovirus outbreak that was confirmed in southeast Africa in early 2022, neither Malawi nor Mozambique has reported a WPV case since August 2022 thanks to a concerted subregional emergency response across five neighbouring countries. We are hopeful that this outbreak will be officially closed in the coming months, affirming that countries have what it takes to protect children from this devastating disease and keep wild polio out of Africa.

Progress on variant polio outbreaks

Thanks to the novel oral polio vaccine type 2 (nOPV2), strong political commitment and community-based efforts to reach more children with the vaccine, the number of cases of variant poliovirus type 2 (cVDPV2) continued to decline in 2023.

Nearly 1 billion doses of nOPV2, a comparably safe, effective, but more genetically stable version of the existing type 2 oral polio vaccine (mOPV2), have now been administered across 35 countries, protecting millions of children from illness and paralysis.

Emergency response to variant polio outbreaks is continuing, notably in the most consequential geographies for the programme—where children are at the highest risk of encountering and spreading poliovirus. In northern Nigeria, for example, variant polio cases have fallen by 90% since a peak in 2021, thanks to concerted commitment from government, unique community programs to improve the reach of vaccines and the extensive rollout of nOPV2. Across these consequential geographies, the programme will continue to focus on increasing access, acceptance and campaign quality, which have helped make incredible progress in Nigeria, and continue to innovate until we end polio for good everywhere.

Finally, In September 2023, after a massive vaccination response in the shadow of ongoing war, Ukraine officially stopped its outbreak of type 2 variant polio that began in 2021. New York, London and Jerusalem, where high-profile outbreaks began in 2022, have not detected the virus in recent months. Still, the emergence of polio in these areas is a reminder that as long as poliovirus exists anywhere, it is a threat to people everywhere.

A global effort

Most importantly, thanks to the efforts of the GPEI and its partners, health workers vaccinated more than 400 million children in 2023, preventing an estimated 650,000 cases of paralysis from polio and saving the lives of up to 60,000 children. Building full, healthy futures was at the core of Rotary International’s mission when it began this fight to end polio for good in 1985, and when the GPEI was launched in 1988—35 years ago.

This year, the Independent Monitoring Board (IMB) conducted a rigorous mid-term review of the GPEI’s progress towards its strategic goals. This welcome counsel is already helping inform and guide the GPEI’s own ongoing analysis and strengthening of its strategic approaches to achieve a polio-free world, as the programme published its initial response to the mid-term review, under the guidance of the Polio Oversight Board (POB).

Achieving and sustaining a polio-free world has proven harder – and taken longer – than anyone could have imagined. But making history is never easy, and we are confident that together we can eradicate a second human disease from this earth, and build stronger, more resilient health systems along the way.

2023 has firmly set the stage for success. With the complexities of the world today, this programme still inspires to bring about the very best in our humanity.

Thank you to all who have contributed to this effort so far and continue to do so. Let us double down and make the dream of a polio-free world a reality

https://polioeradication.org/news-post/gpei-a-brief-review-of-2023-and-full-focus-on-2024/

What Does a Person Experiencing Post-Polio Look Like?

A great resource listed by Polio Australia Inc and hosted on YouTube (copyright Polio Australia Inc 2023) This is the fourth video in a series of ten videos discussing post-polio conditions, this video presents:

 What features do and do not suggest a person has

been affected by polio

 Visible and invisible signs and symptoms of postpolio

 Polio affected individuals may or may not identify as

polio survivors

 Some individuals with a history of polio may not

wish to share their experiences

To watch go to: http://tinyurl.com/2ve8sbm3

Toni Writes …

How are you? I hope the start to 2024 has been ok for you. First of all, I want to say a huge thank you for all your kind donations and ongoing support. Having just completed the end of year financial report, it really it is clear to see that it really does make a difference to Polio Survivors Network. Thank you so much.

Talking of end of year reports, the 2024 Polio Survivors Network Annual Trustees Report (covering January to December 2023) is now available. Please contact me (details below) to request a copy. This report will also be discussed at the 2024 Annual General Meeting to be held in the summer.

As you will have seen we have included with this edition of Post Polio Matters, a tool which we hope will be useful for when you are attending appointments. We know how important it is to get the most out of every appointment. We would love to hear any feedback you may have.

In our last newsletter we featured a book entitled ‘Surprised by Love: Love Stories by Polio and PPS Survivors’ edited by Millie Lill and illustrated by Ellen Riddle. We have a copy available for our members and are also happy to post overseas (as we know our USA members may not have been able to order via the Amazon link in the last newsletter). Please contact me with your name and address if you would like this copy.

Please remember too that we have photocards available to purchase which will help raise money for Polio Survivors Network. We currently have two beautiful designs (Polio Survivors Network collaborated with a local photographer) available and will hopefully add more as sales grow. A6 size blank photocards £1.75 each or £6.00 for 5 (inc P&P). Please contact me to purchase or click this link for more information

https://poliosurvivorsnetwork.org.uk/new/greeting-cards/

As part of our ‘lives lived with healthcare lessons for the future’ project we would like to ask our readers what legacy would you like polio survivors to leave? What would you like to let people know so they can learn from polio for the future? We hope we can include your comments in an upcoming newsletter.

Take care

Toni x

From our readers:

I hope this will be of interest to your readers. Hello, my name is Stuart Barnett. I was born in December 1946, I contracted Polio (then known as Infantile

Paralysis) when I was 9 months old. I was living with my parents in a village called Navenby, near Lincoln.

Polio left me with my left leg thinner and shorter than my right leg. My parents were told that I would never be able to walk, but after wearing callipers I eventually learned to walk although I had to wear a built-up shoe on my left foot, for all of my school life.

After leaving school I worked with horses and learned to ride. I then started a job as a Painter and Decorator and eventually started my own business. This I did for 37 years and finally retired at 67 years old and have been retired for 10 years.

I met my wife Susan and got married when I was 23 years old. We then had 2 children and now have 5 grandchildren.

I consider myself very fortunate as during all my working life I had no signs of Post Polio Syndrome. I led a very active life, both in my working life climbing ladders etc, and in my hobbies which included Fell walking in the Lake District, where I was able to climb many of the higher Lakeland Fells and also enjoyed playing tennis. I am now 77 years old and have no sign of Post Polio Syndrome. I am able to lead a very full life and still walk with my working Cocker Spaniels.

I consider I am very fortunate to have been able to lead such a normal life and enjoyed doing a physical working job and enjoy my physical hobbies. I sincerely hope not to be affected by Post Polio Syndrome in the future and to carry on with my Fell Walking and Dog Walking.

Wild poliovirus cases have decreased by over 99% since 1988,

from an estimated 350 000 cases in more than 125 endemic countries then, to just two endemic countries, Pakistan and Afghanistan

(as of October 2023)

– World Health Organisation (WHO)

A couple of films worth watching …

Lives Well Lived

An inspirational documentary by Post Polio Victoria Inc. Australia featuring three polio survivors. It is listed by Focus on Ability Film Festival and hosted on YouTube. https://www.youtube.com/watch?v=aToqAEdzuYs

Hidden Figures in Polio History

We want to share with you a link to a film by a disability commentator and activist (listed by Rotary and hosted on YouTube). It explores the history of a hospital created for the black American community and we think you’ll be interested to learn how advocacy played a key role in bringing it into existence. https://www.youtube.com/watch?v=GHH1CuyCHGY

Managing Pain: Insights from the Polio Survivors Network Community

Being a survivor of polio can pose unique challenges and managing pain can become an important aspect of maintaining quality of life. Polio survivors, like anyone else, may experience pain for various reasons, but the likelihood of pain as a consequence of surviving polio is higher. Even if you’ve been diagnosed with post-polio syndrome (PPS), it doesn’t always mean that the syndrome is the direct cause of the pain. There could be other reasons for the pain, and it’s essential to explore and understand those factors to effectively manage and address it. An accurate medical assessment is needed – we know that this can be a challenge.

Members of Polio Survivors Network have shared their experiences on what has worked for them in managing their pain. Many agree that finding a careful balance between physical exertion, mental stress reduction, and using pacing and resting techniques when it comes to daily activities has been very beneficial.

Understanding the multifaceted nature of pain in polio survivors, here is a list of some of the practical tips reported by members which they have found to work for them:

• Moist Heat & Light Massage – Application of moist heat and light massage to alleviate

• tension in affected muscles.

• Cold Therapy – Use of ice packs on painful areas to reduce inflammation and numb localised

pain.

• Chiropractor – For neck, back, or joint adjustments for improved musculoskeletal alignment.

• Acupuncture – Traditional acupuncture and electro-acupuncture (some have found just on

the ear lobe has worked) for pain relief.

• Herbal Dietary Supplements – Members state use of ginger, pycnogenol (extracted from

pine bark) and/or cayenne pepper. As with any supplement, individuals should consult with

their healthcare provider before using any supplement, especially if they have existing

health conditions or are taking medications.

• Addressing Sleep and Breathing Difficulties – ensuring enough sleep in the various stages

required and ensuring proper oxygen intake.

• Assistive and Adaptive Aids – Using various aids to minimise stress and strain on muscles

and joints.

• Anti-Inflammatory Drugs and Medications – Use of non-steroidal anti-inflammatory drugs

(e.g. ibuprofen, aspirin) and prescription drugs for inflammation. Anti-depressant

medications for nerve pain and sleep disturbances. Occasional and careful use of muscle

relaxants (these may increase fatigue and decrease muscle strength). HRT especially for

individuals with low hormone levels post-menopause or hysterectomy. Even if you’re using

pain relief medication, it’s important to manage the pace of your activities to prevent

excessive strain on your muscles and joints.

• TENS (Transcutaneous Electrical Nerve Stimulation) machine.

• Referral by General Practitioner (GP) to a Pain Clinic

As ever, ensure that you always seek professional medical advice before initiating any changes to your healthcare routine. Every individual’s health is unique and what works for one person may not be suitable for another. Your GP or healthcare provider can provide personalised guidance based on your specific health needs. They can assess you for any potential medication interactions or how any of your existing health conditions should influence your choice of pain management strategies.

More information on pain, medication and Polio Survivors:

– British Polio Fellowship https://www.britishpolio.org.uk/_files/ugd/149bdd_044f059c9c5b4f29a7bd1ae8916b4d7c.pdf

– NHS Advice https://www.nhs.uk/conditions/post-polio-syndrome/

– Mayo Clinic www.mayoclinic.org/diseases-conditions/post-polio-syndrome/diagnosis-treatment/drc-20355674

Useful Resources

• International Ventilator Users Network

www.ventnews.org

• Disabled Motoring UK

www.dmukdiscounts.co.uk

• Pain UK

www.painuk.org

• National Voices

www.nationalvoices.org.uk

• Neurological Alliance

www.neural.org.uk

• Rare Disease UK

www.raredisease.org.uk

• End Polio Now – Rotary International

www.endpolio.org

• European Polio Union

www.europeanpolio.eu

• Post-Polio Health International

www.post-polio.org

• PA Polio Survivors Network

www.papolionetwork.org

• Polio Quebec

www.polioquebec.org/eng/

• Polio Survivors of Marin

www.facebook.com/groups/163909760771171

• Atlanta Post-Polio Association

www.atlantapostpolio.com

• Nebraska Polio Survivors Association

www.nepolioorg.ipage.com

• Polio Australia

www.poliohealth.org.au

• Word-Wide Fellowship of Polio Warriors

www.poliowarriors.org

Once I Could Run

Polio Survivor Charles Mobley tells his story of resilience.

Embark on the captivating journey of ‘Once I Could Run,’ where you’ll immerse in Charles’s carefree childhood adventures in a quaint Mississippi town, sharing the impactful moments of his polio diagnosis and treatment in Warm Springs, Georgia. Witness his unwavering determination to conquer physical challenges, while applauding his notable business accomplishments, and join in celebrating his heartfelt personal milestones.

Once I Could Run is a remarkable evolution from marriage and parenthood to Charles’s esteemed role as an engineering professor at UNC Charlotte.

Available to purchase on Amazon:

https://www.amazon.co.uk/Once-Could-Run-Charles-Mobley/dp/B0CL6NMRYL

Did you know? Squirrels are one of the most important animals for helping the spread of oak trees. They store acorns in the ground but only recover around 70 per cent of them, allowing the forgotten acorns to grow into healthy trees. The biggest species of squirrel is the Indian giant squirrel which grows up to 36 inches (1m) long. The smallest is the African pygmy squirrel which is a only 2.8-5 inches (7-13cm).

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

Trustee – 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

PSN Admin, Enquiries and Website – Toni Dunlop 07480 110334 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, UK Email psnadmin@poliosurvivorsnetwork.org.uk

Phone us on 07480 110334 and we will ring you back when we collect 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.

…because WE’RE STILL HERE!

www.post-polio.org

A useful new resource

We know that getting the most from your health appointments is very important so we hope that our new tool will assist you.

A copy is enclosed.

If you would like further printed copies please get in touch – see page 15

Post Polio Matters Volume 11 Issue 4 Read More »

Post Polio Matters Volume 11 Issue 3

Polio Survivors Network Newsletter

October 2023 — Volume 11 Issue 3 of 12 [123]

Lincolnshire Post-Polio Library100+ articles

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

WE’RE STILL HERE! WEEK — October 8th to 14th 2023

HEALTH PROFESSIONALS – How we can help you?

POLIO SURVIVORS are a NIGHTMARE

PART THREE

This publication is provided free thanks to the generous donations of our lovely members.

Thank you so much!

Page 2	Contents, Donation acknowledgements
Page 3 – 4	Editorial – Hilary Boone, BPF PPS Day 22 October 2023
Page 5	Toni Writes, From Our Readers
Page 6	My Experience by Zsuzsanna Snarey, Message From Our Chair Simon Parritt
Page 7 – 8	Thank heavens I caught polio in the ’50s by Verite Reily-Collins, Surprised By Love
Page 9	My Experience by Sylvia
Page 10	John Hopkinson Experience
Page 11 – 12	Mike Locke’s Experience, My Experience by Maureen Chapman
Page 13	My Polio Story by Dianah King
Page 14	Neill Jupp’s Experience, Resources from Neena Bhandari
Page 15	My Experience by Eddie Clark
Page 16 – 17	76 and Still Adapting by Marion D Rushing III
Page 18	My Polio Experience (Anonymously provided)
Page 19	My Polio Story by Michael Kossove
Page 20	My Short Story by Fred Naggs, Urama Emmanuel Experience
Page 21	Gov.uk polio research update, My Voice Matters – Shaping Our Lives, Medical Advances as a Result of Polio – Post Polio Syndrome Advocacy
Page 22	Patient Worthy, Polio & Anesthesia, Useful Resources
Page 23	Management Committee Information, Links to articles most accepted by NHS professionals
Back page	Rotary End Polio Day, Making a Difference Cards

Donations and Charity Incentives Paid(since last newsletter)
Donation from VG	200.00
Donation from FM	12.50
PayPal Giving Fund	60.00
Total	£272.50

PayPal donate link:

https://bit.ly/2KzyAyE

Editorial by Hilary Boone

Polio Survivors are a nightmare – Part III

Well guys and gals I thought as polio survivors we can be a nightmare for health professionals in areas that have little knowledge of polio it its first instance and also postpolio syndrome. I wonder how many people with other conditions are also experiencing similar situations?

I/We, members and colleagues are contacting each other to discuss the fact that we are now receiving a far less than adequate health service compared with what we used to receive pre-Covid. Pre-Covid we might have had to wait months but we would get face to face appointments. We would receive an examination with time to discuss a few points. We would be referred for tests or to see other health professionals. There were long delays and many of us struggled to see health professionals that had enough knowledge and understanding of our PPS issues but we eventually did get to see someone.

Having experienced face to face assessments over many years at the Rehabilitation Department I wonder how it is that a new doctor who has never seen me before is going to assess me by a video call next month? Phone/Video Call Appointments. How many of you have experienced these? Have any of you been sent a format of the appointment to complete so you can prepare answers to questions and if you need to demonstrate a new issue how you can do this? Please share with us anything that you think would help more members.

We can have every other condition as well as PPS and many of us do. Our Trustee Verite Reilly-Collins [a polio and cancer survivor] runs aftercancers.com which contains a lot of helpful information and many a smile over her comments about some politicians remarks. I am sure many readers also belong to other charities/organisations seeking help for their issues. If you are getting good support from another charity we would love to add this information to a database?

However, are we more than just an NHS number with coded medical conditions? If we have never met or been examined by the health professional on the phone/video call how do we ensure that we provide enough information to get the best advice/treatment? How much more difficult is this when the condition under review is not related to a polio/post-polio issue but the fact that we are a polio survivor and having to manage our life a certain way is very relevant? I wonder how many of our members – and other polio survivors have or are already experiencing issues that are not being realised as important information needed by the new department health professional for their assessments/treatment regimes.

You receive another diagnosis and hopefully are given information or advised where to go get more information. You read down the list of possible issues and see the word fatigue but until this week I had not wondered if this fatigue would run alongside my PPS fatigue or add to that level? My PPS fatigue starting nearly 28 years ago. I made a list of symptoms from each condition. It was a long list and not easy seeing it in black and white. I was surprised how many symptoms listed were in both conditions.

The management of PPS is by pacing and resting actions and using aids/assistive devices and physical help which I have been doing for a couple of decades. I have gradually added in using more aids, asking for help for part of the tasks, employing Carers to take over some of the tasks. All I needed to do was expand on this and I would manage. Now I find that the percentage of my PPS fatigue before this new condition was added was about 60%. Then I realised since adding another condition over the last eight months how much more help I had been given by our Carers and it was about another 20%. If I did not realise this how would my new health professional understand unless I explained it to them.

Using Aids and Assistive Devices

With PPS we use many different aids and assistive devices but this will mean that we do actions of daily living a different way from the norm. Having met so many polio Survivors over the years I have seen some amazing methods of performing actions of daily living. I got a picture in my mind as I typed this of a colour co-ordinated outfit, electric wheelchair user Linda Donahue at a PPS conference. We started to discuss how do you get in and out of your wheels or up and down off an electric scooter. Linda smiled back and said ‘Well I cannot call it walking but I can get from my chair to the table to get another dessert and back again.’ I could have phrased it better but I said “Really?”. Laughing Linda got up and bent forward took a few lurching actions to the table and back again with another dessert. I was amazed and those that

know me won’t be surprised to hear that I told her I had seen a duck with one leg do better than that which caused even more laughter.

For some years my spinal curve has increased and currently when I stand I am leaning right over almost looking down at the floor. Until my fall in July 2022 I managed with a walker in the home and my electric scooter when out. Now I have to use an old second hand electric wheelchair and hope it wont be too many more weeks before Wheelchair Services deliver the one I was assessed for last year. How many of you attending appointments on electric wheels have been asked if this impacts on how you do actions of daily living that might be relevant to your new condition?

Aging as a Polio Survivor

I am sure that many readers will agree that aging as a Polio Survivor is not easy and not what we expected and adding in one or more new conditions makes it even harder. Before this sounds all downhill…..

Polio Survivors in our past pre PPS issues are renowned to be so strong willed and determined to succeed, do not need any help type folks. Do not tell us we cannot because we will find a way to prove you wrong. Members – we would love to hear how you achieved things that were never expected of you from qualifications right through to having a family.

Many years ago I met Irish Polio Survivor Jim Costello who contracted polio at the age of 15 at a rugby match. He spent a great deal of his life in an iron lung in Cherry Orchard Hospital and even talked to me one night whilst in it operating the phone with his feet. As successful business man he was able to walk round the Conference but had to have someone with him to be his arms. Amazing man who was instrumental in much of the work of the Post Polio Support Group (now Polio Survivors Ireland), the organisation he helped to found. What are the most important things you achieved?

Counselling how it can help

I booked a counselling session and I was able to – for the first time this year – go through all the different problems that I/we had or were being forced on either/both of us by other agencies/people. I never stopped talking for over half an hour and it really helped just to get it all out there. When you are a Carer to another disabled person, or maybe you live alone, you cannot always do this. Then I was helped to put all this into perspective. What was really important to deal with now and what could be left until later? Who and what did I think could help me put this into practice? I had desperately been trying to keep my ‘Leaning Tower of Pisa’ issues upright and the strain was overwhelming me. Now the blocks were neatly laid along the ground and it would be up to me how and when I rebuild my tower.

Post Polio Syndrome Day 22 October 2023

This year more buildings than ever will be illuminated in the

British Polio Fellowship charity colours to mark Post Polio Syndrome Day.

Want to get involved?

Contact the BPF Marketing and Campaigns Manager on 01923 281 091

www.awarenessdays.com/awareness-dayscalendar/post-polio-syndrome-day-2023/

Toni Writes …

Thank you so much for responding to our ‘lives lived with healthcare lessons for the future’ project which hopes to capture the experience of as many polio survivors as possible. You will spot many experiences in this edition of Post Polio Matters.

We know how invaluable it is to read about the experiences of others in similar situations to us, we can learn new ideas, empathise, avoid pitfalls and be forewarned. So we are asking if you haven’t already done so please could you think about sharing some of your experiences. We can’t wait to hear your story. We are also happy for them to be anonymous. It can be as long or short as you prefer (one or two pages makes for easy reading) and can include whatever aspects of your life you wish to focus on (your recollection of having polio, your life after polio, things that you have learned which are unique to polio survivors, warnings for future generations, etc).

Send your story by:

Email to info@poliosurvivorsnetwork.org.uk Video file upload to https://bit.ly/3D8MQKQ Audio only file upload to https://bit.ly/3D8MQKQ

Phone me on 07480 110334 and we can arrange an appointment for me to type up your story as you talk

Writing to us at Polio Survivors Network, PO Box 954, Lincoln, LN5 5ER

We can even organise a Zoom chat where I can record your story (audio or video) and I don’t have to be in the virtual room with you if you’d prefer

By providing your experience to Polio Survivors Network you consent to it being shared in our newsletters, on our website and in our digital library – this consent can be withdrawn anytime by contacting us.

Take care

Toni

From Our Readers:

Important service which offers good advice to those of us living with PPD, very best wishes. Thanks for sending me the newsletter which I have enjoyed reading.

Thanks for the newsletter, it was very interesting and I recognise many of the issues discussed. I noticed getting up from the floor was mentioned, this was a major problem for me and I have found that an electric bath chair solves my problem. They are flat when in the down position, easy for my wife to move to me wherever I fall (even in the garden) and is battery opened (rechargeable). My wife gets it, I move onto it, it’s only a few inches high in the down position then my wife operates it, keeping the button pushed until it’s fully up. In the up position it’s like being on a chair and therefore much easier to standup from. I bought it from Amazon for about £300. Anyway I thought I share this with you.

Can you help? I caught Polio in 1945/1946 ,which paralysed me from the waist down. I was admitted to Cuddington Isolation Hospital in October 1946 and discharged 6/7 weeks later. I do remember being in a very long ward with a lot of other young people some in iron lungs; I was lucky as I had a cloche over my lower body. I am struggling to find my old health records after emailing and telephoning many NHS departments. Any advice would be much appreciated.

My Experience

by Zsuzsanna Snarey, PSN Trustee

I was eight years old when I was diagnosed with polio in Hungary. After our failed attempt at escaping to the west I was in an orphanage where I caught the polio virus while my mother was in prison. When she was released, she set about rehabilitating me with a daily regime of exercises. It took a year before I was able to take a few steps with elbow crutches but eventually I was able to attend school.

When I was 14, I had a muscle transplant on my right foot and the following year my left ankle was fixed because it was completely paralysed. I was still in plaster when the Hungarian revolution broke out and we took our chance to leave Hungary.

Once in England I had some physiotherapy in hospital and started school. After passing A levels I went to study Chemistry and met my husband. We married and I worked in research for three years. I was able to walk with one stick but only needed it outside.

When my first daughter was born, and I had no trouble carrying her. Two years later I gave birth to her sister. At the age of 30 I was at the peak of my abilities. My third daughter was born 8 years later. I was a part time science teacher and carried on teaching for 26 years, carrying heavy books, standing in classrooms, and walking without a stick.

I was not ready to retire at 60, so I trained as a chiropodist and left teaching. At first, I was visiting patients as well as looking after them in my surgery, but gradually, I found carrying my heavy case even though it was on wheels difficult. I could work more efficiently from home. But sitting most of the day took its toll. In the beginning I would greet people as they arrived, then I left the front door open with a notice to invite them in, which meant that I did not even have to get up between patients.

I hardly noticed the deterioration over the next sixteen years as a chiropodist although I had to have first one then two callipers to stop the hyperextension of my knees. I gave up work when we moved to be near our grandchildren and now, I use two sticks indoors and an electric mobility scooter outdoors.

I can still drive my Motability car, but I have gradually lost the ability to use the stairs since I had a stairlift for the past thirteen years. Muscle loss is part of getting old and I am finding it more difficult even to stand up and to walk. My balance is very bad, and I fall easily. I have a small hairdresser’s stool on wheels in the kitchen which allows me to carry heavy pans with two hands, and to hoover and wash the floor. We have smooth floors downstairs so I can move easily. I have a stool in the shower which I take with me when visiting friends.

I shall be 82 next week and so I should be content with my life so far. I don’t know what the future will bring but I shall cope with it.

MESSAGE FROM OUR CHAIR

Busy Times . . .

As many of you know living with PPS and aging with other issues isn’t exactly a walk in the park. Recently I have been dealing with treatment for high risk prostate cancer and being asked if I wanted to stop as it might be worsening or accelerating my PPS symptoms – or is it at 73 just the PPS muscle loss? No one knows which it is, so it is up to me to choose what to do!

Also I have been trying to sort a new NHS wheelchair whilst our 17 year old dog, Pumpkin, now needs more care support from my wife, Alexa than me. Oh and not to mention our animals, 3 birds, a cat and another 3 year old dog!

So please excuse my lack of contribution to the last two issues. I am working on an article about my first months of polio and hopefully it will be in your next issue. Until then I wish you all well and hope we can find both comfort and community in sharing our life experiences as polio survivors.

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

Chartered Psychologist, HCPC Registered Counselling Psychologist & Chair of Polio Survivors Network

Thank heavens I caught polio in the ’50s!

by Verite Reily-Collins, a PSN Trustee, Health Journalist and owner of aftercancers.com

If I had caught it today, I can’t imagine the current NHS being able to cope! Today’s superior graduate nurses wouldn’t be able to cope with the high level of care we needed around the clock.

In the ’50s, the NHS really was ‘the envy of the world’. Every Friday my surgeon, J.I.P. Janes, would sweep down on his ward round, heading up a swarm of foreign medics come to observe (and pay) to learn from Stanmore National Orthopaedic Hospital. Today, the only NHS hospital where I come across overseas doctors here to learn from the NHS is the Royal Brompton Hospital.

Recently, I had a long stint in our local hospital, the 1,000-bed John Radcliffe. A dirty injection needle into my eye had made me blind. Looked after by trainee nurses from Oxford Brookes, I was interested to see how today’s nurses performed. At the start, they impressed me with their competence taking my blood pressure – every four hours they would wheel in a machine and plug it in – all going very smoothly – then read off the figures produced.

Then things started to unravel, the readings suddenly went sky high and I was alarmed – the nurses hadn’t a clue what this meant and weren’t about to do anything to discover what these showed. Today’s nurses aren’t expected to be curious, and I began to understand how the lack of curiosity enables scandals like the Lucy Letsby case, and many others, go undetected for so long.

Eventually, it was an Agency nurse who let the cat out of the bag; apparently, the Ward sister in charge of drugs had forgotten to order blood pressure tablets, and others on the ward had the same symptoms – but I was the only one who queried readings.

I remember the cheerful way the nurses at Stanmore coped with our problems, however basic. Catching another hospital bug this time I threw up all over the floor. My bell summoned a nurse, who gave a horrified scream and told me “You’ve dirtied the floor. I need to call a cleaner to clean it up”. Had no-one told her nurses have to deal with life’s basic problems, however gross?

Doctoring today is by remote control. The nurse takes a photo of you, sends it to the doctors, and back comes their diagnosis. This was taken to the limits when one Friday Dr. Joel (it’s all First names in today’s NHS) actually appeared in my room, saying he had come to take some blood tests. He wasn’t much good and gave up, saying he would be back on Monday.

Monday produced a cheerful Dr. Leo, who popped in to give me the good news that my blood test results were fine and was rather put out when I queried his diagnosis. Off he disappeared, never to be seen again – this was the norm in my ward; ask a nurse a question, and off she would go to some distant hidey-hole lost forever.

|One does wonder why some nurses bother to go into the profession today. When I was admitted to the ward, I was delighted to be shown into a single room (being highly contagious had its benefits). I waited for the Ward Sister to come and ‘welcome’ me – but no one came. After a while, it became obvious that infection control training was sadly lacking in those supposedly looking after me, so I fumbled my way down the corridor to find Sister’s office.

Once there, a voice identified itself as a Sister, so I started – only to be stopped by the voice saying “but I don’t talk to patients”.

Sadly, it seems doctoring by remote control is going to be the norm in today’s NHS. Although warned by the Ophthalmology Dept that I was allergic to Preservatives, backed up by me when admitted (but who takes note of patients?) the dreaded Ward Sister in charge of drugs had ordered the cheaper version of the antibiotics prescribed for me. Yes, you’ve guessed it – full of preservatives. I wake up one morning with a face aflame and burning itching skin all over my body.

Nurse sends over a photo of some of the rash – but no doctor appears. Eventually back comes a message to say the photo showed my ‘rash’ was only a bruise! The Dermatology Dept. did send down some cream for me to use, which promptly got lost because Ward Sister didn’t write this down in the drugs book.

So, I self-prescribed and got my brother to buy some La Roche Posay products, which did the trick. I have booked a follow-up appointment at Guys Hospital in London, via the NHS Patient Choice scheme. It will cost the NHS as I will also need hospital transport, but this might make the hospital look more carefully at its procedures. Oh for the days of the caring nurse – I was very lucky they were around when I was being treated for polio.

I am NOT having a go at the majority of today’s nurses who look after me beautifully. Just moaning at the way nurse training is becoming dependent on ‘remote control doctoring’.

Verite Reily Collins veritegreenbee@gmail.com www.aftercancers.com

Surprised By Love: Love Stories by Polio and PPS Survivors

Edited by Millie Lill Illustrated by Ellen Riddle

Stories from polio survivors on how they encountered unexpected love.

Available at: www.amazon.co.uk/ Surprised-Love-Stories-Polio-Survivors/ dp/1718964382

My Experience – Sylvia

My name is Sylvia. I was born in 1948 and contracted Polio in 1950/51. I was living on the Isle of Wight and, I believe, along with my slightly older brother, one of the very first people on the island to catch polio. I lost the use of one of my legs. After a spell in the isolation hospital, I recovered and certainly within my childhood memory was symptom free.

I went on to be a keen tennis player for over 19 years, playing daily during the Summer and several times weekly on hard courts during the winter, until at about the age of 42 I noticed that my legs were changing. My right calf was diminishing noticeably, although was still strong enough to support me.

Eventually I could no longer reliably run in all the directions required for tennis and I gave up. I then joined a golf club and played 18 holes regularly, usually three times a week until I no longer had the stamina to walk the course and so five years ago, I gave up golf. I then started playing lawn bowls two or three times a week and short mat bowls during the winter.

Over the last few years my “weak” leg has felt less reliable and I’ve been using a walking stick when out and about and this year find I now must use it when playing lawn bowls. Similarly, over the last few years I have felt unsteady with sometimes a loss of balance. I cannot walk far without considerable pain, although I’m not sure whether this is because of the late effects of polio or other problems with my spine for which I take prescribed pain medication.

To sum up, everything from my strength to my eyesight, endurance and energy seem to be reduced. I have recently purchased a mobility scooter with which I can go a bit further afield – in fact have just returned from Austria where I was able to explore, amongst other sights, those of Vienna and Salzburg. Thanks to coach travel company B D for transporting my mobility scooter and making this possible. My brother was a year or two ahead of me in his debilitation and requiring a mobility scooter and stair lift (so far I’m still managing with the banister).

I hope to soon have an appointment with an NHS neurologist, interested in PPS, as I would so love to know what I may attribute to PPS and what the future may be expected perhaps to bring. I wonder if any of my experiences will strike a chord with others.

John Hopkinson Experience

In 1958, at age 11, there was suddenly a steep downturn in my mental and physical ability. There was no obvious reason why that happened. My parents thought that the simultaneous pains were probably “growing pains” as the only real pain I had was severe cramps in my legs, particularly the left one.

My parents were the type who would stop at nothing to find out what was wrong. They had nearly lost my sister to illness during the war and were determined not to go through the same concerns with me. However nothing was diagnosed, the pains eventually eased after a couple of years and my school work and physical activity gradually improved, although I played rugby rather than my first love football as I was somewhat slower running and I had developed a slight limp. My school work was not as good as it should have been with particular problems at exam times. Previously I had been very good at this although I say it myself!

Generally speaking, despite several health problems, I managed quite well until after university and starting work, I began falling especially when walking over uneven ground. When my left leg started aching again, I was advised to see a specialist who had, by chance, considerable experience with polio both at home and abroad and, after examining me, came to the conclusion that I must have had polio some forty years or more earlier, at the time when the leg pains started at age eleven.

I was advised to wear an orthotic leg brace and other supports which I did for several years. When my left knee was replaced, my surgeon said that in the process, he would be able to lengthen my left leg which subsequently allowed me to stop using the brace and improved my mobility but the aches and pains continued because of what I now realise was PPS.

There was, and still are, constant mobility problems. However, I think myself extremely fortunate to have survived sixty five years without many of the considerable challenges that most polio sufferers have had to bear. In recent years, I have suffered from sepsis and a mild stroke and recently have had a shunt fitted on my brain as treatment for hydrocephalus. I mention these last three complaints only because my non-medical training makes me wonder if they, in any way could have been promoted by my earlier polio. Has my central nervous system suffered because of polio? Perhaps other PPS sufferers might have a view on this. Nevertheless, I consider myself extremely fortunate in that polio did not have more serious implications for me.

I enjoy being a member of the Lincolnshire branch of the British Polio Fellowship too, despite not having been to meetings recently as my recent operation means I can’t drive for a while. The secretary is very good at keeping me informed.

Mike Locke’s Experience

Written on the eve of my 69th birthday, this is the story of how polio has affected my life.

It was my sister’s birthday, July 28th, but there was no party on that day in 1955 because I was being taken to St George’s Hospital, Tooting, suffering from polio.

I spent several months in St George’s and I have a vivid memory of the day I left, walking down the long corridors with my mother holding my hand. Every time I took a step with my weakened left leg, the knee gave way and I performed a little genuflection. My mother was crying.

I went back to school and got on with life, with the recommendation that I ride a tricycle to strengthen the affected muscles and have a lift built into my shoe to prevent my left foot from turning inwards. I was collected once a week by ambulance from school and taken to St George’s for physiotherapy.

For the rest of my school life, I was the kid with a limp. I walked, cycled, played football and cricket. I was not spared the hell of the cross-country run. On my journey home from school, I would often pick out a pedestrian some way in front of me and make every effort to walk fast enough to overtake them before reaching my house. This “I’ve had polio but so what” carried on into teenage years and into the world of work. I remember one manager asking me if I would register as disabled (so he could meet his quota); I refused indignantly.

Then followed marriage and parenthood. The lift on my shoe was replaced by a cork insole. I hit 30 then 40 then 50. I could walk 15 miles. I climbed Pen-y-Ghent. I walked a mile or two every lunchtime. I took up cycling again and duelled with the Range Rovers in the lanes of Surrey. This activity continued with cycling holidays in Holland (flat) and France (not flat).

Between 2000 and 2004 I completed a part-time degree course, rushing around London and hopping on and off trains and Tubes. We went on group walking holidays, which proved to be disastrous as I could not keep up with the rest. A friend recommended a podiatrist, who scorned my NHS cork insoles and had a pair made (not just the left foot) from hard plastic, which was agony until my feet adjusted to the new shape.

At about the age of 58, I began to find walking an effort. No longer was I overtaking pedestrians. My daily walk to the station went from 10 minutes to twelve to fifteen. It was as if I were willing my legs to move but they could only respond sluggishly. The lunchtime walks came to an end. The bike went in the shed.

I took redundancy/retirement at 60. The bike came out of the shed and was overhauled. I joined a gym and worked ferociously at the treadmill, rowing machine and exercise bicycle. That was perhaps unwise, as I could not stop myself going flat out – something not recommended for post -polio muscles. About this time, my ‘good’ right foot displayed an alarming tendency to collapse to the right, throwing me off balance and landing me more than once in the gutter. I had some new insoles made and started using a walking stick. I joined the BPF. The bike went back in the shed until I gave it to one of my sons.

With help from the BPF, a pain in my knee, which I mistakenly took to be polio-related, led to an appointment with a post-polio specialist at Kings College Hospital. I learnt that there wasn’t much to be done, and that my right foot had also been affected by polio to some degree. I was referred to a rehab centre where I was fitted for an ankle-foot orthosis (AFO) for the left leg and a re-modelled insole for the right foot. For 55 years, I had been walking with my left leg straight and the knee locked rigid; the AFO forced me into a more normal gait.

About 18 months ago, I became aware that my left quadriceps had become weak. It meant I could not use alternate legs when climbing stairs, not without hauling myself up on the banisters when it was my left leg’s turn to do the pushing. A physiotherapist recommended some exercises but it has not been possible to regain strength in that muscle.

Most of my cars have been manual and I’ve been able to work the clutch, though my left foot becomes tired after repeated gear changes in heavy traffic. However, in the last month or so, I have had difficulty pressing the clutch all the way to the floor in any circumstances, resulting in some expensive-sounding grinding noises.

I can walk a mile or so, with regular rest stops to give my legs a chance to recover. Luckily my town is quite well provided with benches. I am well-known to local bus drivers, but my visits to London are rare these days. That’s partly due to the fact that step-free access is still some way off and partly because I’ve got out of the habit of being in crowds.

I fell down some steps during a French walking holiday in 2005, and this has made me very wary of descending stairs, for fear my left leg will give way and propel me forward – and downwards. If nobody’s looking, I often undertake part of the descent on my bottom. I dread leaving aeroplanes via steps, but even using BA is no guarantee of an air bridge.

Where does that leave me, at 69 with PPS? I am mentally alert, can get about at my own pace, can drive (though may need an automatic). I can’t walk in a group, cycle, run up and down stairs, or swim. My mobility has worsened over the past 10 years. I have no idea what the next ten years holds, but I will deal with it, with the help of friends and family.

My Experience by Maureen Chapman

Hi, my name is Maureen l am a polio survivor. I contracted polio in the early 1950s – in them days doctors were very wary of telling the patient or their parents what they had / diagnosed with. I can remember as a small child of 3 years of age being in hospital for long spells that seem to go on for years in and out of hospitals all the time. Eventually from the age of about 8 they discharged me and told my parents what l had been suffering from – l carried on with my life as a child doing what children do but l always walked with a limp which was noticeable to other children and adults.

Post Polio Syndrome became a problem to me in my early 40s when l started to fall or trip over for no reason – after watching a documentary on TV about the latter stages of a Polio Survivor l realised that it was me. After visiting my GP, she arranged for me to have an assessment with a consultant at Kings College Hospital in London who diagnosed PPS.

I will now jump to my current daily life and how it has affected me now. At the age of 74 l have so many problems which l have to come to terms with. My right foot / ankle / leg has completely deformed, and l walk over on one side – my weight has increased as not being able to walk without pain and aids – swallowing is also a major problem where l choke on food / fluids if not chewed or swallowed completely.

Twice yearly l have steroids injections in my feet and ankle but my Consultant recommended that l have surgery as my foot is now bone on bone. With arthritis in both feet now on top the disability l have, life is not as it should be in my retirement years. My medication is Gabapentin 500mg x 4 times daily, Co-codamol every 4 hours for the pain, plus various sprays / roll ons / ointment / on feet to relieve the pain.

My Polio Story

by Dianah King

I was born in 1942 and when I was 4 I contracted polio the day after visiting Redcar beach. I was admitted to the isolation hospital in Darlington where I spent a week in an iron lung and was then transferred to the Adela Shaw Orthopaedic hospital in Kirkbymoorside in North Yorkshire where I spent a number of years having treatment. I was discharged wearing a caliper on my right leg.

At the age of 7 I was readmitted to have 2 operations to my leg and I believe the surgery was related to my Achilles tendon. At 14 I had a further 2 operations for the same thing. My right foot is 2 sizes smaller than my left and an inch shorter. 20 years ago I started wearing an AFO (ankle foot orthoses) on my right leg and a built up shoe.

I have never let my polio hold me back and have lived a normal life enjoying riding a bike, a horse and even abseiling!! I married at the age of 23 after working in London as a Nanny for a number of years. I was married for 53 years until I lost my husband just before the pandemic. I have one son however I would have loved to have more however I do believe that the polio was a factor in why this did not happen as my body is twisted.

As the years have passed I have noticed symptoms that I associate with post polio including reduced mobility and balance issues. I had an operation on my neck in 2013 which gave me back my mobility. I continue to have symptoms however I am still mobile even if I have to use a stick sometimes. I had a steroid injection in June which was fabulous and has given me several weeks pain free.

I have always lived a full life being involved in many charities including WRVS for 32 years, setting up the Alzheimer’s day centre in Richmond (North Yorkshire) and being a school governor. I am rarely at home as I am either lace making, sewing, lunching or talking. I am also lucky to spend time with my extended family.

me with my family on the beach the day before I contracted polio.

I am the girl with the dark hair and plaits sat on my Granny’s knee.

me today fabulous at 80 (nearly 81) !!

me with my

caliper and my younger sister.

Neill Jupp’s Experience

My name is Neill Jupp and am 75 years of age and a Polio Survivor who caught Polio at the age of 3. The main part of my body that got the Polio was my right side from the right arm to my foot which was described as a club foot very misshapen and no muscle at all.

I spent most of my early years in an isolation hospital in Newhaven Sussex where my parents looked through the window from outside not being allowed anywhere near me. Most of my hospital stays were in Chailey Heritage a craft school in Sussex in the middle of nowhere making it difficult to visit as the bus service was very poor. How my mother got to visit me I will never know as she never talked about my early years as she seemed to blame herself.

Life in Chailey was difficult to say the least the regime was harsh you had to watch your back at all times as you could and would get a beating for just being in the wrong place at the wrong time.

My medical side was lots of procedures and 2 operations which have lasted for 66 years but are now worn out and no replacement in sight as nobody nowadays knows much about polio due to all the old surgeons being retired or dead, so polios get pushed out because nobody seem s to care or understand the pain you are now in.

My treatment over the last 40 years has been hit and miss some doctors will take you on then either move on or retire just as you are getting them to understand your needs very frustrating.

My life now is that I am back to walking sticks as the pain in my leg is so bad that a stick takes the pressure off my joints. The only exercise I can manage is swimming as it is non weight bearing so my joints can relax for 30 minutes. You have to keep positive and not let it beat you but I take lots of breaks so that I am not tiring myself out plenty of fresh air on the seafront sitting on a bench and enjoying the view also is good for you.

Neena Bhandari is a Sydney-based foreign correspondent and freelance journalist. Neena has a special interest in Post Polio Syndrome. She has written for the British Medical Journal and is a frequent speaker on Poliomyelitis at various international forums.Neena has recently launched Post Polio – India, which aims to be an umbrella website for polio survivors and their families, health professionals, researchers and organisations to connect and share experiences and expertise.https://neenabhandari.com/what-clinicians-need-to-know-when-treating-polio-survivors/

https://neenabhandari.com/why-polio-survivors-may-benefit-from-a-lung-function-test/

https://neenabhandari.com/polio-never-far-away-in-the-jet-age/https://neenabhandari.com/the-phases-of-polio-past-present-and-future/

My Experience

By Eddie Clark

As a seven year old just nearing the end of going to infant school in Lincoln during 1957, the energies in life were endless. It must have been the final half term in April, there it was me and my friend climbing on play equipment in the local park without a care in the world, when it all started. There was me feeling very unwell. I remember the pain in my body was getting worse, so I returned home as fast as I could knowing the one person would be there for me, my Mum. With Dad at work, my twin brother out with his mates and sis as I called her then, was helping Mum in the kitchen. Mum, without hesitation seeing my condition getting no better, ask sis to stay with me whilst Mum rushed to the neighbours four doors down in our row of terraced houses to ask if she could use their telephone. With the nearest public telephone box at the post office 10 minutes away, it was a bonus, mums very seldom worked in those days as our kind neighbour answered the door and let Mum phone the doctor. On his arrival, with me on the settee stretched out, his diagnosis was swift.

He and Mum went down to the neighbour again who by this time was waiting with the passage front door open ready and concerned for them to return. A short while later the cream coloured ambulance with its bell ringing so loud came to the excitement of most of the neighbours in the street who all came out to watch while I was carried out on a stretcher to be placed in the back of the ambulance. On arrival at St George’s Hospital Lincoln the Dr immediately put me in isolation in a glass cubicle with others either side. Being so young I had no idea what was going on as I was unable to move. Laying there paralysed, the nurse came in, gowned up to and said ” o dear I feel it best if we changed your sheets” I’d lost all lower body feeling and control.

I remember being transferred to a room with a big box iron lung and laying there so must have had difficulty breathing at some time as Mum confirmed in later years on revisits to St George’s. After a time I was transferred to a ward where children laid in bed. I recall drinking from a teapot lying flat on the bed stretching out my left arm. Mum, aunts, crying, wiping tears from their eyes, uncles looking on, all unable to verbally ask anything through the glass observation area. Over time and treatment St George’s Hospital transferred me to the County Hospital in Lincoln as I regained movement slowly in the recovery children’s ward.

My whole life of hard work eventually started to show areas of weakness in my late 50’s. I thought its time to start having words with the Dr. Sleep apnoea was ruled out after tests. After the hospital test I had a word with the Dr who was a polio specialist. Enquiring he commented there are possible signs of PPS. I carried on with work until I felt a four day was needed so I could recover over a long weekend.

Going to see the local Dr in 1963 and asked the question again about PPS, not a chance she said, I’ve had no case of that in my working career but I’ll get you to see a neurologist to check it out. I had to travelled to Nottingham for test only to find the young neurologist just making snide remarks of how mild my condition was at 70 years old, how I’m looking for answers nobody seems to know much about. No dedicated person at The County Hospital, my local Dr has no time to listen, even with EMG carried out by the neurologist assistant and when neurologist turned up briefly, he was constantly interrupted by a trainee neurologist.

My life goes on at the age of 73, and thankful to wake up with a pulse and plan my day around my condition now. Plan B kicks in lots of the time, with planning and adjustment it keeps my independence ticking over. With the help of my power chair this gives me a way of being able to make the days routine more comfortable, happy days.

76 and Still Adapting

by Marion D Rushing III

What a coincidence, I had just returned from a visit with the neurologist when I opened the email from Toni Dunlop asking for my polio story. I’m more than happy to share with others who have also dealt with polio, the disease that keeps on giving.

I’m 76 and had polio when I was 18 months old. That was 1949 and there was a big epidemic here in the states. I was lucky in that my grandfather was a physician. I was placed in Cripple Children’s Clinic, Birmingham, Alabama. When my grandfather, “Wekkie” (short for Westcott) came to visit me and saw the conditions there, he swept me up out of the bed, put me in his car, and drove to Warm Springs, Georgia where I got state-of-the-art treatment at the Warm Springs Foundation which was well-known due it’s patient, Franklin D. Roosevelt. I can’t tell you what a difference it has made in my life. For all intents and purpose, it was a normal life, yet so far from it.

I played sports, not very well, but I played. In high school I lettered on the B-team basketball, and was state champion in the shot put. What a sport! It’s all upper body strength, and you hop on just one leg. Luckily, it was my good left leg!

I know that I spent some time in an iron lung at age two. I don’t know how much, but any time in Skinner’s Box is a bunch. Here I am, a 76-year-old man and I still vividly remember that contraption. Someone ought to do a study on the psychological effect of the iron lung on infant children. I remember how frightened I was. I remember not being touched by another human being. I still don’t do so very good with relationships today. I’ve really tried hard, but just can’t make it work. Just another scarred soul due to polio.

I guess it’s a triumph on my part that I don’t feel guilty any longer and blaming myself. It was just the start of how polio warped my soul as well as my body.

After I got out of Warm Springs, I remained an out-patient. I started with a hip brace which gradually became shorter as I got older, and was only high-top shoes when I started first grade at age six. I started wearing non-orthotic shoes in the third grade (Just a metatarsal wedge on the soul of my right shoe).

In the fourth grade they discovered that I had scoliosis, an “S” curve in my spine. So, the docs at Warm Springs prescribed a brace for me. Their orthotic shop measured me and tailor-made a corset with stainless steel stays. It went from my diaphragm down to my hips, extending a little lower on the front and rear. I remember it was the strongest, thickest cotton I had ever touched. Down the back, there was a stay on either side of my spine with a steal loop welding the two at the top and bottom. I got refitted with a new brace every six months until the ninth grade.

Man, I can remember how the blood would drain from my face and hands with anguish when I contemplated going to junior high school wearing a bulky brace with GIRLS! Lucky again. I quit wearing the brace two months before I started ninth grade. And that was pretty much it for my treatment during my youth.

Growing up, the family never talked about me and my problems with polio. I guess it was because my mother could never fully accept it. It conflicted with her perfect life. As great as her father was, she was a bit lacking in support. Mom wasn’t warped. She was just bent a little bit. Anyway, it was enough to make it hard to love her.

So, growing up was tough. I never had anyone that I could talk with about what I was going through. Too bad because I was a highly intelligent, very sensitive, very creative, ultra-shy and extremely introverted soul in the midst of a family of high achievers. I’m a little ashamed to admit it, but I felt shame. I, on the other hand, wasn’t much of an achiever. I finished high school with barely a “C” average. A letter grade lower in any course, in any year, would have stopped me from graduating. Yet, I was a National Merit Scholarship semi-finalist. Interesting, huh.

Well, that’s the story of my life up until now. As I said, I just returned from my latest visit to the neurologist. The good news is that a recent nerve conductivity test on my right leg compared favorably with another conducted five years ago. There’s still no motor neuron activity from the knee down… dead. Oh, the pain nerves are working just fine. I’m aware of it every night when I go to bed.

My hip is withered and my toes are curled up because I can’t move them. Every night I have to designate about 20 minutes of my stretching time to my poor little toes. My god, they can hurt so bad.

Remember what I said about small things? My goal in life is to stay loose. No one else knows better than us what it’s like to have a part of your body in a constant, rigid spasm. It hurts.

Now pay attention because here’s the part that nobody is talking to you about. On the affected parts of your body that are still running, you’ve got a reduced number of motor neurons due to polio. So, this means that when you have injuries, such as lower spinal injuries, you are more susceptible to injury than even you think you are. Case in point – my back.

A year ago I had a fall, and this fall was different from all the rest because I couldn’t roll into the fall. My feet were tangled in the hose as I was watering my plants. I pride myself on my ability to take a fall, rolling on my shoulder where I don’t get hurt, just dirty. But this time I fell straight back in a sitting position. You can imagine what this did to my spine. When I hit, the sound in my head was like a “thud” on the side of a jug. It was hard.

The shock of the impact went straight up my spine giving me a wedge compression fracture in T-12 and another compression fracture in T-11. Interestingly, the lumbar section held up just fine. That’s because it was surgically rebuilt (my second back surgery) with fusions, bone grafts and titanium rods, and when they did it, they built it like a bridge. Before and after nerve conductivity tests and MRIs show an undamaged spinal column and nerve roots. Yet, peristalsis stopped when I fell.

The theory is that polio left me with a reduced number of motor neurons, and the few that remained to run my lower digestive tract were damaged in the fall. Seems reasonable. After all, I had already lost the ability to express my bladder without a catheter.

So, here I am performing a sensitive balancing act with Mira-Lax in order to keep my digestive system moving, and I’ve got diarrhea for the rest of my life. Oh, and by the way, I’m nearly two inches shorter than I was when I graduated from high school.

I’ve accepted myself as I am, not broken, just bent pretty good. Both physically and emotionally. I’m moving on with plans to remodel my bathroom and plant a peach tree in the yard. I’m moving forward. It’s bound to be better than what’s behind me.

I’ll leave you with these words of advice. Learn how to take a fall if you haven’t already. Find someone to teach you. You know that you’re going to fall…sooner or later. Make the best of it.

Me, I’m going to stay loose, or loose as I can. Then I’m going to get high and bake some banana bread. Life is good, even when it deals you a bad hand. It’s not the hand you’re dealt, but how you play it. You can do it; you are some of the toughest people in this world. Keep on adapting!

My Polio Experience

(Anonymously provided)

I am a 75-year-old woman. I had polio when I was 18 months old in the 1949 epidemic, before there was a vaccine. I don’t remember getting ill or being in hospital.

I grew up with a paralysed left arm and a slightly impaired right leg. My parents were told to put my arm in a sling. When I was four, I had an operation on my leg and a doctor decided I should be strapped into a plastic support to hold my paralysed arm bent at the elbow. The support required many tedious trips to hospital for measuring and replacements when it got cracked or I grew. I hated it so much. It prevented me from doing all the things I wanted to do, which, at that age, was playing with dolls, dressing-up, clambering about on climbing frames in the park etc. Unknown to me, my parents were very concerned about how I’d cope at school while wearing the support. Nevertheless, the rule at home was, ‘You must wear the support. Doctor says’. Fortunately, one day, when I was taken to hospital for a check-up, I saw a different doctor. He had the empathy to inquire about how I found the support. When my mother explained how obstructive it was, he surprised her by saying that its sole purpose was to help me. If it didn’t help, I didn’t need to wear it. We threw it in the bin and life improved no end. I started school able to join in everything.

At university, I used my experience to write my undergraduate dissertation on relationships with physically disabled people. This was long before anyone had thought about disability studies. There were few relevant texts to consult. I married, but sadly, was widowed. I was left with a two-year-old son. I brought him up on my own, became a teacher and later left teaching to work in the voluntary sector. In the 2000s I did a diploma in disability studies, which I enjoyed immensely and it gave me a fresh outlook and a knowledge base from which to campaign.

I always fell over occasionally, but thought nothing of it. By the time I reached my 50s, it seemed to me it happened more often. About 15 years ago, I found that I couldn’t get up by myself when I fell. It has led to some difficult situations. I realised it must be post-polio syndrome. My walking had become a bit limited. Following several bouts of infection in my leg, originally due to an infected cut, I was sent to hospital for intravenous antibiotics. On leaving the hospital, I found I couldn’t walk back to the car park. My GP sought the advice of a neurologist who said that the infection could be exacerbating the post-polio syndrome. It would probably get better on its own. It did improve a bit. Now I have had a number of recurrences of the infection and each time I’m left unable to walk as well as I could before. I use a stick and can only walk about 30 metres, with my leg getting imperceptibly weaker with every step. I have to be very careful. I have not found any references, in general information about post-polio syndrome, to infections having this effect.

I have been lucky enough to enjoy much good health. Of course, women need the services of health professionals even when they’re well. As I get older I’ve had to consult health professionals more often. I continue to be surprised and disappointed by their attitudes. It is my experience that, whatever my reason for using health services, the professionals think that, without asking any questions about my circumstances, because I have an impairment, I must be ‘informed’ that I ‘can’t do’ various tasks that I’ve been happily doing for over 70 years and, in the guise of ‘helping’, they actually make life more difficult for me.

So far, I’ve led a fulfilling life. In my retirement, I pursue my interest in politics, support community projects and campaign, particularly around equality and disability access.

My Polio Story

by Michael Kossove, Professor Emeritus and Adjunct Professor of Microbiology Touro University, School of Health Sciences, New York

In 1948, after returning from summer vacation in the country, I came down with polio. It was non-paralytic, and my family decided to keep it a secret. And they did and died with the secret.

In graduate school I studied Virology with Dr. John Winsser, who was a Team Leader with Dr. Albert Sabin when he developed the oral polio vaccine. I learned everything about polio, except that I was a survivor. During my early years of teaching Microbiology on the college level (I’m still teaching Medical Microbiology at 85). one of my students asked me about PPS. He saw something about it on the news the other night. I never heard about it. I visited the 3 Support Groups in my area and heard the “nightmare” stories. Each group asked me to talk about polio. I realized that survivors really had no idea about the disease, especially 3 types of viruses. At that point I changed my research from Microbiology of the Eye to PPS. With the 3 group leaders, my college, Touro College, now Touro University, sponsored the first conference on PPS. I attended a Polio Convention in St. Louis and met survivors from all over the country. I began to receive invitations to speak in person, to their Support Groups.

In the early 1980’s I began to experience PPS. I was diagnosed with PPS by an Orthopedist, and a Physiatrist. On a trip to Boca Raton, Fl, to talk to the group, I stopped by my aunt. She confirmed that I had polio. Shortly thereafter, I needed an AFO (short brace) on my left leg, and over the years it became a full metal and leather brace. As the years continued, I needed an AFO short brace on my right leg, and 3 years ago, a full metal and leather brace on my right leg. During these years I developed Power-point Presentations that I presented to Support Groups, and at Polio Conference across the United States. Since COVID, I have had the opportunity to Zoom with Support Groups in the United States as well as Canada, Australia, and to a Rotary Group in London. My highlight was receiving an invitation to speak to a group of Orthopedic Surgeons, by Zoom, in Beijing, China. I continue to Zoom. I have 5 Power-point Presentations, and I continue to create others.

I am extremely lucky not to have had the early effects of polio, and I treat PPS as “a little inconvenience.” I am not handicapped. I am “handicapable.”

Because of this big secret, I was drafted out of college in 1958, and sent to Germany as a Senior Medical Aid Man, when Khrushchev banged his shoe on the podium of the United Nations, and walked out. We were ready for war. Thank God that didn’t happen. I was released in August 1960. to return to school. If I knew I was a survivor, I would not have had to serve. It turned out that, without war, it was a blessing in disguise. The Veterans Administration made my braces, my glasses, hearing aids, and take wonderful care of me when I need them. They have accepted the fact that the service may have perpetuated PPS.

I am presently writing a book: “Polio, Then, Now, and the Survivors, I hope to complete it by December, 2023. I have met so many survivors through Zoom, and they have been the motivation for the book. I would like this book not only educate polio survivors and their families, but the Medical and Allied Health Communities as well.

My Short Story by Fred Naggs

It was 1953, I was five years old and in my first year at school. I have a clear memory of trying to get out of bed and my legs giving way under me. Our GP had seen me the previous day and told my mother to give me a couple of aspirin and I would be fine. I do not recall much of what happened after that. The paralysis was confined to my legs and I do recall being taken out in a pushchair but I was cared for at home so it must have been a relatively mild condition. I was deemed to have made a good recovery but I became a sickly child with lots of pain in my limbs. When I returned to school, I felt detached from my surroundings and the other children. I was often in trouble for daydreaming and looking out of the windows, wishing I were somewhere else. I seemed to be tired all the time and cold. I scraped along at school, just getting by.

After leaving school I had a succession of jobs and decided to redress my lack of education by pursuing an Open University degree. Married at twenty-one I had the unstinting support of my hardworking wife, who was a nurse. I secured a post at the Natural History Museum in South Kensington in 1974 and commenced a rich and fulfilling career, initially as an assistant curator and for the last 14 years before I retired as the Biodiversity & Conservation Officer in the Zoology Department. I ran international development projects throughout South and tropical Southeast Asia, mostly based on surveys in tropical rainforests. I supervised PhD students and postdoctoral researchers and followed my career dream. Problems that were later recognised as PPS began to cause problems. Episodes of brain fog were the most alarming because I had no idea what the cause might be, and I avoided public speaking, lecturing and conference presentations. Episodes of fatigue had long been a problem but they became overwhelming. I was still riding high running international projects but mobility became an increasing problem, with leg pain and weakness. Following a serious road accident on the borders of Vietnam and China in 2013 it became increasingly clear that I could not continue. All field work ended. I continued at the Museum for a further three years before retiring.

In 2021 and after 50 years in our much-loved home, we realised that a three-storey house was no longer suitable. We moved to a bungalow close to shops and amenities. It was a big step to take but proved to be an excellent decision and perfect for our current needs. I still contribute to scientific papers and write articles but productivity is low, I work around the fatigue brain fog and pain. The most important thing that I learned from the Lane Fox Unit at St Thomas’ Hospital was to pace myself and be careful to work within my limitations. It is frustrating but the only way.

Urama Emmanuel Experience

My name is Urama Sunday Emmanuel, I had polio when I was 7months. I started walking at 6months and suddenly started to crawl at 7months. After two years I started walking again limping the right leg. I had no other problem apart from the partial paralysis of the right leg.

At my younger age, I could play football, table tennis, driving manual vehicles including trucks but was using the right leg only for throttle. When I purchased an automatic vehicle, I stopped engaging the right leg. At age 14, one orthopaedic surgeon suggested that I should do surgery on my right leg so that I will not be holding my right leg while walking at older age and I vehemently refused to undergo any surgery.

At age 30 after my internship at the orthopaedic hospital, I had an accident that broke my hand. I was admitted in the same orthopaedic hospital and was given a walking stick to aid movement and prevent bending towards my right leg. At that stage I remembered the doctors advice of surgery to avoid holding my right leg while walking.

Presently now, I am 47, and cannot play football or table tennis or stand up for a long time or walk for a long distance without feeling tired and breathing fast. My weight is high and I need to reduce it.

Polio detection times could be halved using a scientific detection method, new research showsNew research supported by the Medicines and Healthcare products Regulatory Agency (MHRA) has shown that the time to detect polio can be halved using a technique called Direct molecular Detection and Nanopore Sequencing (DDNS), supporting the global effort to eradicate polio and help save lives.Read the full article here:https://www.gov.uk/government/news/polio-detection-times-could-be-halved-using-a-scientific

detection-method-new-research-shows

Medical Advances as a Result of Polio

Among the positive outcomes of the polio virus outbreak are the significant advancements in medical treatments that have saved countless lives.

Dr. Hannah Wunsch, a well-known author, recently shared the results of her extensive research with the Post-Polio Syndrome Advocacy Group.

YouTube video and transcript available here:

https://www.youtube.com/watch?v=rn3HcMgQyOY

To learn more about The Post-Polio Syndrome Advocacy Group contact ppsadvocacy@gmail.com

Have you got something to share?Sharing your lived experience is a powerful way to make services, like health and social care, better and more inclusive. It’s also a great way to make new connections, gain experience, and get paid too!If you’ve got something to share but aren’t sure where to start, Shaping Our Lives has launched a new guide and video which can help you.The free My Voice Matters guide contains an overview of what involvement means, who can do it, how to have a positive and inclusive experience, and where you can go to find opportunities.Shaping Our Lives is a user-led non-profit organisation focused on empowering people, especially those who are marginalised and face barriers to being heard, to have their say.The free guide, in both PDF and Word formats, and the video, can be found here:https://shapingourlives.org.uk/share-your-lived-experience/

Useful Resources

• International Ventilator Users Network

www.ventnews.org

• Disabled Motoring UK

www.dmukdiscounts.co.uk

• Pain UK

www.painuk.org

• National Voices

www.nationalvoices.org.uk

• Neurological Alliance

www.neural.org.uk

• Rare Disease UK

www.raredisease.org.uk

• End Polio Now – Rotary International

www.endpolio.org

• European Polio Union

www.europeanpolio.eu

• Post-Polio Health International

www.post-polio.org

• PA Polio Survivors Network

www.papolionetwork.org

• Polio Quebec

www.polioquebec.org/eng/

• Polio Survivors of Marin

www.facebook.com/groups/163909760771171

• Atlanta Post-Polio Association

www.atlantapostpolio.com

• Nebraska Polio Survivors Association

www.nepolioorg.ipage.com

• Polio Australia

www.poliohealth.org.au

• Word-Wide Fellowship of Polio Warriors

www.poliowarriors.org

Patient Worthy aims to publish the realities of rare disease. Your voice is integral to achieving that goal.

Would you like to contribute and share your story?

You can submit here https://patientworthy.com/contact/ or let them know if you’d like to work with a writer.

Polio & Anesthesia – Selma Calmes, MD

Dr Calmes is an experienced anesthesiologist, now retired as Chairman and Professor, Department of Anesthesiology, Olive View-UCLA Medical Center, Sylmar, California.

Dr Calmes has consulted on numerous surgical cases of polio survivors over the last 20 years.

The following video was produced by Post-Polio Health International, USA, in 2014 and available to view on Polio Australia’s website.

https://tinyurl.com/mr2nxku4

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

Trustee – 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

PSN Admin, Enquiries and Website – Toni Dunlop 07480 110334 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, UK Email psnadmin@poliosurvivorsnetwork.org.uk

Phone us on 07480 110334 and we will ring you back when we collect 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

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!

www.post-polio.org

https://www.endpolio.org/world-polio-day

Patient Worthy aims to publish the realities of rare disease. Your voice is integral to achieving that goal.Would you like to contribute and share your story?You can submit here https://patientworthy.com/contact/ or let them know if you’d like to work with a writer.

Post Polio Matters Volume 11 Issue 3 Read More »

Post Polio Matters Volume 11 Issue 2

© Polio Survivors Network – Volume 11, Issue 2/12 [122] JULY 2023	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire Post-Polio Library

Polio Survivors Network Newsletter

July 2023 — Volume 11 Issue 2 of 12 [122]

See Page 10

HEALTH PROFESSIONALS – How we can help you?

POLIO SURVIVORS are a NIGHTMARE

PART TWO

The success of the polio vaccine reduced the number of facts taught by your Colleges of Medicine. The Polio Virus Damage is scattered throughout our body and rarely do two of us have the same level of nerve damage/issues – so no set pattern

We have now developed another condition ending up in your department.

Our members are experiencing many issues

PSN are looking for any ideas and suggestions from anyone including health professionals anywhere in the world

for a newsletter and stand alone article for how we might reduce the issues and save our NHS and all hospitals time and resources.

Continued on page 6

INFANTILE PARALYSIS POLIO POLIOMYELITIS PARALYTIC POLIO

POST-POLIO SYNDROME POST-POLIO SEQUELAE

N O N – P A R A L Y T I C P O L I O

B U L B A R

L A T E E F F E C T S O F P O L I O S P I N A L

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.

This publication is provided free thanks to the generous donations of our lovely members.

Thank you so much!

Page 2	Contents, Donation acknowledgements
Page 3	Editorial – Hilary
Page 4	PSN Annual General Meeting Summary
Page 5	Fings Ain’t Wot They Used to Be – Verite
Page 6 – 8	Polio Survivors Are a Nightmare – Part 2
Page 9	Michael’s Sciatica – Zsuzi
Page 10	In memory of John Graham De’Ath, The Brain Charity Campaign
Page 11 – 12	Toni Writes
Page 13	BPF Updates, Useful Resources
Page 14	Post-Polio Health International resources, The Lighter Side
Page 15	Management Committee, Donations, Useful PPS articles widely accepted by professionals
Back page	PHI’s We’re Still Here Campaign

Donations and Charity Incentives Paid(since last newsletter)
Smile.Amazon	5.00
Donation (K Lagwi)	12.50
Smile.Amazon	25.20
Donation (J Smith)	30.00
Donation (M Embry)	150.00
Donation (D Brennand)	12.50
Donation (S & P Tanfield)	20.00
Donation (F Mitchell)	12.50
Total	£267.70

PayPal donate link:

https://bit.ly/2KzyAyE

Editorial by Hilary Boone

I am saddened by the issues that all your Trustees, my husband and more and more members contacting me are reporting.

We are all aging and many of us have other medical issues to add into how we manage our Polio lives. This has added further burdens to us and our families and those that help care for us.

We have been strong willed, determined to succeed and achieved way more than was expected of us when we had our original polio. When Post-Polio issues started most of us ignored them for years. We continued to push ourselves and then crash out, rest up for a few days and then do it all over again. Yes, we had heard about Pacing and Resting making our lives easier but hey “We were not there yet, were we?” I have to go back to 1997 about eighteen months into having found PPS existed, starting our Network and formulating Newsletters. A registrar in the Rehabilitation Clinic in Lincoln asked me “Who wrote this article in this Polio newsletter?” I was so proud to say “I did”. Then stunned when he replied, “Well can you please explain why you are not taking the advice you are giving?” I never expected his response to be, “Not there yet? You have been there for at least five years.” It is not easy to be honest with ourselves is it? However in view of the issues being experienced I think it would help all Polio Survivors if we started thinking about how would we cope if………

For at least a decade or two most of us have been Pacing and Resting and using aids and assistive devices and many of us have Carers or Family Members taking on some of the roles we can no longer manage. Covid was a big shock to everyone in early 2020 and being honest I did not expect to be alive many more months. Most of us accepted the vaccines offered to us but that is a personal choice. We accepted that obtaining appointments and treatment was going to be more difficult and take longer than the already long time we were used to waiting in our varied counties.

Your Trustees started mentioning a few issues during our post meeting chats. This triggered me to formulate the front page of the last Newsletter. What I did not expect was the level of issues that were then reported to us after publication. Please find Polio Survivors are a Nightmare Part 2 on pages 6-8.

The Specialist Clinics and Wards covers Cancer, Parkinson’s and other Neurological Conditions, Cardio, Orthopaedic, Respiratory, Orthotics, Ear Nose and Throat, etc. Some of whom we expected might have a little knowledge about Polio Survivors issues but reported to us is that not all do.

I am asking anyone who reads this newsletter to help us by providing more information for our database of problems that Polio Survivors are experiencing. What issues did you, or happened to patients you were treating? Please tell us good and bad how did you/they cope? What would have made your life easier at the time? What information or other idea would you prepare for the next time the situation occurs? I am sure you will be interested in reading Zsuzsi and Verite’s articles. (pages 5 & 9) PHI We’re Still Here 2023. It would be great if some of our members could submit items for this competition. The photos could help Polio Survivors promote the fact that there are more survivors in the world – especially those in third world countries – who are still alive today.

Prof Carol Vandenakker Albanese – See page 14 for presentations that can be watched online. I have met Dr. Vandenakker at many Post Polio Conferences in the last 25 years. She has acted as Reactor to Presentations I have given. I arranged for Richard to have a PPS assessment by her when she was working in Miami in December 2000 and it was she who diagnosed Richard with having Parkinson’s as well as PPS.

Your Committee need more help please.

We are not only managing our physical health but getting older with all the paperwork that entails. We know of at least one group where they have two people for each post. If you could spare us an hour or two a month to take on a task then get in touch. Our meetings are held on the Internet but with the facility of adding someone via their phone. All members/ readers are welcome to send us any info on anything that might help us manage/enjoy our lives move fully.

Polio Survivors Network Annual General Meeting (AGM) 2023

As you will all know we held our AGM online on Thursday 29 June 2023. We were pleased to welcome members from around the world.

Our Chair, Simon Parritt, presented the Annual Report which recognised that there have been challenges faced by all since our last AGM due to the Covid- 19 pandemic. It was acknowledged that it is also increasingly hard for polio survivors as we age. There were advantages from the pandemic such as being in more regular contact with polio support groups from around the globe and building on these good relationships. We provide a niche service for polio survivors; it is very specific. While we don’t offer a helpline or advocacy service we support where we can. It is difficult to keep polio in the mind of healthcare professionals as post-polio syndrome is a less visible condition. We also recognise that as polio survivors age using the internet and new technologies can be hard so we will ensure we keep a telephone, mail and email option to be in contact with us as well as via our website and social media such as Twitter. We will continue to educate others and will use various means to do this. We will consider further utilisation of the media and try to build on the strategies that have been produced for long-covid to support long term neurological conditions such as those faced by polio survivors. In the future it may be that we use modern media more to help our cause and potentially we will look to fundraise as is necessary. We want to thank you all for your generosity and for your support.

A copy of the minutes is available by request to admin@poliosurvivorsnetwork.org.uk

Our post AGM chat included comments about how difficult polio survivor patients can be for hospital staff to help, a theme picked up in this newsletter. There is concern that the whole person is not taken into consideration. Polio survivors are more than our PPS diagnosis. Often the handover from A&E to a ward is poor and day to day needs may not be fully addressed. Polio survivors must do what we can to help ourselves and advocate for ourselves, this is not easy when ill and there is concern for those who cannot advocate for themselves. Polio survivors are often seen as ‘too complicated for our ward’. We are not a typical patient as some tasks we can do others we cannot and this can change. There is a lack of knowledge in the healthcare profession and we must fill the gaps. It is a training issue so we must be prepared. It can be tiring explaining everything over and over to each member of staff or shift change. There is often a disconnect between pharmacy and hospital ward, so we need to be aware and speak up assertively. Polio survivors are used to dealing with life in different ways and can often adapt to find work arounds to issues. Polio survivors can’t be compared with their age group who are recovering from a heart attack or stroke as an example. We have complex needs. It would be good for all polio survivors to have a hospital pack ready that included simple documentation about our individual needs and maybe a larger document with more details. Don’t forget that we have the ‘What you Need to Know About My Condition’ document which is available on our website or can be requested by email. It is useful to note that information can be added to the Medical ID section of a phone. Emergency services are trained to look at this information on a mobile phone as it is easily accessible to them. You can record details of any important medical information you would like staff to know. The Apple watch can also have medical information on it.

FINGS AIN’T WOT THEY USED TO BE

PSN Trustee, Health Journalist and owner of www.aftercancers.com

Dear Readers,

Fings ain’t wot they used to be. In fact they are a darn sight worse than one could imagine.

I have just spent five weeks flat on my back in Oxford’s John Radcliffe Hospital, a mega building of 832 beds. Supposedly a caring community – but I didn’t find much compassion given me In hospital because of a massive eye infection, no-one helped me to fumble my way around, or even helped me to workout how to feel my way around when I couldn’t see.

I remembered when I had fallen off a bicycle into a holly bush in Klagenfurt, Austria. Had been shown into a small room that had been draped in sheets from a sterile pack. Nothing like that happened in Oxford – but I was to have an injection in my eye. Three days later I was being admitted to hospital, gradually losing my sight.

Things went from bad to worse and although I told the Nurses I was allergic to Preservatives, no-one paid any notice, and I was given Eye drops loaded with preservatives. Consequently I came out in a rash all over. No-one cared.

The air conditioning blasted out (In June) across beds all day long. and one needed to have a heater pumping out hot air to counter the icy blast during the day, Doctors couldn’t take blood samples. but no-one worried – they just ‘forgot’ you needed one.

Forget about Dignity and Privacy: Doctors discussed patients in the corridors, where anyone could overhear discussions.

Infection control was left to keep a barrier up for patients, – but not much barrier up to protect one. You just hoped there was some protection, but not much guarantee. ‘Agency nurses’ said they were worried about infection floating around.

When you tried to find someone in charge, Sisters said “I don’t talk to patients”. Drugs weren’t written up in Drug books, so went missing – eventually I gave up asking.

At the end of my stay, the only thing to do was report the hospital to the CQC (Care Quality Commission), and hope they sort them out.

Verite Reily Collins

Email: veritegreenbee@gmail.com

Telephone: 01865-343536

POLIO SURVIVORS ARE A NIGHTMARE PART 2.

I had no idea when I formulated the front page of the last newsletter how bad things actually were for polio survivors and probably an awful lot of other people with neuromuscular conditions.

The Lincolnshire Neurological Alliance from January 1998 to December 2022 gave up hours of our time providing the User/Carer/Neurological conditions poor experiences with the hope that we would see an improvement in services offered in Lincolnshire and a saving of NHS funds. We saw a few improvements but then things took a downturn and now…

We fully accept that each health department/ward cannot possibly know the ins and outs of every medical condition. We also accept that Covid has caused massive issues for NHS staff leading to even longer delays for appointments/treatments. If NHS funds are to be saved then we believe the only way forward is genuine Co-production with all involved providing and receiving services.

Not only did we personally experience issues but we are being contacted by other polio survivors who are reporting similar issues. We have decided to have yet one more go and with our readers help write an article for the next issue [and stand alone] outlining solutions to the problems Polio Survivors have experienced. So we are asking our readers for help. It does not matter where you are in the world. Please contact us with the issues you have experienced and how you managed [both good and bad experiences]. Plus let us know if you have any suggestions of simple alterations to procedures that you believe could save time and valuable resources.

We, and those who contacted us, suddenly found ourselves in A&E, Emergency Care, Surgical or Medical Emergency Assessment Units and some then onto a ward relating to the issue we were experiencing and discharges to our home.

As I started this article all those already contacting us had provided printed medical information on our Post-Polio. We had all our medications with us so we could take them on time and we did not have to wait for them to be ordered and collected from the pharmacy. If we had other medical equipment needed during our stay then we had taken this with us. We had someone with us to assist us when needed allowing staff to concentrate on other patients.

The following are just some of our experiences. What ideas do you have?

1. When in A&E or Emergency Care.

A. Two members left sitting in their electric wheelchairs throughout the night in the waiting room for more than 16 and 18 hours.

B. One had provided their medication time sheet and was stunned next morning to find that nurses were unaware medication had been taken at four times and therefore not recorded. We recommend that if you do this you ensure that staff are aware each time you do this.

2. When on Wards the level of disability awareness by many staff.

A. Arriving on the ward in an electric wheelchair to be met with ‘we do not have a hoist to get you in and out of bed’ I don’t need one. “How are you going to get in and out of bed then?” I can self transfer.

B. Arriving on a ward in an electric wheelchair and immediately a call goes out for an air mattress. We have lost count of the number of times we have explained that we cannot get into or out of bed or move about on an air mattress, it would make us more disabled. 3 of 7 times we have had to agree to the change. Within a short time staff have to had to change it back again. Waste of time.

C. One member reports asking for help to eat his dinner was met with the comment ’But I saw you walk to and from the toilets’ having to explain his main polio weakness is his upper body.

3. Disabled toilets/washrooms.

A. Entering on electric wheelchair many are so small it was impossible to turn round to shut the door.

B. Canada—’the room I had had a completely inaccessible washroom. The wheelchair

only would go about 1 foot from the toilet. The nurses had to climb over the chair to help in the bathroom. It was at times hilarious but sadly not at other times.’

C. I went to the disabled toilet in A&E and although I could see the low toilet was going to be an issue I could not wait. I did what I had to do then called for help. A male nurse arrived offering his arm to help me stand and I explained I cannot pull myself up I need to push up to stand. He brings another male nurse who offers his arm. I was explaining again that I cannot pull myself up when a senior nurse arrives at the door and loudly says ‘Mrs X if you do not make an effort you will be there all night.’ I should not but I swore and loudly explained “for the third time the only way I can stand is by leaning forward pushing myself up and your staff helping me lock my legs at the knees” At last I had got from the toilet to my wheelchair – to then receive a round of applause from those in the waiting room not something I expected.

D. Staff not aware the disabled toilet door could be opened outward’s allowing more room in the toilet but still not enough to turn to lock the door.

E. Told no disabled toilet available on the ward nearest is 50 yards down the corridor.

F. Low disabled toilet and no toilet raise seat available.

G. Given commode as the only alternative with two reporting the depth so shallow that physical restrictions meant it was not possible to clean ourselves making us even more disabled.

H. Three report disabled toilet in a very large room. One had handrails both sides. The other two only one handrail. All report Washbasin and handtowels not in reach from the toilet.

4. Eye examinations seating, X-rays and MRI’s – how to get on/off tables.

A. Eye tests and the little low stool on wheels. “I was told you must leave electric scooter outside the room. I managed to sit down onto the low stool and have the tests. I was unable to stand from that low height and was told they would call security. For years I had raised the issue and nothing had been done. I was annoyed so I dropped to the floor crawled out of the room and used my practiced method of getting up using my electric scooter. I was so embarrassed that I sung “I do it my way” and got a round of applause from those waiting. Funny at the time but I hate it and dread going for my yearly Diabetic eye test.

B. X-ray tables. How many times have you had to explain you can only do this your way and please do not grab my arms? From electric wheelchair to table. “They wanted me to try to shimmy over myself. IMPOSSIBLE! You know me I would try after wasting energy and about 15 minutes they would get out a back board and in seconds had transferred me. In the mean time I was exhausted and in pain.”

C. X-rays standing. Difficult if you have a forward curving spine. “I have this problem and was unable to stand at the machine as wanted. Our Neurofunctional Chiropractor uses OptoDrum and I have the App on my phone. It relaxes my spine enough that I am able to manage at the hairdressers backwash, dentists etc. I looked at the black and white line moving screen for about 20 seconds and my spine relaxes enough for me to get into the correct position. The x-ray was quickly taken. Staff asked for information as it could help others.

OptoDrum is an easy to use replacement for a bulky optokinetic drum or a fraying cloth tape to elicit optokinetic nystagmus for evaluation of neurological, ontological, and ophthalmological disorders. [Do not use if you have epilepsy]

D. MRI’s. Getting on and off the table. “I had to have 4 MRIs the Dr. ordered sedation for the one that lasted 45 min. The techs decided that I didn’t need it so didn’t give it to me. I had pain down my leg from my back that was so bad I couldn’t keep still. They said try to keep still which had become impossible.”

“ I could not lie flat due to spinal curve. With my knees bent they managed to get push my head and shoulders into the MRI. Pain in back was horrendous. Crying in pain I managed a 2 minute then 3 minute scan then had to beg to come out I could take the pain no longer.”

4. Ward routines. We fully understand that there have to be routines but not every patient can easily fit into that routine. Have you experienced issues and if so were they easily sorted?

A. Meal Times. Did they match your routine. Were you able to eat what was offered, e.g. any intolerances or allergies. [One example from the past was returning from a lunchtime OT appointment to be told you have missed dinner and I know you cant have dairy but we have some custard you could have. Response to how do you make custard, “I don’t know I get it out of a box]

“No the food: It was horrendous. I don’t think I ate three meals other than a couple of breakfasts the whole time…. I was lucky to have people that cared. There were days near the beginning that I was hungry.”

Dairy allergy. Not allowed to keep my dairy free spread and milk in their fridges. Ended up using cool box by bed and relatives bringing me freeze blocks each day.

B. Therapy. Physiotherapist coming onto the ward and telling you/demonstrating exercises and how many repeats you will do? Have you been asked if you have any issues or when you have explained your inability to do ten repeats have you got the ‘I am sure if you try you could’ response?

C. New Medication to be added to what you already take. Have you just been given the medications on the ward round? Was the medication/dose/timing/possible side effects/issues with timings of meds already taken etc discussed? Were you just handed them in a plastic folder/envelope on discharge without comment? All the above have been reported as issues.

D. Mobility Aids you take in with you. Four report electric wheels kept in another room. So you had to ask someone to bring it to you so you could get to the toilet/ bathroom.

E. Equipment you take in with you. Bi-levels, Cough Assist, Anal Irrigator, etc. [One example Staff Nurse “Oh you have a CPAP,” You reply “No, it is a bi-level” SN response “What is that?” Explained similar to CPAP but lower level to breathe out. SN “I will have to check with the doctor that you can use this”

F. Having a relative/carer with you. We have many reports of issues that have been experienced that are eliminated when you have someone with you. These include:-

Incorrect medication, dosages and/or timing errors not made. Incorrect fitting of masks of respiratory equipment even on Respiratory Ward. Mucous clearing immediately when needed. Bringing wheelchair to bed to go to the bathroom. Providing urine bottle. Assisting to use commode. Help with drinking when needed and eating whilst food hot. Obtaining food that you can eat from shop/restaurant in hospital. Assisting to move/sit up/lay down/turn over when needed. Providing verbal and printed information on post-polio issues and how you manage them.

The saving of time and NHS resources is huge as are the benefits to the patients health and recovery. Other family members concerns are lessened.

If you do not have anyone to be with you. What did/do you do? Please write/email us, all suggestions / ideas will be gratefully received.

Michael’s Sciatica

What can happen when a polio survivor falls.

A few weeks ago, we had an appointment at Specsavers and as usual I visited the loo before we left. As I tried to stand up my foot slipped away from me, and I ended up on the floor. I tried to get up without any success and as we were in a hurry, I called to my husband for help.

I wear UTX Swing callipers on both legs. They are very helpful in supporting my hyperextending knees but in order to bend them I have to release a catch or be standing. To get up from the floor I would have to bend them and it was too difficult in that position. If I had more time, I would have removed the callipers, and then crawled to a suitably sturdy, low chair in the living room. Then I would have lifted the left side of my bottom on the chair and pushed with my right leg and with my hands on the chair, I think I would have been able to get up. I have managed to do this in the past and will have to check to see if I can still do it. But there was no time, so my husband came to lift me up from behind in the small space and as he tried to make sure I was standing he pulled a muscle in his back. Not on the left side where he often suffers from pain but on the right side. He usually wears a support when lifting heavy objects. But there was no time!

The next day he had a shooting pain down his leg and his research on the internet diagnosed it as sciatica. He did not even think of asking a doctor because getting an appointment is too difficult, but looking and searching on the internet is much simpler. You get sciatica when something presses or rubs on the sciatic nerve. The most common cause is a slipped disc. He found out there were two forms of sciatica, one when the sciatic nerve gets caught in the spine, the other when the nerve is under pressure from the piriformis muscle. when lifting something improperly. The sciatic nerve passes through this muscle and can damage it. Regardless of what type you have, the shooting pain down one side of the leg is the same and the treatments are the same. My husband decided that he had the second reason for his painful sciatica.

Ice packs and exercise seemed to help him, but painkillers did not. He also rested and tried to walk through the pain He was hardly able to walk for a few days, but he persevered with his selfcare treatment and gradually got better. Of course, I felt very guilty because I was the cause of his sciatica and resolved to make sure that in the future. I can get up from the floor by myself.

By Zsuzsannah Snarey, Trustee.

Editors Note: A lot of polio survivors share stories on many lists/groups etc. More and more of us are falling and having to struggle to get up from the floor.

Back in 2001 Richard was to have Rotator Cuff Surgery on his right shoulder and Dr. Jaquelin Perry response was for Richard to wear his right arm in a sling as it would be post operation. Then to practice all transfers. He did this and it was really beneficial as he did not have to think how am I going to do this. It was still painful but so much easier not having to think HOW?

I recommend that we all look at how would we get up if we fell on the floor? How would we manage to do all sorts of actions of daily living if we had one arm or one leg out of action? Then there are the varied heights of couches, chairs, in our and our families and friends homes… and even more issues in public rooms. Disabled toilet heights are varied. We now carry a toilet raise seat in our vehicle and I don’t go anywhere without my mobile phone.

Thinking back over the last 35 years I have had to modify the way I got up from the floor seven times and for the last 3 years the only way possible has been by Carer using a hoist. My riser/recliner chair and bed are both now raised on 3 and 6 inch wooden platforms. I recently learned that my left hip and right ankle are weaker now than they were when last tested. It is a year to the day GP referred me for an electric wheelchair and maybe a couple more months wait but with the rise facility life will be so much easier at home and when out when it arrives.

In memory of John Graham De’Ath, Air Commodore RAF (ret’d), MBE, MA, FIMgt, who died peacefully on 10th April 2023 aged 90.

John was an accomplished athlete and Olympic triallist before suffering from polio in his early twenties. After making what appeared to be a full recovery, he managed to return to a high standard of short and long-distance running and squash, among other sports.

In 1951 he joined the RAF as a Cranwell cadet straight from Whitgift Middle School in Croydon and, as an officer cadet, was selected to line the route at the 1953 Coronation. His RAF postings took him all over the UK, as well as Malta, the United States and Germany.

John retired from the RAF in 1986 to take up a post as Home Bursar at Jesus College, Oxford, where he had a happy and successful second career. During this time he developed post-polio syndrome, which eventually forced him to retire from his College post. During his time in Oxford he was heavily involved in various sporting organisations, including the RAF Athletics Association, Achilles Club, Oxford University Athletics Association and Oxford University Air Squadron. He was an active campaigner for women’s sport.

Despite being a wheelchair-user from 2010, John continued travelling around the world with the help of his wife, Sonia. Sports, wine, music and travel were his passions.

He passed away peacefully on Easter Monday in a care home, after several happy days spent with his family, singing along to favourite songs, joking, and smiling to the last.

Please support The Brain Charity by writing to your MP

The Brain Charity will launch our ‘It’s All In Your Head’ report in Parliament next month.

This report examines responses from more than 800 people with neurological conditions, who told us about their delayed diagnosis and misdiagnosis journeys. It also highlights other key themes including a lack of awareness and support, and the impact on mental health. Please ask your local MP to attend our launch event in Parliament on Wednesday, 6th September at 1:00 p.m.

By coming to our event, MPs will hear directly from those affected, and we’ll ask them to pledge their support for the 1 in 6 people in the UK living with neurological conditions.

To find more information on how to email your MP and download our customisable template letter visit https://www.thebraincharity.org.uk/write-to-your-mp/

Ok I am not going to hide it; I am in full holiday mode! This is our first time travelling as a family since 2019. We are flying to Germany and heading to the Black Forest (and yes it was the thought of eating copious amounts of gateau that was the inspiration!) for 10 days then flying on to Italy to spend 10 days in Tuscany. La Dolce Vita!

It got me thinking, some of you must have some amazing travel stories to tell, I imagine some are amusing for all the wrong reasons – I know ours are (husband picking up his brother’s passport which we only discovered on our way to the airport for our honeymoon – oops) and other trips will hold precious memories.

Perhaps overseas travel never was your kind of thing or maybe travel may no longer be possible for you now. There are various ways to find joy and relaxation closer to home. You may have discovered your own “happy place” in a nearby location — a park, beach, a local café, or even your own garden. These places offer solace and a sense of peace, serving as a getaway from the stress and routine of everyday life. Exploring and appreciating the beauty and tranquillity of our own surroundings can be just as fulfilling as embarking on overseas travel.

For those of you with specific accessibility needs, finding a destination that caters to your requirements is crucial – have you found a great place that caters for all your accessibility needs? Do you know of a travel company that is definitely worth knowing about? In some regions, infrastructure and accessibility standards may be lacking, making it difficult to move around comfortably. It is essential to raise awareness about these issues, sharing personal experiences to highlight the need for improvement. By doing so, we can advocate for change and encourage destinations to invest in accessibility measures, making travel more inclusive for everyone. Perhaps you have strong views to share due to a bad experience in trying to get about in an part of the world that should be much better?

Why not tell us about your experiences? We would love to hear from you.

Take care

Toni x

From our readers:

Thank you so much for all the publications, they are very useful.

Looking forward to seeing you at the Annual General Meeting.

I enjoy © Polio Survivors Network – Volume 11, Issue 2/12 [122] JULY 2023 reading Page 12

K McRae shared this experience “I had polio 71 years ago which paralysed and deformed my chest, spine and whole body. In October 1952 the NHS put me in an open air unheated TB isolation ward in Oswestry which was 60 miles (3 train rides) away from my parents in Weaverham. After year of being cold, oftentimes bullied, in a bed on wheels and multiple failed operations I was sent home in a war surplus canvas pram so someone found me a 1930s wooden wheel chair. Sir John Deanes Grammar school took me back on a trial basis. I won a Scholarship to Manchester University in 1961, worked at Ferranti computer research, I have been Financially independent since and have never received any means tested benefits, but was able to send £thousands home to repay my family. Unfortunately Manchester smog and motorway traffic along with deformed lungs forced me south to English Electric Computers Kidsgrove. The &70’s winters froze me and immobilized my wheelchair forcing me further south to Portsmouth where prevailing South West winds over thousands of miles of the Atlantic sea brought pollution and pollen free air which stopped my hayfever and breathing problems.”

Neuro Key have recently launched – the My Life Tool, led by lived experience, which has been adapted by participants living with Long Covid and is now available – along with downloadable booklets. Please take a look http://mylifetool.co.uk/LongCovid.html

Website www.na-tvdny.org.uk

An interesting recording is available of the Polio Health International meeting where Rhoda Olkin spoke on “Promoting Positive Solutions for Aging with Polio/PPS” https://youtu.be/62B798PV1LA

We are sad to inform our members that Polio Epic has now closed “After almost 40 years, we are finally closing down the Polio Epic, Inc. support group. Inside the newsletter, we give you many different resources to get your information. We will also keep http://www.polioepic.org website open until after the first of the year (February 2024). Please consider joining PHI (Post Polio Health International). PHI has been available since the 30s, and is the largest clearing house of information in the world about all things Post Polio ! PHI also maintains a medical group of accredited medical doctors that still treat polio survivors and keep up with all the latest research.”

Dr Simon Shaw has left Lane Fox As you will know, Dr Simon Shaw, consultant in rehabilitation medicine has now left the Lane Fox Unit at Guy’s and St Thomas’ (GSTT) NHS Foundation Trust. In September, he will begin his new role as Clinical Director for the National Spinal Injury Centre at Stoke Mandeville Hospital near Aylesbury, Buckinghamshire. The Fellowship will write to the Clinical Lead for the Lane Fox Service to ask about the future, but we are aware the role of Consultant in Rehabilitation has been advertised. In the meantime, Simon will continue to work with the Fellowship on the Optimal Care Pathway (formerly known as the Healthcare Pathway). Castledown FM radio interview Kripen Dhrona, BPF’s Chief Exec was invited to take part in a radio interview on Thursday 20 July, for Barry Rhodes’ Talk of the Town program on Castledown FM (a local Wiltshire radio station). Barry asked Kripen for an update on the polio vaccination campaign for children and about the challenges facing those living with the late effects of polio and Post-Polio Syndrome (PPS). You can hear a recording of the interview here:

https://vimeo.com/847997067/0139bd91ac?share=copy

Useful Resources

• International Ventilator Users Network

www.ventnews.org

• Disabled Motoring UK

www.dmukdiscounts.co.uk

• Pain UK

www.painuk.org

• National Voices

www.nationalvoices.org.uk

• Neurological Alliance

www.neural.org.uk

• Rare Disease UK

www.raredisease.org.uk

• End Polio Now – Rotary International

www.endpolio.org

• European Polio Union

www.europeanpolio.eu

• Post-Polio Health International

www.post-polio.org

• PA Polio Survivors Network

www.papolionetwork.org

• Polio Quebec

www.polioquebec.org/eng/

• Polio Survivors of Marin

www.facebook.com/groups/163909760771171

• Atlanta Post-Polio Association

www.atlantapostpolio.com

• Nebraska Polio Survivors Association

www.nepolioorg.ipage.com

• Polio Australia

www.poliohealth.org.au

• Word-Wide Fellowship of Polio Warriors

www.poliowarriors.org

PHI extends our gratitude to those of you who were able to help make our recent lecture with Dr. Vandenakker Albanese a success. For those unable to attend, the recording is now available to view on our website at https://post-polio.org/education/ post-polio-experts-present/.

It as also available on PHI’s YouTube channel along with many additional videos at https://www.youtube.com/@postpoliohealthinternational.

Post Polio Matters Volume 11 Issue 1

© Polio Survivors Network – Volume 11, Issue 1/12 [121] APRIL 2023	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire Post-Polio Library100+ articles

Polio Survivors Network Newsletter

APRIL 2023 – Volume 11 Issue 1 of 12 [121]

See Page 10

HEALTH PROFESSIONALS – How we can help you?

POLIO SURVIVORS are a NIGHTMARE because the success of the polio vaccine reduced the number of facts taught by your Colleges of Medicine. The polio virus damage is scattered throughout our body and rarely do two of us have the same level of nerve damage/issues – so no set pattern

We have now developed another condition ending up in your department.

What we respectfully ask is that you take on board that we had damage from the polio virus in our earlier lives and that can have an impact on the way we respond to questions

Change asking “CAN you” to “HOW do you” do an action and see how we developed our way to achieve that action

Single Action Manual Muscle Testing

will not show weakness that starts later than the first action

Sedative and muscle relaxant medications and anaesthetics we need to start on much lower doses and titrate up if needed

Post-operative recovery times we need to start slowly and can take much longer to recover Standard OT equipment we may need it modifying

Levels of therapy we cannot do ten repeats, maybe 3 or 4 at a time.

MANAGEMENT OF POST POLIO IS BY PACING AND RESTING

Continued on pages 8 to 13

INFANTILE PARALYSIS POLIO POLIOMYELITIS PARALYTIC POLIO

POST-POLIO SYNDROME POST-POLIO SEQUELAE

N O N – P A R A L Y T I C P O L I O

S P I N A L

B U L B A R P O L I O

P O L I O E N C E P H A L O M Y E L I T I S L A T E E F F E C T S P O L I O

Page 2

This publication is provided free thanks to the generous donations of members.

Thank you so much!

Page 2	Contents, donations
Page 3 – 4	Editorial by Hilary Boone
Page 5 – 6	From our Chair Simon Parritt
Page 7	Verite Reily-Collins, AgeUK, Channel 4, PSN Annual General Meeting
Page 8	Management of Post-Polio Syndrome.
Page 9	What is Poliomyelitis?
Page 10 – 11	Post-Polio Information for Health Professionals working in other specialities.
Page 12 – 13	How the Polio Virus affects our nerves. Why we need to Pace and Rest Activities and use Aids, Equipment and some human help and the benefits of doing all this.
Page 14 – 15	Explanation of some other issues Polio Survivors are experiencing.
Page 16 – 17	Toni Writes, From our Readers, What You Need to Know About My Condition
Page 18 – 19	Our Advice to Polio Survivors – Getting Ready for an Appointment, Where Should I go? Who Should I see?
Page 20	From Our Archives – Frog Breathing
Page 21	Naidex, Occupational Therapy Equipment
Page 22	Warn & Wise Scheme in Lincolnshire, Easyfundraising, Funnies
Page 23	Management Committee, Donation information, Articles to support PPS
Back page	Channel 4, New Book – Making a Difference, Rare Patient Voices

Donations and Charity Incentives Paid(since last newsletter)
Donation (J Dunham)	15.00
Donations raised at funeral of C Oliver	80.00
Smile.Amazon	11.94
Donation (Lincolnshire Neurological Alliance)	50.00
Gift Aid from donations Apr 22 – Mar 23	53.75
Donations raised at funeral of D Taylor	515.00
Donation (V Scrivener)	30.00
Donation (D & J Shaw)	12.50
Total	£768.19

PayPal donate link:

https://bit.ly/2KzyAyE

Editorial by Hilary Boone

16.3.1947 – Summer 1952 – 1962 – 10.10.1988 – 25.11.1995 – 5.4.2023

Six very important dates for me.

16.3.1947 May 1952 1962 10.10.1988

The day I was born.The day I became paralysed waist down with poliomyelitis.The year after operations on both feet I reached my best recovery level.The day I fell and started to have new and unexplained issues.

25.11.1995 The day I replied that I was not better but had had polio in my earlier life and asked could that be the cause of the last seven years unexplained problems.

5.4.2023 Today 27.5 years of gradual functional decline, managing well by pacing and resting but the doing time is less and the resting time is more [especially after Covid] and using more aids and equipment and physical help from others.

Far too many polio survivors around the world are reporting being told things like “you don’t look as if you had polio to me”, “Post-polio does not exist and even if it did you would not have it” “oh its post polio live with it”, or “It is just old age it is nothing to do with polio”, etc. I am sure our readers have heard many other responses.

Your committee have been discussing what information we have gleaned that might help our members and the health professionals that we are being referred to in other specialities.

This led to the text on the front page and the article continued on pages 8 to 13. If any members or readers of this newsletter from anywhere in the world have any additional information or experiences they would like to share please send them to us. It is only by sharing with other Polio Support Groups around the World that we [and others] can add more information to our databases of issues and ways to manage them.

We are all different – a nightmare for health professionals – but rarely does the information not help someone. We would rather have ten copies of the same information than none, so please get in touch.

As I typed this my very early years of researching into Post Polio dropped into my mind and I had to chuckle. I will admit that in the first year I printed off article after article that I found and you could have wallpapered my whole house!

We learned in 1996 that Polio was a half hour lecture along with leprosy for doctors in training . Over the next few years speaking with local members and other polio survivors on our charity telephone line we heard about health professionals throwing the information handed over into the waste paper bin saying it was rubbish. One person having paid for the printing asked a nurse to get it back only to find that it was no longer in the waste paper bin. Others reported being told “you do not look as if you had polio” as the health professional followed from waiting room to consulting room prior to any examination. At a conference a neurologist speaking on Multiple Sclerosis told me “Don’t send me any polio survivors I know nothing about polio”.

Your committee at that time started to discuss all this. We tried play acting as a health professional to see how would we react if we came to see us. We began to see how difficult it would be for a health professional having only been taught a few facts about polio, probably only seeing those medical book photos of the most severely affected, to suddenly find themselves opposite us in a consulting room. Remember most of us have been having problems for some years before we took the plunge to seek help and the last place we want to be is in their office. I know my facial expression would give away what I thought if they said something not quite correct!

We developed My Polio Life which suggested that you self assessed how you did actions of daily living and put them in order of importance. [see overleaf]

Then find out how much time is likely to be allowed for your appointment and practice being you and the health professional to see what you might be able to talk about during the short time allocated. Pick the problem that was affecting you the most so that they could assess the issue and discuss it. If there was time for the next issue on your list then you could continue with that or ask for another appointment.

It is not the fault of a health professional if they have not been taught enough facts about the polio virus and how it affected our bodies. There are many conditions to learn about and that is why many health professionals specialise.

So in 2023 we have tweaked our advice to the following.

What is important is that you are well prepared for every appointment with specific information on the issues you have been experiencing. [See page 18]

MY POLIO LIFE – we believe is the best starting place to read through and decide how the pages might help you build up a file of information about your Polio Life. This file is for you to record any items that you think will help you pick out relevant facts for each future appointment. Add test results, photographs, anything that corroborates the stages of your polio life.

https://poliosurvivorsnetwork.org.uk/new/wp-content/uploads/2021/07/My-Polio-Life.pdf

You could ask the person attending an appointment with you to bring the file with them in case you need to refer to it for a date or test result. We do not recommend having this file on show. A definite no no is bringing a bagful of medical articles with you. Imagine if you were the health professional and knew little about how polio survivors manage their lives, and you saw your next patient dragging a bagful of medical articles behind them!!

USING Page 10 of My Polio Life – Actions of daily living. Work through our list and add anything missing. How did you do each action when you were at your best? Believe me we have seen polio survivors that have developed the most amazing ways to complete tasks. However when asked by health professionals can they do the action they have been so proud to say YES, but it never occurred to them that the health professional now had absolutely no idea how they achieved this. Next, when did you start to have new issues? Have these issues increased and at what intervals? How are you doing the action now? The changes are the most important facts that you need to discuss with your GP and other health professionals.

Example 1, 2004. I asked the physiotherapist “why am I scrambling eggs with elbow rotation”? Her answer after assessment of the specific muscles that I should have been and were using – “because the muscles in your right wrist are very weak.” There is no way I could keep repeating an action as a Polio Survivors so I had just developed another way to do it.

Example 2, 1990 to 2023. Getting up from the floor. I have gone through seven different ways since 1990 but in 2021 realised I now did not have enough strength in my arms to push myself up onto the low stool. I had to butt shuffle to the bathroom and with the help of a carer be hoisted up by our ceiling track hoist till I could sit on the side of the bath. Take a few minutes to catch my breath and then it was stand and walk with walker but since my 12.7.22 fall [legs just gave way and I dropped to the floor] I must transfer to an electric wheelchair.

It is now 34.5 years since the fall that kicked off my post polio syndrome. It has not been easy seeing my NORMAL change over and over again but with support life is still great. The most important point has been the generosity of other polio survivors sharing stories of their lives.

We hope you find the remainder of this newsletter helpful in your PPS journey.

Your Committee needs help please. We are doing our best to manage our physical health, getting older and dealing with all the paperwork that brings. If you could spare us an hour or two a month to take on a task then get in touch. Our meetings are held on the internet but with the facility of adding someone via their phone. All members/readers are welcome to send us any info on anything that might help us manage/enjoy our lives move fully.

From our Chair …

The Hospital Experience

For the first time in 25 years I was admitted to hospital for an acute event. I thought that despite my own issues, important lessons can be learned about how we need to be pro-active and prepare, just in case. As we age, we gather more conditions and risks and so the importance of polio as a pre-existing condition becomes vital in getting correct and safe care.

Disabled in hospital

Being a disabled person and a polio survivor in an acute hospital environment is not easy for us or the staff. Being ill is one thing, but being a polio survivor poses problems for both the quality and safety of our care. Being ‘ill’ is something hospitals are there to deal with, but the complexity of my PPS muscle weakness and breathing issues are largely unknown territory for all nurses, medics (including consultants), physios and radiographers. No one has seen or often even knows what polio is. So they will ignore it unless you, or your advocate, make it absolutely clear what you have and importantly what you need as a polio survivor.

I am lucky but …

I am extremely lucky having my wife, Alexa, who has had to suffer my slight obsessiveness around everything from my ventilator use to test results and even my preferred medications. Her expert ability and familiarity with everything from washing, dressing and even sometimes eating is invaluable. I am aware that the combination of being disabled, a polio survivor and a psychologist can be challenging for those who care for me. The fact that she is there to inform and be my advocate and carer in this medicalized, disabled, unfriendly environment was critical. I am also lucky to live 20 mins from a major London teaching hospital where I used to work many years ago. I know many of you are far from such services and expertise but all the more reason to ‘be prepared’.

Polio is unknown and confusing

It was 24 hours before there was a bed on a ward. In A&E I overheard a discussion that the ward are reluctant to take me as I am ‘too dependent’ a reference to my disability issues rather than my acute respiratory infection. I was testing negative to both major flu types and Covid-19 and my chest X-rays were confusing to them as a polio survivor with scoliosis, a spinal fusion and what they referred to as ‘odd lungs’. A couple of days later a PCR test identified parainfluenza 3 – a respiratory virus usually affecting young children and rarely more than a cold in adults – maybe the pandemic or my other conditions had made me more vulnerable.

Communication and information issues

My wife and I were constantly asking medical teams to contact my polio respiratory consultant team who were only 10 miles away but in a different health Trust and area. Communication between hospitals is problematic and slow at the best of times! My wife chased up with direct calls herself and eventually some exchange seemed to have taken place, though we were not privy to what or with who. However there seemed to be no sharing of x-rays or other medical data. This is another warning, always ask for copies of all your medical tests and assessments as you can never rely on them being available if and when and you need to share them especially in an emergency situation.

Managing Conflicts

Eventually a bed was free on the respiratory ward. I will leave aside some of the more bizarre, if not comical moments, the most amusing being is a tug of war between my wife and a nurse who was intent on taking away my meds as she thinks I did not need them. Long story but the lesson is be assertive – I kept them.

Inaccessible on so many levels

Having worked as a clinician on wards some years ago it’s hard not to compare what seems a very different care staffing system and environment with what I experienced now as a patient. The ward is of course not accessible with little space around the bed, though luckily, I was not using my wheelchair, but the fact that I can’t use my arms, seemed not to compute. Again, my wife was doing the bulk of care support from helping me drink to helping with on and off with my BiPap. Of course she has to go home at night, and I was left trying to instruct nurses and HCA (Health Care Assistants) how to use my BiPap and explaining I need help doing the basics from using a urine bottle to feeding and drinking. Leaving the call button close on the bed also doesn’t help as I can’t use my arms if it slips away. I lay there thinking what if I start choking and I can’t get hold of the call button. Worse still do they even know what to do with me and I have my BiPap mask so it would be very difficult to call out.

Inpatient care and disability awareness

Two days in I wasn’t offered help to wash or change and I had to repeatedly explain with each shift change how to deal with my BiPap as well as my need for assistance toileting, feeding and drinking regularly. I asked ‘politely’ if there was actually a care plan in place for me. The nurse looked puzzled and said ‘I’ll get someone.’ I was visited by the ‘Nurse’ in charge and I explained again, and some things did improve. However I am aware that without my wife being there a large part of the day and evening I would have struggled to get the basic care I needed. No one has ever seen or understands polio and how this impacts other conditions as we all can get as we age. So had my condition worsened I wasn’t confident they would cope.

The reality is that there wasn’t a full assessment process relevant to disabled people. For this reason it is essential that you have YOUR OWN care plan written out clearly by you prior to admission and if possible to have an advocate. We need, not just as PPS people, but all disabled people to educate and inform that we have impairments and care needs that work for and help us function in our home and that needs to be replicated, or at least understood, when we are in an acute hospital situation. The danger is we are not seen any longer as polio survivors but old people and treated, maybe with good intentions, in a totally inappropriate way.

Bottom line take aways

The ultimate take away is BE PREPARED before you need to be. Have a pack ready which includes instructions to give immediately to those who are treating and providing care when you find yourself in hospital for ANY reason. Make sure if you have a smart or iPhone if your medical data or care needs are extensive and that paramedics (or anyone) can access it without a pass code. Make sure it is updated regularly as your care or medical needs change.

Verite Reily-Collins

PSN Trustee, Health Journalist and owner of www.aftercancers.com

Email: veritegreenbee@gmail.com

Dear Readers,

I am a long standing campaigner for Age UK. Recently, I had the amazing opportunity to speak in Parliament about the unaffordable energy bills older people are facing. It’s an issue I feel very strongly about, after I was burdened with a colossal energy bill from my supplier.

I spoke at the All Party Parliamentary Group for Ageing and Older People – it is a meeting of MP’s and Peers from all political parties and was chaired by Baroness Altmann, a delightful person who made me very welcome and kept a lively discussion!

I shared my experience including how scary it is to have received an estimate for energy consumption this year. For my one-bed property my bill will be £5,500. That is half my pension! As a Cancer and Polio Survivor, it is so important to me to get across that older people need heat to survive. Many have chronic medical conditions. Some stay at home longer and move around less, so easily get colder, – sometimes dangerously quickly. We also need electricity to light homes, run stairlifts, charge mobility scooters, operate alarm systems, etc.

It is absolutely critical we’re given bills that we can afford to pay, especially when many of us are on such tight incomes. That is why I was so grateful to have the opportunity through Age UK to tell MP’s directly what older people are facing this winter.

I’m hopeful that sharing my story might mean politicians, from across the political spectrum, will support our campaign for a discounted energy deal for disabled people, carers and other people who are struggling with bills.

Website www.ageuk.org.uk/campaigns Twitter @ageukcampaigns

Age UK Lincoln & South Lincolnshire is a registered charity (1078539) and company limited by guarantee. Registered in England and Wales No: 3777156. Registered Office: 36 Park Street, Lincoln, LN1 1UQ. Age UK Lincoln & South Lincolnshire is an appointed representative of Age UK Enterprises Limited which is authorised and regulated by the Financial Conduct Authority for insurance mediation. Financial Services Register Number 311438.

Now that Smile.Amazon is no longer available for charity fundraising we have registered with easyfundraising, which means you can help us for FREE.

Over 7,000 brands will donate to us when you use easyfundraising to shop with them – at no extra cost to yourself! All you need to do is sign up and remember to use easyfundraising whenever you shop online. It’s easy and completely FREE!

Verite Reilly-Colins was recently interviewed by Channel 4 news. Watch the short piece here https://bit.ly/3L8k55e

Management of Post-Polio Syndrome. Huge variety of strategies to manage a huge variety of actions. BUT – how can we meld these into treatment for other conditions?

Your committee and more and more members are experiencing increasing issues when we are being referred to another speciality, visit A&E, admitted to a ward, etc.

Each department/hospital ward has their specialisms, routines, experience of assessments, treatments, etc., but when written they did not appear to allow for the fact that there are many people with other conditions that are unable to fit their regime.

The problem arises when a Polio Survivor with a diagnosis of Post-Polio Syndrome is already managing their condition in a way that provides them with the best outcomes and some of those ways are not easy to slot into the new departments treatment expectations.

A. New Out-patient situation we are being given what is worrying you/symptoms paperwork to complete; exercise regimes we are expected to comply with; told we will provide this equipment for your home etc that this department would normally offer’

1. The paperwork covers this condition but does not allow us to add in answers/information

relating to the fact that we are already dealing with some of these symptoms/issues.

2. Exercise regimes – without the knowledge of how polio survivors manage their symptoms

and lives we are constantly being pushed to try harder?

3. Standard equipment for the home often does not work for us because we perform actions

differently and the equipment could need modifying or might not work at all and staff will

have to see what else they can come up with. [This is now in the Masters OT Course]

B. In-patient situation

1. Our medical records state things like ‘fully mobile with aids’ but health professionals have no idea that we have developed trick ways to manage this and now we have another injury/condition we are struggling to find a new way of managing our normal actions.

2. We are seen to be walking across the ward but it has not been realised that our upper body is very weak and once lying back in bed we can do very little for ourselves.

3. The type of mattress we have been given does not match what we have at home, e.g.

An air mattress does not allow us to push ourselves up and move around on it.

4. The bedside table is on the wrong side and does not have the drawer handle that you use

to get in and out and turn over in bed, etc. .

Your committee have put together some information that we hope will help you and your new health professionals manage situations more easily that you might come up against.

Remember if you are reading this and you have some suggestions/advice/other examples then please get in touch with us. The more we share the more we learn and the better we can help each other.

OTHER MEDICAL CONDITIONS.

We can have these instead of or as well as Post-Polio Syndrome. Other Specialities we ask that you please take into account that our prior polio damage can impact on how we react/are able to react to your specialisms paperwork/routines/treatment etc.

Page 9 What is Poliomyelitis. Post-Polio Syndrome Criteria for a Diagnosis & Symptoms. Page 10/11 Post-Polio Information for Health Professionals working in other specialities. Page 12/13 How the Polio Virus affects our nerves. Why we need to Pace and Rest Activities and use Aids, Equipment and some human help and the benefits of doing all this. Page 14/15 Explanation of some other issues Polio Survivors are experiencing.

WHAT IS POLIOMYELITIS?

POLIO is the name given to one of three enteroviruses, Polio 1 [Brunhilde], Polio II [Lancing] and Polio III [Leon]

Viruses enter the body through the mouth and go on through the gut and in some cases even further to the central nervous system. There are over 70 enteroviruses and Coxsackie, A9, enterovirus 70, 71a among others can cause ‘polio like paralysis’.

The live vaccine is excreted for up to six weeks. Why families are/should be reminded to take extra care during the six weeks after a live vaccination. The figure was 1 in 2 million vaccine recipients of the live polio virus develop paralytic polio but recently this figure has increased. See the latest information at https://polioeradication.org/

THE RESULTS OF INGESTING A POLIO VIRUS

95.0% show no clinical symptoms

4.0% get ill from mild flu through weakness

[non-paralytic polio]1.0% become paralysed [paralytic polio]

and with Bulbar Polio need iron lungs and some did not survive.

NEW FUNCTIONAL DECLINE first appeared in 1875!

Four Case Histories were reported in the French literature by Carriere, Raymond, & Cornil and Lepine. These patients, all young men, had paralytic polio in infancy and developed new weakness, not only in previously affected muscles but also in muscles believed to be uninvolved at the time. All had physically demanding jobs and performed repetitive activities.

[Post-Polio Syndrome : Pathophysiology and Clinical Management, Anne Carrington Gawne and Lauro S. Halstead. Clinical Reviews in Physical and Rehabilitation Medicine, 7(2): 147-188 (1995)]

CRITERIA FOR A DIAGNOSIS OF POST-POLIO SYNDROME

1. A history of remote paralytic polio or 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, Arch Phys. Med. & Rehab. Jan/Feb 2000]

2. A period where we recovered.

3. A stable period of functioning, from 10 to 50+ years.

4. New symptoms for which there is no other explanation

POST-POLIO SYNDROME SYMPTOMS:-

Fatigue often overwhelming both physical and mental

Loss of muscle strength and/or use also in muscles below the line of clinically evident weakness at the time of the original infection.

Pain in muscles and joints

Trouble breathing and swallowing Problems sleeping.

Intolerance of cold causing muscle weakness and sometimes burning pain and/or discolouration of limbs.

POLIO VIRUS NERVE DAMAGE IS SCATTERED THROUGHOUT THE BODY THERE IS NO SET PATTERN – THERE ARE NO TESTS

IT HAS TO BE A DIAGNOSIS OF EXCLUSION

POST-POLIO INFORMATION for HEALTH PROFESSIONALS Working in non-polio related departments.

https://poliosurvivorsnetwork.org.uk/new/i-am-a-health-professional/

Polio Survivors Network was made aware in the late 1990s that Colleges of Medicine had been reducing the facts taught about polio. This was due to the polio vaccine success (12th April 1955) which reduced the number of people being infected by one of three polio viruses.

Some health professionals told us that polio was not mentioned during their training, others remember having a half hour lecture with leprosy and seeing photos of withered limbs and patients in iron lungs. Most of us do not match these photographs.

Polio Survivors Network research has picked up three possibly missed issues:

1. The high level of recovery many polio survivors reached

2. How questions are asked by health professionals and how polio survivors answer

3. Often a single action manual muscle test is used

Many members who have been in the armed forces, police, professional sportsmen and women, and had other physical occupations report being told ‘you must have had a mild case’ when in fact they had paralysis in at least one limb and some spent some weeks in iron lungs. The following slide is taken from the PowerPoint Presentation – Information from a Polio Survivors Perspective – and used by the author for over 20 years.

This slide is taken from a variety of PowerPoint presentations by our Founder, Hilary Boone. People who had polio and are experiencing new symptoms, after years of stable functioning, need to be assessed by medical professionals who are knowledgeable and experienced in the effects of the original polio infection, level of recovery, and post-polio. Unfortunately for health professionals, there are no tests to confirm post-polio, tests can only rule out other conditions, it is a diagnosis of exclusion.

Assessing a polio survivor, especially one who has not long learned about this later stage to having had polio, is not easy. Polio survivors are reported to be strong-willed, determined, and even pig-headed people who have got on with their lives achieving as highly as they can despite their level of polio damage. The last place a polio survivor with new medical problems wants to be is in a doctor’s office. Nearly all polio survivors I have met, fit this category including me. Many have blocked or suppressed memories and emotional responses to sights, smells and sounds from the past. One member only a year ago asked why the nurses in the UK did not wear black. Further questioning elicited the fact that he had been in a catholic hospital when he was having his surgeries aged 5 to 8 and the nurses were nuns first. Not once in 60 years had he made the connection.

It is therefore important to note that to be in your office polio survivors are likely to have been experiencing symptoms over a long time – months and even years – and they/we are reluctant to admit that actions of daily living are becoming harder. As actions of daily living become more difficult they adapt how they do an action and it becomes their new norm. Often they do not notice or don’t want to accept that this is happening. It is very hard to change from our childhood ‘Use it or lose it’ mentality. So many of us will respond to advice to pace and rest or start using aids and assistive devices with ‘But I am not there yet’.

You can ask five polio survivors ‘Can you get up a flight of stairs? All will answer ‘Yes’ and be proud that they can do this action. However, if you had asked ‘How do you get up a flight of stairs? The responses would be, [a] walks up, [b] walks up right leg first, [c] does the same but stops half way to rest, [d] also has to use the banister rail to pull themselves up and [e] sits on the stairs and goes up backwards one step at a time pushing up with their arms. Help us tell it like it really is by asking us ’How do we do x, y or z?’

TAKE THIS PATIENT FOR EXAMPLE

He was born in 1946 and grew up and went to school in New York.

He made the Gymnastics Team at College.

At the University of Tucson in Arizona, he gained a Bachelor’s Degree in English Literature, a Masters Degree in Special Education and a Bachelors in Nursing. He worked as a private school teacher in English and Science then as a Critical Care Registered Nurse in Cardiac Surgery.

MEET CHARLIE

On the left, he is 10 years of age. On the right, he is 53 years of age.

The photo above was when he was 19 in his college gymnastic team.

https://www.ssa.org/charlie-liteminner/

Member of POLIO EPIC Inc – www.polioepic.org

LIST OF POLIO SURVIVORS – https://bit.ly/41hnzb5

HOW MANY WOULD YOU HAVE REALISED HAD POLIO IN THEIR EARLIER LIVES?

CHART 1 – HOW THE POLIO VIRUS AFFECTS NERVES CHART 2 – WHY PACING and RESTING ALLOWS US TO DO MORE?

The Polio Virus damages nerves Acute Polio As more nerves die the muscle became weaker through to paralysis.

Recovery Nerves that did not die grew axonal sprouted roots that took over some of the orphaned muscle fibres, ? The muscle became stronger. Polio Survivors renowned strong willed and determined pushed ourselves to the limit and beyond to achieve. Anyone said we could not do something then we would do all we could to prove them wrong. Post-Polio Syndrome is a label given to many NEW symptoms. It is thought that one of the explanations of new weakness is that the axonal sprouts are dying off. Less nerve supply to the muscle and it becomes weaker.

It can take Polio Survivors months and often years before they seek medical help. The last place any Polio Survivor wants to be is in a doctors office. When we get that far, we have probably needed help for many months, sometimes even years. We do not like admitting actions are getting harder.

Polio affected muscles. When they start to weaken we are advised to pace and rest our activities. The chart to the right explains why Polio Survivors need to do this because there are less nerves in a polio affected muscle resting to take over when the working part of the muscles needs to rest and another part of the muscle takes over.

No Polio. On average 30% of muscle is used to perform an action and there is 70% resting to take over. Normal muscle power is graded 5. Polio Grades. When grading Polio Muscles there is likely to be far less nerve supply to that muscle. A Polio Muscle graded as 5 is likely to only have 60% nerve supply. 30% working and 30% resting. Polio Grade 3 only 20% working muscle, no resting.

Nearly all Polio Survivors… .achieved highly and way more than was expected of us from the level of nerve damage from our initial polio. A few remained in Iron Lungs, some progressed to a variety of other ventilation equipment, traches and oxygen. Some visibly lived with atrophied limbs, wore braces used canes, arm crutches, manual and electric wheelchairs. Many raised children and worked full time despite all the equipment they had to use. Others recovered that well [even from iron lungs and paralysis] that externally we do not look like the photographs in the medical books. Many went into office jobs but also Teaching and Medical Careers. Others physical professions like the Armed Forces, Police [author initially waist down paralysis], Fire Service, Professional Sportspeople, working on the land etc.

CHART 3 – HOW PACING/RESTING, USING ASSISTIVE DEVICES WORKS.

CHART 4 – HOW TO USE ENERGY TOKENS TO PLAN THE WEEK

Polio Survivors through Recovery and Stable Period of Function pushed themselves to the limit and beyond, often working full time jobs plus hours as volunteers, bringing up family, etc.

Once muscles start to weaken continuing to push hard to finish a task causes a lot of pain and exhausting fatigue. When you stop there is no energy for any other tasks. Less is achieved overall.

Stopping 20% before completing an action and resting allows that muscle to recover and do the action again. Pace and Rest each activity and use any aid/assistive device/human help so that you do not waste energy allows more to be achieved overall with less pain and less fatigue. As much as 240% more has been medically recorded.

USE ENERGY TOKENS, £10.00 A DAY AND £70 PER WEEK. There can be no set energy token chart as we all manage our lives differently. Write down your full days average activities and share out your £10.00. Now complete a chart something like the one on the right. Where will you use your tokens?

Remember washing, dressing, food preparation, eating etc must come first. Medical appointments/therapy next. Tip, bathe the day before. Only wash the bit they are going to look at on day.

Now shopping and social events adding rest time as you go. If you need 14 tokens one day then this chart allows 7 for the days either side. Using electric wheels means you can do more shops. Have a riser recliner taken to the Reception and stay longer meeting more folks. What aids/help can you use so that you don’t waste energy and do more of what you want to do. Changing the habits of a polio lifetime of pushing yourself to the limit ‘because I can’ is not easy but

PACING AND RESTING WORKS!

ACTIVITY BEFORE AND AFTER CHANGE	Time of day	Mins Doing	Mins Resting	Pain Level	Fatigue Level
Getting up, showering, dressing	8.00	30	90	3	5
Change to showering Put on underwear and callipers Now add top clothes30 mins resting instead of 90LESS PAIN and LESS FATIGUE	8.00 8.25 8.40	1510 5 30	10 10 1030	2	3
Walking round one store picking up items and pushing trolley.	11.00	15	180	4	7
Use electric wheels and you are now able to visit many more shops	11.00	180	120
165 mins more doing time.120 mins resting instead of 180LESS PAIN and FATIGUE.	165	60	2	4

MON	TUE	WED	THU	FRI	SAT	SUN
NIGHT
07.00	Wash	Wash	Wash	Bed	Bed	Wash	Bed
08.00	B’fast	B’fast	B’fast	B’fast	B’fast	B’fast	B’fast
09.00	Dress	Dress	Dress	Rest	Rest	Rest	Wash
10.00	Rest	Driven	Rest	Wash	Wash	Dress	Rest
11.00	P’work	Therapy	Shop	Dress	Rest	Driven	PJ day
12.00	Rest	Driven	Shop	Lunch	Rest	Wedding	PJ day
13.00	Lunch	Rest	Lunch	Driven	Lunch	Wedding	PJ day
14.00	Rest	Lunch	Shop	Hosp	Rest	Rest	Lunch
15.00	P’work	Rest	Driven	Hosp	Rest	Reception	PJ day
16.00	Rest	Rest	Rest	Driven	Rest	Reception	PJ day
17.00	Meal	Rest	Rest	Rest	Meal	Reception	PJ day
18.00	Rest	Meal	Meal	Rest	Rest	Reception	Meal
19.00	Rest	Rest	Bathe	Snack	Bath	Driven	PJ day
20.00	Bath	Rest	Bed	Bed	Hair	Bed	Bed
21.00	Rest	Bed	Bed
22.00	Bed
Event	P’work	Therapy	Shop	Hospital	Hair	Wedding	PJ day
8	12	7	14	7	17	6

6 5 4 3 2 1 0

Left Leg

Right Leg

Straight Leg Raise Repeats

6 5 4 3 2 1 0

Left Arm

Right Arm

Arms – Lift Item and Sustain

I self tested Straight Leg Raise Repeats – no pressure against

action and Lift Item with Arms and sustain at 3 second intervals

Manual Muscle Testing done a single time did not pick up weakness

Polio Survivors Network October 2018 30

SINGLE ACTION MANUAL MUSCLE TESTING.

Assessment time during appointments can be short and Single Action Manual Muscle Testing used. This can be unreliable where weakness in muscles is not evident until a few repeats or some seconds later than the time available for testing. There can also be issues where the pattern of movement is not tested, e.g. Arm tests of grip my fingers, pull then push against me.

“I spent seven years following a fall with new weakness and pain in my left arm with no corroboration of the reported symptoms.

From 1988 to 1975 normal results for Single Action Manual Muscle Testing had been recorded on all my medical reports.

In 2004 I asked my new rehabilitation consultant for a baseline physical assessment which was undertaken by a senior physiotherapist.

She started the appointment wanting to explain a new condition called Post-Polio Syndrome. I explained who I was and we started discussing assessments and why I believed they failed as the diagram above. We then concentrated on issues I was having.

Getting up from the floor now – I was using hamstrings and back extensors.

I asked, “Why am I now scrambling eggs with elbow rotation?’ Specific examination now found that I had very weak supinator’s in my right wrist.

Of possible interest is that in 1989 when receiving the results of my nerve conduction studies I was told they would operate on the ‘carpal tunnel syndrome’ in my right wrist. I refused as all the pain and weakness was in my left arm. The Doctor honestly suggested that I had mixed up my left and right sides. Could that ‘carpal tunnel syndrome’ have been polio nerve damage?

We therefore advise our members that

the most important facts to give health professionals are relating the changes in the ways they are now having to do actions of daily living

ask why this has happened?

To assist polio survivors to ‘see’ the changes in black and white (although this is often a difficult experience for them) we suggest that they make up a file of information on their lives. To assist them with this we have formulated a Self Assessment Tool called ‘My Polio Life’ Link to the tool is here https://tinyurl.com/mrrvzwj6

Completing page 10 has been eye opener for many. Up to then little changes became the normal way of doing the action. Provided they could still say “Yes” they could do the action polio survivors ’did not want to address the fact that changes were taking place’.

Action	At Best	New Issues
Lifting Saucepan	Lift large pan full of potatoes and drain.	Then sliding pans across hob and work surfaces and tipping pan of veg on edge of sink into a colander.
Climbing a flight of stairs	Two at a time – one flight only at Senior SchoolNormally.	First change to right foot first every step. Using banister rail and stopping for rests.Sitting on the stairs and going up backwards pushing themselves up a few steps at a time.

A good result as the chart above has been reported on, even by a Consultant with knowledge of polio survivors, as FINE. No need for any ventilator support.

Patient diagnosed Severe Mixed Sleep Apnoea resulted in an average of 7 hours a night on a bi-level ventilator.

7 years later following a heart attack stents were fitted resulting in better circulation but also a new symptom of excessive sticky saliva that now needed managing. Also has another neuro condition causing varying ability levels that can change anytime. Mix the two conditions together and the patient struggling to swallow the saliva choked and unable to move enough to remove the mask panicked thinking they were going to die.

Panic attacks increased over the next five years and bi-level usage reduced. Referral was requested to another hospital and within 15 minutes it was explained that when second swallowing the Bi-level thought the patient was asking to breathe in and triggered the [IPAP] IN pressure of 15 causing the patient to choke. Hospital advice that someone stays in the room to remove the mask when choking occurs enabled the patient to resume usage of a bi-level ventilator.

The need for usage is to enable the Polio Survivor to pace and rest the usage of their secondary accessory muscles of respiration. Charting has shown that at least 60 minutes Is needed for best daily function. This is currently done in two sessions. Resting in the afternoon and after medication for his other condition at 6.30 a.m.

POLIO SURVIVORS PULSE OX RESPIRATORY CHART

Send ecards that support Polio Survivors Network even when you don’t know the recipients email address – take a look here for more information

https://tinyurl.com/4n2uhmxe

Toni Writes …

I hope this newsletter finds you doing ok. I just had to include the photo of this beautiful big cat! Those eyes!!

I was feeling quite reflective last week and was thinking how life can certainly twist and turn so quickly. I wonder if you have ever questioned your decision making. I watched a piece on the internet about making wise decisions. It explained that our actions are usually the result of decisions we have made. Some decisions are made after a lot of serious thought, but others are made very quickly. No matter how much thought goes into deciding wise decisions bring positive rewards.

We all want to make wise decisions, but it is important that from time to time we review decisions we have made. We may find that we need to make a few adjustments. It can often be wise to consider the future when making decisions e.g. will we need a larger/smaller space in a few years’ time, will I need to go from a walking stick to a more substantial aid and will this require a larger boot space in my vehicle, etc. Thinking like this can help avoid expense and upheaval later. It is not easy to do though, accepting a circumstance and then planning with it in mind.

I also wanted to take this opportunity to thank you so much for the generous donations we have been receiving recently – it really is much appreciated. I have also thoroughly enjoyed the emails we have received; you are a really very inspiring bunch (or whatever the correct collective noun for polio survivors should be – host, crew, gaggle? – why not send me your suggestions)!

Take care

Toni x

From our readers:

I enjoyed reading the latest newsletter.

I had bulbar polio when I was just 2 years old. I am now 71 and have 2 grown up children and 3 grandchildren. I lost the use of the left side of my face and had several operations in Great Ormand Street hospital to put muscle from my thigh into my cheek! Still going strong!! I would just like to wish everyone who has had polio a good life!!

Can you help?

I am interested in the diversity of the folk with PPS and particularly how they manage pain and short sharp rapid deterioration of muscle in limbs, grip etc some may experience. I am also keen to map the vast range of medications that GP’s use for PPS.

Experience from one of our new members:

I had polio in 1956 and spent 3 months in hospital, in isolation for a few weeks then out on the children’s ward. My left foot and lower leg were affected. Obviously I had to learn to walk again. Strange to say but I enjoyed being on the ward because I wasn’t having any awful treatment, and as a result have never feared hospitals and worked in one as a medical secretary for several years. Also, whenever I’m ill now I prefer to isolate myself as it seems to have programmed me to believe that’s the best way to get well. I hate people fussing over me – just leave me be for a few days!! Consequently, the covid lockdowns didn’t faze me as much as for some people. I’m happy being indoors. Weird eh?

I’ve been more fortunate than many people in that I’m still able to walk, though much shorter distances these days. In my 40’s I used to swim 4 or 5 times a week, 50 metres at a time, head down, goggles on, front crawl, in the fast lane. I even did a few Swimathons. Now though (at age 70) I find it hard to get in and out of the pool safely and 20 lengths is about my maximum, once in a blue moon!

For pain relief I have a two-pronged attack. First and foremost I usually visit my osteopath once a fortnight to keep my spine in better alignment. I’ve been going to him for over 10 years and in the beginning he helped straighten out my polio-affected foot enough to improve my walking so that now I can feel my outer toes more on the ground and there is less over-pronation. Now he treats my neck and upper back mostly, and sometimes my pelvis. It’s expensive yes, (£60 a session) but I get so much benefit that it’s really worth the cost.

At night I use a magnesium spray on my neck, my good side hip and down that leg and foot to ease the daily discomfort so that I can have a good sleep. It takes effect within about 10 minutes, absorbed through the skin, so it doesn’t upset the digestion. Again, it’s quite costly because it comes from abroad and the delivery charge is high, working out at about £90 in total for 3 large bottles. That lasts me about 6 months. I prefer not to take ibuprofen or paracetamol.

My biggest problem when younger was buying shoes in 2 different sizes but these days, I just wear lace ups or boots so I get only the big size. I get them from Hotter and choose the ones with extra stability. An advantage of getting older (I’m 71 now) so I don’t care too much about fancy footwear!

I saw a neurologist Princess Royal Hospital, and Kings London who was very helpful getting a diagnosis of PPS but that was several years ago. She explained that I needed to pace myself to help manage the symptoms which really helped. But now I’m older, looking after grandchildren all day really exhausts me so I’m afraid I’m going to have to stop that soon. A shame, because I love their company, but I need to “conserve to preserve”.

I count my blessings every day and am doing my best to stay optimistic about the future. As long as I can still afford my osteopath I will be okay. He’d better not retire any time soon!!

Editors comment: to the piece about your grandchildren; I do not know how old they are and I do understand the need to pace and rest and maybe not do this anymore. However, I can say from my own and other polio survivors experiences that children can be extremely helpful if you explain your difficulties to them. Most of them love being helpful and it is very rewarding knowing this is going to help them in their future lives.

What You Need To Know About My Condition

Polio Survivors Network with the help of The Neurological Alliance has provided an aid for Polio Survivors who are going into hospital. It is a document which can be filled in to provide medical staff with an overview of your situation and needs.

An electronic version which can be typed into and then printed is available to download from our website (see News). For those of you who have a printed newsletter a form version has been included with your newsletter these can also be requested by email or downloaded from our website.

For download options please go to https://bit.ly/3oldoUt

The most important thing to do is ensure that the form is up to date and to hand if you are admitted to hospital, pop it in your ‘go bag’ just in case. We hope you find it useful and would appreciate any feedback.

OUR ADVICE TO POLIO SURVIVORS – Getting ready for an appointment.

Firstly, we understand how excited you are when you start researching and find article after article. Did you print them each one as you found it? I could have wallpapered my house with those I printed off the first few months of 1996. Please do not drag a bag behind you containing all these articles because there is absolutely no time to read any of them and how would you feel if you were the health professional?

Secondly, We advise that you take someone with you to every appointment that can take notes about what is discussed, remind you of anything important that you have forgotten to say, and have your My Polio Life file in their bag in case you need to refer to a date or test result. We do not advise placing the file on the desk at the start of the appointment.

Step 1 Who are you going to see and why and do you know how long the appointment is planned for and if any tests are going to be carried out?

The reason we suggest that you do this for each appointment is that if the appointment time allotted is only ten minutes then there will be questions to you and the answers and most probably a short examination followed by some statements from the doctor. This means that you may get about two minutes to get across what you want to say and ensure that the picture you paint in the health professionals mind is the same as yours.

Step 2 Write down the most important facts that have triggered this appointment. Work out ahead of time how to word this or maybe you could try asking to demonstrate the action or use pictures/ photos or charts.

Step 3 The appointment. Ensure you know where you are going and where the car park is and how far you might have to walk/ride/be pushed to the clinic. Preferably get someone to drive you there and arrive early enough to have a few minutes to recover from the journey.

Arrange with that person to take notes and with your permission remind you of anything you have forgotten to say.

Step 4 Make up an Appointment Sheet. Two copies and plenty of room to add comments because some health professionals have added notes to this sheet and added it to your medical file, others have not wanted the sheet.

Here are some ideas of facts you might need to record:

• Name and contact details

• Date of appointment and with whom including all their contact details

• Polio — The date, age and where you caught polio and the diagnosis and any equipment you used at the time, e.g. Iron lung, callipers

• Recovery — The level to which you recovered and your highest achievement(s)

• Other diagnoses

• Current medication

• Allergies

• Other relevant test results for this appointment

• Current issues starting with the most important or most demonstrable depending on

who you are seeing

• A couple of examples of visual ways that quickly demonstrate your new issues

• Part of a medical article with a relevant part to your issues highlighted.

Remember the time allotted for the appointment is important. Only raise issues that this health professional can deal with. You could list the other issues for their information.

Before you leave ensure you have raised all you wanted to and if you have run out of time ask for a second appointment. Ensure the person with you has recorded what has been said and if you require any further tests etc. Oh and don’t forget to thank the health professional.

Where Should I Go and Who Should I see?

This will depend on which of your symptoms are causing you the most problems, where you live, the cost of travelling and possibly hotel accommodation, if you have someone to go with you, your level of disability and if you have enough energy to manage the appointment, etc

Once you have looked at all these facts you should first approach your GP for their advice and the choices available to you. Sadly we have to report that finding health professionals with the adequate knowledge and experience that you need, especially in the UK, is not easy.

There were two issues that we came across in our early years. Firstly some hospitals were providing names and we learned 8 of them to their knowledge had never examined a polio survivor. Secondly some polio survivors with minimal knowledge of PPS and grateful for the amount of help they got were naming the professional as an expert. However, others with more post-polio knowledge obtained appointments on this recommendation but realised that the ’expert’ did not have the level of expertise needed.

Our advice is to contact your local/nearest Polio Support Group for advice.

If Polio Survivors Network is unable to help please try:

• International Ventilator Users Network

www.ventnews.org

• Disabled Motoring UK

www.dmukdiscounts.co.uk

• Pain UK

www.painuk.org

• National Voices

www.nationalvoices.org.uk

• Neurological Alliance

www.neural.org.uk

• Rare Disease UK

www.raredisease.org.uk

• End Polio Now – Rotary International

www.endpolio.org

• European Polio Union

www.europeanpolio.eu

• Post-Polio Health International

www.post-polio.org

• PA Polio Survivors Network

www.papolionetwork.org

• Polio Quebec

www.polioquebec.org/eng/

• Polio Survivors of Marin

www.facebook.com/groups/163909760771171

• Atlanta Post-Polio Association

www.atlantapostpolio.com

• Nebraska Polio Survivors Association

www.nepolioorg.ipage.com

• Polio Australia

www.poliohealth.org.au

• Word-Wide Fellowship of Polio Warriors

www.poliowarriors.org

• British Polio Fellowship (BPF)

www.britishpolio.org.uk

• Polio Survivors Ireland

www.polio.ie

• Scottish Post Polio Network

www.sppn.org.uk

• Cancer & Polio Survivor

www.aftercancer.com

From the Archives …

One of our members sent in this interesting older article. To see a video of the glossopharyngeal breathing (frog breathing) technique go to http://www.polioplace.org/resources/frog-breathing

Frog Breathing: Still Useful, Still Lifesaving by Judith R. Fischer

Frog breathing, the common term for glossopharyngeal breathing (GPB) because of the frog-like gulping technique, has been used for centuries by deep sea divers in order to fill their lungs with reserve air just before diving. During the polio epidemics of the 1950s, respiratory polio survivors accidentally taught themselves to use GPB, and Rancho Los Amigos Hospital under Clarence W. Dail, MD, in Downey, California, became the leading respiratory center for GPB use. GPB enabled a person to produce adequate ventilation without the use of equipment. Many polio survivors still use it during equipment emergencies, and as a way to stretch the chest and aid coughing. GPB can also be taught to individuals with spinal cord injury.

Basically, the mechanism of GPB is the same as that of a pump: the tongue and the throat act as a piston, and the mouth, soft palate, and larynx act as valves, resulting in an expansion of the lungs as air is pumped into them. Canadian polio survivor Gary McPherson describes the technique thus: “Frog breathing involves the use of the throat and posterior tongue muscles to hold the breath once you have taken it. A vital capacity three to four times the tidal volume can be achieved with frog breathing.

“You take a breath through your nose or your mouth, then hold your breath and add to it with gulps of air. I start by taking a neck breath with my accessory muscles. I get about 150 cc of air in my lungs and then I hold it. Next I open my mouth and draw my tongue and throat muscles down to allow air to enter my throat. Then I close my mouth and force the air down my throat with my tongue and throat muscles while I hold my breath. I call this inspiration of air a stroke, and I get about 50-75 cc of air into my lungs with each stroke. Since my average breath is about 800 cc and I started with 150 cc from the neck breath, I need about ten strokes per breath. Sitting and talking I need about eighty breaths per minute… Only when I have taken several strokes do I release my breath. It takes a lot of practice, and your throat and tongue muscles need to be active… “Frog breathing through the nasopharyngeal airway is very similar except you draw air in through your nose instead of your mouth. However, the stroke volume is somewhat reduced. The advantages of frog breathing through the nose are that it provides natural humidification, it eliminates the dryness of the mouth, and aesthetically it is less obvious to the people around you. The muscles used in frog breathing need to be exercised regularly to gain strength and efficiency.”

Augusta Alba, MD, who has helped many people learn frog breathing at Goldwater Memorial Hospital in New York, suggests one start by saying, “gup,” The “g” puts the ball of the tongue in the proper position to push a bolus of air into the pharynx. Then the “p” closes the lips while the tongue relaxes in the floor of the mouth. “gup” should be said repeatedly about 100 times per minute with a pause every 15 seconds to exhale. If there is enough air in the lungs, the air expired at the end of a series should last 15 seconds. Dr. Alba’s frog breathing studies show that effective use of the technique permits a more effective cough, improves lung compliance, allows more normal speech, decreases lung infections, and, of course, reduces dependence on mechanical assistance.

Audrey King, polio survivor and frog breather, says, “Those who have reduced capacities may find it a little harder to learn glossopharyngeal breathing because they guard the air they have and don’t relax their chests to allow air in. Also, if you say “gup” you need air coming out of the lungs to voice the word, and that’s the opposite of what you’re trying to do, so it gets a little confusing.. . .It takes about eight or so successful “gups” before you can feel your chest expanding and know that you’re doing the right thing, but once you get this feedback, you really are on to it.

“I think the best way to teach somebody is by having that person imitate the cluck sound that you make in the back of your throat. Then once you’re copying the cluck sound, if you form the word “gup,” but don’t actually voice it so that you have the lip and mouth movement, you can feel the air going in fairly quickly. Frog breathing can be done anywhere, anytime. It is great for fatigue, for coughing, and for getting a deep breath.”

Randy Haims, C-2 quad, learned frog breathing from a polio survivor while he was in a rehabilitation hospital following his accident. He did not use it consciously until about eight months later when he suddenly found himself doing it automatically. Haims asked his attendant to plug his trach, and frog breathed for about 25 minutes. He eventually worked his way up to almost two hours of frog breathing time. For Haims, the disadvantages are dry mouth and fatigue; he prefers to neck breathe.

Frog breathing is not easy to learn for some people; perhaps the best way is to watch another person “frogging.” John R. Bach, MD, of the University of Medicine and Dentistry of New Jersey, who also helps people learn to frog breathe, advises, “Frog breathing should be monitored by regular measuring of the volume of air per gulp and the number of gulps per breath. Many people are successful at it, but do not realize it.”

Once learned, frog breathing can provide valuable minutes of air during ventilator breakdowns or other emergencies. Gary McPherson states, “a person can rest comfortably knowing that he is ultimately dependent on himself, not on a machine.”

Reprinted from Ventilator-Assisted Living (formerly called IVUN News) with permission of International Ventilator Users Network (www.ventusers.org). Any further reproduction must have permission from copyright holder.

Occupational Therapy Equipment

Looking back at the front page of the last newsletter there are many items of equipment that can save you time and energy. Some everyone uses so that is easy. Others far too many of us have fought against because we think it will make us look disabled and regardless of the level of our polio damage most of us have not thought of ourselves as disabled.

NAIDEX or MOTABILITY ROADSHOWS are great to go to because there are so many people with different disabilities attending that we have noticed the able bodied can be in the minority.

Stores selling equipment for the disabled are also a place to try but we have noticed if you are on your own then the staff tend to follow you around which can be a bit off putting when you really want to try a piece of equipment.

Ladies do you remember going with friends to a certain store and trying the hats on? Not easy to do on your own but with others it was easy, so much fun with lots of giggles. The same works now, do not go alone, get two or more others to join you and it is much easier to try all sorts of items just to see how they work.

How many of you have told an Occupational Therapist or other Health professional that you have a problem and been told we can provide you with an x. You receive the x and it does not work for you.

An article in a very early newsletter demonstrates that out of ten of the items the OT provided only two helped.

Using aids, assistive devices and help from others

It is not easy changing the habits of a lifetime from being able to do a task to having to ask for help or return to or start using an aid or assistive devices.

However, I can report that whenever polio survivors get together and discuss this issue over and over again we say ‘once I tried this I found it so much easier and wish I had tried it much earlier’.

It is much easier if you can find someone else who has similar needs to go together and look and try what is out there. It is imperative that you try before you buy if at all possible because items can be expensive and many of us have been advised to purchase items and have later found that another version would have been much better.

Local or national exhibitions are great places to go. Try Naidex, Mobility Roadshows or look for your nearest Disability Living Centre or contact your local disability organisations.

 Support is available through home visits or by telephone

 Advice on how to reduce your energy use and bills.

 Fit free energy saving devices, such as draught excluders,

timers and LED light bulbs.

 Priority Service Registration.

 Maximise your income through grant and benefit checks.

 Provide energy saving tips, information and signposting.

warmandwise@aguklsl.org.uk 03455 564 144 [ext 1240]

If you are aged 50+ and would like help with your home energy we’re here to help.

Now that Smile.Amazon is no longer available for charity fundraising we have registered with easyfundraising, which means you can help us for FREE.

Interesting headlines

Grandmother of eight makes a hole in one. Two convicts evade noose, jury hung.

Queen Mary having bottom scraped. Panda mating fails – vet takes over.

Eye drops off shelf. Squad helps dog bite victim.

Enraged cow injures farmer with axe. Lawmen from Mexico barbecue guests.

Two sisters reunite after eighteen years at checkout counter. Something went wrong in jet crash, experts say.

Life

Sometimes you’re the hammer, sometimes you’re the nail! Sometimes you’re the bug and sometimes you’re the windscreen! Sometimes you’re the pigeon and sometimes you’re the statue!

Adverts

Dog for sale: eats anything and is fond of children.

Mixing bowl set designed to please a cook with round bottom for efficient beating.

For sale: antique desk suitable for lady with thick legs and large drawers. We do not tear your clothing with machinery… We do it carefully by hand.

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

Trustee – 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

PSN Admin, Enquiries and Website – Toni Dunlop 07480 110334 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, UK Email psnadmin@poliosurvivorsnetwork.org.uk

Phone us on 07480 110334 and we will ring you back when we collect 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

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!www.post-polio.org

Our very own trustee Verite Reily-Collins was recently interviewed by Channel 4 news – watch the short piece here https://bit.ly/41Rf6LN

MAKING A DIFFERENCE: Integrated Ongoing Neurological Support in the Community

The book is about the work of Integrated Neurological Services, a medical charity operating in the London boroughs of Hounslow and Richmond upon Thames www.ins.org.uk

The book is independently published on Amazon by the editors and authors. https://amzn.to/3KEMNsV

Nearly three million people in the UK have a neurological condition; Stroke, Traumatic Brain Injury, Parkinson’s disease, Multiple Sclerosis (MS), Brain Tumour, Motor Neurone disease, and many more, all affecting the person for the rest of their life.

The NHS provides treatment at the onset of a condition but after that there is a huge need for ongoing support. Research shows that those who are supported and know more about their condition are less likely to have to call on further in-hospital and GP care and there is enormous scope for improving the quality of life for those with neurological conditions. The right support, therapeutic and social, makes all the difference.

The book shows how those with neurological conditions benefit from integrated ongoing support provided in the local community and self-help, and how lives can be improved. It explains good practice and encouraging methods in the support and treatment of those with life changing conditions.

All the proceeds from the sales of this book are donated to the medical charity Integrated Neurological Services (INS).

Make your voice heard by participating in paid surveys, interviews, and online communities! Sign up and start talking to the right people. Panellists will be invited to participate in paid interviews, surveys or online communities where your insights can help researchers develop products and services related to your condition(s).

For more information see https://www.rarepatientvoice.com/rp/ PolioSurvivorsNetwork

Post Polio Matters Volume 11 Issue 1 Read More »

Post Polio Matters Volume 10 Issue 12

© Polio Survivors Network – Volume 10, Issue 12/12 [120] JANUARY 2023	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire Post-Polio Library
See Page 10Are you being LAZYusing labour saving devices?2023 New Year ResolutionTo try anythingthat might help me do more of the activitiesI would prefer to do

Polio Survivors Network Newsletter

JANUARY 2023 — Volume 10 Issue 12 of 12 [120]

Page 2

This publication is provided free thanks to the generous donations of members. Thank you so much!

Donations and Charity Incentives Paid(since last newsletter)
Donation (J & E Pullin)	£12.50
Donation (D Williams)	£5.00
Donation (A Smith)	£40.00
Donation (A Jackson)	£30.00
Estate of A Brown (final payment)	£46.93
Smile.Amazon	£14.21
Donation (P Galvin)	£12.50
Donation (J Edwards)	£25.00
Donation (Anonymous)	£1.00
Total	£187.14

Page 2	Contents, Donations
Page 3	Editorial by Hilary Boone
Page 4	Message from our Chair
Page 5	My Polio Life by Zsuzsanna Snarey
Page 6 – 8	Energy Costs Hit the Vulnerable – That’s Us!
Page 8 – 9	Does the NHS get its priorities right?
Page 10 – 12	Editorial Continued
Page 13	Request for Information – Constant pain
Page 14	Brain Charity Events, Neurological Alliance 1in6, A Call For Your Help, The Pocket Book of Pacing
Page 15	Toni Writes, From Our Readers
Page 16 – 17	Florence Lunde’s Polio Life, Useful Resources
Page 18	A Message From the Trustees – AGM, Making a Difference Cards
Page 19	Management committee
Back page	Polio Girl: It Only Takes One by Susan L Schoenbeck, Naidex, ChatBot

PayPal donate link:

https://bit.ly/2KzyAyE

Editorial by Hilary Boone

January 1st 2023. The start of the rest of your life doing less of the activities that you think you still need to do by accepting help in any form to manage the harder parts of tasks so that you can do way more of the activities you would prefer to do.

Polio Survivors are renowned worldwide to be pig-headed, strong-willed, do not give up till they have finished a task. When we were recovering from polio we heard folks say things like, “he/she will never be able to do this/that” and we would say to ourselves “Oh yes I/we will” and we pushed ourselves daily and achieved way more than anyone thought we would.

Post-Polio Syndromer’s will still overdo things at times even when they have accepted that things such as pacing and resting; using aids and assistive devices; help from someone more able to do the hard part of tasks etc., all allow us to manage our energy levels with less pain and less fatigue. Why do we do this? From experience, I thought that being able to tell my family/carers that I had not waited for them and had hung all the washing out myself was a good thing. However, when they got the courage up to talk to me about things like this they asked how much extra pain did it cause, how many extra hours did you just sit in the chair exhausted, what other tasks that you normally did without help did we have to have help with that day, and would I accept that I had been just a little bit ‘snappy’ in my answers to their questions and overall had I actually achieved more by doing it? I had to admit that I had actually achieved less that day.

We are all getting older and many have other symptoms/issues to cope with as well. Accepting help to do a task whether it be using a new piece of equipment or someone physically helping or doing the task for us is not easy. If by doing this we are in less pain, have less fatigue and can actually manage to do more of other activities that we would prefer to do… is that not better for us and for those around us? We still need to achieve and I wonder if you have you thought about the skills you have and is there another way you can use these?

Now that life is opening up again [still taking sensible precautions] have you thought about where you might do a talk about your skills or medical needs? Educational establishments, community groups, local charities, etc. We have been part of the Together Group at the University of Lincoln for many years and have shared our lived experience with those training for social and medical careers. We have taken part in Open Days, Interviews, Course planning, Lectures and more. On the plus side we have gained by hearing about the different ways there are of assessing us physically, obtaining information, completing forms etc. Students have asked us things like why do you do this that way. To us it is something we do as part of our normal life but putting it into words has made us realise we can now rephrase our replies to include the why in future.

It is with some sadness as a Founder Member of the Lincolnshire Neurosciences Forum in January 1998 that became the charity Lincolnshire Neurological Alliance that I now report…

Lincolnshire Neurological Alliance to Polio Survivors Network

Dear Member, iIt is with great sadness that we inform you that the decision has been made to dissolve the Lincolnshire Neurological Alliance as of 31st December 2022.

We have enjoyed the challenge of working with you all to improve the neurological services offered in Lincolnshire and know that there is still a very long way to go. We hope that those of you working with other specific neurological condition charities can continue to push for much needed improvements in neurology in our area. We are sure that although the LNA is no longer able to bring us all together that individually we will all continue to fight for change. Thank you so much for your help and support over the last 24 years and we wish you all the very best.

Kind regards, Lincolnshire Neurological Alliance

January 1998 – Lincolnshire Post-Polio Network [now known as Polio Survivors Network] became Founder Members of the Lincolnshire Neuroscience Forum at the inaugural meeting with the Director of Public Health Lincolnshire Health Authority and other NHS and Social Services staff. A few years later we became the charity Lincolnshire Neurological Alliance. 24 years with continual changes of boundary and/ or names of the governing body all promising to act on our constantly repeated request for better services for those of us with neurological conditions in Lincolnshire…. [continued on page 10]

MESSAGE FROM OUR CHAIR

Welcome to 2023!

I want to wish you all a really positive and PPS style healthy 2023 with perhaps a slightly off beat personal note on how, as a psychologist and a disabled person, I know that the way we think, and feel is hugely impacted by our physical health, social situation and finances. This is so often ignored when we seek therapy as it is outside our individual control and down to the environment. So many of us now live daily with anxiety and fear of needing an ambulance or a hospital bed knowing it might not be available this added to the ever-present anxiety that our post-polio and disability is almost certainly not going to be understood or addressed without a struggle.

We are here to help with information and support, But, what can I do now to build my resilience to all this? Last year I returned to an interest in philosophy and history.

“Be like the cliff against which the waves continually break;

but it stands firm and tames the fury of the water around it.” (Marcus Aurelius, Meditations)

I turned to a course about Marcus Aurelius born in Rome in 161AD and died in modern day Vienna in 180AD. He is probably one of the greatest Roman Emperors and philosophers. But interestingly for the times we live in now, from almost the moment he became emperor he was faced with devastating floods, plague and wars and the dealing with his own ill health. I am sure that his many years of philosophical training were what helped him navigate this and become one of the greatest and wisest Emperors of all time despite the adversities he faced.

Essentially modern cognitive behaviour therapy (CBT) is based on stoic philosophy. But going to Marcus Aurelius and reading about his life has helped me in a way that CBT never has. I find more depth and richness in his life than the short-term, generalised, often one-dimensional programmes of CBT available from the NHS and other sources.

So, my suggestion for 2023 is his to read about him and try the ‘Mediations’ where you can become privy to his private reflections and philosophy and see how much of it resonates and how it can offer so much more than much of today’s quick fixes. I hope it might be of practical help for us here and now nearly 2000 years later and of course give us the resilience we need to navigate our lives living with PPS and disability within the UK today.

“Because a thing seems difficult for you, do not think it impossible for anyone to accomplish.”

(Marcus Aurelius, Meditations)

Your Committee need more help please.

We are not only managing our physical health but getting older with all the paperwork that entails. We know of at least one group where they have two people for each post. If you could spare us an hour or two a month to take on a task then get in touch. Our meetings are held on the Internet but with the facility of adding someone via their phone. All members are welcome to send us any info on anything that might help us manage/enjoy our lives move fully.

My Polio Life – Zsuzsanna Snarey, PSN Trustee

Even though I had polio as an 8-year-old child, I had always been very healthy. With the help of my mother, I overcame my disability and coped with life as if I were able-bodied. I was not able to run and had to use a stick but that did not stop me from working. I gained a Chemistry degree at London University and met my husband (also a Chemist). We married and had three beautiful daughters. I became a part time teacher, I kept our house clean and tidy, did the shopping, attended evening classes in pottery, learnt to play the violin and joined an orchestra, later I joined the Manwood Singers and stood for long hours in concerts. I could lift, if not carry, heavy shopping bags, schoolbooks and after retiring from teaching before the age of 60, I became a chiropodist. I managed to lift and pull my chiropody case when visiting people in their homes. I carried on working until past the age of 76 when we moved to Nottingham.

I am quite used to tripping and falling but that does not worry me, I could always get up and hardly ever did any real damage until one day in January 2001 my good knee gave way in the shower, and I cut my right shin on the edge of the shower tray. The wound became infected and had to be dressed in the hospital twice a week. After about four weeks the wound became gangrenous and I nearly had to have a skin transplant, but when I was allowed to dress it myself daily it began to clear up and eventually healed.

In 2005 I was diagnosed with breast cancer and had to stop taking HRT which I believe helped my muscles and my joints because soon afterwards I started a steady decline. I started having joint pains and my stamina decreased dramatically. I had a lumpectomy followed by mastectomy. The two anaesthetics did not help me either. Later the advice about HRT was changed and now it is not stopped for people who had breast cancer. The following year we bought a folding wheelchair to take on holiday which was a liberating experience for both Michael and I and the year after that I had a Pride GoGo electric buggy because I hate being pushed. In 2011 we flew to Budapest with my family and took a small folding buggy, called a Luggie on the plane.

The day before Christmas 2014 I had a nasty surprise, I was diagnosed with Hepatitis C. I have no idea how long I have had the disease which is caught from infected blood. I know that it has harmful effects on the body. It may also have contributed to my failing muscle strength. I could have picked it up in the hospital in 2001 although one doctor suggested that it was caused by the blood transfusions sixty-five years previously when I had polio and was given blood with possible antibodies from a woman who had overcome the disease! I was hoping to have treatment but after two years of fruitless waiting I decided to buy the drug privately from India and took the twelve-week course and I was cured within four weeks. I have by now overcome three possible killer diseases: Polio, breast cancer and Hepatitis C not to mention falling headlong down the stairs three times. My husband insisted on buying a stairlift. So, I have stopped going up and down the stairs which was a very good exercise. It is possible that any one of these influenced my failing mobility, but it is impossible to know which one had the most decisive influence. Another reason for my declining strength is getting older, losing precious neurons daily after the age of fifty.

For quite some time I have been using a wooden stool to do the cooking. I now have a hairdressers’ stool on which I can scoot about as well as lower and raise myself. I sit down to use the vacuum cleaner, sometimes on the mobile stool, or a computer chair and I use the mobility buggy for trips to the shops and to cover any distances outside the house. I expect the day will come when I will need a wheelchair even inside the house, but I try and keep going as long as I can without it. I have a UTX swing caliper for each leg. It took many years of persistence to get them from the NHS. Now I am not able to walk more than a few steps without them.

I spend my time in doing mainly sedentary occupations, such as writing, reading, studying mostly on the computer, having spent nearly 18 years looking after people’s feet. But I know that too much sitting is not good for me, so to increase my strength I stand up from time to time and also try to do exercises. Of course there is always something more interesting or important to do, so recently I came upon an online physiotherapy App called OneStep and I have been following their exercise regime. I get reminders on my phone and I am in touch with a real physiotherapist who takes note of my particular condition.

Verite Reily-Collins – PSN Trustee, Health Journalist and Owner of www.aftercancers.com

Energy Costs Hit the Vulnerable – That’s Us!

Anyone who has had polio knows we suffer cold more than most. So heating my home is important to me, and when costs soared, I wrote to my MP to see if anything could be done. His reply said he didn’t think it was a great concern.

Well, it is to me – and I suspect many others. So when Age UK asked me to talk to an APPG about Fuel Poverty, I welcomed the chance. APPGs (All Party Parliamentary Groups) consist of MPs and Peers from all political parties. The one concerning Aging and Older People were meeting to discuss Fuel Poverty. This one is Chaired by Baroness Altman, a delightful person,, who let me tell all!

I did mention that patronising advice about “wear another sweater” only means we have more weight to carry around – but with fewer muscles to warm us, we depend on artificial warmth. And do ‘they’ really think we are going to leave windows open in cold weather? !!

We need electricity to light homes, run stairlifts, charge mobility scooters, operate life support and alarm systems, etc.

My story

As an 84-year-old Polio survivor living alone, disabilities caught up with me. With only one eye I can’t read meters, so in January 2018 I talked to nice Andrew in Centrica’s head office (they own British Gas). He arranged for me to go on their Priority Register, so British Gas would read my meters.

I set up a Direct Debit (amount suggested by British Gas), and in December 2019 their statement said “You are in credit £63.45.”

The next statement from British Gas said I was massively in debt: “Your new balance ….is £6006.78″.

Since this shock, I have been fighting for an explanation. Nothing British Gas tells me makes sense, especially a letter they send giving pages of supposed meter readings (in tiny letters), and offering £30 compensation. I thought this an insult.

The Financial Ombudsman got me a couple of thousand knocked off – but still no explanation.

A recent Ofgem report says I am not alone: “some of the worst examples of poor practice included suppliers failing to read the meters of customers who could not do so themselves”.

British Gas’s Kate Collins sends me a 5-page email ending with “You are now free to resolve your complaint by other methods, such as through the civil courts. This decision and its actions will then be not binding on British Gas and we consider the matter closed.” Is British Gas above the law?

British Gas closes its email boxes, so the only way to contact them is by phone. You hold on for fifty minutes until you are cut off; then start the process all over again. Because of these long calls hanging on, I go over my free phone call allowance, so now pay excess phone charges each month asked.

Josh, from British Gas, visits to suggest I should have a Smart meter. I asked for a leaflet to study, and Josh said there weren’t any. I explain I would be loathe to sign up without seeing what the meter dial looked like, to check if I could read it.

He offers to look at my bills to see if he could find out how the massive overcharge had come about, then tells me 4,000 electricity units had been overcharged.

A week later I open a letter from British Gas, expecting an apology or explanation. Er – no. It says :

“We’re about to apply for a warrant to enter your home”

This is threatening, unhelpful, and adds more stress. I ask British Gas to send someone to my home to sort this out, but they refuse. But they send an employee to knock on my door early one morning, who wakes me up. I send him away and tell him I don’t open my door to strange men when dressed in my dressing gown.

Charities report worries

Then Age UK asks me to appear before an APPG meeting to tell my story. They want someone like me to tell MPs what happens to us. So I gather information from numerous charities, from the Polio Survivors Network to Jo Cole of the Tees Valley neurological charity; all express concern.

Macmillan say those with cancer need to keep warm; cancer means four out of five people are £570 a month worse off – and this was before the cost of living crisis started to kick in.

Jo asks “what good is an increase in benefits + pensions in April, when people have already had to cover the shortfall denied in 2021? Ask the APPG what they would consider a reasonable excess death rate this winter due to fuel poverty?”

Damian Bailey, Wolfson Research Fellow, expresses “concerns relate to understanding…the impact of sitting for hours on end passively in a chair in elderly folk who cannot afford to heat their homes over winter. Chronic exposure to cold is a vascular risk factor”.

Other Disability organisations ask variations of ‘how many ‘excess deaths’ are going to happen this winter, due to people being afraid to heat their homes?’

Jess, my ambulance driver, echoes concerns. . She takes regulars for renal dialysis, chemotherapy and radiotherapy – people who need warmth to survive.

She and her colleagues in South Central Ambulance Service are increasingly concerned how cold patients’ homes are when they go in to collect them. She says it is easy to see elderly patients are getting frailer and their health deteriorating.

Getting help

Advising us to ask charities for help is not on – we are a generation that fund-raises for charities, not one that asks others for help. I did try the Ombudsman and Citizens Advice Bureau, but as British Gas had knocked something off my bill, that let the company off the hook.

However, one charity that was extremely supportive was the National Energy Foundation. Beata Shaheen came to see me and took an enormous amount of time going through all the paperwork, commenting that it must have been extremely stressful for me.

After her supportive visit I think that I am going to have to get a good solicitor to take up my case – but why should I have to pay for this, when the problem seems to have been caused by British Gas not reading my meters correctly?

In the meantime I now think of costs as how many days of food they represent. I won’t be buying a new coat this winter; I wanted a new lipstick to give me confidence to face the APPG; it will cost the equivalent of three days’ food. So it’s a no-no.

Will I go to Prison?

I worry constantly about going to jail for non-payment of my bill. Jess picks me up to go to hospital; as she used to work in the prison service, I ask her what to expect. I find out that at 84, with all my medical conditions, I will probably be in the prison hospital wing. And I won’t have to pay for heating, lighting or food!

British Gas sends me an estimate for fuel consumption next year, saying for my onebed property, my bill will be £5,500. That’s half my Pension.

What could be done

Could MPs head a non-Political group to sort out what can be done?

Talking to a top oil guru, on his way between Orkney and Houston, he reports there is a lot that could be done, but so many initiatives have vested interests – it needs an impartial body to sort out what is best for everyone.

We are grateful for government hand-outs, but know these aren’t going to cover all costs. And the 10 % pension increase, starting in April, won’t go far in paying fuel bills.

As Ofgem said, some of the worst examples of poor practice included suppliers failing to read the meters of customers who could not do so themselves, British Gas tells me their meter reader was unable to gain access. Strange – being disabled I am here all the time, and surely if someone was unable to gain

access, that should flag up an alert? I could have been dead for a couple of years with no one the wiser.

So could MPs do something to ensure all suppliers abide by a code for meter reading? And if a meter reader can’t gain access, this is flagged up in case the client has had an accident

Many elderly people live in old buildings that are badly insulated and draughty. I had a surveyor in to see about insulation, but as soon as he heard it was a listed building he said nothing could be done. Could the APPG get local authorities to review restrictions on these buildings?

The system for charging for fuel needs to change and be easier to understand. Why penalize us for using less?

Three simple suggestions :

1. Meter readers to flag up an alert if they don’t get a response

2. Review restrictions on old and listed buildings

3. Fuel companies must give a clear explanation if a customer is faced with unexpected charges.

And take the consequences if at fault.

For anyone who is having issues with their Energy supplier, if my experience is any help, there is more on www.aftercancers.com/bg

Advising us to ask charities for help is not on – we are a generation that fund-raises for charities, not one that asks others for help.

So perhaps those patronising us with advice on hot water bottles and cups of hot tea might look at our actual problems before dishing out gratuitous advice. And as for my MP who tried to tell me this wasn’t a problem ……..

Does the NHS get its priorities right?

The NHS runs on forms

The NHS chucked out Heat and other dog-eared magazines lying around in Outpatients, and instead, we occupy our waiting time with a clipboard and form to fill in.

Handed to you without a smile; the Receptionist knows what’s on the form, and she’s not giving anything away.

Remember when every Secretary of State for Health spouted the same mantra: cut back on time-wasting paperwork. Then went on to devise more forms “to improve efficiency” No wonder doctors are always running late.

You fill in what seems to be the important stuff – then – you come to the really important stuff. What the NHS thinks is going to help you to get better.

Questions

First: work out what sex you are. I must admit I didn’t know I had so many options – but will it make a difference which one I tick?

Then: read down a long list asking what religion you are. Now, this is where it starts to get real, and you wonder if you are here to see about your broken bones, or are you are worse off than you thought.? These are REALLY important questions. It’s no use being facetious – the NHS and umpteen nosey parkers really want to know. What is your Ethnic background? Easy, I answer Other: Angle-Norman (totally true). That’ll confuse the computer. Do I consider myself Male/Female then a list of words comes next, which I am not sure I really understand? Suppose I tick the wrong box? Will I be chucked out of the ward I might be in

and end up somewhere alien? Decisions. Decisions. Why not just ask me which loo I want to use?

Instead I write MYOB and with any luck I will be out of there before the Receptionist tells me that’s not acceptable.

Religion. Well, that used to be easy: I filled in C & E (Christmas and Easter) and that satisfied them. The hospital Chaplain would pass by my bed, and boy – did I make use of them. They knew everything that was happening in the hospital, and were a fount of knowledge if you needed anything done. Now, in a cost-cutting exercise the NHS is losing these useful people. But no worries – now the NHS has it all down on paper, so no need to talk to someone.

Dignity Then comes “do I consider I was treated with dignity”. No, what’s dignified about giving blood and being punctured with a ‘sharp scratch’ Ouch!

Did I find it easy to complain? So even before this comes into my head, you are telling me I should be complaining. Hasn’t the NHS got anything better to do?

Boot on other feet

And so it goes on. Weren’t we promised that we were aiming for a paperless society? Fat chance.

But, query something about your treatment, and quick as a flash, back comes a jobs-worth quoting ‘data protection’. Now I actually read the act, many years ago, to see how it might impact on the company I was running. We were doing a lot of work with Government Ministries and such-like, but as long as one acted like a sensible human being, it seemed the Act made sense.

NOT the way it is run today, when it is used as a cop-out for doing nuffin. If anyone can tell me why the NHS can ‘lose’ 700,000 items of our personal data, yet refuse to talk to you if you phone to ask how a friend is doing, “because you are not a member of their family”; – they can’t. It’s just the lazy person’s way of doin’ nuffin.

And don’t get me on the reasons why the NHS can be so secretive, yet Outpatient Receptionists can ask in a loud voice “what’s your date of birth?” then “And do you still live at…..?” – questions which are tailor-made to help any Hacker sitting in a crowded room. It beggars belief from an organisation that says it keeps our data safe. Huh!

If I am brave enough you will see the next form I get used for the useful purpose of making paper airplanes. Should keep a crowded waiting room amused for hours. Whee!

By Verite Reily-Collins PSN Trustee, Health Journalist and owner of www.aftercancers.com

Editor: A useful video on how to make a paper airplane

https://www.youtube.com/watch?v=veyZNyurlwU

Page 10

Since January 1998 LNA sought an improvement in Lincolnshire neurological servicesrepeatedly pointing out that without accurate statistic evidence funds would NOT be allocated to Neurological Commissioning Plans. 13.8.2018 the HARG report – 20 years later – confirms a need for better data and more January 2023 – Polio Survivors Network ask the Chair and Board of Lincolnshire ICB to please obtain more ACCURATE DATA for ALL not just SOME of their patients who are trying to manage their lives with a neurological condition.

The following slides are from a presentation originally given by Lincolnshire Neurological Alliance to Dr. Martin McShane, Director of Commissioning & QIPP NHS Lincolnshire on 22nd August 2011. This Presentation was later updated and given to the new Clinical Commissioning Groups.

1999 – How did LHA collect statistics?

Lincolnshire Health Authority admitted their figures

came from extrapolating a population figure

from the 16 nationally published figures

Sadly we learned for years

national figures had come

from adding up local health

authority figures

We asked 347 Lincolnshire G.P.’s

“How many patients do you have

with a diagnosis of one of the listed

32 neurological conditions?”

Spring 2000

Lincolnshire Health Authority and

Lincolnshire Neuroscience Forum

Surveyed General Practitioners

August 2000 – Lincolnshire GP’s respond to Survey

Population of Lincolnshire in 2000 was 634,300

6,633 patients a 10.4% response

How many if all GP’s had replied?

Only 36 General Practitioners

out of Lincolnshire’s 347 replied

“We have 6,633 patients

with a diagnosis of one of those

32 neurological conditions”

Lincolnshire Neuroscience Forum

First Meeting – January 1998

Led by Dr. Mandy Bretman

We learned Lincoln County Hospital

held Neurological Clinics

ONE DAY A MONTH!

5 of the 8 Neuro Support Groups

at this first meeting reported

“This service is so poor we advise

our members to go out of County”

1999 – LHA Neuro Statistics

Lincolnshire Health Authority Specification for Neurology

Top 16 Conditions in the County

At number 16 – Myasthenia Gravis – 24 patients

MGA Lincolnshire

“We have 112 members in Lincolnshire and

not everyone joins”

FIVE Support Groups of the Neuroscience Forum

“We all have more than 24 members and

our condition is not in the top 16!

There has to be something seriously wrong

with LHA statistics”

SPECIALIST NEURO NURSES

Royal College of Physicians and

Association of British Neurologists

Local adult neurology services for the next decade.

Report of a working party. Published June 2011.

• Neurological disorders are very common,

– accounting for about ONE IN TEN GP Consultations,

– around 10% of emergency medical admissions (excluding stroke)

and

– disability for ONE in FIFTY of the UK population.

• They include many different conditions of varying severity,

some very common and others exceedingly rare, from migraine

to motor neuron disease.

What are Lincolnshire’s actual figures for these?

Developing a health needs assessment for people living with neurological conditions in Lincolnshire

Summary Report HERE

HARG were asked by Lincolnshire County Council to undertake an independent health needs assessment for people living with neurological conditions in the county. A health needs assessment is a way in reviewing the current resources available to meeting the needs of a specific population. The review looked at adults over the age of 18, and young adults moving into adult services. It covered a range of neurological conditions, including stroke, epilepsy, Parkinson’s and multiple sclerosis, among others. Lincolnshire County Council had previously undertaken a separate review looking at the needs of people with dementia, so dementia was not included within this study.

The aim of this report was to:

• Establish how many people in Lincolnshire are affected by neurological conditions, and how this

compares with other parts of the UK;

• Review what we already know about the needs of people with neurological conditions;

• Explore what current services exist to meet the needs of people with neurological conditions;

• Understand the views of service users, their carers, voluntary groups and healthcare professionals on

neurological services;

• Identify examples of good practice in services, but also see if any needs were not being met;

• Make recommendations to those who plan and deliver healthcare locally.

RECOMMENDATIONS.

There is a need for better data on the number of people affected by neurological conditions in Lincolnshire, and what services they need to access. This could be achieved by analysing GP records in the county.

There is a need for a better understanding of how neurological conditions link to wider issues such as social inequality. We suggest that this should be taken into account in future data analysis. This would help researchers and health commissioners better understand who may be at particular risk of neurological conditions, and plan services to meet their needs.

People in Lincolnshire with neurological conditions often have other health needs too. Professionals in all health services need suitable training to ensure they are able to work sensitively with people with neurological conditions, recognise their needs, and signpost them to appropriate services. This may help to reduce delays in diagnosis and treatment. One possible option to achieve this would be to incorporate awareness of neurological conditions within the ‘Making Every Contact Count’ initiative.

A review of the reasons for emergency admissions may help to identify changes that would help avoid emergency admissions. This could include changes to non-urgent services to help prevent problems, and better support for people in managing their health needs.

There are gaps in local service provision for neurosurgery, rehabilitation and neuropsychology. Health commissioners should consider carefully the balance between developing national centres of excellence for specific conditions, and the potential difficulties for patients accessing services, particularly in a rural county like Lincolnshire.

There should be a review of how services inside the county and outside the county communicate with each other, to ensure that people living with neurological conditions receive continuous provision and are not allowed to ‘fall though the gaps; between services. This is especially the case where patients have been receiving specialist care outside the country but then transfer to community services. There is a need for widespread, easy to access practical advice and emotional support. Commissioners should consider setting up a network of peer support groups to extend and support the work of existing voluntary organisations for people living with neurological conditions across the county.

Information about neurological conditions and services available should also be added to the training for Care Navigators so that they can actively signpost patients and carers to appropriate services. specialist care outside the county, but then transfer to community services.

© Polio Survivors Network – Volume 10, Issue 12/12 [120] JANUARY 2023	Page 12
CO-PRODUCTION WORKS AND SAVES TIME AND MONEY if…. ALL those EXPERIENCED in the GIVING and RECEIVING of the NEW PROCEDURES are INVOLVED from the START of the PROCESS

Carers for people with neurological conditions have specific needs. We suggest that there should be further discussion with carer support services in the county regarding the needs of carers for people with neurological conditions, and how they could develop services to better meet the needs of this group.

We all know that the NHS and social care services are facing substantial resource challenges at the moment. Better communication between health organisations, voluntary sector organisations, patients and carers should help to ensure everyone understands the challenges being faced, and help identify changes that could improve services for example, better support for service users in managing their own needs, and ensuring that the neurological conditions are taken into account when planning other local health initiatives, such as the development of Neighbourhood teams.

Editors comment – Polio Survivors Network Committee members between us have over 35 years of personal and occupational experience of the issues that polio survivors – after many stable years – have had trying to obtain accurate assessments of their new and unexpected symptoms and issues and assistance in managing our newly changed post-polio lives.

This includes Colleges of Medicine not teaching enough facts about how the polio virus affected our bodies and most often also not including the fact that there is a later stage to having polio after many stable years to its students.

It also includes issues with Manual Muscle Testing. This was developed in response to the need to assess muscle strength losses during the polio outbreaks in the early part of the 20th century. The development of this method is credited to Wilhelmine Wright and Robert W. Lovett MD 1915. In the 1940’s Henry and Florence Kendall published a book called “Muscle Testing and Function” which defined specific muscles tests to isolate each specific muscle.

Due to time constraints in medical appointments a routine of a few single action tests for each limb was undertaken. If no weakness was found at the first test then the tester moves on.

Following a fall in October 1988 I spent the next seven years being assessed by this method was continually told there was nothing wrong with me. As a strong willed do not give up polio survivor who was becoming weaker year on year this was extremely hard to cope with.

At an Orthopaedic medical appointment on the 25th November 1995 with a Locum I had not met before gave me the results of my MRI saying ’I am glad you are better’. I responded ’I am not better I have continued to deteriorate for the last seven years, I had polio as a child has that anything to do with this?” The locum doctor immediately looked at the front of my file, told me that he had had another patient last year say the same and although he knew little about it there were later effects to having had polio. My prior waist down paralytic polio was at last in the equation.

I started my research into polio and its later effects that day and have not stopped since. It was not long before a huge penny dropped. I had passed a medical for the Police in 1969 when I could not run. No health professional would write facts on our medical records that he/she did not believe were true… there had got to be something wrong with the form of assessment used.

Manual Muscle Testing. Two confirming statements.Lauro S. Halstead MD – May 2002 – Director Post-Polio Program, National Rehabilitation Hospital, Washington DC, USA.If done only a single time, it can give an erroneous idea of the true muscle strength and endurance.Fred Maynard, M.D. – May 2002 – Marquette, Michigan, USA, President Board of Directors, Post Polio Health International.“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

6 5 4 3 2 1 0

Left Leg

Right Leg

Straight Leg Raise Repeats

6 5 4 3 2 1 0

Left Arm

Right Arm

Arms – Lift Item and Sustain

Self assessment of two tests

with no pressure against action

N.B. Decline WAS NOT seen by the single action testing.

REQUEST FOR INFORMATION

CONSTANT PAIN We are not medical professionals. You will need to make an appointment with appropriate medical professional/s to discuss your issues. We accept there are very few health professionals who understand and are knowledgeable on the issues polio survivors experience. The slide on the right is from one of our presentations showing how you might get a reduction of pain and fatigue levels by pacing and resting activities and also adding in the use of aids and assistive devices. We have learned that every time we experience a new slight loss of the way we do an action that it becomes our NORM. Experience has showed that this often means we will answer the Can you do x questions with a YES because we CAN do the action. The issue here is that if we do not tell the health professional HOW we do that action now they could miss a very important fact that they need for their assessment. For instance if your legs are weak they often assume you will pull yourself up with your arms. But maybe like me you have to push yourself up. I am sure if you think about how you do actions you will find you are now doing many of them in a different way than is normally expected. Here are a few questions to ask yourself. If you have cooked a large saucepan of chopped vegetables do you still put on the lid and tip the water out… or like me do you now first put a colander in a saucepan in the sink close to one edge. Then slide the saucepan of veg across the hob and onto the work surface and up to the edge of the sink and carefully and slowly I tip the saucepan so that the contents [hopefully] all go into the colander. Getting up a flight of stairs. Do you walk up as normal folks do, or do one step at a time one foot first? Do you pull yourself up holding onto the banister rail? Do you stop halfway to get your breath back? If you need to take items up the stairs are you moving them up a few stairs at a time as you go? Or might you be sitting on your bottom and pushing yourself up stair by stair with your arms resting on the way…..

How about turning over in bed? Do you just turn in your sleep or do you have to wake up to turn yourself by holding onto the cupboard next to the bed or the handle of the mattress? What happens if you sleep in a hotel or hospital bed and the [way you do this] is not available? Reminder here about Snoozle sheets which were developed for pregnant ladies to help them turn over in bed. I have been using one for over 12 years. As picture they are a tube of material with very shiny material on the inside and as you turn one layer slides on the other, www.thesnoozle.com My Polio Life – A self assessment tool that we developed over 20 years ago gives you a few ideas of actions of daily living to think about but we will all have many more actions to add. Think about how you do the action now? How did you used to do this? What has changed? The change is the information you need to explain to health professionals so that they can find out why you have changed the way you do the action. Until I started to think about the how did I do things now I had no idea how many actions I had adapted. In 2004 I had had the basic physiotherapist assessment of my muscles. I then told her what my self assessment had found and asked if she could tell me why I had had to change the way I was doing these actions. The first one was the fact that I realized for at least three years I had been scrambling eggs using elbow rotation. She now examined more than just the normal actions for arms [testing the actual actions for the task I had referred to] and found that the supinator muscles in my wrist were now extremely weak. I looked back over the last five years of my medical records and all muscle tests of my arms had just been the basic tests and been recorded as normal. The Physiotherapist then looked at how did I get up off the floor [writing on my records uses back extensors and hamstrings – I would get onto my hands and feet in a ^ position walk my hands back to my feet and stand.

https://poliosurvivorsnetwork.org.uk/new/wp-content/uploads/2021/07/My-Polio-Life.pdf

ACTIVITY

BEFORE AND AFTER CHANGE

Time

Day

Time

Doing

Time

Resting

Pain

Level

Fatigue

Level

Getting up, showering and dressing 8.00

10.00

30 mins 90 mins 3 5

Changed to showering

Underwear and calipers

Top Clothes

Less pain/fatigue

Saved time resting

8.00

9.00

30 mins

60 mins

2 3

Walking round one shop

pushing trolley

11.00

3.15

15 mins 180

mins

4 7

Doing the Town Centre using

electric scooter, walking in shop

where necessary, no bag carrying.

Gained time doing,

saved time resting

Less pain/fatigue

11.00

4.00

120

mins

60 mins

2 4

A helpful book for Polio Survivors

The Pocket Book of Pacing

by Hannan Ensor

96 pages – 110mm x 110mm – £5.50

A Call For Your Help

Can you offer advice for our newer members who are looking for: help regarding:

(1) Falls are becoming a problem for me (I’ve broken a good number of bones), I use a wheelchair outside the house now and a crutch inside, the only thing that seems to help is a Velcro knee wrap round knee support, any strategies/articles on this would be interesting.

(2) Constipation seems to be linked to polio in a number of ways like not exercising,

muscle wastage and possibly Vagus nerve damage, any strategies/articles/ideas to help would be of great interest.

(3) How have you got on with leg braces / KAFO / AFOs etc please?

Did you know that The Brain Charity holds free social activities for anyone affected by neurological conditions?

https://www.thebraincharity.org.uk/events/

Polio Survivors Network is a member of The Neurological Alliance.

If you have not yet signed their petition calling for governments across the UK to #BackThe1in6 and deliver real change for people with neuro conditions we encourage you to do so

https://tinyurl.com/BackThe1in6

Toni Writes …

My short piece in this issue picks up on one of the comments below as we need your help. Please can as many as possible provide us with your polio experience. It doesn’t have to be a long piece (unless you want it to be). Maybe think about including things like how you were affected when you had polio, how your life has been health wise, what you’ve accomplished e.g. married, children, career, travel, etc, any difficulties in older age as a polio survivor, what support you’d like to see for polio survivors. Feel free to email psnadmin@poliosurvivorsnetwork.org.uk with a written piece.

Or join Roy, Sue and Florence in providing your experience by a short video (audio only is fine too) you can find their experiences in our PSN library and on our website. It is very simple to do, just upload the recorded file via this link https://bit.ly/3D8MQKQ

If you are not able to record a piece but would like to, I can provide you with a Zoom link and you can simply start telling your story. When finished a file is automatically sent to me. Just email me for more information so you can get started.

I can’t wait to get to know you better.

Take care

Toni x

From our readers:

By reading the newsletters, it has enabled me, and my wife, to understand the reasons why my periods of fatigue and the wasting of my right leg, is not just ‘in my head’ and due to a heavy clutch but that so many others are in the same boat. Thank you once again for all your efforts.

In this world of no definite diagnosis & no definite meds, which I know well is to try & kill the pain, use whatever mechanical aids you can get. Positivity!!! Works for me, I know it may sound stupid but no matter how bad I feel in the morning, I can’t wait to get out for an hour or so on my electric assist recumbent. So far I’ve not yet had pain whist riding summer or winter. The strangest things may help.

Keep up the positives online exercise needed.

I would like to see in the magazine more chat from survivors how & what they are doing to cope. For me it’s been over 10 years since I first approached officialdom, still not got a positive idea of what’s wrong & not enough medication or alternative treatment.

Just to comment on I how I handle getting up after a fall which might help others, my wife cannot physically help me but we have found a rechargeable bath lift (on Amazon) that is easy to get on if I’m on the floor and raises me high enough for it to be like getting off a chair, allowing me to stand.

Florence Lunde’s Polio Life

PP (prior to polio) I was an athlete, went to sleep away camp every summer and rode horseback. I was being groomed to go to a special music high school in New York City. All that changed in September 1953. I came down with a combination of spinal and bulbar polio at the age of 12 1/2. I was paralyzed from the neck down and put in an iron lung. Most of my early memories are very painful to remember for example, I received the sister Kenny treatment which were hot packs wrapped around my limbs. They were a dark grey material that itched and after that came terrible stretching of my muscles that hurt horribly. I remember when I was transferred from the acute hospital to the respirator centre in another hospital in New York City. I was in the iron lung placed into a truck and away we went. When I got to the other hospital I remember going down long corridor looking up at the ceiling with the lights and looking at the physician pushing the iron lung. It was very frightening to me. I didn’t know where my mother was seeing as she came along with me in the truck. Now as an adult, I assume she went to fill out the paperwork but at the time I had no idea where she went.

I was slowly weaned out of the iron lung and was given a cuirass which was a chest shell with the hose in the middle going to the respirator mechanism. I was also placed on a rocking bed which was the worst. I always feared I would slip off the end. By the age of 13 I did not need to use a respirator at all until my late 20s at which point Dr. Augusta Alba told me to use it in the evening with a mouthpiece for 20 minutes to expand my lungs. I followed her directions and did quite well for about 45 years and then started needing night time ventilation. Today I use the vent with a mouthpiece from about 5:30 PM until the next morning when I get up at 7:30 AM.

During my teenage years up to my early 30s It was very important to me to be just like everyone else. I started smoking at the age of 16 because everybody else did and this was something I could do just like everyone else. I remember one winter I washed my hair and went out with it wet because so did every other teenager, however I came down with pneumonia when the other teens did not. Other than that my health was good. Once I started to understand that I was not like every other teenager and that I needed to take care of myself and not try to imitate what other people did my health improved I had fewer colds and bronchitis every winter. Of interest is that since I moved to Florida I think I have had two upper respiratory infection in the 15 years I’m here.

I was on home instruction for the seventh, eighth, and ninth grades returning to regular high school in the 10th grade. I was the first disabled student to go around from class to class just like everybody else. They appointed another student to take me from classic class and she got credit. Back then they did not have motorized wheelchairs and I was not able to push the manual wheelchair so a student took me from class to class.

Speaking of motorized wheelchairs, the first time I got into the motorized chair I went up and down the corridor of the hospital and upon returning to the occupational therapist I burst into tears saying “I have been let out of prison.” I had freedom now I could go and come whenever I wanted to, go where I wanted to and do what I wanted to. I was not dependent anymore on people taking me someplace. For the first few months of using the motorized wheelchair I could not sit still I had to constantly move. For example my husband loved to wax his car I would go and sit with him while he waxed the car. All of a sudden I had to move I remember saying to him I will be back and I took off went around the block and came back. I don’t remember how long this behaviour lasted but I would venture a guess to say a few months. I went to New York University for my undergrad and graduate work in Speech – language pathology. I worked at an inner city hospital in New York city for 29 years in the department of rehabilitation medicine and my area of focus was patients who sustained a cardiovascular event demonstrating language dysfunction. I retired because my body couldn’t do it anymore. I was constantly tired & cranky.

God has played a major role in my life. He took away my anger, bitterness, my depression and filled me with his Holy Spirit and gave me a newness of life with joy and peace. My husband and I started a ministry for people with physical disabilities in New York City called His Abundant Love Ministries. It was a once a month group that met for 29 years before we retired. We

Page 17

Useful Resources• International Ventilator Users Networkwww.ventnews.org• Disabled Motoring UKwww.dmukdiscounts.co.uk• Pain UKwww.painuk.org• National Voiceswww.nationalvoices.org.uk• Neurological Alliancewww.neural.org.uk• Rare Disease UKwww.raredisease.org.uk• End Polio Now – Rotary Internationalwww.endpolio.org• European Polio Unionwww.europeanpolio.eu• Post-Polio Health Internationalwww.post-polio.org• PA Polio Survivors Networkwww.papolionetwork.org• Polio Quebecwww.polioquebec.org/eng/• Polio Survivors of Marinwww.facebook.com/groups/163909760771171• Atlanta Post-Polio Associationwww.atlantapostpolio.com• Nebraska Polio Survivors Associationwww.nepolioorg.ipage.com• Polio Australiawww.poliohealth.org.au• Word-Wide Fellowship of Polio Warriorswww.poliowarriors.org

saw many people saved and lives changed. Our television show on Bronx Net, won three Beta awards. I have also received my graduate certificate in Christian ministry from the King’s seminary. I have authored three Christian books. The first one is God’s word for you which focuses on how God brought me through the early days of polio, experiences I had, including peoples reaction to me now that I had a disability. The second and third books are sister books: Digging Deeper: the Devotional and Digging Deeper: the Bible study. They are organized by theme. All purchasable on Amazon just type in my name.

My husband was a paraplegic from a construction accident. We were married for 42 years before he passed away in 2013 from dementia. We travelled extensively using travel agencies for the disabled. A funny vignette happened in Israel. The elevator was so small that a wheelchair user had to remove the foot pedals in order for the door to close. Well this one young lady couldn’t put her foot pedals back on fast enough when the elevator stopped for her to get out so she kept going up and down until somebody was able to help and all the doors open. The rest of us just sat and waved to her as she came to our floor it was so funny at the time.

I am now 81 years of age and post polio syndrome has done a number on me. Not only am I constantly tired, but I have lost strength, my balance is off and the fatigue is at times overwhelming. Whereas I used to live alone before I got married and took care of myself completely, now I need a caregiver to help me with all ADLs. There are times when it wears me down usually when I think back to what I was able to do and now cannot. I am a full-time motorized wheelchair user and as I said I use a vent at night.

The support I need as I get older is that I need more and more help to live independently. There has to be a system set in place where people that worked all their lives, making a good salary with good retirement benefits to receive some financial aid to pay for the caregiver. At the time of this writing in Florida, USA the going rate per hour is $23 which gets costly.

Editor: See Rev, Florence Lunde’s website www.florencelunde.com

A Quick Message From The Trustees

Thank you to those who have already responded to the email sent out regarding our 2023 Annual General Meeting. We really appreciate your feedback to help us plan ahead.

Here are the results so far:

For anyone who has not done so please contact us to let us know your preference.

We’ve joined Making A Difference Cards – a site that lets you make donations for Polio Survivors Network with every Personalised Card or Ecard you buy. Support Polio Survivors Network and help us raise as much as possible.

https://gb.makingadifference.cards/ supporting/polio-survivors-network

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

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, 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

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!www.post-polio.org

22nd / 23rd MARCH 2023National Exhibition Centre Birmingham

Polio Survivors Network would like to say a BIG THANKYOU to Val Scrivener for her wonderful photo cards over the years.

Members, thankyou for purchasing them and raising funds for our charity.

Sometimes reading a fellow polio survivor’s experiences helps a person gain perspective on their own life. There is so much we survivors were cautioned to not reveal. As a nurse, I have heard anguish in the voices of polio survivors who are maligned and their complaints dismissed because the doctors do not understand the often hidden, long-haul symptoms of polio. The book is set forth in a way that polio survivors can find sections about the symptoms that bother them and show the health care provider the underlying research supporting their complaints.

The book comes with an extensive bibliography and reviews from a polio doctor who had childhood polio, family physician, social worker, psychology instructor, physical therapist, orthopedic physician assistant and registered nurse.

I wrote my latest book, POLIO GIRL: It Only Takes One (amazon.com; released July 2022) to increase the understanding of everyday people about how polio affects a child and a family and to educate healthcare professionals. In the book, I tell my stories of leaving my body as a child when the pain was unbearable or treatments hurtful. The book bends two ways. One, it is the story of my family who was told their infant with polio would never walk. Two, it is a resource manual for polio survivors and healthcare personnel who can step-up-to-the-plate and identify acute polio and post-polio symptoms and meet patient needs.

Experiences of Polio Survivors

Some of our members wish to share their experiences by video – we hope they help you too. If you would like to share your experience please contact us and also see our PSN Library for more written experiences. Videos by Roy Burnham, by Sue Robinson in two parts and another from Rev. Florence Lunde. More being added later in January.

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Post Polio Matters Volume 10 Issue 12 Read More »

Post Polio Matters Volume 10 Issue 11

© Polio Survivors Network – Volume 10, Issue 11/12 [119] September 2022	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire Post-Polio Library
See Page 10
God Save The King – His Majesty King Charles III
© Eleanor Tomlinson

Polio Survivors Network NewsletterSeptember 2022 – Volume 10 Issue 11 of 12 [119]

Thank you Ma’am for everything

Page 2

This publication is provided free thanks to the

generous donations of members.

Thank you so much!

Page 2	Contents, donations, PayPal link, AmazonSmile
Page 3	Editorial by Hilary Boone
Page 4	Message From Our Chair
Page 5	Toni Writes, From Our Readers
Page 6	Advice on Energy bills from Silver Voices by Verite Reily-Collins
Page 7	Tips When Using Your Computer
Page 8	Ten Top Things About Me/My Medical Conditions
Page 9	Rules of Etiquette for Polio Survivors
Page 10 – 12	Dr Lauro deBosis Storm Halstead, A helpful book for Polio Survivors
Page 13	More Problems With My Callipers, Covid Notes
Page 14	Polio Case Reported in the U.S. This Month
Page 15 – 17	PPN News
Page 18	A Research Project, Helpful Resources
Page 19	Management Committee, Useful Polio Articles
Back page	The Helping Hand, The Last Leg, Thank you to Val Scrivener

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Editorial by Hilary Boone

Thank You Ma’am for Everything and God Save King Charles III

These last few days have been of great sadness at the sudden passing of Her Majesty Queen Elizabeth II just three months after the most wonderful celebrations for her Platinum Jubilee. Her dedication of service to her nation and her people was exemplary and inspirational.

Thanks to the invention of the television and Her Majesty’s willingness to be filmed throughout her life we have the most wonderful memories. We have seen her in full regalia, in wonderful ball gowns, splendid coats and hats, right down to a mackintosh, galoshes and a headscarf.

In 2012 we were stunned by her ‘entry’ to the Olympic Games but she surpassed that when we saw, and joined in with, the astonished laughter on the faces of all in the Royal Box at her Jubilee Celebrations when she produced a marmalade sarnie out of her handbag in her film with Paddington Bear. The drawing by Eleanor Tomlinson on the front and this page speaks volumes and is treasured by so many people.

Polio Survivors Network have just learned that a Celebration of Life has been held for Dr. Lauro Halstead. A Polio Survivor who researched into the new issues many of us who caught poliomyelitis in our early years were experiencing in later life. Turn to the middle pages where you will find a helpful now ten year old article that Phillipa Eckert and I wrote after his presentation at the Atlanta Post-Polio Conference 1st November 2002. I so remember the slides he showed of how he managed his life at home and work. So many ideas that may be of help to our readers.

I can hear some of you say – I am not there yet – said it myself in the first few years. Polio Survivors became strong willed and determined to succeed during our childhood recovery from polio and any suggestion of starting or restarting to use equipment is a NO, NO. Dr. Halstead happily told us that in 1994 he realised that he had to buy an electric scooter to continue working at his large hospital in Washington DC. However, just like many of us it took him till 1999 before he purchased one for use away from work.

I was lucky to meet and talk with him at many Post-Polio Conferences and super privileged to be invited to his home for dinner with his wife Jessica Scheer where he signed my copy of Managing Post-Polio: A Guide to Living Well with Post-Polio Syndrome.

Electric Wheels are not a downward step but the start of a new life being able to do more, go to many more places for longer and with less pain and fatigue. I have had an electric scooter since my 50th birthday [I was so embarrassed when it was delivered and I was asked to try it out in the road outside my home]. 25 years later and I have been thousands of miles that would have been impossible without it. Due to a bad fall two months ago I have had to use our spare electric wheelchair purchased 12 years ago off the internet. It is too small for my long legs but with a bit of ‘do se do’ we are managing to get round our small bungalow. We are seeking a carpenter to take a foot off one wall to give us a bit more room. I am now at the start of what I am told can be an 18 week process to get one that fits me. Please practice how you would manage if you suddenly found yourself with a limb out of action. Thank goodness it was my legs because over the last 15 years I have gradually had to use my arms more to sit, stand up and transfer. Richard has three ceiling track hoists fitted and using his sling was the only way a Carer could get me up off the floor in December and July when I fell. I had to swallow hard and ask our OT for a more suitable size sling for the Carers to use for me.

The TV is on as I type and our new King, His Majesty Charles III is about to take part in the ceremony of the Keys of the City of Edinburgh. I am amazed how many processes there are that he has to take on board during this time of mourning. God save King Charles III.

MESSAGE FROM OUR CHAIR

My Challenging Time

The past year or two has been both a challenging and complex time for me having been diagnosed with prostate cancer. Of course, it is just bad luck and affects many men as we age, irrespective of polio or any other health condition. The impact and shock of discovering I had cancer was obviously very difficult, but perhaps after the initial shock, the problems around navigating the best treatment options as a person with post-polio has proved quite stressful and challenging over and above the actual diagnosis.

As we age and inevitably have other conditions, we are all faced with questions around the quality of our lives and how this is viewed by clinicians. It is sometimes difficult to convey that despite being quite severely physically impaired, having polio, being a wheelchair user and in my case having used nocturnal ventilation for over 20 years, we do not necessarily have, with good care, a reduced life expectancy per se. The basics around the right treatment, with the right precautions can, and usually does, mitigate most problems around our post-polio issues.

Combating Misconceptions

I find the most difficult issue is achieving a balanced explanation of my medical needs, status and risks when facing a doctor who is not familiar with polio, which is virtually every medical professional these days. The first impressions as I arrive, is a 72 year old disabled man, in a power wheelchair with extensive muscle weakness, who has his wife to help him with most care needs. I am faced with small decisions such as, do I just get out of my chair and walk the few steps to sit in the chair next to the doctor or not, as I may seem overly able? Should I transfer on and off the couch with minimal support to demonstrate I am not totally incapable? These are thoughts and choices that run through my mind every time, as I don’t want to underplay my needs and issues but on the other hand, I don’t want to minimise them either. How much to be overly positive, a familiar trait of polio survivors, and confound initial ideas of what I can and can’t do or to convey that I am quite dependent in many ways which they need to understand.

Getting the Balance Right

The danger is that when making health professionals aware of my various health and support needs, they can assume an overly negative view of my health as I suspect they have a medical/age ‘norm’ in their heads. It is this ‘norm’ that informs their thinking and of course for most of us we never were the ‘norm’ and so for us daily life doesn’t necessarily involve the same things as it does for others. Equally most research and treatment outcomes aren’t based upon disabled people’s experience.

The problem is that by emphasising my polio issues I may in fact not be offered optimal or the most effective treatment. However, if I minimise them, I run the risk of having my polio issues not managed adequately thus storing up potential risks and serious side effects that could have been avoided or minimised. Whilst these have always been issues, I am finding this an even more difficult balancing issue in my prostate cancer journey when dealing with oncologists.

The Stress of Self Advocacy

I find myself, as I am sure many of us do, having to do a huge amount of personal research and facilitate communication between different specialists and services whilst feeling that I am on my own trying to explain and managing complex situations. Being diagnosed with prostate cancer has been particularly difficult in this regard as some of the treatments may or may not be harder for me because of my post-polio issues but this is unclear. The fear that lurks in the back of my mind is that I am seen as less likely to tolerate treatments because of my polio issues when this is based on what I ‘look like on paper’ and from a lack of knowledge about ageing with polio issues and me in particular.

The Bottom Line

There is also a wider issue here about how society sees our ‘quality of life’ and who has value which is based upon a non-disabled medical model. In the current climate this is becoming an even greater threat to us as we slip down the priority list. The real issues that reduce disabled peoples’ quality of life are societal and environmental barriers rather than physical abilities and prowess.

Toni Writes …

Firstly I would like to give a big welcome to the many new members who have joined Polio Survivors Network since our last newsletter, it really is good to have you with us. I hope we can be of support and help.

I would also like to say a HUGE thank you to Val Scrivener who has created beautiful photocards for purchase (proceeds going to Polio Survivors Network) over the years. Val is not longer able to do so but her hard work is much appreciated and I wish you well for the future.

Another BIG thank you to all you lovely members who have donated so generously. We are in an excellent position to continue providing our services without charge. Talking of our service, I would like you to please provide any feedback you may have on our refreshed newsletter section found on the Polio Survivors Network website. Please click through the Newsletters link and have a look.

Tip: To make the text of the newsletter bigger click the + sign in the right hand corner of your screen. Also you can now search any word or phrase in each newsletter by using the magnifying glass at top of page.

As ever please feel free to drop me a line with your suggestions, tips, experiences, thoughts, any resources you have found useful or absolutely anything else on your mind.

Take care

Toni

PS: If anyone has a copy of issue 36 or 101 of our newsletter we’d love to add them to our library.

From our readers:

• Thank you for excellent newsletter. Thanks to all who had a hand in it.

• Great newsletter

• Critically important service frequently with gems of ideas

which would be useful to most of us who belong in this

community.

• I wish to thank you for your kind help and for the inspirational material you give to

members. I am very touched by the courage and tenacity of the members and it’s

organisation, and the quality of the material is very high and very good indeed.

Advice on Energy bills from Silver Voices “Put Essentials before Energy Bill”

As polio survivors, we all know how important it is to keep warm. With the horrendous increase in fuel costs, what Dennis Reed, Director of Silver Voices Charity, has to say about the horrendous bills we will soon be facing, might resonate with many of us….Silver Voices (the charity) has “had hundreds of emails on the cost-of-living crisis, seeking advice and offering comments.

“Many members have asked for advice on what to do when they cannot afford to pay their energy bills this winter. Thousands of older people have already made all the economies they can…

Our advice is clear, do not jeopardise your health by turning off your heating, or by failing to eat and drink a sustaining diet. If the choice is between food, warmth, or energy bills then it must be the energy bills that are dropped. We are not aligning ourselves with the ‘Don’t Pay’ movement, but the responsibility must be passed back to the energy companies and the Government to provide sufficient support for the basics of life.

If you genuinely can’t afford to pay your energy bills, then the first step should be to contact your supplier saying that you need support. Ask for a hardship grant (most suppliers have a scheme) and for a reduction in the tariff. If you can afford something towards the bill without damaging your health, then show willing and make a part-payment. Do point out that you are following Silver Voices advice, to show you are part of a wider movement.

You cannot be cut off in the short-term if you don’t pay your energy bills, or be forced to accept a prepayment meter. If you are a state pensioner, you can’t be cut off during the winter and if you have long-term health conditions or are disabled you can’t be cut off at any time. See the following Citizen’s Advice explanation for detailed information on cut-offs: CLICK HERE

Although this advice is for England, similar provisions apply across the UK. On pre-payment meters, these need to be avoided as higher rates are charged and if you run out of money, you lose your power. Suppliers cannot force people to agree to a pre-payment meter without a court order and there are many circumstances such as disability and illness which would disqualify the energy supplier from taking this action at all. Again, read the helpful Citizen’s Advice on the subject: CLICK HERE

Our advice is the only sensible response to this crisis. NHS Leaders have warned of an impending public health emergency unless the Government takes radical action. CLICK HERE

Our advice is intended to save lives. It would be a tragedy if thousands die from self-neglect because they don’t want to fall into debt. So, in the absence of measures to improve the basic income of state pensioners, we must put pressure on energy companies and, through them, the Government to show that the current situation is unsustainable, with unthinkable consequences.”

Background

I came across Silver Voices when Dennis started a campaign to ‘Gum Up The Works’, when the BBC took away free TV licenses for the elderly. Silver Voices did not advocate anything extreme, but showed simple steps one could take to legitimately question the BBC, and delay paying the fee. This was so successful at stalling matters, that I believe there are still 3/4 million who have yet to hear from the BBC about paying – and the BBC has come to an impasse!

Membership

You can apply to become a member of Silver Voices and add your voice – plus receive Dennis’s emails full of practical advice – with a bit of humour. The sub is £8 a year but anyone surviving on the state pension and benefits alone gets free membership www.silvervoices.co.uk/join-us

By Verite Reily-Collins PSN Trustee, Health Journalist and owner of www.aftercancers.com

Tips When Using Your Computer

If you’re reading this on the internet you probably spend a fair amount of time at your computer. This can put you at risk for a lot of problems. Carpal tunnel syndrome, tendonitis, bursitis – all result from chronic, continuous, overuse of the hands and arms. Neck and back pain, headaches, eyestrain, tension and fatigue can also come with the territory. Before computers, people who typed for a living didn’t develop these conditions. What has changed?

For one thing, we type much faster on a computer keyboard – thousands of keystrokes per hour. And there are no breaks – we don’t have to stop at the end of each page to insert fresh paper. These fast, repetitive motions take their toll on your body. The problem is compounded if your computer workstation doesn’t fit you.

So here are some risk-reducing recommendations from ergonomics, the science of arranging and adjusting your work environment to fit you and your body. They won’t all apply to everyone, but you can utilize whatever fits your situation.

BODY AND ARM POSITION

Shoulders need to be relaxed and elbows kept close to the body. Place the computer keyboard at elbow height or 1″ below elbow height to keep your forearms parallel to the floor and wrists in neutral position. A too-high keyboard is one of the most frequent flaws at computer workstations. If your keyboard height is not adjustable, change the chair height.

Be sure your chair depth is correct for you. If it is too shallow your thighs won’t be supported. If it is too deep, it won’t support your back.

Make sure your feet are supported. If your feet don’t reach the floor use a foot rest or a 3-ring notebook binder.

You also don’t want your hips flexed so much that your knees are higher than your hips. This interferes with blood flow to the legs. If you can, move your feet forward so your knees are lower than your hips and straighter than 90 degrees.

Use a lumbar pillow or a small rolled-up towel to support your low back.

To avoid over-stretching to reach objects you use often, make a semicircle with one arm to determine your comfort zone and place frequently-used objects within that area.

YOUR MONITOR

The most comfortable distance for the monitor screen is 18-25 inches from your eyes.

The top of the screen should be at eye level. If you wear bifocal or trifocal glasses the screen will need to be somewhat lower to keep your head in an upright position.

Place a document holder next to the monitor at the same height and distance as the screen as typing from a document lying on the desk causes repetitive neck motion.

TAKE FREQUENT BREAKS AND STRETCHES

Blink often. Optometric studies have shown that people tend to blink less and open their eyes wider when looking at a computer screen. This causes dryness that can lead to fatigue, a burning sensation, difficulty focusing and headaches.

Stretch your wrists and fingers. Stretch your wrists backwards until you feel a mild pull, then stretch forward. Make a fist, then stretch the fingers outward.

Put your hands on your hips and lean backwards gently, then bend side to side. Do this sitting down so you won’t lose your balance.

By Grace Young http://www.reocities.com/HotSprings/4713/

Please also search the Polio Survivors Network Library for more articles by Grace Young

Editors note: If I don’t have legs up my shoulders ache badly. Ergonomic Keyboards. These are split keyboards and allow your wrists to stay in line with your arms and reduces wrist strain. Also have a platform in front where you can rest palms. In some models Backspace and Tab keys are also duplicated in the middle. Takes a couple of days to get used to them.

TEN TOP THINGS ABOUT ME/MY MEDICAL CONDITIONS.

I have attended a couple of meetings in the last couple of weeks where the subject of patients providing information was raised. How much of a responsibility is it of the health professional and how much the patient to ensure specific information that is very important about your life and how you manage your medical conditions. How often have you had problems being assessed by health professionals in non Post-Polio knowledgeable medical situations?

It is very easy even for someone who has been attending meetings/conferences etc for over 27 years to get it wrong. I got it wrong when I fell on July 12th and had to attend A&E. I was triaged and sent for x-ray, told I had probably broken both ankles more so my right and was being sent home to be referred to the Fracture Clinic. Despite informing the doctor of my prior polio, postpolio and that I have to use a walker or electric scooter, none was mentioned in his report.

In excruciating pain and no longer able to walk I had to start using Richards 12 year old purchased off the internet for £75 that is far too small for me electric wheelchair with added height cushion, to get round the house. The next day two raised blisters appeared on my right ankle and I had to go to the GP surgery to have this dressed. Over the next couple of days the two raised blisters became one large one [2” x 1.5” and 1” raised] and my leg to knee remained swollen and hard. Having to stand on this completely dropped foot to transfer made life tough. I would not be able to wear my AFO’s till this healed and I was told it could take months. I contacted my Rehab Consultant and she asked an Orthopedic Consultant to look at my xrays and he decided I had not broken either and therefore I was discharged from the Fracture Clinic without being seen or my current non walking situation being understood. I received extensive laser therapy on my ankle from our Neurofunctional Chiropractor and the blister became a large scab. Stunningly 17 days from the fall when the Nurse went to dress my ankle she raised the edge of the scab to find new skin underneath. It appears that daily laser therapy can accelerate healing far faster than anyone expected.

However the lack of recording or understanding of the physical issues that my Post-Polio causes in daily function has meant long delays to get to appropriate health professionals that I need to see to start trying to walk again. I accept that A&E doctors are unable to know everything about all conditions. I obviously failed to ensure the problems I would now have were understood and recorded for when other health professionals looked at my records.

I am now in the process of updating my double sided sheet as the heading of this document to ensure that it contains the most important points that I need health professionals without Polio/ Post-Polio knowledge looking after me to please take on board. Remember we are acknowledged as experts in our conditions.

What would you do in similar situations? Have you thought, or practiced, what you would do if you injured a leg or arm and were now unable to sit/stand/transfer as you normally do? What information would you include?

TEN TOP THINGS.

Front – It is important that health professionals do not look at a list of diagnoses and see you in an electric wheelchair and think you have always been in one. Pick a few small photographs that show your abilities over the years. Then start to list what you consider are important points about you.

Back – List points that are important about your polio, your Post-Polio Syndrome and other medical conditions.

We update our copy every year. We also laminate one copy and punch hole in corner so it could be hung on the bedrail by a curly cord. As staff change shifts it is not possible for them to read a lot of information you might have handed over for your file. Many have said how useful being able to have a quick look at both sides of this has been extremely helpful.

RULES OF ETIQUETTE FOR POLIO SURVIVORS

PERSONAL HYGIENE

1. Decisions about which body part to wash depend on which doctor you’re seeing today, i.e., face/ears for the ENT; feet for the podiatrist; arms for blood tests; etc

2. Proper use of toiletries can forestall bathing for several days. However, if you live alone, deodorant is a waste of good money.

3. Read labels carefully. Ever notice how much the can of room freshener resembles the can of deodorant?

4. Remember to warn your spouse before kissing if you’ve just taken your herbal remedies, since your breath now smells like grass.

IN THE KITCHEN

1. If you can’t remember what it is you’re cooking in the pot, whatever it is, it can probably use more salt.

2. Do not toss that cold cup of coffee into the dryer or set the iron in the refrigerator to cool off, no matter how good an idea it may seem at the time.

3. When your husband tells you ‘Don’t worry about dinner, just throw some frozen chicken in the oven and forget it”, DON’T forget it.

4. When everything INCLUDING the can opener is dirty, it may be time to wash some dishes.

5. It’s bad manners to fall asleep at the table, especially in the food.

6. If you’re having a bad day, there’s nothing better than pizza and quiet.

DRIVING ETIQUETTE

1. Always place a note on the dash-board telling you where you’re going. When you get there, place another on the dashboard that says HOME.

2. Never relieve yourself from a moving vehicle, especially when driving.

3. Always carry an electronic homing device with you so you can find where you parked your car

TIPS FOR ALL OCCASIONS

1. If you have to vacuum the bed, it’s time to change the sheets.

2. If you take the dog for a walk, make sure he brings you back.

3. Nevermind taking one day at a time; stick to one thing at a time.

4. Try to spend at least 45 minutes each morning doing one get-up.

5. Work at learning something new everyday, like sitting up, for example.

6. Remember to breathe when napping – it’s unnerving to wake up and see vultures staring at you.

7. Learn to understand your “body language”:

Joints – “I ache! It’s going to rain!” Stomach – “You’re getting me upset!” Nose – “Oh, oh, I’m getting a cold!”

Head – “Stop it, all of you! I’m getting a migraine!”

mickiemc@frontiernet.net

Dr. Lauro deBosis Storm Halstead 27.2.1936 – 5.1.2022

A Celebration of Life was recently held for Dr. Halstead in Peru, Vermont, U.S.A.

Dr. Halstead is an internationally known physician in the USA for identifying and treating

Post-Polio-Syndrome. He received a BA degree from Haverford College and his MD degree from the University of Rochester Medical School and an Masters in Public Health [MPH] from Harvard University School of Public Health.

Reprinted from The LincPIN, Volume 4, Issue 1. December 2002 ATLANTA POST-POLIO ASSOCIATION

ONE DAY CONFERENCE NOVEMBER 1ST 2002, SHEPHERD SPINAL CENTER, ATLANTA Main Speaker, Dr. Lauro S. Halstead.

Report by Hilary Hallam, and Philippa Eckert.

Philippa Eckert is a USA member of the Lincolnshire Post-Polio Network and has just retired as President of the First Coast Post Polio Support Group, Jacksonville, Florida. Hilary Hallam [now Boone] the Founder and Chair of the Lincolnshire Post-Polio Network [now known as Polio Survivors Network]

Dr. Lauro S. Halstead is Director of the Spinal Cord Injury Program and Director of the Post Polio Program at the National Rehabilitation Hospital in Washington D.C. He helped to organise the 1984 and 1986 Research Symposia on the Late Effects of Poliomyelitis in Warm Springs Georgia. Dr. Halstead is internationally known for his work on the late effects of post polio, and a polio survivor himself.

Additional Speakers were Dr. Donald Peck Leslie, the attending physician at the Shepherd Spinal Center which specialises in neuromuscular disorders and Dr. Anne Carrington Gawne, Director Post Polio Clinic and Brain Injury Program, Roosevelt Warm Springs Institute for Rehabilitation, Warm Springs, Georgia.

Linda Priest, President of APPA opened the event and introduced Dr. Leslie who in turn introduced Dr. Halstead. The following is a report of his presentation

Living with PPS: A Personal Perspective. Dr. Halstead gave his presentation whilst seated in his scooter. He wanted to discuss his problems in the spirit of interaction with the audience and invited questions. He fully admitted that he did not have ‘all the answers’ but using his experience of polio and PPS he would give us an insight into how he manages his life as a physician and polio survivor.

Living with PPS is an ongoing battle. This is not a static disease. Often the adjustments made by the polio survivor in the past, which worked then, will not work now. Dr. Halstead admitted that he used all sorts of subterfuges to fool himself and others, while his limitations became progressively more apparent. Dr. Halstead was infected with the polio virus – incidentally six months after visiting Lincoln in the UK – in 1954, aged 18, a sophomore in college. All four limbs were affected and he spent two to three weeks in a respirator. He had no dysphagia. He was in hospital for five more months used a wheelchair for five more and an ankle foot orthosis for one year. Between 1957 and 1961 he had nine reconstructive surgeries. Recovery took three years. He taught himself to write with his left hand as his right hand and arm were paralyzed. An avid walker, he climbed to the top of Mount Fuji (12,000 feet) as a testimony to his full recovery. An achiever, he did not think of himself as disabled.

His condition was stable for twenty five years. In 1979 he began to experience extreme fatigue and new leg weakness. He considers this as the beginning of his PPS. In 1983, although he could still walk, he started using an electric scooter along the very long corridors of the hospital in order to save strength and energy. This scooter was left just inside his entry point to the hospital for him to use the next day. In 1990 he was fitted with a right ankle foot orthosis supporting his dropped foot and enabling him to carry on walking. When Hilary visited with Dr. Halstead in Washington just prior to the Toronto PPS Conference, four years ago, he was just about to get a scooter for home and social use.

Dr. Halstead illustrated his progressive decline in walking ability with a chart. This shows on the left side the number of Blocks he could walk, starts in 1975 and ends in 2002. The downward slope goes from a maximum of walking over ten city blocks down to almost zero.

[Dr. Halstead purchased a scooter for getting round the NRH Hospital in 1994. He waited till 1999 to get one to use at home and when elsewhere. So many Polio Survivors fight change “We are not there yet”

including health professionals with PPS]

Dr. Halstead then showed us slides of his home and work. Illustrating the changes that he has made, aids that he uses, so that he does not waste energy, so that he can do more of what he wants to do.

He lives in a house although from the front it looks like a bungalow. All the main living areas are on the one floor, and he has installed a stairlift (stair glide) to the basement area. This stairlift fits directly onto the stairs, not the wall, and can be, and has been moved from house to house.

In the kitchen he uses tall stools or stands leaning one knee against the cupboards for extra support. In the lounge he has had his couch raised on four six inch risers so that it is easier to rise from. In his office at home he has a cushion on the seat, all the important documents that he needs are in a box under the desk so that he only has to lean down to get at them. All the things that he needs are within short arm reach.

His bathroom has rails fitted to hold onto. He advises that if possible delay deciding where the rails for the bath should be fitted until you are wet. He has a small stool in front of the vanity suite so that he can kneel on one knee, place his arm on a cushion and leaning his head down he moves the shortest possible distance. Clothes that are on rails means raising your arm up to get them down so he has a ‘butler’ (stand with hangers and places for other clothes). Some years ago he found shoes with Velcro straps and that was the end of struggling to tie laces.

He made us laugh with his photographs of eating. This started with two spoons, a 5ml and a 15ml. He then showed a dinner plate including carrots and using the 5ml spoon, three carrot slices. But with the 15ml spoon he could get 15 carrot slices on board. He places his left arm on a cushion on the table and by leaning his head down there is less distance to the spoon. Better biomechanics and saved energy.

He then showed slides of how he stands up from chairs by placing his legs at a distance apart and his knees closer together. There are many tricks that we evolve to do what we need to.

He then told us about a time in his clinic when a patient said that she used pillows to support her when resting or sleeping in bed. He asked her “how many” and was surprised at her reply of five, that is till he got home and counted his six! He uses pillows to support the parts of his body that need it and so rests more comfortably. He has a fused shoulder.

He has had to reduce his work to part time and uses a headset and voice activated software to dictate reports. All his needs at short arm lever distance. He takes an hours break during his working hours, using a recliner chair and listening to soothing tapes. The next slide showed a sign taped to his office door. Therapy Session. Do not Disturb.

He uses a small suitcase on wheels to ‘carry’ his laptop and office papers around. He has a Bruno Kerbsider hoist in the back of his SUV for his electric scooter.

When out and going into a shop without his scooter he uses a seat stick so that when he gets to the counter he can sit and deal with his money etc. comfortably.

He likes playing the piano and is trying to figure out a way of playing with only his left hand that would sound like he is using two hands.

Dr. Halstead does some stretching exercises every day, eats a good diet of white meat, fish, fruit nuts and vegetables. He does not smoke, but does drink socially. He takes a few basic pills necessary for his health

Miami, April 9th to 11th 2007

Progression of Symptoms – City blocks walked 1975 – 2002

Dr. Lauro S. Halstead – November 2002

1975

6789

1980

1234

1985

6789

1990

1234

1995

6789

2000

Years

8 6 4 2 0

2e How a Chart quickly shows decline in

walking ability

and one multi vitamin.

Dr. Halstead emphasized that we should avoid using pain pills unless at night to help with getting a good nights sleep. We can eliminate muscular pain by doing less. He said we should regard our energy, as Hugh Gallagher had said in his book…

“My muscle power and endurance are as coins in my purse: I have only so many and they will buy me only so much. I must live within my means, and to do this, I have to economize: what do I want to buy and how can I buy it for the least possible cost.”

Dr. Halstead defined muscle pain as pain that will subside with rest. Pain that does not respond to rest has some other origin. His open sharing of his feats and foibles resonated with us all.

This was then followed by a short question and answer session. Most of the questions in the time allowed were about exercise and pain. Dr. Halstead said that exercise for some is just getting up and dressed, but for most others, he recommends a limited program worked out with a doctor or physical therapist with pps knowledge and experience.

After lunch Dr. Halstead told us a little about current medical research, although sadly funds for research are hard to get. [omitted as 20 years old]

Of interest, the one day conference took 13 days out of the month for Hilary and Richard. Day 1 to buy food for the 13 days, Day 2 to prepare food and pack clothes, Day 3 to pack , computer, truck and rest, Days 4 & 5 to drive 500 miles to Atlanta, Day 6 Conference, Days 7 & 8 to drive back, Days 9 – 13 recovering, Day 14 go food shopping again. Many chores get left to do this, its either/or

Finally here is another

quote Dr. Halstead used from Hugh Gallagher:

“Growing older with polio is a matter of economics… How much limited expenditure of energy for how much satisfaction. Minimise the exertion, maximise the pleasure.”

Within “The Pocket Book of Pacing”, the stickmen, with their usual combination of humour, charm and honesty, fill this book with all the info and practical tips that the author, Hannah Ensor, wishes she’d been given when she was struggling to manage her conditions and the stuff she needs reminding of when things are tough.

What is pacing? How does it work? But how does that work in real life?

Pacing is a way of getting the most from the energy you have. The pocket book of pacing gives a down to earth take on how pacing can be used in practice and considers it from various angles—not just what you do and taking breaks, but also how you do things, adaptions which can help, and ways of communicating your needs to other people.

Page 58 – Treat “I’ll just finish this” with extreme caution

It feels silly to stop – you are “in the zone” “nearly done”. But in reality a short break when you need it can make all the difference. Then you can do a few shorter more effective sessions instead of one long session struggling through the fog, pain, other symptoms.

Hannah’s blog, which can be found at https://stickmancommunications.blogspot.com has a wealth of pacing related articles which may also be of use.

A helpful book for Polio Survivors

The Pocket Book of Pacing by Hannan Ensor

96 pages – 110mm x 110mm – £5.50

Page 13

COVID NOTES:I know how much people are tired of even thinking of this virus but circumstances compel me to add a precept. Something significant has changed that can affect all of us if we want it to.The new formulation of the current vaccine is the first shot available that has as its target the specific variant that is dominant now. That would be BA5. In addition, the jab is bivalent which means it has two components: the one above, BA5, and the original strain of covid that started this whole agony. Half is the Wuhan strain.Why is this so? Because when you inoculate a person with two strains like this the effect is that the immune system reacts by producing a wide range of antibodies that may cover variants that are likely to come in the future.Why didn’t I mention BA4 which you see in the literature? This is because BA4 has exactly the same mutations on the receptor stalk as BA5 has, so it doesn’t matter.In any event, I urge all of you to make an appointment and get this. If you are dead set against it not only will you keep these variants circulating longer but you will be shortchanging yourself out of the benefit mentioned above.Professor Eddie Bollenbach. CT, USA Member

Post Polio Matters Volume 10 Issue 10

Polio Survivors Network Newsletter

June 2022 — Volume 10 Issue 10 of 12 [118]

The Neurological Alliance

#BackThe1in6

It raises awareness of how many people are diagnosed with a Neurological Condition

1 in 6 people in the UK live with a neurological condition but there simply isn’t the workforce or services in place to support them. Join us in calling on governments across the UK to back the 1 in 6 and set up a Neuro Taskforce to deliver real change.

Sign the petition today https://tinyurl.com/BackThe1in6

Finding out you have a neurological condition is scary and confusing. Receiving the right information and support can make a real difference. 2 in 10 reported not being given an explanation of their diagnosis. Almost 40% of adults were not given any information at all. This must change!

Polio Survivors have experienced years – some decades – of not receiving an early diagnosis because most Colleges of Medicine were either not aware of or not teaching enough facts about the later stage of Polio. Post-Polio Syndrome. This too must change!

Lincolnshire Post-Polio Library 100+ articles

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

This publication is provided free thanks to the generous donations of our lovely members.

Thank you so much!

Page 2	Contents, Donation acknowledgements
Page 3 – 4	Editorial – Hilary Boone
Page 5	Message From Our Chair
Page 6 – 7	Verite Reily-Collins Writes
Page 8 – 9	Polio and Me: How my father’s illness shaped our family
Page 10 – 11	I had polio – its legacy has lasted all my life!
Page 12 -13	My Polio Life
Page 14	Two pages from twenty years ago LincPINs
Page 15	Rest, Pacing and Timing
Page 16 – 17	Post Polio News (PPN), Toni Writes
Page 18	Motability Events
Page 19	Management Committee, Useful Polio Articles
Back page	Naidex Event

Donations and Charity Incentives Paid(since last newsletter)
Donation (J Barter)	£12.50
Smile.Amazon payment	£12.92
Donation (V Scrivener)	£30.00
Donation (D & J Shaw)	£12.50
HMRC Gift aid payment	£106.05
Donation (K Lagwi)	£12.50
Smile.Amazon payment	£7.34
Donation (PayPal Giving Fund)	£8.89
Donation (G Ross)	£25.00
Donation (PayPal Giving Fund)	£1.00
Total	£228.70

PayPal donate link:

https://bit.ly/2KzyAyE

Editorial by Hilary Boone

I must apologise for the very late delivery of this Newsletter and explain the reasons.

I started research into PPS on 25.11.1995 and have given up a major part of my life to this and my work for PSN which includes editing the Newsletter. This helps me feel, despite my ongoing disability, that I can still be a useful member of society and doing something in return for the benefits I receive. For nearly three years I have been forced to spend a huge amount of my time, and available energy for my own post polio life, dealing with an ongoing issue with Continuing HealthCare [CHC]. This has been instrumental in a faster decline in my physical ability and increase in the struggle to manage the stress of the decline of both our lives. My Charity and University work has had to take a back seat.

I/We have been in receipt of funding to help us manage our lives at home for over 23 years. Without this we would not be managing and we are very grateful that the system exists. Despite the slow deterioration of our neurological conditions at a review 2.5 years ago half Richards funds were removed. It took 19 months to obtain the necessary medical assessments and start new paperwork that were instrumental funds being reinstated from 27.9.2021. Would you expect me to tell you that we are still struggling to obtain a properly worded Agreement? Hot off the press. Saturday’s post brought a Recorded Delivery offer of a meeting.

Once we learn more about Post-Polio we begin to understand why we are having problems and learn how the best way to manage our lives is by ‘Pacing and Resting Activities’ and using any aid or assistive device [including human] to not waste energy on something we do not have to do. Energy Tokens. Ten a day and Seventy a Week and no more. Spread £10.00 out over an average day. Extra activities like attending a medical appointment/doing some gardening etc will take more and that has to come from not doing some of things you would do on a normal day. You have to decide do I do this or that? How many of you have pyjama days saving the energy to get dressed to fit something else into your day? I have to allocate some of my ten energy tokens towards helping my husband every hour we are unable to employ Carers. The minute Carers arrive I raise the foot end of my recliner chair, pick up my laptop, and add a neck cushion to support my head and deal with the never ending paperwork all this entails. I am being forced to experience far too many pyjama weeks and I hate it.

Services for those with Neurological Conditions in Lincolnshire have been extremely poor for decades as I am sure our long time readers will remember. Lincolnshire Neurological Alliance [founded in January 1998] learned in 2000 that Lincolnshire Health Authority believed that employing ONE visiting Neurologist ONE Day a Month at the County Hospital was enough for the 634,300 population. LNA proved the statistics that LHA were using were flawed.

We campaigned for better services and it was not long before our County had its first resident neurologist and other staff. A huge increase in clinics. Sadly after a few years this Neurologist decided to move to another County and we started to see a decline in local services and a failure to provide adequate neurological services in the Community.

We continued to campaign for improved statistics to prove the need. The Healthy Aging Group of the University of Lincoln were asked by the County Council to undertake an independent health needs assessment for people living with neurological conditions in the county. This is a way of reviewing the current resources available to meeting the needs of a specific population.

They surveyed service users, carers, voluntary sector organisations and health professionals. All four groups agreed that service provision does not meet demand.

https://harg.blogs.lincoln.ac.uk/2018/08/13/developing-a-health-needs-assessment-forpeople-living-with-neurological-conditions-in-lincolnshire/

The LNA continued to campaign and then Co-production became the buzz word and we hoped that at last our input would become more than just the far too often ‘we consulted box ticking’ and our views being ignored.

Co-production is an approach to decision-making and service design rather than a specific method. It rejects the traditional understanding of service users as dependents of public services, and instead redefines the service/user relationship as one of co-dependency and collaboration. Just like users need the support from public services, so service providers need the insights and expertise of its users in order to make the right decisions and build effective services. In practice, it means that those who are affected by a service are not only consulted, but are part of the conception, design, steering, and management of services.

When Co-production happens like this it saves time, stress and money for all involved. Problems raised by Users/Carers, and any other section of people involved, can be sorted before they happen.

When Co-production does not use the on the ground personnel from every section then we continue to see an increase in the number of complaints and appeals. Staff time is now taken up dealing with them and everyone involved is put under increasing stress. Time and money that could be better spent is wasted. And now another new title for another new system comes on statute on the 1st July 2022. Will this be any better? LNA have seen many changes over 24 years and sadly problems raised repeatedly over the years still remain….

Integrated Care Systems are partnerships of organisations that come together to plan and deliver joined up health and care services, and to improve the lives of people who live and work in their area.

“The proposed NHS Lincolnshire Integrated Care Board (ICB) will, subject to the passage of legislation through Parliament, be fully established on 1st July 2022 to oversee the commissioning, performance, financial management and transformation of the local NHS”

Polio Survivors Network are members of the Neurological Alliance and recently became members of the Continuing Healthcare Alliance. The CHA is a group of 20 charities and organisations who believe that NHS continuing healthcare needs to improve. Who aim to make continuing healthcare fairer and easier to access for those who need it most. This is run from Parkinson’s UK. www.parkinsons.org.uk/get involved/continuing-healthcare-alliance

We would love to hear from any of our readers, their family or friends who have been/are involved with Direct Payments/Personal Health Budgets, Continuing HealthCare and with the new Integrated Care Systems in your County. Any information regarding the processes and paperwork both good and bad would provide more facts for our database of information to support discussions

Our website is continuing to grow thanks to the hard work of Toni Dunlop. The more items you share the more information we have to base our response to those who ring and email us for information. If you would like to check with us first if we have a copy of something please do, but remember we would rather have ten copies than none.

We continue to share information with many other PPS Support Groups around the world.

We would love to feature more stories or snippets of your life and items for a Make You Smile Page in forthcoming issues. Your Newsletter Needs You.

A Timely Reminder. When working on something special please do not forget to save it regularly. Yesterday afternoon after working on the Newsletter for five hours I really needed to stop for the day. I started closing down pages I had open on Google. Tired as I was when I clicked on the fifth open page and it said ’Do you want to save?’ I clicked ’No’ because I had finished with that page… what I had not noticed was the mouse had slipped down onto Publisher and I had just lost five hours work.

Your Committee need more help please. We are not only managing our physical health but getting older with all the paperwork that entails. We know of at least one group where they have two people for each post. If you could spare us an hour or two a month to take on a task then get in touch. You do not have to have the Internet we can pop items in the post and can add you to a meeting via your telephone.

MESSAGE FROM OUR CHAIR

PPS – TIME TO BE THE FIRST

Not the second, last or never mentioned condition!

The received wisdom has been that PPS (Post Polio Syndrome) is a diagnosis by exclusion. Is this the wrong approach for you the patient now, should it be a diagnosis FOR INCLUSION.

It may be true from a medical reductionist stance, that exclusion is the way to go, but it certainly shouldn’t be what drives your assessment and treatment. If you have had polio or even if you are unsure if it was polio, the probability is that polio could and probably is having an impact on all of your health care and life. You may be unaware of it, perhaps just coping well, deliberating minimising or ignoring it but this is the ostrich position. By adopting an approach that doesn’t allow for PPS until everything else is excluded, the result is that, especially if something else is discovered, it is often then ignored, overlooked or just not assessed or factored into all your current and future healthcare.

Multidisciplinary versus Holistic?

We have to recognise that the NHS, medical and health professions even before the current problems, more or less abandoned the term ‘holistic’ care in favour of an approach that divided our bodies and minds into separate compartments, conditions and specialties. You hardly hear or read the word ‘holistic’ anymore in mainstream healthcare narratives or contracts and sadly it has taken the feel of an alternative at worst, or complimentary health care approach at best.

So, we are left with the term ‘multidisciplinary’ which of course emphasises the fact of our health needs are divided up into different parts, separate disciplines and so are left with few adopting an overall holistic care approach. It appears MDTs (multidisciplinary teams) are the closest these days. This is despite the fact that we are whole and complex integrated and interdependent systems making us uniquely who we are. People who have had any degree of previous polio are not well served by that fact being ignored even when it appears symptom silent or ‘coped with’.

Try to set the Polio agenda

In an ideal world it should not be a binary choice between bottom up or top down medical and psychological care. The reality of the situation is that the traditional GP role as the holistic care manager of you and your family is no longer what it was, and we have to take control and put it on the agenda ourselves. There are lots of resources and information out there from polio groups around the world and of course us and our library, please take advantage of this before not after there is a problem.

Adequate is NOT optimum

So, your new best policy is always mention you had polio, don’t let it be dismissed with the retort, but this isn’t anything to do with your polio or PPS. Whilst it may or may not be directly, the chances are the treatment, prognosis and the outcomes will be affected without it being assessed and factored into who you are. Much of the acute care is good but having a chronic condition means vigilance and seeking OPTIMUM not just adequate healthcare for you as a previous polio patient with or without, a formal PPS diagnosis.

Verite Reily-Collins

PSN Trustee, Health Journalist and owner of aftercancers.com

Jeremy Hunt – May 24th 2022.

Six years as Minister and what did he have to show for it? Jeremy Hunt was Secretary for Health from 2012 to 2018, probably one of the most elusive Health Secretaries ever. Finally he challenged Bojo for the PM ship, but lost out. However, with his new book just out, signs are he is keen to challenge again for the leadership in the near future.

One thing that could be said about Hunt’s 6-years in post was that it was pretty undistinguished – after six non-productive years – he did manage a strike – and the waiting lists grew longer during his time. Now, the House of Commons has appointed him Chair of their Health and Social Care Committee (HSCC), Strange – like asking a schoolboy to mark his own homework, as the HCSC would effectively be commenting on work done by Hunt when he was officially the Minister.

He now has the cheek to write a book about what’s wrong with the NHS, called :

Zero: Eliminating unnecessary deaths in a post-pandemic NHS.

Judging by reviews already out, it won’t need me to point out that there were innumerable ‘adverse incidents (the polite word for deaths) during his tenure of office,

It’s not all down to Hunt but much of what’s wrong in today’s NHS stems from systems emanating from his six years. During his time, he must have been working diligently away eroding what efficient systems were still in place, so today patients are ‘served’ by Appointment Call Centres that could have a waiting list that has soared up to anything from 6.4 million to over 13 million (depending on which source you go to). According to a report by Policy Exchange, NHS bureaucracy has doubled since the pandemic; knowing how slowly the Dept. Health moves, this increase must have started off under Hunt.

Amongst the “highlights” under Hunt was a months-long clash over contracts, culminating in junior doctors staging a series of walkouts, the first all-out strikes in NHS history. This resulted in newly-qualified doctors, with their training having cost the NHS millions, going off to work in Australia and America, leaving the NHS short of qualified staff.

Then there was trouble at Lewisham Hospital, where Hunt’s battle to drastically cut services and close departments – including vital maternity, A&E and intensive care units – reached the High Court, where he lost. Judges found he had acted outside his powers after the Save Lewisham Campaign Group pushed the case to victory.

In 2013, Hunt announced a fundamental review of emergency care following waiting times that were the worst in almost a decade. A year later he was criticised by a health watchdog for claiming in the Commons that median waiting times to be seen in A&E departments had halved since 2010; 2015 revived the 2013 statistic – this time, seeing the worse A&E waiting times in a decade; and in 2017, Hunt admitted that the NHS must do better when it comes to waiting times after failing to miss targets for cancer care, A&E and routine operations over 18 months.

Underfunding caused the next crisis – the worst ever winter crisis, – caused by systemic underfunding: the Minister failed to ask for enough money to keep the NHS going efficiently. Do you remember this involved the Red Cross saying there was a ‘humanitarian crisis‘ in winter care caused by ‘systemic underfunding’ following the record-low A&E waiting time performance?

Yet under Hunt front-liner staff numbers went down, but readers might be pleased to know that numbers of Admin. staff increased! After La la had left, it was very obvious that the NHS needed more front-line staff, NOT Administrators. Yet in his six years I can’t remember any initiative from Hunt to try and increase numbers, Now, Hunt’s smiling photo no doubt will greet us from windows of bookshops, encouraging us to buy his book. But as far as I can see, this is just a way of getting us to vote for him – I seem to remember he ran against Bojo for leader, and I am sure he still has ambitions to be Prime Minister.

The final comment comes from NHS expert, Roy Lilley

“\has Hunt learned enough to be the next PM?”

Holiday Read

If you are looking for something to read on holiday, why not pick up “Vaxxers”, the story behind developing the Astra Zenica Vaccine. Written by Sarah Gilbert and Catherine Green two people who really go on with serious work.

[Editors comment https://fabnhsstuff.net ]

Roy Lilley is an NHS writer, broadcaster, commentator and conference speaker. The Academy of Fabulous Stuff. A social Movement for sharing Health and Social Care ideas, services and solutions that work. ]

Another Important Point

Warning! if a doctor asks you “Can you climb stairs”, do not jump in with YES!, Be cautious – I’ve learned to reply “on my bum”.

This blunt statement concentrates doctors’ minds and ensures they get the picture from our side. It jolts them out of their comfort zone, and makes them see that ordinary tasks are often difficult if you have to factor long-term effects from polio into the equation. ..

Once you have got their attention, and they start to realise you won’t fit in their tick boxes, I hit out with “but I do have trouble with xxxxx” and ask for help with whatever is bothering me. Controlling the appointment means less of your time is wasted, and appointments are more productive – for me, anyway.

Today, I’ve discovered one often has to take on the role of teacher when dealing with NHS staff. They are lucky enough to have grown up in a fully-vaccinated-against-polio-world. But, this has made the NHS complacent and can give them ideas – at my last physio appointment I didn’t think the physio had much clue, so looked on their lanyard. It gave their job title as ‘Assistant Practitioner’ . I asked, and was told “I’m a trainee – started eight months ago”.

No wonder the poor kid hadn’t a clue what polio was, or what it did to our muscles.

The NHS seems to have decided, in its wisdom, that we polio survivors have all died off (in its dreams) and therefore they don’t need to train staff about our needs.

Recently it even tried to cut us off completely; the ONLY mention of Polio on its website was about Post Polio Syndrome; totally ignoring polio survivors who DON’T have PPS.

World Health Organisation, were not amused and they, and PSN, have made the NHS re-write the webpage. In another cost-cutting exercise, hospitals across the UK have made Covid-19 an excuse to close hydrotherapy pools down, and are resisting attempts to get them re-opened.

Recent scandals such as the Paterson case, the Shrewsbury and Telford Hospital Ockenden Report, etc. etc., have bought out what the NHS tried to hide, but carpets were too small. Common to all of the reports was the comment that patients aren’t being listened to — which means YOU just have to open your mouth and comment – loudly.

Case study Valerie, a PSN member, was offered a telephone appointment instead of her usual six-monthly review by her surgeon. She knew she needed to show him how her mobility was failing, so stuck to her guns and said NO – she wanted to see him face-toface.

Much to her surprise, she has been offered a proper appointment in his hospital for the same time and date – so if we ask – we do get!

With this in mind, try being assertive – and see if it works!

Verite Reily Collins veritegreenbee@gmail.com www.aftercancers.com

THE TIMES HEALTH SUPPLEMENT – FRIDAY 24th JUNE 2022 Polio and me: how my father’s illness shaped our family

Sarah Passingham with her father, Push, in the Sixties; the author today

Sarah Passingham

Thursday June 23 2022, 5.30pm The Times

The disease is back in the headlines after poliovirus was found in sewage samples in London. For Sarah Passingham, this news has personal significance.

When I was a child I dreaded going to play with friends whose fathers would be there. Granted, this was the Sixties, when fathers were often at work, but it went further than unfamiliarity. They frightened me. Their stilt-like legs, dangling arms and the way they loomed over me all served to intimidate and unnerve. I’ve heard of a similar experience from people who grew up with single mothers, but my parents were happily married and furthermore my father often worked from home. Push, as he was known, was a big character and very much the centre of our household, so a male presence was hardly unknown to me, but in my little world fathers used a wheelchair to get around.

Push was totally paralysed from the waist down in the terrible polio epidemic of 1952. He relied on his arms and his chair for all independent mobility, so I never saw him upright. He was 6ft 4in but sat at about 4ft tall and so, by the time I was six or seven, I had outgrown him. Being seated was a great leveller. To the family and close friends his chair did not identify him. But it did define him, and by association it defined us as a family. His Everest & Jennings wheelchair literally marked out the physical limits and boundaries of his body, and had to be allowed for.

Push used to say three things happened in 1952: one wonderful, one terrible and an almost. He was a world-class oarsman and disappointed to narrowly miss rowing in the Helsinki Olympics, but at just 26 his sights were set on 1956 in Melbourne, Australia. He married our mother, Diana, in September but six weeks later he caught polio. In hospital he contracted TB, another disease for which there was no vaccination at the time, and the combination kept them from starting their marriage properly for nearly seven years. Their lives changed for ever.

My brother and I knew where those wheelchair boundaries lay from toddlerhood. We could haul ourselves upright against the big back wheels ready to be swung up onto his lap, but we learnt never to kick his legs or jolt his chair as this caused him great pain. The giraffe-like men that I met when I left our house didn’t have strict boundaries. They didn’t stay in one shape. They moved around too much and I didn’t know where to stand. I had to crane my neck to check their faces. Their arms and hands swung about alarmingly. They were an unknown quantity. Until I was considerably older, I was too nervous to see beyond their differences and get to know them. Later still, if I forgot my usual little preparation speech, I saw that same anxiety reflected in the eyes of my school friends when they met my father for the first time.

There were other boundaries that we should never cross and one was talking about his illness; a generational hangover from the war perhaps, but my imagination ran wild. After reading Winston Graham’s The Walking Stick at an age when I was too young to comprehend that every survivor has an individual experience, I terrified myself reworking the scenes of Deborah in an iron lung, imagining my adored father

suffering dreadfully with the fear of suffocation at every breath.

The reality was bad enough. Constant and appalling pressure sores, a gut that didn’t behave reliably — you really don’t want to catch a stomach bug when you have very little control over your own body — and pain. So much pain. As well as the sores on his backside, sometimes the size of a dinner plate, his legs ached, his shoulders were overworked, he suffered with chilblains and he developed scoliosis of the spine. Occasionally he fell out of his chair and was horribly bruised. He almost never complained, but we saw it in his eyes when we had suddenly to leave an outing we were on, or a party that we were enjoying and simply go home so he could lie on his side on the sofa, or just go to bed. Then there was the waiting. My brother and I learnt to wait for England. It took so long to get ready to go anywhere that spontaneity was never a part of our lives.

It feels disloyal to suggest it, but at a time when small children usually take centre stage in a family, we always came after Push in the pecking order. Perhaps we learnt something valuable about life, but it certainly changed us, the way we process emotion and find it hard to express our needs. Able-bodied members in a family where there is disability are always affected too, and recent research shows that trauma gets passed into subsequent generations.

Then there’s the whole issue of identity. Occasionally Push referred to himself as a cripple, which definitely halted further conversation. What he chose to call himself was not up for grabs by the rest of the population. All my life I’ve struggled to find an acceptable word for not walking, but in the end I always resort to “using a chair”.

In the past two years we have become familiar with another virus that has changed lives, and the expression “long Covid” is familiar to almost everyone. But how many have heard of PPS (post-polio syndrome)? This cruel condition began to make itself known to Push during the last ten years of his life. Thanks to Post-Polio Health International we know more about why older polio survivors start losing hard-won muscle tone, experience even more pain and can succumb to something that almost feels like the disease taking hold all over again.

Push died peacefully at his home in 2003. He made it to 76 thanks to a lifetime of care and dedication from my mother — who was only 23 when her husband was driven off to an isolation hospital one desperate Sunday morning in October. Polio doesn’t often kill, but complications of polio are a life sentence. And not only for the person affected.

The shock of reading today’s headlines about live polio virus being found here in the UK froze me to the marrow. I have a grandson about to turn two and our daughter has another on the way. I felt panic rise as it must have in other mothers during the years of the “summer plague”. We should remember that we are all only a sugar lump away from another epidemic and fear beyond anything we’ve experienced with Covid.

Sarah Passingham’s family memoir, PUSH: My Father, Polio and Me, is published by Story Machine

I had polio – its legacy has lasted all my life!

Hilary Boone, 75, founder of the Polio Survivors Network (as told to Elisabeth Perlman)

I caught polio in Benghazi, Libya, when I was five years old. It was 1952. They’d brought my father out there because he was in the Royal Corps of Signals during the war. He worked for what was then GPO Telephones (now British Telecom) and took a contract to repair the phone system.

My brother and I got whooping cough first. But then I contracted polio from a girl I’d played with on the beach. She’d also come over with her family because her father was in the Lincolnshire regiment.

I became paralysed from the waist down. I was very ill. My mother called the doctor a few times and was dismissed. They thought it was flu. Finally, she was told to bring me to the army hospital straight away. They didn’t say why, but the other girl had already been admitted with polio and they realised they had an outbreak on their hands. I was kept in isolation for a couple of weeks. I remember my mother telling me that she had to stand at the doorway of the room. She wasn’t allowed in and had to wear a mask. She was worried sick. She wanted to know what I’d do if I needed the toilet. And I said, “Oh, I just click my fingers and say ‘Jeeves’, and an orderly brings me a bedpan.” It was then always the family joke.

As soon as I was let out of isolation, my parents inquired about hydrotherapy. The hospital said they didn’t do that. So my mother asked if she could take me swimming every day. They picked me up from the hospital every afternoon. Lady Mountbatten actually came to visit the poor polio children at the hospital one afternoon, but she couldn’t see me because I was off swimming.

Anyway, I gradually started to learn to walk again. It took six months. I was always falling over but was much more mobile, just a bit doddery.

It was shocking for my parents to experience. My father wrote back to his mother making light of my condition because he didn’t want to worry her, but he really was worried. Many years later, when I told my parents I had post-polio syndrome (PPS), they were both absolutely distraught because it opened the box on how they’d felt when I was a child.

They’d just shut it off. That’s what I’ve done with so many of my memories from the time. If I don’t want to remember it, I don’t remember it.

In 1953 my father’s contract ended and we moved back to the UK, settling in Hounslow, Middlesex. As far as I was concerned, I had polio but I went to school and tried to function normally. I was just always falling over.

Things really improved when I was 12 because I had a transplant on tendons in both feet. After that I wasn’t tripping over. I wanted to do every sport I could that didn’t involve running. I completed lifeguard training a few years later and got as far as an orange belt in judo. If I’d gone to a higher belt, people would have beaten me all the time, because if I bent my left knee more than four inches, my leg would collapse.

Tell me I can’t do something and I’ll prove you wrong. I did the Lyke Wake Walk across the North York Moors when at training school for the police at RAF Dishforth. I served four years in the police and then moved to Lincolnshire and worked as a swimming teacher and lifeguard.

However, in 1988 I had a fall, which left me with fatigue and a weakened body. In seven years, no diagnostic testing picked up PPS. My muscles were tested using single actions only, which did not confirm that they were weakened. My prior polio was not in the equation till I mentioned it. Then I learnt there was another stage following the stable period after recovery. I started researching that day and have not

stopped since. The British medical establishment needs to understand the extent to which this disease can have lasting effects.

The polio vaccine was not successful until April 12, 1955, three years after I caught the virus. Regardless, that day is a special date for me as my only grandson, Dain, was born on April 12, 2011.

– Article featured in The Times Health Supplement 24 June 2022

————————————————————————————————————

You may have seen some of these articles regarding polio virus being found in London recently:

 https://www.gov.uk/government/news/poliovirus-detected-in-sewage-fromnorth-and-east-london

 https://www.bbc.co.uk/news/health-61896411

 https://www.bbc.co.uk/news/health-61900915

 https://www.bbc.co.uk/news/health-61915794

 https://www.science.org/content/article/poliovirus-in-london-sewagesparks-alarm

 https://www.theguardian.com/commentisfree/2022/jun/27/polio-detecteduk-outbreak-infectious-disease

 https://time.com/6190607/polio-in-london/

Is there anything you would like to know about this issue from the relevant organisations?

We are here to support our members who are concerned/have questions about these findings?

If we can be of any help and support please let us know.

Or write to PO Box 954, Lincoln, LN5 5ER and we will do what we can.

MY POLIO LIFE – https://poliosurvivorsnetwork.org.uk/new/my-polio-life

A Self Assessment Patient Questionnaire to assist you with collating information on your Life as a Polio Survivor to help when attending medical appointments.

I have taken many phone calls and emails over the years PSN has been in being mostly asking for information on post polio syndrome and secondly asking for advice on attending your first appointment with a new health professional.

You have probably spent many months if not longer wondering about issues but done nothing about them. Often your family and friends can see a difference in how you are managing but you don’t because you don’t want to see it.. If you do not voice the issue out loud then it does not exist. [Anyone recognise that?]

We developed My Polio Life so that you could quickly record a lot of basic information about your life. What equipment, symptoms, diagnoses etc you had and now have. We then suggest that you start an A4 Ring Binder split into sections adding pages to increase the amount of information where you need to. Sections like; what you and family members remember about your polio and recovery. More information on the equipment you had and now have; the qualifications you have and include certificates or awards for anything. We have led varied and comprehensive lives and all achievements are important. Remember most health professionals hearing you had polio will have no idea how well you recovered or what you achieved from looking at you now. Add a few photos and see the ’Oh I had no idea you could recover that much from having paralysis.’

These files are for you to use as an aide memoire to prepare information for appointments. We do not suggest that you produce either at an appointment, firstly because there is no time to read it and secondly it can be a bit intimidating for those whose training has been minimal wondering if your knowledge of polio is greater than theirs. A page or two and few photos is fine.

All your Committee have been through this and we know having to think in depth about your issues is not easy and speaking the facts out loud even harder. About 20 years ago I was given permission by a PPS specialist in America and her patient to sit in on his third yearly examination. I had spent the previous evening chatting to him when he told me that he was also having problems with his arms now. The doctor examined his arms and said “this seems to be much the same as last year but have you noticed anything”. He said “No”.

I obviously could not say anything but I could see myself a few years earlier doing the same. A bit later that day I asked, “why did you say no when you told me you were having similar problems to me?” His answer, “Her examination did not appear to find anything and I did not want to be worse than last year”

What does an average new medical appointment consist of?

HISTORY

TAKING

PHYSICAL

EXAMINATION

X-RAYS and OTHER TESTS

DISCUSS RESULTS

EDICAL APPOINTMENTS

  

Preparing for the appointment.

Unless we have seen the health professional before they will start with taking some history. Then they will do a physical examination and possibly send us for an x-ray or some other tests before we return to be told the results and the next steps. In the UK with free healthcare and limited time for appointments the speaking time could be as little as ten minutes. Make every word count.

We recommend that, if at all possible find out from the secretary of the Department, who has the appointment been scheduled with [the Consultant or a Registrar] roughly how long do the appointments usually last, how many polio survivors have they seen, are they aware if any xrays, blood or other tests have been scheduled. You now have more idea of how long you have to speak about your issues. Start with the most important one and have one or two more ready if there is time. You can always ask for another appointment to discuss the rest

We recommend you start with Page 10 and Actions of Daily Living. Add another sheet if you need to add more actions. Now for each action How did you this at Best Recovery and we suggest that if you did this as normally accepted then write ‘Normal’ if you had your own way of achieving the task then write ‘My Way’. Now think about how you do that action now. There is only room for a few short words. You can expand on this on the page in your A4 Ring Binder. I wonder how many of you will read 3.1 and have to go back to bed and roll over to be able to write down how you do this. [www.thesnoozle.com is a brilliant aid to help you turn more easily].

Once you have completed the list put them in order of importance. What is the action you are having most problem with. For me it was 3.13 Going up Stairs. My issues started after a Fall and I had problems and pain in my neck and left arm. During the next 7 years I answered their questions. I explained I would come home from work and crash out in the chair exhausted. I assumed that their physical examinations of me would confirm what I was reporting. All their single action Manual Muscle Tests showed I had good strength and it was not till years later that because they found nothing they thought I was making it all up. My prior waist down paralytic polio was not in the equation.

Where did I go wrong? I had had good recovery from paralytic polio. Prior to my fall I was an RLSS Advanced Teacher, Senior Lifeguard, Training Officer, Grade II Examiner. Eight months later I went back to work and had to take my basic Bronze Medallion again and failed. Why did it never occur to me to ask for another appointment and say ‘I can no longer swim fast enough over 4 lengths or pull myself and my body out of the water at the deep end of the swimming pool.”

In 2004 I was referred to a Senior Physiotherapist who had heard of PPS having found our Website. After she graded my arm muscles saying how strong I was able to ask “If my arms are strong can you please tell me why I am using elbow rotation not wrist rotation to scramble eggs?” The physio examined my wrists and found the right one had extremely weak supinator’s. She then watched me do actions of daily living My Way. Getting up from the floor, getting in and out of a low saloon car. She was able to see where my weaknesses were and examine those muscles specifically. She tested more than once and saw how quickly some muscles weakened. It had taken 16 years but now my varied polio virus weakened muscles were graded correctly.

Don’t make my mistake. Be honest even if it is hard to hear yourself say the words. You have to be more specific and tell it like it really is.

The most important question to ask the Health Professional you are Consulting. I used to be able to do ’X’ this way but in the last ____ have had to modify the way I do it.

Please can you tell me what has changed in my body to cause this. They can now see that the ability of other muscles need assessing.

No.	Action of Daily Living	Best Recovery	How I do that action now
3.1	Roll over in bed.
3.13	Going up Stairs.

Two pages from twenty years ago LincPINs

I was searching the old Newsletters for the photo I have added on page 16 when I saw the following and did not realise at first that it was from my own daughter. Volume 4, Issue 8, Page 7, February 2004

A Daughters Dream. I have always had so much respect for my mother. She has always been so strong and independent, I could ask her anything and she would know the answer. For years and years she has been my support system, teaching me how to cope with the things in life. Then suddenly she started to have problems that she could no longer shield me from. It was like a slap in the face!

“What do you mean you’re struggling? You can do anything” My rock was starting to crumble and I hadn’t even noticed the cracks. The person I wanted to be like could no longer cope, so how the hell was I going to cope? I had been so sure I knew what my future held, but not anymore.

What sort of relationship was I going to have with my mum and she with her grandchildren.

Picture the scene………. It’s Christmas Day and the whole family are sat together opening their presents. My mum is sat on the floor playing with the grandchildren and their new toys. “Come on kids get dressed we’re going outside to build a snowman! “When they finally come back inside cold and tired mum gets on with cooking the dinner. After dinner we watch the Queens speech and then go for a walk round the park and feed the ducks. We get back to a nice warm house and mum flops in the chair exhausted, but satisfied that everyone has had a great day.

I know this might sound selfish but that’s how I imagined things. Not only is mum unsure of her future but so am I. My mind starts racing… Will she get worse? Who will help her? What help does she need? Why is this happening to me?

So as time goes on mum finds out what things she can do to help herself and comes to terms with her illness. She hasn’t really spoken to me about the future and what she thinks will happen, so I make my own mind up. I don’t want to accept what’s happening, I’m angry and upset, but most of all I’m scared. THE REAL QUESTION IS:- Is she the only one living with her illness

I wrote – We really need to learn more about how others view what is happening to us and how we cope with life, medical appointments, worries about our future and the arrival of brown enveloped benefits and other correspondence!!

Thinking back.. I needed a disabled bathroom and had been sent a Disabilities Facilities Grant Booklet. Pages and pages and I started to read through it… so much financial info on benefits etc. needed yet again on another form. It is hard to see in black and white how little you are now getting on benefits now unable to work. I got upset and threw the form across the room. About twenty minutes later my daughter came in and could see I had been crying and asked why? I was not going to tell her but she saw the corner of the large form/booklet and picked it up. She told me ’Social Services have just told me I am your official carer [news to me] so I will fill this in for you, in pencil, and I only want answers, no discussion.’

She started name, address, etc. and turned the page over and the next question was “Is this a benefice of an ecclesiastical estate?” What on earth is that? I explained that ecclesiastical related to a church.. I cant repeat her response.

On she went page after page and then she asked “Do you have an in valid carriage, what on earth is that?” I tried not to laugh as I responded that she had misread the word invalid as not valid and that it referred to a mobility vehicle. “They have not called them that for decades.. How old is this form?” The benefit for me was that now I saw what I must have looked and felt like when I opened the envelope and read the form. I made the following decision and have stuck to it ever since.

Every time I receive an envelope

see that I am not going to like reading the contents….

I get someone to read it and tell me which pages will annoy me the most

REST, PACING AND TIMING Grace R. Young, MA, OTR

Fatigue and pain must be respected. Overuse to muscles is not always apparent while it is occurring. Muscle pain is a warning signal that the muscles have been overused. The damage accumulates over a period of time and may not become obvious until you lose the ability to do an activity which was previously possible.

REST

Try to rest at least one hour during the day. If you work and resting at lunchtime is not possible, take a one-hour rest immediately after work. This will make your evening activities more productive and enjoyable. Lie down to rest so your back doesn’t have to support your body weight. Sitting takes 1/3 more energy than reclining. If you want to read use an overhead book holder so your hand and arm muscles won’t stay tense. You can listen to music, practice visualization, or meditate; the point is to allow all the muscles in your body to relax.

PACING

Have you had days when you felt so good that you took on an ambitious project and kept pushing yourself so you wouldn’t lose momentum? Were you incapacitated for a few days after that? It is tempting to overdo on your good days. However, you’ll be more productive over-all if you plan your activities for a balanced lifestyle. Prolonged activities such as cleaning house or gardening, can leave you exhausted for the rest of the day unless you break them up into short segments with rest breaks in between. Before starting an extended activity, decide how long you will work at it and allow a 15-minute rest break every 30 minutes. Use a kitchen timer to let you know when to stop working and when to start up again. Alternate light and heavy tasks throughout the week. Split your ambitious projects into daily segments throughout the week, and stick to your plan no matter how good you feel on any particular day. Plan fewer activities for the days when evening activities are on the agenda.

TIMING

You may have different levels of pain and fatigue at various times of the day. Activities which are simple to perform in the morning may be difficult later in the day, or vice versa. For example, if cooking supper in the late afternoon is too stressful, prepare most of it in the morning, to be reheated later.

HOW CAN YOU JUDGE IF AN ACTIVITY IS TOO STRESSFUL?

The easiest sign is a feeling of fatigue while you are in the midst of the activity. This seems obvious but many of us do not pay attention to our body.

If the level of fatigue is out of proportion to the level of activity, the activity may be too stressful even if your mind says it should not be.

If there is a change in the quality of movement. For example, you develop a tremor or “jerkiness” in your motions while performing the activity.

If there is a change in the quantity of movement; that is, decreased range of motion. For example, you can usually lift your arm to a certain height but that height lessens as you continue the activity.

If you start to use compensatory movements. For example, you “hunch” your shoulder in order to raise your arm, or you swing your leg out to the side instead of flexing at the hip.

My young grandson called the other day to wish me a Happy Birthday. He asked me how old I was and I told him I was 62. He was quiet for a few minutes and then he asked, “Did you start at One?” ———————————————————————————————-

Two hairy caterpillars were sitting on a garden path having a chat when a butterfly flew past. One caterpillar said to the other one, “You’ll never get me up in one of them.”

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.

Post-Polio News Daily is published early to late afternoon, GMT/UTC.

Post-Polio News RSS Feed Daily Digest is published at 23:00 hrs GMT/UTC.

The above editions, in addition to being notified on publication via Twitter, Facebook and LinkedIn are now announced on a new Post-Polio News Telegram channel:

https://t.me/postpolionews For information on Telegram see https://telegram.org/ Chris Salter. Owner/Editor/Gopher/General Factotum.

Ultra-long-acting antivirals as chemical vaccines to prevent viral diseases | Future Microbiology.

[Received 4 October 2021; Accepted 6 May 2022; Published online 6 June 2022] [Ahead of Print]

Abstract.

For two centuries, vaccines have been successful in the fight against viruses, triggering immune protection. Indeed, the elimination of smallpox, the only infectious disease eradicated to date, was made possible through vaccination. For measles, polio and hepatitis B, vaccines are available but significant challenges exist for universal coverage. For other viruses, such as HIV and hepatitis C, vaccines have remained elusive.

Recent advances in medicinal chemistry have resulted in the production of antivirals that can extend activity for months. We envision the use of ultra-long-acting antivirals for the prevention of certain viral illnesses, halting either contagions or reactivations under immunosuppression. Such ‘chemical vaccines’ would fill an immediate need in providing protection when classic vaccines do not exist, responses are suboptimal, escape mutants emerge or immunity wanes. Original Source Article: https://www.futuremedicine.com/doi/10.2217/fmb-2021-0254

Polio this week as of 8 June 2022 | GPEI | ReliefWeb.

[Source: GPEI] [Posted: 9 Jun 2022] [Originally Published: 9 Jun 2022] [Origin: View original] Headlines.

• One case of circulating Vaccine Derived Poliovirus type 2 (cVDPV2) has been reported in Eritrea and the government has immediately declared detection of this strain to be a national public health emergency. See ‘Eritrea’ section below, for more information. A new WHO report entitled, ‘Role of the polio network in COVID-19 vaccine delivery and essential immunization: lessons learned for successful transition’ describes the contributions of the polio workforce to COVID-19 vaccine rollout and essential immunization, and makes the case to sustain the network through integration and transition, in order to strengthen immunization programmes, protect against outbreaks, and deliver essential health services to communities.

Join the United Nations Foundation from 15:00 – 16:30 UTC on June 16th for a special webinar to mark Day of the African Child. The webinar, titled Preparing for a Polio Free World: Civil Society Contributions to Polio Integration and Transition Planning, will highlight the vital roles of polio eradication, transition and integration in supporting child health.

Rotarians from around the world are gathering this week in Houston, USA, for the annual Rotary International Convention. More than 1.2 million Rotary members around the world remain committed to the goal of polio eradication, raising awareness and critically-needed funds for the effort.

Summary of new polioviruses this week:

 Pakistan: two WPV1 cases

 Djibouti: two cVDPV2 positive environmental samples

 Egypt: one cVDPV2 positive environmental sample

 Eritrea: one cVDPV2 case

 Ghana: two cVDPV2 positive environmental samples

 Madagascar: four cVDPV1 cases

 Nigeria: two cVDPV2 cases and five positive environmental samples

 Yemen: 28 cVDPV2 cases

Original Source Article: https://reliefweb.int/report/world/polio-week-8-june-2022

Describing post-polio syndrome (PPS)| Neurología (English Edition).

[Open Access] [Accepted 5 March 2019, Available online 5 May 2021, Version of Record 4 June 2022]

Introduction.

Patients presenting sequelae of poliomyelitis may present new symptoms, known as PPS.

Objective.

To identify clinical and functional profile and epidemiological characteristics of patients presenting PPS.

Patients and methods.

We performed a retrospective study of 400 patients with poliomyelitis attended at the Institut Guttmann outpatient clinic, of whom 310 were diagnosed with PPS. We describe patients’ epidemiological, clinical, and electromyographic variables and analyse the relationships between age of poliomyelitis onset and severity of the disease, and between sex, age of PPS onset, and the frequency of symptoms.

Results.

PPS was more frequent in women (57.7%). The mean age at symptom onset was 52.4 years, and was earlier in women. Age at primary infection > 2 years was not related to greater poliomyelitis severity. The frequency of symptoms was: pain in 85% of patients, loss of strength in 40%, fatigue in 65.5%, tiredness in 57.8%, cold intolerance in 20.2%, dysphagia in 11.7%, cognitive complaints in 9%, and depressive symptoms in 31.5%. Fatigue, tiredness, depression, and cognitive complaints were significantly more frequent in women. Fifty-nine percent of patients presented electromyographic findings suggestive of PPS.

Conclusions.

While the symptoms observed in our sample are similar to those reported in the literature, the frequencies observed are not. We believe that patients’ clinical profile may be very diverse, giving more weight to such objective parameters as worsening of symptoms or appearance of weakness; analysis of biomarkers may bring us closer to an accurate diagnosis.

Original Source Article: https://www.sciencedirect.com/science/article/pii/S2173580821000614?via% 3Dihub

Toni Writes …

At a recent Polio Survivors Trustee meeting it was commented that we have received interesting queries via our website over the last few months. In the last year we have had queries from the UK and around the world regarding:

 AFO & KAFO advice due to weakening legs

 Are they any clinicians who are aware of polio survivor breathing issues?

 Help in getting a diagnosis of Post Polio Syndrome

 Knee replacement in polio affected leg

 Pain management

 Experiences of polio as a child

 Prognosis regarding weakening legs and use of wheelchair

 Help in educating health care professionals treating relatives who are polio survivors

 Advice regarding anaesthetic and antiemetics

 Neck vertebrae issues – could they be related to PPS?

 Sleep problems

 Is there any information on children of polio survivors having medical issues?

Maybe some of these themes resonate with you? Maybe you have some experience, tips or advice to share? As ever please feel free to drop me a line with your thoughts, or absolutely anything else on your mind. Take care

Toni

P.S. Hilary just took a call from Portugal seeking information on UK and USA post-polio knowledgeable health professionals they might consult on a visit to either country.

The events will showcaseCars from a wide range of manufacturers Adapted & Wheelchair Accessible Vehicles Powered wheelchairs and scootersElectric Vehicle Info HubThe opportunity to test driveStandard production carsVehicles fitted with popular driving adaptations Powered wheelchairs and scootersSpecialist advice fromMotability Scheme Advisors Adaptation specialistsWheelchair Accessible Vehicles specialists KwikfitRACRSA Motability Disabled Motoring UK Driving Mobility

If only you could buy these trailers.Richard and I were at Discovery Cove in Florida in 2004 on our electric wheels when we passed this couple. We had to ask them about this brilliant idea.His wife said that she got so fed up with not being able to keep up with him that she jokingly asked for a trailer. Her husband decided to make something and told us that this one is version 3.I can see our Carers asking us to make one for Richards wheelchair.The LincPin Volume 4, Issue 5, August 2003

More information and how to registerhttps://motabilityonebigday.co.uk

JAMES (age 4) was listening to a Bible story.His dad read: ‘The man named Lot was warned to take his wife and flee out of the city but his wife looked back and was turned to salt.’ Concerned, James asked: ‘What happened to the flea?’ ——————————————————————————————————————-‘Dear Lord,’ the minister began, with arms extended toward heaven and a rapturous look on his upturned face, ‘without you, we are but dust….’ He would have continued but at that moment my very obedient daughter who was listening leaned over to me and asked quite audibly in her shrill little four year old girl voice, ‘Mom, what is butt dust?’ ————————————————————————————————————-Two men were approaching each other on a sidewalk. Both are dragging their right foot as they walk. As they meet, one man looks a the other knowingly, points at his foot and says “Polio 1950”. The other hooks his thumb behind him and says “Dog Poop, 30 feet back.”

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, 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 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.

Editors Note: Articles from Polio Survivors and Health Professionals welcomed

…because WE’RE STILL HERE!

www.post-polio.org

6th – 7th July 2022 National Exhibition Centre Birmingham

THE FLAGSHIP EVENT OF THE DISABILITY COMMUNITY

www.naidex.co.uk – Links to all the following

Celebrity appearances “In Conversation” July 6th James Cracknell, O.B.E. – 11.45 to 12.15pm Baroness Tanni Grey-Thompson – 14.00 to 14.30

Many Inspiring Seminars

Over 130 Exhibitors, Trades and Charities

Live Performances Sing Along with Us Music Man Project Kate Stanforth Grumpy Gits

Unforgettable Experiences Adaptive Climbing Wall Motability Test Track Village Green Disability Horizons Marketplace

FREE tickets available from naidex.co.uk

AVAILABLE ON SITE

Seating and Food and Drink – Mobility Equipment Hire Disability and Changing Room Toilets – A Quiet Room Dedicated Door and other facilities for Assistance Dogs – BSL Interpreters

VIEW THE NEC’s ACCESSIBILITY GUIDE – inc. car parks, Skywalk, Halls.

https://www.accessable.co.uk/the-nec

Richard and Hilary will be at the NEC from about Noon on the 6th July 2022 to about 2pm on the 7th July.

Let us know if you are going to be there so we can say ‘Hi’

Post Polio Matters Volume 10 Issue 10 Read More »

Post Polio Matters Volume 10 Issue 9

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

Lincolnshire Post-Polio Library100+ articles

Polio Survivors Network Newsletter

January 2022 – Volume 10 Issue 9 of 12 [117]

See Page 10uk/library/

Take a look …If you get a few moments, please take a look at PSN’s online library. We have been adding to the information that is available online from our paper files. All articles are searchable.The PSN library is available from the Library link found at the top of our website homepage or you can go to it directly at www.poliosurvivorsnetwork.org.

HAPPY 2022

NEW YEAR

Photos from round the WorldPelicans on a JettyHastings, Victoria, Australia. By Fran Henke.Polio Survivor, Writer, Painter, Photographer, and more….www.franhenke.comSaguaro Cactus Dinosaur?Green Valley, Arizona, USA By Ellen Machules Riddle Polio Survivor, Photographer

Page 2

This publication is provided free to our members thanks to your generous donations.

Thank you so much!

Page 2	Contents, Donation acknowledgements
Page 3 – 4	Editorial – Hilary Boone
Page 4 – 5	Messages for our Members, Keep Your Pecker Up, An Excellent New Website For Personal Health Budget holders
Page 6	Will ‘lessons be learned’?, I’ve Been Let Down By Boris
Page 7	Toni Writes …
Page 8 – 9	Polio Survivors Who Also Have Parkinsons Disease, Please Get In Touch
Page 10	Polio Survivors Share Your Experiences
Page 11	What IS and What IS NOT Working in Your Area
Page 12 – 17	Post Polio News (PPN)
Page 18	Worldwide Polio Survivor Online Support During the Pandemic
Page 19	Management Committee, Useful Polio Articles
Back page	Fire Safety Advice

Donations and Charity Incentives Paid(since last newsletter)
PayPal Giving Fund	£79.47
Amazon.Smile	£11.76
J Barry Donation	£12.50
J & E Pullin Donation	£12.50
A & N Jackson Donation	£50.00
P Gavin Donation	£12.50
M Grindley Donation	£20.00
Total	£198.73

Editorial by Hilary Boone

Fingers crossed that life can return to pre-Covid sometime this year. Pharmaceutical companies are working their socks off to get vaccines out that will reduce the severity of the Covid that we could acquire no matter how hard we try to prevent it. It is hard having to add Covid rules to coping with PPS and the changes we continually have to make to manage our lives to the best we can. Having to miss out on a lot of the social life, so important to our health and wellbeing, has taken its toll of both of us and I am sure many of you as well. Trying – through constantly steaming up glasses – to read the info on some products on the shelves of Waitrose last month a lady and I bumped into one another. We both apologised almost the same words and then she added ‘I never thought that leaving home to buy a toilet roll could become the highlight of the month’!

In the last four months we have managed a couple of antique fairs, cold but we were ‘out out’ as Micky Flanagan says and a couple of trips to a local park, the BPF Lincoln Branch Xmas Meeting, taken out for Sunday lunch by one of our carers and family, and one hospital appointment at Sheffield plus we had three nights at a disabled caravan at Saltfleetby with all three carers and we had some laughs. I can still see Richard eating a rack of ribs with only one clean finger from sauce to push his glasses back up his nose. He really did enjoy them.

I also had a bit of a shock as I used to lifeguard at Chapel St. Leonards every weekend from May to September so Barbara parked at Chapel Point where there is a viewing centre/café. We started to ride our wheels along the coastal path but I did not recognise the scenery and thought we must have joined further north. Suddenly I was asked “Well don’t you want to go into Chapel St. Leonards?” I stood there perplexed. Here was the ramp that we used to run the boat down onto the beach and out on the sea for rescues but there were bush covered sandunes in the way and the sea was at least 500 yards further away. Then I was asked “Hilary when were you last here?” Oh it was the summer of 1988 before I fell and my PPS started…. eek 33 years ago. We went down into the village and I found a shopkeeper I used to know and he told me they started to work on the sea defences about nine years ago. I sent photos to both my kids and there were as surprised as me. Eight years of walking up and down the beach in my yellow t-shirt and short red pleated skirt for over a mile (picture 2), and now so different (picture 3).

WE NEED THE HELP OF ALL READERS…

There are many new issues since Covid that as Polio Survivors/Carers of Polio Survivors we have to manage. One of the most difficult we have found is being told your review will not be face to face but by Video Consultation or by Phone Call.

We have to remember that most health professionals have been taught little about the polio virus and how it affected our body at the time, how we recovered and how Post-Polio Syndrome affects us. We have found that the NHS, Patient.co.uk, and some medical charities are providing members with information on how to manage these type of consultations. There is a massive amount of basic information on the technical side of the appointment. What we need is to provide information on how Polio Survivors with or without a diagnosis of PPS manage their lives.

The main issue coming in from members are the stock answers. To help you get up, “Take my arm” or equipment a toilet raise seat with handles. So many of us do not have the arm strength to pull up, we push up and neither of these will work for us. More information on page 4 & 10-11

PHOTO TAKEN OCT 2021

RLSS LINCOLNSHIRE LIFEGUARDS

CHAPEL ST. LEONARDS about 2010

Continued from editorial

FACE TO FACE APPOINTMENTS changing to VIDEO CONSULTATIONS and REVIEW PHONE CALLS.

How to prepare for a telephone or video appointment . Please find some helpful telephone and video call advice here (some is specific to certain conditions but the principles remain useful):

Basic Information

 https://patient.info/news-and-features/how-to-get-the-most-out-of-your-telephonevideo-gpappointment

 https://www.nhs.uk/nhs-services/gps/what-to-ask-your-doctor/

Chrons and Colitis

 https://www.crohnsandcolitis.org.uk/news/blog-top-tips-for-getting-the-most-out-of-yourvirtual-telephone-or-video-a

Dementia

 https://www.dementiauk.org/get-support/diagnosis-and-next-steps/getting-the-most-out-of-a

-remote-consultation/

POST-POLIO SYNDROME INFORMATION SHEET in process…..

Please go to pages 10 and 11 for more information as to how you can help us provide the varied information we need as we all manage our lives in different ways.

MESSAGES FOR OUR MEMBERS

PSN Coffee Catchups

As you may know (and some of you have attended) we have been running virtual coffee catchups over 2020/2021. We are moving away from this format as we have found that once lockdown started to ease demand dropped. These sessions were very enjoyable and I hope you have enjoyed meeting other PSN members.

We are now offering any PSN member (or supporter) who wishes to have a 1-to-1 with some of the trustees, or would like to bring a group together, we can facilitate a video chat. Just contact psnadmin@poliosurvivorsnetwork.org.uk to make the arrangements.

2022 Annual General Meeting/Annual Report

Our annual report for 2021 is available to anyone who wishes in digital and printed format – please request via psnadmin@poliosurvivorsnetwork.org.uk or phone us.

We currently do not have plans for a face-to-face annual meeting in 2022. We may consider a virtual one if there is enough support – please can we ask that you register your interest by emailing psnadmin@poliosurvivorsnetwork.org.uk

Keep your pecker up by member Janet Whitworth

This is an English expression so pecker refers to the nose. Think of a bird’s beak. Another expression might be “keep your chin up.” In other words: “be positive don’t let bad things get you down.”

My dear friend Joan said these words to me on the phone without knowing how much I needed them. I consider myself a pretty positive person but to be honest I was feeling a bit discouraged this week. Of course, we are all living through a pandemic which restricts our movements but we are all in it together and many are suffering way more than me. I got my shots and a booster, I wear a mask in Safeway, I social distance but we are still not 100% safe. Then on Boxing Day it snowed so I couldn’t go out. Shucks.

My son came for a visit and he said “Mum in about 5 years I think you should sell this house and move closer to me.” He means I am old and may need care. Shoot when did that happen?

Sometimes my polio friends jokingly say things like “If you have to get down be sure you have a plan to get up.” I knew what they meant but those words did not apply to me. My polio affected my upper body and I always thought my legs were OK, but this week I got down on the floor to pick up petals from my drooped Christmas tulips and to my horror I realized getting up off the floor was rather a challenge. Damn what’s happening?

Anyway, these things plus other news made me feel a bit down. I didn’t say I was down to my friend Joan on this international call but she brightened my day chatting about family and friends. She said this Covid is just something we have to live through like people in England lived through the war when bombs were dropping destroying building and killing people. They got through it. Well not everyone of course, but when the war was over people went on with their lives and things were good again.

As polio survivors were are good at finding ways to compensate for our weaknesses. We have strong personalities and we find ways to cope.

Joan did not have polio. After our lengthy conversation I can picture her now getting up in the morning coming down stairs to put the coffee on and singing as she potters around in the kitchen. This is probably way better start to the day than turning on the news.

Chin Up.

AN EXCELLENT NEW WEBSITE FOR Personal Health Budget holders

We want to let you know about a website we have helped to build which arose from a research project exploring the use of Personal Health Budgets.

www.mycarebudget.org has been launched it as an online, free, repository of templates and staff policy documents. So far there are over 70 documents that can be downloaded – all of them useful for anyone that holds or is gaining a care budget, especially if it used to employ staff.

All the documents come from people with lived experience of running a care budget. There’s no corporation, health authority or charity running the website.

www.mycarebudget.org is a wiki – so it grows by people adding and editing to it. All the input is checked before being published, so we can add confidence in what appears there. The idea is that you can browse the wiki without creating an account, but you do need to sign up for an account to download or edit the wiki. It works just like Wikipedia.

Verite Reily-Collins

PSN Trustee, Health Journalist and owner of aftercancers.com Will ‘lessons be learned’? Jan 6th 2022

The People’s Covid Inquiry, organised by Keep Our NHS Public, presents their finished report.

Last February, in the absence of a formal public inquiry into the pandemic, the Inquiry, chaired by the human rights barrister Michael Mansfield QC, started looking into all aspects of the government’s handling of the pandemic.

Responding to the recent publication of the Report, Dr Chaand Nagpaul, BMA council chair, said:

“This report makes clear that the NHS went into this pandemic woefully underprepared and underresourced, and the only reason the health service was able to provide care and services at the level it did was because of the unwavering dedication of frontline workers who gave their all – including their lives.

“It is clear that the Government failed to properly plan for a pandemic, with the disastrous lack of PPE supplies leading to an inability to protect frontline staff being exposed to the virus without adequate protection

“Brutal cuts to public health services ……. over the last decade left the UK without adequate testing capacity resulting in the outsourcing of test and trace operations. This wasted £37 billion of taxpayers’ money on an ineffective system that failed to identify the spread of the virus.

KEY FINDINGS INCLUDED:

1. The depleted state of the NHS and other public services prior to the pandemic was a determining factor in poor outcomes and led to avoidable deaths.

2. The government was poorly prepared for the pandemic and moved too slowly, which led to avoidable death.

3. The government adopted the wrong strategy leading to loss of life and growing mistrust in its advice.

4. The government’s poor record on inequalities has put the most vulnerable at risk from illness and death from Covid-19.

5. Misconduct in public office: There has been dismal failure in the face of manifestly obvious risks.

What next?

As patients, it is more important than ever that we ensure we follow guidelines e.g. to wash hands, wear masks, etc., and do our bit to protect ourselves and the NHS. The current lack of funding and staff shortages means the NHS would struggle to handle another pandemic; through no fault of its own, it does not have the resources or manpower to handle another.

To download full report go to : https://36085122-5b58-481e-afa4-a0eb0aaf80ca.usrfiles.com/ ugd/360851_62aeecaeb6944934b6c55d41708d7eeb.pdf

I’ve been let down by Boris Jan 13, 2022 Be careful what you ask for

I learned from an early age 1) you don’t go out with boys who are members of the notorious Oxford Bullingdon Club, and 2) BYOB (Bring your own bottle) was a recipe for disaster – mixing drinks is never a good idea.

After the shenanigans at 10, Downing Street now coming out in the press, it seems the Cabinet Office might learn a lesson from my late teenage years. Watching our Prime Minister deliver his halting, painful apology at the Dispatch Box was cringe-making, and one can only hope when Sue Gray delivers her report that Whitehall takes note, and cleans up its act.

Apparently, 100 people were on the invitation list for the notorious email inviting people to a BYOB party in the No. 10 garden last May, but only 40 turned up. I like to think that is because 60 people had the good sense to turn down such a crass and insensitive invitation. Or was it because they discovered they couldn’t claim for the bottle on expenses?

Mind you, I and thousands of others have only ourselves to blame. We voted Bojo in – me because I thought he was bombastic enough to stand up to the EU bullies; having worked in Brussels I knew what went on there – and wanted out.

Toni Writes …

I thought I’d briefly write about a lesson I learned from nature. It is always therapeutic to be out in nature or even to view nature scenes, isn’t it? It has been proven that doing so improves mental health, reduces anger, fear and can even help reduce blood pressure and the production of stress hormones.

At this time of year we can’t help but marvel at the beauty of the turning leaves, what a treat! Even when the leaves are dying off they produce such beauty for us to enjoy. Thinking about the leaf for a moment, have you ever stopped to consider that it is pretty much a complete food making factory, and not just any kind of factory a completely self -sufficient, self-propagating, silent factory which produces nothing which harms the environment – in fact its waste products improve the environment. Also, when the larger factory (the tree) is ‘decommissioned’ it even goes back to the ground and continues to give by means of the carbon cycle and in time as fuel. If only the large factories of our commercial world could learn from the humble leaf!

Well, I’m popping outside to catch the last of the good weather and collect up the impressive collection of leaves that have appeared in one corner of the garden!

As ever please feel free to drop me a line with your musings, your polio survivors’ experiences, tips that you would like to share with others, something that made you smile this week or absolutely anything else on your mind.

Take care and keep safe!

Toni x

From our readers

“Thank you , I like to receive the very helpful newsletters.”

“Thank you very much for your latest EXCELLENT newsletter!!!”

“I love all your help.”

POLIO SURVIVORS WHO ALSO HAVE PARKINSONS DISEASE

[PSN have 3 members already and know of others around the world – If you have both conditions or PPS and another condition we would love to hear from you]

Polio Place, a service of PHI [Post-Polio Health] International.

Dr. Frederick Maynard, Board of Directors Post-Polio Health International, St. Louis USA.

Ask Dr. Maynard

QUESTION. About a year ago, I was diagnosed with Parkinson’s Disease (PD). Then recently, when providing medical history to a new eye doctor and reporting that I had polio as a child, I learned from him that he and a colleague authored a letter which was published in NEJM (New England Journal of Medicine) about polio and PD. My father also had PD. I learned from the medical record of my hospital admission for polio that the doctor documented my father had polio as a child with some residual in a leg. (I remember his misshapen foot and atrophied leg.) Although Dr. Raymond Roos at the University of Chicago Post-Polio Clinic did not diagnose PPS, I believe that I definitely have some of the late effects. Some of the Parkinsons Disease symptoms are similar, as you may know. I am interested to know what experiences you may have had with others who have had a polio history and now PD. Is there a connection? There can’t be many folks who fit into the category.

ANSWER. There have been many cases of adults with a history of childhood polio developing Parkinson’s Disease.

1. One of the first reports of this is in a 1978 NEJM [Article 1] and may have been co-authored

by the eye doctor you met! A relationship has long been observed between PD and a

history of previous encephalitis due to several different types of viruses that may cause

damage to the brain, particularly to the substantia nigra (SN) which is a small area of the

brainstem that develops a deficiency of dopamine production in patients with PD and is

thought responsible for most PD symptoms.

2. Bodian documented polio virus damage to the SN in autopsy cases during the 1940s,

[Article 2].

3. More recently an MRI study on a child with acute wild polio in India documented changes in

the SN. Therefore, it is certainly plausible that previous polio virus caused encephalomyelitis

can affect the SN and predispose it to later-life degenerative dysfunction resulting in PD.

4. A 2010 epidemiologic report from Denmark actually documented a 2.3 times higher risk of

developing PD among people with a history of polio compared to controls matched for age,

gender and geographic location. [Article 3]

In light of these facts from the medical literature review of PD and polio that your question initiated, I think it is likely more than coincidental that you and your father both developed PD many years after having had childhood polio. I have personally seen a handful of patients with your two diagnoses, and I don’t recall any unusual problems they shared in common. Both conditions can benefit from individualized exercise programs to slow down symptom progression and from rehabilitation strategies to preserve and/or enhance functional capacities.

1, Vincent FM, Myers WG. Poliomyelitis and Parkinsonism. N Engl J Med. 1978;298:688- 689.

To the Editor: The association between viral infection and Parkinson’s disease (PD) has been of interest ever since the relation was suggested between the development of this condition and the pandemic of encephalitis lethargica. This viral origin has been assumed, but has never been proved. Cases of PD complicating infections with the arbor viruses, measles or varicella have been reported,1 although these extrapyramidal syndromes are often transient and not severely disabling. We recently cared for two 69-year-old patients who as children suffered from anterior poliomyelitis (PM) and in whom, as adults, progressive PD developed. These cases prompted us to review . . .

2. Bodian D. Histopathologic basis of clinical findings in poliomyelitis. Am J Med. 1949;6:563-577.

3. Nielsen NM, Rostgaard K et al. JAMA. 2002;287:1650-165

4. Nete Munk Nielsen, MD, PhD; Klaus Rostgaard, MSc; Henrik Hjalgrim, MD, PhD; et al JAMA. 2002;287(13):1650-1651. doi:10.1001/jama.287.13.1645 b.

Abstract. To the Editor: Parkinson disease (PD), which is due to loss of dopaminergic neurons in the zona compacta of the substantia nigra and may involve both genetic and environmental risk factors. Poliovirus is believed to cause neuronal damage in the substantia nigra, and thus a history of poliovirus infection may be associated with an increased risk of PD.

*******************************************************************************

Information from one of my slides from facts from the mentioned article that I am sure if you have not already seen will find interesting.

Polio Viruses I, II and III are enteroviruses that enter through the mouth and go through the gut and in some cases go on to affect the nervous system.

“In 1948 the year in which polio viruses were first cultured specimens from two children with clinical poliomyelitis, yielded a non-polio enterovirus [eponymously called Coxsackie after the neighbourhood in which they lived]

This finding opened a Pandora’s box of some 70 previously undiscovered enteroviruses of which 14 strains were later found to have neurogenic potential equal to that of polio viruses”

The Late Effects of ME. Can they be distinguished from the Post-Polio Syndrome? By Dr. E.G. Dowsett MBChB, Dip Bact. Honorary Consultant Microbiologist Basildon and Thurrock Hospitals NHS Trust. https://www.poliosurvivorsnetwork.org.uk/library/items/show/112

Originally a Presentation to the All Party Group of MPs on ME/PPS on 31st January 2001. Lincolnshire Post-Polio Library Publication February 2001.

PLEASE GET IN TOUCH

IF YOU HAVE BOTH POST POLIO SYNDROME and PARKINSONS, or any other neurological or health condition that makes life more difficult to manage

Help us provide lots of examples of issues and how we overcome them. Things like:-

1. Exercise advice do 30 minutes aerobic exercise daily when that is impossible for you.

2. Do ten repeats three times a day when you can only manage 3 repeats of an action before your polio virus reduced nerve supply muscles run out of oomph PSN do not advise doing nothing because there will always be something you can do if you discuss this with a PPS knowledgeable therapist or health professional. E.g. on land I can do three repeats of an action three times a day if I have enough energy tokens available from everything else I have to do. If I can use our Hot Tub regularly then I can build up to doing a few more repeats of the action because the water supports my body, the warmth relaxes my muscles and allows me to straighten my spine and stretch my limbs and breathe deeper stretching the muscles between my ribs [intercostals] and the water provides resistance to moving joints.

3. Some medications prescribed require you to discuss issues raised that polio survivors might experience – for instance possibly needing a lower dose of sedating or muscle relaxing properties of medication or anaesthetics;

4. Air Mattress offered in hospital or for home that will not work for you because whilst comfortable once you want to move to turn over/get in or out of bed you cannot do it the way you need because you need a harder surface to move on.

Polio Survivors Share Your Experiences

DOING IT OUR WAY. Suggestions from readers needed of phrases to use so that people will listen and understand that we really do have to do actions our way or not at all.

This subject has been referred to in the last few newsletters but still the issues arise and on many polio lists around the world. I am sure that nearly all our readers will have experience of someone not understanding you when you made a statement about how you have to do an action because they do not have any knowledge or experience of how the polio virus has affected our muscles.

For instance you are on electric wheels and need to get through a swing door. Someone holds the door open for you but stands in your way. You take hold of the door and say “Thankyou, I‘ve got it” but they still stand there in the way of your travelling through the gap. They think they are still helping but they are not.. What would you say in a situations like this?

Disabled Toilet issue from Member. Disabled toilet not fitted out as recommended. The pan too low and single rails too high but they did not have time to look for another disabled loo so did what they had to do and then pulled the call button. A man arrived and offered an arm to pull himself up and he explained he cannot pull himself up. A second man arrives who offers another arm to pull him up. Again he explained he could not pull up, only push up. Explained I will think how can do this with their help. Swiveled sideways on the toilet and put one hand on the back of the toilet seat and the other on his disabled wheels. Leant forward and pushed up and they helped him stand and then transfer to his wheelchair. Tip. If you use an electric scooter then always use a handicapped toilet and take the scooter in with you. You will have the seat set at the right height for you and it has helped me get off the toilet quite a few times.

Getting the Stock Answer without realising that might not work for you. You arrive at hospital or are being assessed for equipment at home and are told we will get you an Air Mattress for the bed or Air Cushion for your armchair. However, the way you have to get in and out of a chair and turn over in bed needs a firm mattress that you can push against. Have you had this happen to you and had difficulty getting them to understand you know what you are talking about. Twice we have had to ‘try it in hospital’ and enjoyed demonstrating why the air mattress will not work. Richard also had a full length air cushion put on his Riser/Recliner and demonstrating it did not work they then insisted on trying just an aircushion! We hate the waste of time and money. Any ideas what we say?

Possible explanation of why polio muscles weaken after the stable period. Slide on right has four diagrams. 1. Normal Nerves. 2. How the polio virus has killed off one of the nerves. 3. shows how the muscle fibres that were not killed were able to grow axonally sprouted roots and take over some of those orphaned muscle fibres. 4. Our recovery. How these axonally sprouted roots are dying off. Less nerve supply means weaker muscles. As your muscles become weaker you have to change the way you do actions of daily living and this happens again and again over the years. We are all different and have many varied issues.

We are compiling an article “How we have to do actions of daily living in a different way” The more experiences you can share with us the more information we can include to assist health professionals understand why. Example my left leg from hip to knee is very weak and if I bend my knees more than a couple of inches I collapse to the floor, so I walk stiff legged. However my right leg is weak from knee to toes and that foot is dropped so I need to wear an Ankle Foot Orthosis that keeps my foot up.

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

Polio Survivors Network Presentation on

9.9.2013 for Rotary Lincoln

WHAT IS AND WHAT IS NOT WORKING IN YOUR AREA.

We know services have been affected by Covid and we know there is a huge difference depending on your Post Code but it would help all of us when discussing issues locally and nationally to have more evidence on what is and is not working in your area.

GP Surgery.

AskMyGP is a service that some surgeries offer where you can log in and pick who you want support from and then provide some information and even send a photograph or file. You say how you would like a response and if it is urgent or not. They usually reply within 24 hours. Problem is that GP surgeries have a quota of how many they will take and locally we hear of some that close within fifteen minutes. Thankfully ours has been pretty good but it is not the same as having a face to face appointment now and then.

Ringing your GP surgery has been more difficult in our area since Covid as there are two messages to listen to before you get to the switchboard. I can recite these along with the message having listened to them so many times. Then you get through to the switchboard make your choice and have to wait whilst you are x number in the queue. I clocked just over 12 minutes a couple of months ago. Registered Carers. If you are a Carer have you registered with your GP Surgery as one because it might help getting support for an issue a bit easier because it would cost a lot more if you became ill and could not do the caring hours.

Dental Services Whilst we fully appreciate the difficulties with Covid they have had unless you are in pain there is a long wait of weeks for an appointment for a broken tooth/filling fell out. Does your dental surgery release a set number of emergency appointments each day like ours? Whilst on paper it sounds good, the problem I and other carers locally have been having is the time it takes to ring and hang on till it is your turn when you are trying to get the person you care for medicated, fed, watered, washed and dressed.

Expectations of NHS and Social Services staff advising you can be referred to the other service for support without advising/possibly any idea how long this is likely to take.

REFERRALS TO THE NHS

Have you been told by Social Services to contact your GP or Hospital Consultant to get a referral for an issue you have? Did they seem to be aware how long a referral takes to process and you actually get an assessment appointment? Pre Covid this was a long time. I remember 1995 when I found out that PPS existed and was told I will refer you to a Neurologist. Six weeks later I got an appointment in the post and thought wow, only two months wait. I went to put the date in my diary to realise it was a year and two months time. I have been told that some neurology referrals are now 2 years.

REFERRALS TO SOCIAL SERVICES

Have you been had an injury and been to A&E or an in-patient after surgery and when discharge is being planned been told you can contact Social Services for help and receive things like visits from paid home help, equipment fitted or home adaptions made like grab rails in the bathroom? This is called Reablement. We know from a couple of members in Lincolnshire that most of the items listed on their website were not offered/did not happen. www.lascappp.co.uk/reablement/ This excerpt from the government website www.scie.org.uk/reablement/what-is/principles-of-reablement gives some idea of what should happen:

In England, reablement is seen as a core element of intermediate care that: [a] promotes faster recovery from illness, [b] prevents unnecessary acute hospital admissions and premature admissions to long-term care, [c] supports timely discharge from hospital, [d] maximises independent living and reduces or eliminates the need for an ongoing care package.

From this information, meaningful functional goals and outcomes are developed with the individual, to promote wellbeing, autonomy, independence and choice. It aims to ‘enable people to be and to do what they have reason to value’.

Please write or email Toni Dunlop psnadmin@poliosurvivorsnetwork.org.uk

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.

‘He would have been shocked’ – Dr. Peter Salk, son of polio vaccine’s developer,

speaks on COVID hesitancy. Jesse Bunch writes:

Pittsburgh Post-Gazette 26 December 2021

When the polio vaccine was deemed safe and effective in 1955, newspapers boldly declared an end to one of the period’s most-feared illnesses. But to get to that point, the vaccine went through various trials, including one where over 600,000 children were volunteered by their parents to participate. Dr. Jonas Salk, the developer of the vaccine who spent years perfecting it at the University of Pittsburgh, would even administer a trial dose to his son, Peter. Now 77 and the president of his father’s namesake institute, Dr. Peter Salk told the Post-Gazette in an interview that he sees the public’s widespread willingness to take the polio vaccine as a mark of more innocent times.

One year after the first COVID-19 vaccines were publicly administered, the U.S. population is just 61% fully vaccinated. According to Dr. Salk, a blend of political and cultural influences are to blame for the public’s waning trust in modern medicine. Of how his father, who died in 1995, would react to vaccine hesitancy today, Dr. Salk said “he would have been shocked.”

“It’s such a contrast to the environment he grew up in, and to the experience with those initial vaccines,” Dr. Salk said in a phone interview. In his father’s day, the public tended to trust public health advice. Today, “we’ve got the internet,” he said, which allows ideas to take hold that might seem “totally crazy and bonkers, yet people get caught up in it.” “These things spread, and really that’s a viral illness of its own — the disinformation that riles up these kinds of sentiments,” he added.

Like his father, Dr. Salk is connected to the University of Pittsburgh, where he is a visiting professor of infectious disease and microbiology. Given his expertise, he sees the COVID-19 vaccination effort as a “mixed success.” “Mixed part is the problem,” he explained. “We’re dealing with two things — we’re dealing with the reality of this disease, and we’re dealing with the reality of human beings and their behavior, beliefs, feelings and interactions.” Those beliefs can directly affect people’s decisions about whether to vaccinate their children. According to national KFF polling, 30% of parents with children between the ages of 12 to 17 said their child had received one dose of the COVID vaccine as of late November. In similar polls, just 16% percent of parents of children aged five to 11 said their child had received a dose — and 29% of these parents say they never will. Those figures are a sharp contrast from the polio vaccination effort in 1955, when just one year earlier, 60,000 children caught the disease and 3,000 of them died. By 1961, millions of administered vaccine doses eliminated 97% of cases.“I think the factors coming to my mind are innocence on the one hand, and need,” Dr. Salk said of the polio vaccine effort. “There’s no question, this was horrible, and we wanted our kids protected.”

Still, Dr. Salk mentioned that anti-vaccine sentiments have been around since the first smallpox vaccine centuries ago. In the years before Jonas Salk’s vaccine was approved, the media stoked concern over its use of an inactive, “killed” polio virus, as opposed to a weakened live virus that was accepted at the time to be more effective. Dr. Salk added that racially abusive studies like the Tuskegee experiment, which denied syphilis treatment to a group of Black Americans, also lowered trust among communities. “Roll back several hundred years, and you still have anti-vaxxers that were problematic, but there wasn’t any organized effort,” Dr. Salk said. ”People might have been scared, who knows what distrust of medicine and ease of access. Nevertheless, people believed in science. They believed in the beneficence of the powers that be that were making something available that was going to make a difference.”

While America’s vaccination rate lags behind that of other Western nations, Dr. Salk believes a reversal of the pandemic at home is directly tied to the global vaccination effort. According to New York Times data, 48% of the world’s population has received two doses of a COVID-19 vaccine as of Dec. 19, with the threat of the potentially vaccine-resistant omicron variant stoking fears of more cases and deaths. “We’ve got a virus that’s continuing to evolve. It’s evolving in part because we haven’t risen to meet the needs of the world, as well as our own country, in terms of getting enough blanket immunization protection to help keep new variants from forming,” Dr. Salk said.

He added that while almost half of the world may be vaccinated, distribution in unequal. In Africa, for example, the rate of fully-vaccinated individuals is just 7%. “We need to not be entirely insular in our

thinking,” Dr. Salk said. “Yes, we need to be thinking about our own country, but we also need to be understanding that we’ve got a whole world here.” Looking forward, Dr. Salk said it’s impossible to say whether COVID-19 will be mostly eradicated, like polio, or whether the world must learn to manage it. “We ought to be able to keep on top of this from the scientific side,” he said. “We ought to be able to tailor immunological interventions, vaccines that would keep things at bay in a sense. This virus is always going to be trying to get around our defenses.”

The mRNA technology used in the COVID-19 vaccines, undiscovered during his father’s time, he called “extraordinary.” Approved for the public one year after cases were first discovered, the vaccine’s mRNA technology uses genetic material from the coronavirus to train the body to recognize an attack. While the method was studied by the National Institutes of Health for some time, the COVID-19 vaccine was the first mRNA vaccine used outside of clinical trials. “Basically, pandemics in past centuries over the course of time have made changes in culture, and this is an opportunity to rethink some things,” Dr. Salk said, “for us to make some constructive changes on the deepest levels of our society, that will help to put us in a better position in all respects, not just in terms of infectious diseases.”

Dr. Salk added this kind of thinking was not lost on his father, a man who notably said “our greatest responsibility is to be good ancestors” and refused to patent the polio vaccine, forgoing any profit. “Do we need to continue to depend on the kind of things we as a species have relied on in the past to guide our lives?” Dr. Salk asked, “or is it possible that there can be some catalytic events that help us forge a new, and more constructive, interactive way of moving into the future?”

ORIGINAL SOURCE ARTICLE https://www.post-gazette.com/news/health/2021/12/26/Jonas-Salk-poliovaccine-hesitancy-Peter-Salk/stories/202112200087

Some Covid masks are better than others. I know – I’m the Mask Nerd!

The Guardian Mon 27 Dec 2021

Cloth or surgical masks just don’t cut it – respirators are far more effective, and they’re comfortable too.

• Aaron Collins is a engineer who tests and reviews masks and writes::

As a mechanical engineer with a background in aerosol science, I often wondered why months into the pandemic we were still using cloth masks. People used similar coverings during the Spanish flu pandemic in 1919, more than 100 years ago. I knew better mask technology existed, and people needed to know about it.

So I embarked on a year-long mission to test, document, and review the best masks I could find. This eventually entailed building a mini aerosol laboratory in my bathroom, with scientific instruments capable of measuring particles 1/50,000th the width of a human hair. I have a public database for my results. And a Youtube channel. Over time I began to be known as the Mask Nerd.

With the Omicron variant spreading around the world, the most common question I get is still the most basic: what kind of mask should I be wearing?

If possible, not a cloth or surgical one. These masks are moderately effective at capturing particles coming out of your own mouth – what we engineering nerds call “source control”. But they offer little protection against incoming particles. We call this part – how well the mask protects the wearer – respiratory protection.

A typical cloth mask, while better than nothing, only provides around 30-60% protection to the wearer. Surgical masks, while better at 40-80%, lack a tight fit to the face, resulting in large amounts of leakage around the mask.

Much, much better masks exist. These are sometimes called high-filtration masks, or by the technical name of a filtering facepiece respirator. Such high-performance masks provide significant protection to the wearer at levels that are between five and 10 times that of a cloth mask, while also providing significant protection to others.

In fact, simply wearing a high-filtration mask can buy you significant time if exposed to infectious individuals. Analysis and studies suggest that with cloth or surgical masks, the risk of infection may increase within minutes of being around others with either no mask or low-performing masks. However with the use of well fitting, high-filtration masks, this same level of exposure would now take hours to become dangerous. However, it should be noted that being around a contagious person always carries some risk.

Beyond the actual increased protection from potential exposure, these masks provide a psychological

improvement in day-to-day life, as you no longer need to concern yourself with the fact that those around you may prefer to wear their cloth masks under their chin.

One might assume based on the technical name, “respirator”, that these would be some Darth Vaderstyle headpiece – cumbersome and difficult to breathe in. However it’s quite the opposite. These masks feature a high-tech material called electrostatically charged meltblown polypropylene (quite a mouthful). It features tightly spaced micron-sized fibres – about 1/50th the diameter of a human hair – that have an electrostatic charge applied to them to catch even smaller particles. This material can filter particles that are a just a few nanometres in size.

The most amazing thing, though, is that while providing nearly 99% protection from typical Covid respiratory aerosols, these materials also provide breathability that surpasses that of a typical three-layer cloth mask.

When picking a mask you want to look at three criteria: filtration, comfort and fit. Respirators provide not only the filtration, but comfort from highly breathable materials, and a tight sealing to the face by the design of the mask.

This is what makes respirators such an easy option: you need not worry about anything other than finding one that fits your face. This ensures that all the air flows through the mask, not around it.

In the EU and UK, the FFP2 standard is my recommendation for the general public. It features both earloop and headband varieties, comes in a variety of colours, and typically costs less than a pound. Regulator oversight by various EU and UK government bodies helps to ensure a quality product.

In the US, the common NIOSH N95 is a great option, but it is limited to headbands only. Ear-loop masks are available via other international respirator standards, such as the KF94 (in South Korea) or KN95 (China). However it should be noted that the KN95 is a self-reported test standard, and lacks strict government regulation by China, resulting in many underperforming and often flat-out fake masks. The KF94 is less affected by this, as it is regulated by the Korean equivalent of the FDA.

In my year of testing nearly 100 different masks, I have found over and over again that there are highperforming masks that outperform cloth masks, while still featuring many things people like about their cloth masks.

Mask makers such as Masklab and Posh have created highly decorative designed masks, with bright colours and intricate patterns. Many KF94 masks feature built-in ear-loop adjusters, making for a comfortable, but tight fit. Other mask makers such as 3M – with the 9152 (9105 in the US), a mask that helps the wearer breathe as if there were none on their face, while also providing a full range of motion for the jaw – provide great options for singers and choruses.

With ample supplies of these masks available and a more transmissible variant on our doorstep, there has never been a better time to up your mask game. I encourage people to go out and try a few different varieties, find what they like and what fits their face.

Aside from helping individuals choose the best mask for themselves, I would also encourage governments to increase the domestic production of masks, which would not only create jobs, but also allow regulatory oversight and a supply of effective, safe masks for their citizens. And good masks should be provided free of charge to the many that may not be able to afford them.

Not all masks are created equal, so it’s time to make sure everyone knows about high-filtration masks. These simple, inexpensive and super-effective masks can make a significant difference in our fight against Covid. If you wear a mask, you might as well make it count by wearing the best.

———————————————————————————————

Aaron Collins is a mechanical engineer with a background in aerosol science who tests and reviews masks on his YouTube channel.

ORIGINAL SOURCE ARTICLE

https://www.theguardian.com/commentisfree/2021/dec/27/best-masks-covid-tests-cloth-surgicalrespirators

Opinion: Global development: We can vaccinate 70% of the world against Covid by mid-2022. Here’s how… The Guardian Friday 31 Dec 2021

The WHO’s vaccination goal is achievable – but it will take proper funding, better vaccine distribution and jabs with longer shelf lives. Bipasha van der Zijde writes:

While western countries scramble with their booster rollout to deal with the Omicron wave, only 8.4% of people in low-income countries have had at least one Covid vaccination dose.

The gap in the vaccination rates between high- and low-income countries is wider than ever. We cannot keep turning a blind eye to it.

The vaccines being distributed to African countries under the Covax scheme are often close to expiry and their delivery is ad-hoc at best. In Nigeria, where only 2% of the population is fully vaccinated, they just had to destroy more than a million vaccines that were close to expiring.

Nigeria is not the only country struggling. In Ghana, where 7.4% of the population is vaccinated, Fred OseiSarpong, representative of the World Health Organization said: “The receipt of vaccines with a short shelf life puts excessive pressure on the staff and makes it difficult to adequately plan for effective vaccine delivery.”

These short shelf lives seriously impede the delivery of vaccines to rural areas. We have worked with Benjamin Ongeri, health supply chain specialist with Crown Agents in Kenya – where 7.2% of the population is fully vaccinated – on the delivery of medicine for neglected tropical diseases (NTDs). He says: “There are enormous challenges in getting medicines to the last mile. We know this from years of working with NTDs. It is very hard to reach people who are most affected since they are vulnerable, often marginalised, and live in remote locations with poor roads and infrastructure.”

The same challenges have slowed the uptake of Covid vaccines. And this is exacerbated by the fact that these vaccines require cold (or ultra-cold) chain logistics infrastructure that is often non-existent in these areas.

It also doesn’t help that the vaccines mainly being administered in Africa are those the west has decided not to accept.

“In Ghana, at the initial stage of the vaccine rollout, a high demand was generated,” said Osei-Sarpong. Then there were no vaccines. The break in the rollout affected communication efforts and this gap created the space for misinformation and rumours to thrive. According to the WHO vaccine strategy, published in October, the goal is to have 70% coverage across the world by June 2022. How can this target be achieved?

Will freeing up intellectual property rights, often cited as a possible solution, bridge the widening gap? Neither Osei-Sarpong nor Ongeri believes it is the answer. For a country to start producing vaccines from scratch would be a massive challenge. According to Ongeri: “Countries like Kenya have begun this journey by targeting the final filling of vaccine vials locally which is still quite challenging given the need for state-of-the-art pharmaceutical manufacturing plants that will guarantee safe production with no chance of contamination.”

A lot more will be required in terms of technology transfer and building the expertise needed to fully produce vaccines locally, these cannot be achieved in the short to medium term.

The answer lies in global funding mechanisms such as Covax – provided they can guarantee a pre-planned availability of vaccines. More equitable distribution of the jabs on a structural basis with longer shelf lives will allow for realistic and efficient planning. “With the provision of funds for operations and the availability of vaccines, Ghana will be able to strategise and meet the coverage set by WHO,” says Osei-Sarpong.

Added to common elements such as the lack of sufficient vaccines with adequate shelf life, each country has its own unique set of circumstances that lead to a low vaccination rate. So, with funding made available, each country can tailor their efforts to combat those circumstances and make sure the vaccines can reach the last mile.

In Kenya, Ongeri says they need the resources to undertake door-to-door vaccination campaigns as they do for childhood immunisation. Where there exists a well-functioning delivery system, nations have high vaccine delivery rates. Kenya, for example, has an estimated 80% coverage for childhood vaccines. In Ghana, it’s above 90%. The goal set out by the WHO may not be as unreachable as it appears.

It is not just in the interest of the countries with a shortage of vaccines that urgent action needs to be taken. As the UN secretary-general, António Guterres, said: “None of us is safe until we all are.”

——————————————————————————————— Bipasha van der Zijde is a marketing and communications adviser at KIT Royal Tropical Institute

ORIGINAL SOURCE ARTICLE https://www.theguardian.com/global-development/commentisfree/2021/dec/31/ world-health-organization-who-we-can-vaccinate-the-world-against-covid-by-mid-2022

Linda Poolaw is another strong willed Polio Survivor who has dedicated her life to making a difference. Sadly some of the issues are caused by a lack of knowledge of professionals who have not been taught enough facts and often do not have the required understanding of how people who live their lives differently through culture or disability.

Elder shares stories of life, laughter and American Indian health

Connecticut Post 6 January 2022 Michael Merschel, American Heart Association News, writes:

Linda Poolaw loves telling stories. At 79, the Grand Chief of the Delaware Grand Council of North America has a few. Some are nostalgic, about growing up in rural Oklahoma, the daughter of a Kiowa father and a mother who was Delaware (also known as the Lenape). Some are painful, when she talks about American Indians’ struggles. She tells stories in an Oklahoma twang, skipping from topic to topic. She talks about her father, a renowned photographer. She recalls her armed standoff with the electric company. She shares tales of Bigfoot, whom she’s heard outside her Anadarko home. Her stories often end in laughter. And regularly, they express pride about her work preserving culture and protecting Native Americans’ health. “When you get to be almost 80 years or so, that’s all you’re about anymore is the past,” she said. “And I like talking about the past,” celebrating the things she got to do – and relishing the experience of “being an Indian woman.”

Her stories span the globe. She’s known presidents of elite universities, directors of Smithsonian museums and faith leaders from the remotest parts of Canada. But she said her greatest achievement is the work she did in her home state of Oklahoma, helping researchers understand heart health among what she regularly calls “my people,” before she corrects herself: “They’re not ‘mine.’ They’re ‘people.'”

Native Americans have Type 2 diabetes at rates three times higher than their white counterparts, according to a 2020 report from the American Heart Association. For those who develop heart disease, diabetes is most often to blame. She knows the toll personally. Her mother, father and younger brother all died of heart issues related to diabetes. She also has diabetes and has needed six stents placed in her heart. Because of a rare eye disease, she is nearly blind. But health issues have been with her from the start. So has a determination to do things her way.

In her part of southwestern Oklahoma, the government forced Delaware people, who originally were from the region that is now New York, New Jersey and Pennsylvania, to settle on the north side of the Washita River, along with Wichita and Caddo people. The Comanche, Kiowa and Apache were forced to settle to the south. “My mother was from one side of the river, and my dad was on the other side of the river.” North of the river, people grew their own food. “We had gardens, beautiful gardens, and we ate vegetables, and we learned how to preserve food like that.” The people to the south had traditionally emphasized hunting. “My dad used to say he never ate so many weeds” until after he was married.

Poolaw survived polio as an infant. The brace she had to wear was not an impediment. It became a handy weapon. “All my cousins were afraid of me,” she said, laughing. “Man, that thing hurt when I kicked ’em!”

The medical care she received reflected the problem of being American Indian in an unsympathetic system. When she needed to gain weight, the doctor insisted she drink milk. But “very, very few Indian people drink milk,” Poolaw said, because many are unable to digest it, a condition called lactose intolerance. She faced other challenges. The school she attended was mostly white. “Growing up in an Indian and white world that neither one cared for each other – it was hard.” But she grew into a fun-loving young adult. A lot of the fun centered on alcohol, which would grow into a problem. “I was kind of crazy in the early days,” she said. Under pressure from her parents to clean up her act, she moved to Maine to live with her aunt, Lucy Nicolar, who had achieved fame as a vaudeville performer under the name Princess Watahwaso. It changed her life. “Boy, nobody got in her way,” Poolaw said. “And my mom was like that, to a certain extent.” Lessons from her mother, Winnie, and her aunt took hold. “They taught me how not to be walking around with my head down. Be out there. Be up front.”

She returned to Oklahoma, enrolled in a four-year college and earned her degree. She worked to record native speakers of the Delaware language. She wrote a play about American Indian college students. She made headlines when she and neighbors took up arms to defend their land when a gas and electric company showed up to run power lines across her property in 1986. She lost a lengthy court fight, and federal marshals arrested her. The sight of the power lines across her land angers her to this day.

Other stories have happier outcomes, such as her work to preserve the legacy of her father, Horace. When he died, in 1984, he was not widely known. Linda gathered 2,000 of his negatives and worked at Stanford University in California for a year to archive them. Thanks to that work, he’s now heralded as one of the great photographers of the 20th century and has been celebrated at the National Museum of the American Indian and in exhibits around the country.

She became a spiritual leader who has helped bless and rebury remains uncovered on Ellis Island in New York

PA Polio Survivors Network

Polio Survivors Serving Each Other – PA and Beyond.

Carol Ferg updates the World

**Bruno Bytes for the 4th Quarter, 2021 are Available**

Harbor and elsewhere. But nothing put Linda Poolaw’s skills to use like her quarter-century with the Strong Heart Study. Begun in 1988, Strong Heart was the first major effort to understand Native American heart health. Poolaw was hired to help recruit volunteers to sit for interviews and exams. People had been reluctant. But Poolaw began seeking them out. “I know every pig trail, every hideout, every place in southwest Oklahoma” because she had family from both sides of the river. She also had experiences that put them at ease. She estimates she helped with 1,600 interviews initially. Strong Heart Study co-founder Elisa Lee, now professor emeritus and a former dean of the University of Oklahoma Health Sciences Center in Oklahoma City, said Poolaw’s hard work and enthusiasm contributed greatly to the study’s success. When researchers had questions, Lee said, “very often, we would say, ‘Let’s talk to Linda. See what she thinks.’ … And we followed her advice most of the time.” Over time, the findings reversed longstanding misconceptions about Native Americans and heart health. To date, it has been the basis of more than 450 scientific papers.

Poolaw spent 25 years working for Strong Heart. She loved “working with Indian people, getting to meet them, getting to know their history, getting to know who they are. I was kin to a lot of them. And that was the best part.” The worst part, she said, was losing them. Thanks to the exams, many volunteers learned they had diabetes. Many got help. But too often, someone would spill their heart out to her in an interview, and she’d find their obituary the next week.

Generations raised on government commodities and fast food are paying for it with their health, she said. Although the study helped her learn healthy habits and lose weight, “I was a junk eater at one time. Probably that’s why I have diabetes. But how are you going to educate them? We try. We try, we try, we try. But now – it’s a mess.” She understands the reasons behind the problem.

She recalls hearing a Navajo elder who acknowledged the challenges of eating in a world where your culture has been cut off from its traditional sources of nourishment and forced to adapt to white people’s food and unhealthy government commodities. Food, the elder had said, is about more than avoiding hunger. “It is our life,” Poolaw said. From birth celebrations to funerals, “whatever we do, we eat. I don’t care what meeting we go to, ‘What are we going to eat?’ and ‘Where is there a place to eat?’ – it’s the first thing that we think about. “It’s our life,” Poolaw repeated. When the Navajo woman said that, “I had big tears in my eyes.”

These days, there are other problems as well. “I see things around me that hurt, that make me sad.” And angry. She’s been working to fight methamphetamine abuse, which she said has ravaged her area. She’s chair of a group called the Consortium Against Substance Abuse that is working to build a youth activity center as a way of putting a dent in the problem. It’s discouraging. But she’s long had a way of coping. “I love to laugh,” she said. Her mother used to say, “‘Linda, are you ever serious?’ And I think that’s how I got through life.” Love of laughter is something she’s seen in tribes across the continent, from the Penobscot to the Sioux to the Navajo to Alaska Natives. “I don’t care where you are – if you’re in a group or a church, or if in Walmart, or wherever you are at a powwow or dance or whatever you want. You could hear us laughing. And we don’t go ‘hee-heehee-hee.’ We laugh.” Her theory is: “That’s why we’re still here.”

Lately, Poolaw has been sharing laughs with other Delaware elders. She gathered them to share their memories on film. She tells them why: “Every time I go to a funeral, if it’s somebody my age or older, as they go into the ground, I say, ‘There go some more stories.'” She’s proud of the stories people tell about her. Even from the wild days. “I’m not a saint,” she said. But “everything I did – I’m not ashamed of it.” One story goes back to her Strong Heart days. So many people learned they had diabetes because of her work that some started saying, “Linda Poolaw gave me diabetes.” She didn’t mind taking the blame, as long as it led people to get help. “They were getting good treatment,” she said. “And that was the prize that I got. They started taking care of themselves.”

Original Source Article: www.ctpost.com/news/article/Elder-shares-stories-of-life-laughter-and-16754198.php If you have questions or comments about this story, please email editor@heart.org

Carol Ferg PA Polio Survivors Network Update

**Bruno Bytes for the 4th Quarter, 2021 are Available**

Slow Bellies, Back Support, Blood Sugar, Sleep Apnoea, FDR, Heat Intolerance, Muscle Atrophy, Rotator Cuffs, Social Security Disability Insurance and Muscle Overuse.

Bruno Bytes are published quarterly, through a combined effort

between Dr. Richard Bruno, HD, PhD and the PA Polio Survivors Network.

They are answers to questions posted in the Facebook “Post-Polio Coffee House” Group started in Nov 2014.

Worldwide Online Polio Survivor Support

During the pandemic polio support groups from around the world have been turning to offering digital/virtual support. PA Polio Survivors Network have compiled a very useful webpage. We’ve converted the times for your information (information taken from https://www.papolionetwork.org/ support-group-zoom.html). Not all meetings are each week so please check with the group contact.

The UK times are approximate – please check times and how to access details with the organiser also a handy time zone converter is here https://www.thetimezoneconverter.com/

This list is not exhaustive, other groups may exist in your local areas too.

PayPal donate link:

https://bit.ly/2KzyAyE

DAY	GROUP	UK TIME	GROUP DETAILS
Sunday	Nebraska Polio Survivors	8.00 pm	npsa.org@hotmail.com www.nepolioorg.ipage.com/
Monday	Polio Quebec – adapted Yoga	8.00 pm	monaarsenault@gmail.comassociation@polioquebec.orgwww.polioquebec.org/eng/
Tuesday	Polio Quebec	12.00 midnight	monaarsenault@gmail.comassociation@polioquebec.orgwww.polioquebec.org/eng/
Wednesday	March of Dimes CanadaMarin County Polio Survivors	7.00 pm9.30 pm	bstupar@marchofdimes.cawww.marchofdimes/ca/enca/programs/postpolioFrancineAllen@comcast.net
Thursday	Boca Area Post-Polio SupportMarin County Polio Survivors	6.00 pm9.30 pm	bappg@aol.comwww.postpolio.wordpress.com/FrancineAllen@comcast.net
Friday	Polio Survivors NetworkContact for info	Varies	info@poliosurvivorsnetwork.org.uk
Saturday	Atlanta Post-Polio AssociationLand of the Sky Post-Polio SupportPolio Support Group San Gabriel ValleyWorld-Wide fellowship of Polio Warriors.	7.00 pm5.00 pm6.30 pm11.00 am 5.00 pm	nicolsw@locinc.comappaemail@gmail.comemcanallen@gmail.comhopemle@juno.comwww.facebook.com/1ppssgvwie/peter@poliowarriors.org.www.poliowarriors.org/

Polio Australia (steph@polioaustralia.org.au) please contact for information of events. Polio Survivors Ireland provide a telephone conference (fsw@ppsg.ie)

Post-Polio Health provide ideas for support group

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, 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

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 9/12 [117] JANUARY 2022	Page 20
…because WE’RE STILL HERE!www.post-polio.org
© 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
Cartoon courtesy of Matt Cartoons (Worth following on Twitter: @MattCartoonist)
Did you know…?You are four times more likely to die in a fire if you don’t have a smoke alarm that worksAround half of home fires are caused by cooking accidentsTwo fires a day are started by candlesEvery six days someone dies from a fire caused by a cigaretteAbout two fires a day are started by heaters Faulty electrics (appliances, wiring, overloaded sockets) cause around 6,000 fires in the home across the country every year
Fire Safety Advice www.gov.uk/government/publications/make-your-home-safe-from-fire Fit a smoke alarm on each level of your home Check smoke alarms regularly and test them at least monthly Consider fire blankets, extinguishers and heat alarms Take extra care if you need to leave the kitchen whilst cooking, take pans off the heat or turn themdown to avoid risk Don’t put anything metal in the microwave Try and keep to one plug per socket Make sure an electrical appliance has a British or European safety mark when you buy it Keep electrical appliances clean and in good working order Plan an escape route and make sure everyone knows how to escape Make sure exits are kept clear Keep door and window keys where everyone can find them easily and nearby If you have a lifeline installed, check it regularly to ensure there are no faults on the line Shut all doors possible when going to bed Contact your local fire department to ensure they are aware that they might have difficulty gettingyou out of room e.g. if you use an electric chair, have hoists fitted, use a ventilator etc (we are now registered as a three engine call out—6 fireman instead of two)! Do you know how to isolate your gas and electric supply?

Post Polio Matters Volume 10 Issue 9 Read More »

Post Polio Matters Volume 10 Issue 8

© Polio Survivors Network – Volume 10, Issue 6/12 [115] May 2021	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire Post-Polio Library 100+ articles

Polio Survivors Network Newsletter

August 2021 — Volume 10 Issue 8 of 12 [116] n.b. Volumes 1 to 6 published under the name LincPIN

See Page 10

N E U R O L OG I C A L P H Y S I O T H E R A P I S T

M US C U L OS K E L E T A L P H Y S IO T H E R A P I S T

See page 3

Thank you so much!

Page 2	Contents, Donation acknowledgements
Page 3	Editorial – Hilary Boone
Page 4 – 5	Messages From Our Chair, Masks for Covid-19
Page 6	The front page headline in the Daily Telegraph shouted “NHS made pandemic plan to deny elderly care”
Page 7	Toni Writes, From Our Readers
Page 8 – 9	Polio Survivors Sharing Coffee Chat Tips on Problems and How We Overcame Them
Page 10	What does the word fatigue mean to Polio Survivors with Post-Polio Syndrome?
Page 11	We can manage our fatigue and get much more out of life!
Page 12 – 13	Polio Myths and Half Truths by Dr Julie Silver
Page 14 – 17	Post Polio News (PPN) Has the billion dollar crusade to eradicate polio come to an end?
Page 18	Polio Groups – Online Support
Page 19	Management Committee, Useful Polio Articles
Back page	Coffee Catchup, PayPal Donate, Smile.Amazon, Website

Donations and Charity Incentives Paid(since last newsletter)
Dunham – via PayPal Giving	£70.00
Amazon.Smile	£11.11
CAFBank	£10.00
Anonymous – via PayPal Giving	£1.00
HMRC Gift Aid claim (backdated)	£566.16
Brennand donation	£12.50
Tanfield donation	£20.00
PayPal Giving Fund donation	£17.50
Anonymous – via PayPal Giving	£1.00
Moorhouse donation	£21.00
Mitchell donation	£12.50
Total	£742.77

Editorial by Hilary Boone

Where to start? The sun is out, the washing blowing in the breeze, our cat is stretched out fully in a shady spot and Holly Bradshaw just won a bronze medal at the Olympics in the pole vault.

We are both double vaccinated now so able to go out a bit more but restricted by the number of care hours we can spare out of all the other jobs they have to do for us in our home. Regardless of current advice Richard and I have both decided as we are both clinically extremely vulnerable we will always wear a mask inside any venue [except to actually eat a meal in a decently distanced venue]. We also ask any professionals or tradesmen that have to come inside our home for any reason to wear a mask and so far everyone has had one with them in preparation for this. [See page 5 Simon’s message re masks]

Along with our carers we get boxes of lateral flow tests sent to us regularly and test twice a week and thankfully all been negative so far. However that did not stop one of our carers and all her family catching Covid which meant our other carer and ourselves had to self isolate for ten days from the date we were notified. It was a real tough time for the two of us without any care support and only the very basics to live were all I could manage. It was a much tougher time for our carer and family but thankfully they got through it. It might seem odd to add this as a benefit but the rest of her family now understand what we [she has Fibromyalgia] mean by fatigue.

I googled the word fatigue. First definition was extreme tiredness resulting from mental or physical exertion or illness. I read on and apart from the words chronic fatigue what I was reading was not the sort of fatigue we talk about as survivors of polio virus nerve damage/post polio sequelae. We hear on the news about Covid fatigue so I did some more searching and decided it would be better to move what I learned to page 10. Plus a new contact has just asked me to explain a bit more about pacing and resting and energy tokens, page 11.

Coffee Chats. Despite very few attending we have had some laughs and discussed a wide variety of subjects. See pages 8 and 9. We do understand finding time to do stuff is not easy and if something else comes up we might have to decide to give it a miss or maybe like us sometimes you forget. We can only send reminders if we have an up to date email address for you. Oh boy its nearly 4pm and my brain cannot remember what the letter are for the database rules – polio brain fog! It is not a medical term but it sure makes it easier to accept when it has a name. I googled ‘data base rules’ and it is GDPR.

At Coffee Chats half the hour will be just a general chat and half we will suggest a subject. Please write and suggest days and times that will be more suitable for you and also subjects that you would like added to our list. You can join and leave at any time during the hour. You can also turn off your camera and microphone and nip to the loo, answer the phone, etc without leaving the chat. Just turn back on again soon as you are ready. There is a typed chat facility on the side that you can use to ask questions whilst someone is talking or let us know you are nipping to the loo, I am more than happy to do a trial run for anyone who is a bit nervous about joining in. I have got four systems that different organisations are using: Skype, Microsoft Teams, Zoom and Webex, For one to one there is Facetime, WhatsApp and Instant Messenger which I use to video chat to my daughter now living on Vancouver Island. Having to learn so many different methods I know how helpful a one to one trial can be. Hoping to hear from more of you as these are great ways to keep in touch with each other and also share much more information.

Launch of Our New Website. Toni’s son Jake spent many hours designing options for us to choose from and then produced our chosen design. He is now trading as J Dunlop Design and we wish him success for the future. There are still some more items that we want to add in the near future but, as with all of us, we have to fit this into our available energy tokens.

Chris Salter’s Post Polio News [ppn] item I chose is a much longer article than usual but I found it so interesting and hope you do as well. If you want to receive all the items Chris finds go to www.post-polio.org.uk where you can choose a method. Pages 14 to 17.

MESSAGES FROM OUR CHAIR

Reflections on holistic well-being

I have been reflecting on my dealing with the acceleration of my PPS on my mobility, muscle function and breathing over the last 5 or more years. As a Counselling Psychologist for over 25 years and a disabled person for 65, I have been aware both in my work and life that impairment and disability have reached into and impacted all aspects of life. In my case it was never an option to imagine myself or pass as ‘normal’ and not different, as I was quite obviously physically disabled even as a child. However, the social and economic impact was more subtle and took years to fully sink in, and perhaps more years to accept its full impact.

The medical model

Like many of us, as a child I was indoctrinated into the medical approach. Encouraged to exercise, adapt, push myself, often to the limit, if not beyond, to ignore pain and or discomfort. The rewards were of course that it worked, it helped me achieve the absolute best possible for me. I was praised and rewarded for my efforts and achievements by my ‘medical family’, all those health professionals I spent so much time with. Of course they were equally rewarded and validated by my success. I was the good patient, if not one of their best patients.

There is knowing and knowing

Unlike many polio survivors, when I was 30, I realised ‘intellectually’ at least, my physical abilities, such as they were, would not last and my muscles would age faster with all that implied around independence and I would likely become a wheelchair user again. In other words, I knew at some level PPS was my future even before PPS was a known thing. But knowing isn’t processing and preparing for the psychological and emotional impact when it arrives.

Ageing with a disability

So, I sit here and reflect that having knowledge and information is a help, but it only goes so far. Despite all I have learnt as a Counselling Psychologist for 25 years, I still struggle with the psychological and emotional impact of increasing impairments. The truth is that the skills and abilities offered by a simple medical approach are of limited value or effectiveness on their own especially with long-term conditions such as PPS. The harsh reality is that what’s on offer to an ‘old disabled person’ cannot be compared to when I was ‘a disabled child’ with polio in the 1950s. Added to that is the fact that polio was then TOP DOG of diseases, especially as children were the main patient group. Now polio is way-down in the hierarchy, an almost forgotten illness and virus, of little interest to medical and health professionals of today. Ironic maybe as we see the world devasted again by a new virus and all the mental and physical long-term impacts that will bring over the coming decades.

The missing half of healthcare

Fixing impairments, making adaptions and using coping strategies only go so far. It doesn’t address the years of physical and psychological stress managing long term conditions such as PPS or the toll navigating society takes. We are often in denial ourselves, and so are ill equipped to manage the process of living well with PPS as we age. When I say our ‘own denial’ I don’t just mean polio survivors, though we are probably experts at this. Many disabled people especially those who work at not being seen as disabled people, can be heard colluding with this denial and worse still being admired for phrases like ‘I don’t think of myself as disabled’ or ‘my disability hasn’t really affected me much’ or perhaps ‘I have overcome my disability’. The reality is that for so many of us it has affected us every single day but we have learnt to, become conditioned or made ourselves ignore it whenever possible. By doing so we are rewarded by fitting in, up to a point of course, but it can catch up with you.

On both sides of the fence

I have spent my working life on both sides of the fence, as a patient and as a clinician. I realise there is a paucity of psychologically appropriate support. I have tried to lobby for psychologists and psychotherapists to be involved in the well-being of disabled people. It should be there from the day one, when we are born a member of the club or when we become a disabled person at some later stage. Why is it not seen as a priority? Why fix the body only? Surely this is such a myopic reductionist approach to what being healthy human is about and so far from an holistic healthcare system.

Psychology and psychotherapy

Even when support is offered it is almost always short-term and often with a restrictive cognitive model such as CBT (cognitive behavioural therapy) and almost never incorporates the social model or with wider integrative approach. These approaches are delivered with no regard to the emotional complexities and diverse experiences of being a disabled person in a non-disabled world. Psychologists, psychotherapists and counsellors are poorly trained in chronic illness and physical disability and have little clinical experience of working with us. No wonder so few of us want or have good experiences with psychological services even if they are available to us. Maybe we have been indoctrinated into always expecting a medical solution, and yes, even I am sometimes guilty of this.

I tried to think of a medical analogy to convey the central role of an experienced counselling psychologist or psychotherapist being integral in the team and ongoing management. The best I can come up with is that under recognised yet vital person, the anaesthetist. Whilst the consultant surgeon is often the star turn and ‘fixes’ you with their almost magic skills and sophisticated treatments, it is the anaesthetist who watches, monitors and manages your vital signs, ensures you have the breath of life. The anaesthetist manages your pain and ultimately keeps you alive. Perhaps a well-trained, experienced empathic psychologist or psychotherapist should be as integral and vital to the ongoing well-being of those of us who live life as disabled people, such as polio and PPS, as the anaesthetist.

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc (Hon), BA Chartered Psychologist. HCPC Registered Counselling Psychologist

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

Masks for Covid-19

Views around masks are rather muddied by politics rather than relying on research. Equally the messaging about masks was wrong in the early days and also the lack of supply was perhaps the reason government played down their role so as to prioritise the supply to the NHS.

FFP3 Research, which is still in peer review, suggests that the FFP3 masks are the best for both protecting the wearer and also others. These are not generally worn outside medical facilities and are the most expensive. Personally, with my reduced breathing respiratory muscles I find them (the one with valves) more comfortable despite the price, but the danger is that these can protect the wearer more than protecting both the wearer and others. Beware if you buy these that there are a lot of ‘dodgy’ ones around so thoroughly check before you buy and also the valve filters are the critical.

FFP2 similar to N95 For most people these provide excellent protection for the wearer and others (WHO say it filters about 94-95%). They don’t have the same highest-level filter but are close fitting so can be more sweaty and perhaps there is more resistance to the breathing. But for most non respiratory people they are probably the most cost effective and efficient

FFP1 and the ordinary surgical masks These are probably the more basic and offer some protection. They are probably better at protecting others from you than protecting you from others who have Covid.

Home made face coverings/masks These of course vary and to be honest you need to just follow the guidelines around what to use and how to wear them. Its not easy to be define as they are all different but they probably are better than the ordinary surgical mask if made and worn correctly.

For a more detailed description of the various masks try: https://www.pixartprinting.co.uk/blog/kn95-n95- ffp2-masks-guide/

Simon Parritt, C.Psychol, AFBPsS, MSc, BSc (Hon), BA Chartered Psychologist. HCPC Registered Counselling Psychologist

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

The front page headline in the Daily Telegraph shouted “NHS made pandemic plan to deny elderly care”

Of course, the NHS denied they meant to throw us oldies on the scrap heap, but there is no gainsaying in the past year over 40,000 residents in care homes died of Covid. The figure confirmed my suspicions; once we reach the age of 60, the NHS regard us as a nuisance and a burden costing the health service money.

Forget about the fact that most of us have been contributing for years without costing the NHS a penny, surely we are entitled to payback? I reminded one receptionist that I hadn’t been near the surgery for years, her reply was “but now you are making use of the NHS”, as though that wasn’t on.

Chillingly, local hospital transport now asks me “do you have a DNR order?” (Do Not Resuscitate). The thought that if I have an ‘incident’ in an ambulance, the crew will have been told not to bother to resuscitate me is chilling. Getting onto an ambulance I now make absolutely sure I am as nice as I can be – just in case.

I HATE it when outpatients receptionists ask in a loud voice “what’s your date of birth?” instead of asking our name, I don’t know. But the moment I mention it, I am immediately shoved in the ‘over-60’ pile. The NHS thinks of us a number, and if we are aged, doesn’t expect us to improve as we mature, unlike wine.

I often wonder what happens when The Queen sees a doctor, and defy any medic to place Her Majesty in an elderly slot. HM is walking proof that you don’t lose your marbles as you get older, whatever others think.

Sadly, there is now a double burden on the aged; conditions such as cataracts, hip and knee replacements, etc. are suffering massive delays for operations, so many elderly patients are raiding their pension pot to pay for treatment privately to get relief from pain. Just because we are ‘over 60’. why should the NHS assume we don’t want to enjoy sport (albeit in a gentle form) or be stuck at home inside four walls, because it is too much of an effort to go for a walk when we are waiting for the NHS to repaired our joints?

However, most of us haven’t lost our sense of humour, and thanks to Dennis Reed of Silver Voices some of us have recently had a lot of fun at the BBC’s expense. That corporation has got far too big for its boots, and when it decided to pay over a £1 million of its licence fee for a potato crisp personality’s fee, and then re-introduce charges for the over 75s, Dennis rallied us and gave us legal ways to – as he put it – Gum Up the Works.

Little things gave us a chuckle, like ways we could legitimately challenge the way demands were sent out. This was so successful that currently there is an impasse. The BBC has had to reign in Crapita (sorry – Private Eye’s name is so apt for Capita) and its rottweilers are back in their kennels. When I was legitimately entitled to a free licence, Crapita harried me so often that I passed the correspondence on to my MP, Greg Hands, who apparently had a section dealing with this.

So now 3/4 million over 75s have yet to pay their licence fee – but the BBC must be thinking of making cuts as one only has to look at their toned-down coverage of the Olympics. All those staff that used to float in on the massive gravy train have had to stay at home!

To join in the fun, go to https://silvervoices.co.uk/

Verité Reily Collins www.aftercancers.com Email: veritegreenbee@gmail.com

Excerpt from About Me. “Probably the naughtiest girl in school, I avoided being expelled by the skin of my teeth, although a wonderful teacher at the English Girls High School in Istanbul, Miss Locke, inspired my love of travel and history. I had ended up there when Daddy was ‘lent’ to the Turkish Navy by the Royal Navy. Much to the relief of teachers I left when I was 15 to be flown home for treatment for Polio, and was lucky enough to be treated when the NHS really was world class.

Toni Writes …

How are you doing? What have you been keeping busy with? I have been decluttering, I do wonder just how we manage to accumulate so much especially as I am not the sentimental or keep it ‘just in case’ type of person. I am doing our place in earnest as my mother-in-law needs to downsize in the next few months and she certainly does like to hang on to everything!

As I was decluttering, I came across a few ways to donate of unwanted items. I prefer to give things to charity or to others that are great at upcycling than for them to end up in landfill.

CLOTHES: Send your clothes to Thrift+ to sell. They send you a prepaid postage bag, you fill it with clothes, send it back and your items are sold. Thrift+ take a third of the money raised, you get a third and a other third is donated to your favourite charity! https://thrift.plus/pages/ re-sell

CAR: Donate your car through Giveacar. They will collect it from you too. I checked but I didn’t find a car to donate at this time. An interesting idea though! https://giveacar.co.uk

ANYTHING AND EVERYTHING: Another way to turn your clutter into funds is to use eBay for charity. You can donate 10% or more of each item you sell. https://www.charity.ebay.co.uk/ charity/Polio-Survivors-Network/109876

Drop me a line with your tips, or anything on your mind. Take care and keep safe!

Toni x

From our readers

“Really enjoyed the session. Lots of useful information. Thanks.” – Virtual Coffee Catchup attendee

“Your fine 115th newsletter one of the best I’ve seen these last 29 years I have followed your PPSG! Keep up this great work in the UK!”

“Always pleased to receive the newsletter, greatly appreciated.”

“I wanted to thank you…for giving me strength to open up about my polio.”

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

Polio Survivors Sharing Coffee Chat Tips on Problems and How We Overcame Them

N.B. Companies and items mentioned are the views of the member regarding an aid/equipment/company that they has helped them manage their Polio Life.

Moving about on a Bed What do you use to get onto and off and turn over a bed?

Whilst at a PPS Conference years ago I was asked to join some of the health professionals to answer questions from the audience. I asked the audience ‘How do you roll over in bed?’ Answers were slow in coming and many agreed that they would have to go back to the bedroom and do this before they could answer. Then I asked if it was as easy in their hotel room and many said no because there was no bedside table, or handle on the mattress as at home.

Have you gone into hospital and been given a bed with an air mattress and found it made you more disabled because you could not move about on the bed the same way as at home? Both Richard and I ask for a normal mattress and explain why. Sadly the lack of understanding of how varied the ways polio survivors perform their actions of daily living can make this a difficult conversation. Back some years we had to agree for Richard to try one and see how much better it would be. I did enjoy demonstrating the next day that Richard was now unable to move about on the bed or get off it to transfer to the commode.

Turning over in bed has been a problem for over 25 years. Firstly I would hold the handle of the mattress, bounce three times on the bed, grab my nightie and turn. For 7 years now I have had a Snoozle Sheet [www.thesnoozle.com] which is a metre square tube of material shiny on the inside. As you turn one surface slides over the other. I also have an under mattress handle – travel one so that I can move it from bed to bed and take with me when I go away. [Bedside econorail from www.completecareshop.co.uk]

Richard who has Parkinsons as well as PPS has varied movement ability throughout the 24 hours. He has times he can just sit up straight in bed and others where he is stiff like a tree trunk and we have a Vendlet V5S bed turning system fitted to the Profile Bed, www.vendlet.com

Simply a rail either side of the bed that can be raised with a very wide sheet velcroed to each rail. To transfer the rails are at their lowest below the level of the profile bed mattress so that he can transfer from wheelchair to bed and then scoot into position. To turn him, we move the covers so they do not get trapped under him. Raise one rail and using the controls turn him till he is lying on his side. Physically all carer has to do is to make sure arms are comfortable, cover him with the covers he prefers and we unroll the sheet a bit from the other rail so he can get his hand down into the gap to help him turn when he starts to move again.

Bathlifts used in other areas of the home

One of our members told us on the Coffee Chat about a polio survivor who has three bathlifts in his home. One as normal in the bath but another in the bedroom so he can transfer from side of the bed to the floor so that he can get his spinal jacket on the way he has to do it and a third one downstairs.

Another member has put one on a lockable wheeled frame by the side of their hot tub as a second way of getting in and out in an emergency.

Masks

The discussion was mostly on how little information we had received as to which masks would be best for those medically compromised. Look on the gov.uk website and there are pages and pages of technically worded information.

The discussion continued as to which we were using. The blue outside white inside masks most often seen and handed out or the more expensive masks the KN95, N95, FFP2 masks which we learned are all the same just different numbers from country of origin.

Simon Parritt, our chair, has added an extra message on masks for Covid to explain more about this. See page 5

Remember you can ask questions at any time to be included in Coffee Chats, Newsletter etc.

Driving into a vehicle in an electric wheelchair using a wheelchair docking system

For people who don’t want to hassle of dealing with a 4-point tie down system, a docking device may be the answer. Docking systems are used by many people in wheelchairs who drive their own vehicle from their chair. Wheelchair passengers can also use a docking system. The system is basically a rectangular metal device that is mounted to the floor. It has a springloaded electronic hook that grabs on to a metal bolt (or pin) that is mounted to the bottom of the wheelchair. When the bolt is rolled into the docking device, the hook automatically closes around it, keeping the wheelchair in place. Wheelchair seatbelts are then used along with the docking system for additional securement. Docking systems generally include a push button electronic control module mounted on or near the dashboard notifying the driver and passengers when the wheelchair is locked down properly. The control module or quick release button on the docking device is then used to unlock the docking mechanism when reaching your destination.

Motability Vehicles

Member reports that to save time they asked the Motability company allocated to them to bring the vehicle they suggested to their Wheelchair Services so they could borrow the wheelchair that they were going to be supplied with for the assessment. This was agreed and after loading electric wheels a short test drive was provided. All seemed ok so they went ahead. Covid delayed delivery and then the order to Stay Home meant it was only used for Medical Appointments. Once able to get out more they found four issues that they had not anticipated and regret not being assessed at a Motability Centre.

“I know when I was told I would need to have an assessment I thought it would be just like having a driving test but I couldn’t have been more wrong. Mobility centres are staffed by occupational therapists (OTs) and approved driving instructors ADI’s and their aim is to help disabled people wherever possible to remain mobile.”

Members reported good service from:-

Brig-Ayd Controls offering expert supply and installation of wheelchair and scooter hoists, hand controls and left foot accelerators for a wide range of vehicles, plus other disabled driving aids. www.brig-aydcontrols.co.uk

CJ Conversions Motability Registered Installer in Lincoln have given us great service for about ten of the 18 years we had our Kia Sedona and needed a hoist. The hoist had two different lifting bars, one for the electric wheelchair and another for the electric scooter. www.cjconversions.co.uk

Monarch Mobility and the Atlas 4 Folding Mobility Scooter Hoist used by another of our members on the Coffee Chat, www.monarchmobility.com

Medical Information in case of Emergency

A senior lecturer in paramedic science, School of Health and Social Care, University of Lincoln responds that the following is taught to students when checking for medical conditions alerts in emergencies. “There are products available labelled as ‘medi alerts’ that can be worn like a piece of jewellery. We teach students to look for these. Example www.medicalert.org.uk/ products/ Alternatively, in the home there have been local schemes in the past such as “message in a bottle” (e.g. https://www.peoplefirstinfo.org.uk/staying-safe/safety-in-the-home/ message-in-a-bottle-scheme/) or where a front door has a sticker and this alerts the clinician to look in the fridge (yes, that’s where they would be kept!!) to find the information.

In today’s world of course there are now shared records that can be accessed electronically but, in an emergency, you can’t beat paper and pen! The trick of course is to keep the information up to date! Within the programme a couple of modules touch on the legalities surround DNAR, ADRT forms and all guidance would instruct clinicians, regardless of profession, to follow care plans where they are in place. Where a care plan involves certain medications and the patients meds are available along with prescription advice then it is legal for someone to deliver the medication. They must be both competent with the method of the delivery and it must be within their scope of practice. We see this a lot in end of life care and also for patients who suffer specific repeated events such as seizures.

What does the word fatigue mean to Polio Survivors with Post-Polio Syndrome?

How often have you had difficulty explaining to professionals, family and friends what fatigue means to you?

Fatigue is defined as extreme tiredness resulting from mental or physical exertion or illness. I am smiling as just below this was another definition example, “the nails have become rusted through or fatigued”.

I decided to look further at other examples and am really surprised at the definitions, meanings and examples listed. Apart from the words chronic fatigue what I was reading was not the sort of fatigue we talk about as survivors of polio virus nerve damage with post polio sequelae. We hear on the news about Covid fatigue. I found the following that I thought was worth including in this newsletter.

YOUR COVID RECOVERY – Excerpts

What is Fatigue? We are all familiar with the feeling of fatigue after exercise or a long period of concentration. Sometimes, however, fatigue can be felt in a way that does not seem normal. Despite resting, and a good night’s sleep, fatigue occurs after minimal effort, is prolonged and limits your usual activity. It can leave people feeling dull and finding it difficult to concentrate and recall memories.

Fatigue is very common after viral infections, such as COVID and normally it settles after 2 or 3 weeks. However, in some people it can linger for weeks or months.

What can I do about Fatigue?

Recognise that the fatigue is real and be kind to yourself. Explain to your family, friends, and colleagues at work the impact the fatigue is having. Because fatigue is invisible, sometimes it is not properly understood. Until it is experienced it can be hard to understand the impact of fatigue and how debilitating it can be.

Plan, Prioritise and Delegate

• Plan each day in advance so that you can do what you need, and consider what can be delegated to

other people. Build a regular routine, and try to avoid ‘boom and bust’ behaviour, where you are very

active on ‘good’ days and then feel exhausted the following day. An activity diary can help with this.

• Prioritise. You can also decide which activities that you are doing are most important to you. If this

is a task which is very important do it when you have the most energy. If they are not important, but

‘have to be done’ can you delegate them?

• Delegate. Think about areas where you can save energy, for example, online shopping rather than a

trip to the supermarket, or cooking at the weekend for the week ahead when you are busy. Finally,

make sure you are doing some things which are enjoyable, such activities can be energising.

www.yourcovidrecovery.nhs.uk/managing-the-effects/effects-on-your-body/fatigue/

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

Polio Survivors have to take this further due to the fact that the polio virus killed some of our muscles nerves. Our marvellous recovery system where the nerves that did not die growing extra axonal sprouts to take over some of those killed muscles fibres and one explanation that these extra nerves are now dying off through age/overuse. Plus the NHS time constrained examinations where our polio muscles are often only tested a single time and most are not aware of our reduced available resting muscle.

Page 11

We can manage our fatigue and get much more out of life!

Thousands of us that pace and rest all our activities and use any aid or assistive device plus the help of others for part or all of energy sapping tasks acknowledge this was not easy to read or accept at first. However, the most often made comments to PPS Groups is “I wish I had listened to you earlier because I now have less pain and fatigue and get more out of life.”

You can see from the right hand chart on the bottom of previous page that we do not have as much resting muscle to take over when the part of the muscle being used needs a rest. If we do a bit of an action and then rest we allow the working part of our muscle to rest and recover. Pace and Rest.

Aids and Equipment and Accepting Help. In 1996 I had the following conversation with a rehabilitation registrar. “Who wrote this article in the Linc-Pin?” I proudly told him I had written it and his response “then why are you not taking your own advice?” I replied, “Oh, I am not there yet” and he said, “Yes you are and you have been for some years.” March 16th 1997, my 50th Birthday my first electric scooter was delivered and I had to ride it up and down the street to test it out and I felt awful. However, I can tell you that in the last 24 years and thousands of miles my scooters have been to castles, museums, state parks, PPS conferences, antique fairs, local high street, etc. all impossible without electric wheels. Gradually over the years I have added many more energy saving items . For over ten years through direct payments have employed carers for some hours. The first time I saw Richards male carer take my undies out of the dryer I nearly died. It took a year of getting to know him before I told him. He knew us well by then and replied “I have a wife and daughter and know all about knickers mind you yours are twice the size of theirs”. I burst out laughing the best medicine ever and still chuckle to this day when telling this story.

Using Energy Tokens to plan your life. Sadly there is no chart to share because this is individual to each person and it changes as the years go by. The first task is to write down all the activities that you do on an average day at home. This includes turning over in bed, getting in and out of bed, all activities in the bathroom, dressing, preparing food, eating and drinking, cleaning, and some basic exercise etc.

Now you have your list you have £10.00 worth of Energy tokens to share amongst those tasks. It can take a few weeks to tweak it but you soon have a rough idea how many pence you can allow for each task. Now more lists for all the possible extras, GP, Dentist and other medical appointments. Shopping, Family events and anything that you do extra to your average day list. These will also need allocating energy tokens. Unless you have allowed tokens for extra events In your main list then any amount needed over and above the £10.00 MUST come from not doing something the day/days before and doing less the day/ days afterwards.

Look at all the activities, think what aids, assistive devices, other ways of doing the action, getting a bit of help could reduce costs allowing you to do more of what you enjoy. We have a bathlift so we can lower it and wash our legs and feet, impossible sitting on a shower stool. We use flannels [wash rags USA] that as little towels to roughly dry hair etc. Next wrap ourselves in a large bath towel and go and sit in the lounge on electric rise/recline chair with a drink and drip dry.

Remember it is either do this or that not both. Overdoing brings more pain and fatigue. Life is more enjoyable if you spend your tokens doing things you really enjoy and want to do. The following chart is just a rough idea how to fit in going to a hospital appointment on Friday and a family event on Sunday.

Time	Thursday	Friday	Saturday	Sunday
7am to 9am	Get up and wash	Get up. Only wash the bit the doctors are going to look at!	Ger up and wash	Late morning
9am to 11am	Items for hosp appt	Rest	Lazy morning	Dressed and rest
11am to 1pm	Lazy day	Be driven to hosp appt and use elec wheels at hospital	Local shopping	Driven to event with electric wheels
1pm to 3pm	Lazy day	Have the hospital tests	Feet up at home	Family lunch
3pm to 5pm	Lazy day	See consultant back to car	Prepare for tomorrow	Rest in chair & chat
5pm to 7pm	Heat prepared meal	Driven home/stop eat in car	Heat prepared meal	Family tea
7pm to 9pm	Bath for hosp tomorrow	Go to bed and watch tv	Shower drip dry	Driven home
9pm to 11pm	Bed and sleep early	Go to sleep early	Watch TV in bed	Watch TV in bed
Token Total	£ 7.00	£ 15.00	£ 8.00	£ 14.00

Polio Myths and Half Truths by Dr Julie Silver

Julie K. Silver, MD, Medical Director, International Rehabilitation Center for Polio, Spaulding Rehabilitation Hospital, Framingham, Massachusetts Julie K. Silver, MD, is the medical director of the International Rehabilitation Center for Polio at Spaulding Rehabilitation Hospital in Massachusetts (www.polioclinic.org). She is also an Assistant Professor at Harvard Medical School and has published several books including the book Post-Polio Syndrome: A Guide for Polio Survivors and Their Families (Yale University Press). Dr. Silver’s mother, uncle and grandfather all contracted polio in the summer of 1946. During her medical training, she worked with Lauro Halstead, MD, and they have worked together on polio-related projects

Myth #1: Some medications are bad for polio survivors and should be avoided at all costs!

Some medications are bad for polio survivors and should be avoided at all costs. Many polio survivors have read that some medication classes are bad for them – the most common I am asked about is probably the “statins” (e.g., fluvastatin, simvastatin, etc.) These are medications that end in statin and are used to lower cholesterol levels. The fear is that these drugs will cause muscle pain or weakness (a known side effect) and compound the weakness that a polio survivor is already experiencing.

Heart disease is the leading cause of death in men and women as they age. Stroke is a leading cause of further disability. Both conditions are directly linked with high cholesterol levels and “statin” drugs that reduce cholesterol are critical for many people in order to lower their risk of stroke and heart attack. But, why give a drug to a polio survivor that may cause him or her to become weaker? The answer is because it may save a life.

It is important to understand what the actual risk may be of developing musculoskeletal problems if you take a particular medication. For example, the drug Zocor (simvastatin) underwent fairly vigorous testing prior to it being approved by the Federal Drug Administration (FDA). More than 2400 people were tested on the medication.1 No one in the study knew if they were actually taking the drug (it was blinded), and the results showed that more people complained of muscular side effects when taking a sugar pill (1.3%) than when taking the actual medication (1.2%). The point here is that even if you do take simvastatin, there is nearly a 99% chance that you won’t develop muscular side effects.

So, my advice always goes like this: talk to your doctor – the one who prescribed the medication in the first place. Ask him or her whether it would be okay for you to stop the medication for a period of time to see whether it is indeed causing you to feel weaker or more pain or whatever you are concerned about. A “drug holiday” is a good way to see whether you are actually experiencing side effects from a medication.

When you go off the medication, pay attention to whether you feel any different. If you do not, that medication is probably fine for you. Keep in mind that every drug has a huge list of potential side effects. This does not mean that you will experience them – it just means that in studies that were done on the drug, some people had these side effects.

At the same time, ask your doctor whether there are other alternatives that you can try – including medications and lifestyle changes. For example, exercise, smoking cessation and weight loss have all been associated with reducing cholesterol levels. Although I used the example of the statin class of medications, this advice applies to any medication that concerns you.

Myth #2: Polio survivors should rest, rest, rest!

This is another myth that has some truth to it, but taken to an extreme is dangerous. All bodies become extremely deconditioned without the constant use of the muscles. Even polio-weakened muscles can become weaker from disuse. Not using muscles results in weakness, and diminished endurance and cardiac fitness. If you are at complete bedrest, your muscles will lose 10- 15% of their strength per week.2 If you stay in bed for a month, you will have lost about half your strength. Muscles need to be contracted regularly in order for them to maintain their size and strength.

On the other hand, it is important to note that the opposite of disuse – overuse – can also cause further weakness in polio survivors. So, the trick is to balance your daily activities with rest and also do an appropriate exercise program.

This sounds easier than it is, and I always recommend that people talk to healthcare professionals who are experienced in prescribing exercise programs for polio survivors. But some simple suggestions are as follows:

▪ Nearly everyone, including polio survivors, should exercise regularly.

▪ Exercise is not what you do in your daily activities, but rather is a set program that has a time limit and a certain number of exercises with a particular amount of weight or resistance that is used.

▪ Doing the same exercises over and over may lead to further weakness. Instead, exercises should be alternated regularly so all of the muscle groups are used and no one muscle group is overused. The concept of cross-training that is widely accepted in sports medicine is what we promote at our center.

▪ Include some strengthening, range-of-motion, and aerobic exercises to be sure you maintain optimal fitness.

▪ If you experience pain or undue fatigue, check with your doctor. This generally means that what you are doing needs to be modified or even stopped altogether roughout her career.

Myth #3: Swimming is good for you.

If you love to swim, do it regularly, and have easy and safe access to a pool, then swimming probably is good for you and you should continue to do it. However, if you do not swim for exercise and you feel guilty about it, then let me relieve you of your guilt – because swimming can be dangerous for your health.

Famous polio survivor, Franklin Delano Roosevelt, loved the buoyancy of water and the freedom it gave him to move his paralyzed body. The fact that much of his swimming was done in the beautiful Warm Springs, Georgia, only added to the benefits he received from this exercise. But swimming is not for everyone and there are some good reasons why you might not want to swim.

First, getting ready to go swimming is a lot of work. For most people swimming involves many or all of the following steps:

Of the 13 steps I listed, only one of them involves the “exercise” of swimming. But, in order to get that exercise, you must do at least 12 other things that may just serve to wear you out. So, although I am a huge advocate of exercise that promotes cardiovascular fitness for polio survivors (keep in mind that postpolio syndrome is disabling, but cardiovascular disease kills more middle aged and older people than any other condition), swimming is a lot of work.

Second, you may be at risk to fall as you do these 13 steps. In one study, 46% of polio survivors noted that walking outdoors was difficult.3 In another study, 82% of polio survivors reported increasing difficulty with walking.4 Yet another study revealed that 64% of survivors reported falling at least once within the previous year and of this same group, 35% reported they had a history of at least one fracture due to a fall.5 Given these statistics, the number of steps it requires to go swimming (often both literally and figuratively) and the likelihood that there may be some slippery surfaces in the locker room or around the pool, it is easy to see how someone might fall and sustain a serious injury while going swimming.

I think it is really important to not discourage anyone from exercising in a safe manner and swimming can be a great exercise for polio survivors. But, it is not a great exercise for ALL polio survivors. If you love to swim and you can do it safely, then definitely continue. But, if you find yourself overly fatigued after swimming, or if you think you are at risk to fall and have a serious injury then consider other exercise options.

References

1. Physicians’ Desk Reference. (2002). (pp. 2222-2223). Montvale, NJ: Medical Economics Company, Inc.

2. 2. Rehabilitation Medicine Principles and Practice. (1993). DeLisa, J., & Gans, B. (Eds.) (p. 689). Philadelphia,

PA: J.B. Lippincott Company.

3. 3. Nollet, F., Beelen, A., Prins, M.H., et al. (1999). Disability and functional assessment in former polio patients

with and without post-polio syndrome. Archives of Physical Medicine & Rehabilitation 80, 136-143.

4. 4. Halstead, L.S., & Rossi, C.D. (1985). New problems in old polio patients: Result of survey of 539

polio survivors. Orthopedics 8, 845-850.

5. 5. Silver, J.K., & Aiello, D.D. (2000). Abstract: Risk of falls in survivors of poliomyelitis. Archives of

Physical Medicine & Rehabilitation 81, 1272

• Locate your bathing suit and towel.

• Go from your house to your car.

• Drive to the pool.

• Go from the parking lot to the locker room.

• Change into your bathing suit.

• Go from the locker room to the pool.

• Swim.

• Go from the pool to the locker room.

• Change out of your bathing suit.

• Go from the locker room to your car.

• Drive your car home.

• Go from your car to your house.

• Hang your bathing suit and towel up to dry.

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.

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Has the billion dollar crusade to eradicate polio come to an end? | The BMJ.

BMJ 2021; 374 doi: https://doi.org/10.1136/bmj.n1818 (Published 29 July 2021)

The polio juggernaut, which has skidded past eradication deadline after deadline, seems to have finally run out of fuel, reports Robert Fortner.

As Covid-19 overran the world, the extensive surveillance and response capacities of the polio eradication programme pivoted towards this new threat. Now, in a surprise move by the World Health Organization, the reorientation looks permanent—perhaps ending a decades long, multibillion dollar crusade engineered by some of the most powerful actors in global health. WHO’s reordering of priorities may also point to a reassertion of its primacy in setting and administering global public health policy.

Since the effort began in 1988 the Global Polio Eradication Initiative (Box 1) has pushed polio to near annihilation, pushing down cases by 99.99%. Perhaps tens of millions of people walking today can thank the GPEI. 1Two of the three serotypes of wild poliovirus have been declared eradicated worldwide, leaving only type 1, which has been cornered in just two countries, Afghanistan and Pakistan, which had a total of 140 cases last year.

However, the live oral vaccine used to accomplish these feats is double edged: the attenuated vaccine strains can revert to virulence, circulate, and paralyse. Afghanistan and Pakistan now report more cases of paralysis from vaccine derived polio than from the wild virus, and a massive outbreak of vaccine derived infections engulfs much of Africa, with more than 1000 children paralysed last year.2

The polio juggernaut skidded past its eradication deadline of 2000, the first in a series of such cycles. The GPEI has been perched, exhaustingly and expensively, at the cusp of success for years. In 2017, for example, Bill Gates predicted that “humanity will see its last case of polio this year.”3 Instead, cases surged.

WHO’s decision. With eradication forestalled yet again, and ubiquitous covid pressing hard, WHO decided in December last year to accelerate the transition of the polio programme’s infrastructure. Instead of shuttering the GPEU and passing its staff and assets along to other programmes after eradication, WGO scheduled transition to occur before eradication, starting in January 2022.

At that point the “global” eradication initiative would operate fully only in Afghanistan and Pakistan. Other functions and responsibilities would be spun out into existing programmes such as routine immunisation, some landing within WHO, others absorbed and managed by member countries. The decision, reportedly originating from WHO deputy director general Zsuzsanna Jakab, effectively ended the GPEI as a monolithic entity possessed of all the means necessary to achieve eradication. (WHO did not respond to The BMJ’s request to interview Jakab.)

The breath-taking pronouncement drew relatively little notice, until WHO’s regional office for Africa (AFRO) acted on it by firing some 500 polio programme staff. WHO must provide a contractually required nine months’ notice to staff for termination. On schedule, beginning in March, nine months before the January 2022 transition, WHO AFRO’s director general, Matshidiso Moeti, brought the axe down on polio programme staff, surprising GPEI’s partner groups and donor nations.

In a statement a spokesperson for Canada’s government said it was aware of the need to accelerate WHO’s transition plan but that “we were not aware of all steps being taken in advance of implementation, including the termination of GPEI staff in the AFRO region.” Canada, in the critical December 2020 timeframe, called for integration, increased accountability for the GPEI, and expanded donor representation.4 Canada was joined by Germany and Australia, the UK’s Foreign, Commonwealth & Development Office, and the US Agency for International Development (USAID).

Box 1 What is the GPEI?

The Global Polio Eradication Initiative (https://polioeradication.org) was created after the World Health Assembly’s 1988 resolution to eradicate the disease. Its goal is to complete the eradication and containment of all wild and vaccine related polioviruses. It has six core partner organisations: WHO, Unicef, Bill & Melinda Gates Foundation, Rotary International, US Centers for Disease Control and Prevention, Gavi vaccine alliance.

The Bill & Melinda Gates Foundation, topmost funder of polio initiatives and behind only the US government as the largest funder of WHO, reportedly had no idea that the firings were coming and quickly undertook damage control measures, dispatching an envoy to WHO AFRO’s offices in Brazzaville, capital of the Republic of the Congo. The foundation did not respond to The BMJ’s request for an interview. WHO AFRO declined a request to interview Moeti.

“I think Dr Moeti’s point is that primary care is the thing of the future or should be the thing of the present, with routine immunisation and other services all integrated into primary care,” comments Liam Donaldson, chair of the independent board that monitors progress towards a polio-free world.5

“The direction of travel is very clear,” says Aidan O’Leary, who started work as the new director of the GPEI after the December transition decision had been taken. “What we are looking at is really making sure that [polio] is part of integrated public health systems.. Building on that momentum is essentially what AFRO has done.”

The momentum grew with the June release of a new strategic plan that heavily emphasises the integration of polio efforts into routine immunisation and primary healthcare.6 O’Leary says the polio programme is becoming “part of the more mainstream immunisation space,” but this represents a massive turnaround, the programme embracing what had for decades been considered anathema. And integration, once seen as an existential threat, now promises to be the very means for achieving eradication. The world would have “gotten rid of this bugger a long time ago,” says Zulfiqar Bhutta, a paediatrician at Aga Khan University in Karachi, Pakistan. But to succeed “you have to strengthen everything else,” says Bhutta, and, until now, “none in the program wanted to do that.”

The GPEI explicitly separated polio from routine immunisation because eradication requires very high coverage rates: 90% or more. Nigeria, for example, has extremely weak routine immunisation, with coverage of (maybe) 60%, far below the levels reached by the polio only campaigns that have successfully rid the country of the wild virus.7

A costly effort

However, as money is lavished on polio, millions of children, not just in Nigeria, have been left vulnerable to a slew of often deadly, vaccine preventable diseases. This unintentional harm was a “lesson learnt in the early 2000’s” says Oliver Razum, an epidemiologist at the University of Bielefeld, Germany. Razum points back to India, where the “sheer number of [polio] doses that had to be distributed,” twice a year, literally left no space in refrigerators for other vaccines against diseases such as measles. Razum wonders: “Would there have been other ways to spend that money which would have saved even more children from really nasty diseases?”

Polio funds from abroad also led to local brain drains—into eradication and away from local and locally funded health priorities. “Let’s be very honest,” says O’Leary, “member states have been demanding [an integrated approach] for quite some time.”

Some eradication advocates privately voice a second, blatantly neo-colonial justification for the polio programme going its own way: foreign nationals, like many of those fired by Moeti, are critical to the successful operation of the polio only programmes, while countries and local staff are an impediment. O’Leary says that “functional reviews” might see some of the released staff in Africa landing new roles. But the power has shifted. “Whether it’s going to be exactly the same people in all cases, that’s going to be up to the regional and country teams,” says O’Leary.

Eradication hawks are concerned or even incensed by accelerated transition and the new strategic plan. The calls for integration, primary healthcare, and a gender equity lens are, in the eyes of some, at best distractions from achieving eradication.

Donaldson observes that “it was always said that the transition cart would come after the polio horse,” transition following, not preceding, eradication. Significantly, Donaldson also chairs the GPEI’s Transition Independent Monitoring Board, which cautioned WHO over aspects of accelerated transition in its latest report.8 Although the pandemic is being invoked to justify transition now, Donaldson says, “The WHO emergency team is dominated by covid and wouldn’t have time to deal with polio outbreaks. And the essential immunisation team, apart from all its other vaccines, is delivering covid vaccine. So it hasn’t got space to do this either.” The pandemic put polio efforts on hiatus for several months in 2020. More than 31 000 polio workers in more than 30 countries turned their focus to covid.9

The GPEI seems to be going ahead. “If you look at Sir Liam [Donaldson]’s report, he did call for bold decision making by WHO in terms of how to progress this particular agenda,” says O’Leary, who argues that covid has created a transition opportunity.

Insiders suggest a stark division among the six core GPEI partners (Box 1) with WHO and Unicef driving accelerated transition. Holger Knaack, president of another partner, Rotary International, speaking before he left office last month, said the most important lesson from covid is that “we cannot indefinitely sustain the effort

to eradicate polio—we have been on the ‘final stretch’ for several years now.” Rotary, the partner that arguably launched the eradication crusade, did not respond to The BMJ’s request to interview Knaack. The US Centers for Disease Control declined an interview request. A spokesperson for the Gavi vaccine alliance, the newest GPEI partner, said staff vacations prevented a response to emailed questions.

O’Leary describes GPEI partners’ commitment to eradication as “pretty unequivocal.” But the once indomitable tone now seems muted, with O’Leary adding a further caveat: “It’s not just polio eradication. It’s the broader commitment to what I would call global health initiatives.”

Money problems alone are enough to sink eradication. As Gates said at the launch of the new strategic plan, “To be blunt, we are also closer than ever to losing the gains we have fought so hard for [if] GPEI doesn’t identify substantial new resources soon.” The UK has slashed its £100m pledge by 95%. Historically, the UK is the third largest financial backer of polio initiatives, making the blow demoralising as well as financially debilitating. The funding cut leaves a hole of at least 15% in the GPEI’s budget. So far, no big donor has answered Gates’s call.

Neither do countries have money to pay for transitioned pieces of the polio programme. “Basically, there is really no country equipped to take over funding in the transition sense,” says Donaldson. “Africa, which is where most polio resources and staff are, was not nearly in a position to be able to do that.” In what O’Leary describes as a “risk adjusted” approach, transition might be less radical than originally envisaged, with 10 high risk countries in Africa staying under GPEI’s aegis and funding.

The two remaining endemic countries, Afghanistan and Pakistan, have large question marks next to them. NATO’s withdrawal from Afghanistan further heightens unpredictability. The Taliban made large swathes of the population inaccessible to vaccinators but say they are not antivaccination. Their ban on house-to-house polio campaigns arose from concerns about how record keeping on inhabitants and vaccinators leaving suspicious looking chalk marks on buildings might have been contributing to deadly drone strikes. Expanded Taliban control could increase the reach of polio campaigns. Donor nations, however, may be more likely to impose sanctions than to fund projects that advance health in a Taliban controlled Afghanistan.

Pakistan: perplexities

Pakistan presents different difficulties. Absent from the global eradication effort, polio wouldn’t rate as a priority. “Why would it be?” asks Bhutta. “You’ve got a country with an infant mortality rate that is among the highest in the region, a maternal mortality rate that’s among the highest in the region.”

Pakistan, where polio is not seen as a priority, is widely criticised for not being committed to eradication. Says Donaldson: “There is this magic thing called ownership. Everybody says you won’t get eradication until the country owns the problem.” But Pakistan is not a political monolith. Gates spoke to the prime minister, Imran Khan, about polio in late June, a kind of annual check in. Khan might be fully committed to polio eradication, but, notes Donaldson, “of the four [polio] affected provinces now, two are run by Imran Khan’s party and two aren’t.”

Part of the animus behind transition is to apply pressure to Pakistan. According to Donaldson the country received $1.6bn (£1.2bn; €1.4bn) between 2016 and 2020, “and it bought more polio, not less . . . And that’s back to the country ownership again. Pakistan can’t just sit there accepting the money and then not perform.” Polio insiders cite numerous shortcomings, such as falsified coverage data and inconstant progress in which hard fought gains later slip away.

Pakistan has in fact mounted wave after wave of polio vaccination campaigns but with the result that communities became tired of it. “They weren’t just rejecting the vaccine,” says Donaldson, “but were completely hostile to it because it was seen as the only thing that the government was trying to give them.”

Expansion and integration of health services beyond cheap polio vaccines costs money and takes time. And GPEI has neither. The Gates Foundation, which has a larger footprint in Pakistan than WHO, according to Bhutta, is also growing “increasingly frustrated by the lack of progress.” They are tightening the financial screws. “Their model is very much shifting from direct grant support to just making money available,” through debt financed by development banks.

Eradication but not as we knew it

Even if we bravely assume adequate funding, would integrated health service delivery also deliver eradication? If efforts broaden to encompass vaccinating against more diseases and, sometimes, to health services beyond vaccination, will eradication get lost? Integrated delivery has “not ever really been tested for an eradication programme,” says Nicholas Grassly, an epidemiologist at Imperial College London and an independent adviser to GPEI. The only successful effort to eradicate a human disease came against smallpox (box 2). “Smallpox eradication was very much a vertical programme,” Grassly notes, while O’Leary, perhaps forgetting his endorsement of integration, still says that to achieve eradication “you have to remain focused, ruthlessly focused.”

Amid the great flux a paper entitled “Polio eradication at the crossroads” appeared at about the same time as the GPEI’s new plan. The authors, including long-time polio researcher Konstantin Chumakov, suggest that eradication of all poliovirus from the planet has never actually been possible.15 The reasons include the likelihood of containment breaches of the virus kept in scientific facilities and the ability to synthesise polio.

The problems aren’t new, but the authors use them as the basis for a new policy direction: “The objective of our efforts should be to eliminate the disease, not the virus.” We can still “eradicate polio” because in lay terms both the disease and the virus go by the same name. The means proposed, much as envisaged in the new polio strategic plan, are “global immunisation programmes.”

Bhutta says that GPEI “may need to call the new reality the new eradication.”

Footnotes Competing interests: I have read and understood BMJ’s policy on declaration of interests and have no conflicts of interests to declare. Commissioning and peer review: Commissioned; not externally peer reviewed.

REFERENCES

1. Centers for Disease Control and Prevention. Polio. https://www.cdc.gov/globalhealth/newsroom/topics/polio/index.html

2. Global Polio Eradication Initiative. Vaccine-derived polioviruses. https://polioeradication.org/polio-today/polioprevention/the-virus/vaccine-derived-polio-viruses.

3. Sipherd R. Bill Gates: For polio the endgame is near. CNBC. 2017. https://www.cnbc.com/2017/10/24/bill-gateshumanity-will-see-its-last-case-of-polio-this-year.html.

4. Global Polio Eradication Initiative. Meeting of the Polio Oversight Board. 2020. https://polioeradication.org/wp-content/

uploads/2021/02/POB-minutes-20201218.pdf.

5. Global Polio Eradication Initiative. Independent Monitoring Board. https://polioeradication.org/who-we-are/governanceand-structure/independent-monitoring-board.

6. Global Polio Eradication Initiative. GPEI strategy 2022-2026. https://polioeradication.org/gpei-strategy-2022-2026.

7. Gavi. Nigeria. https://www.gavi.org/programmes-impact/country-hub/africa/nigeria.

8. Polio Transition Independent Monitoring Board. Navigating complexity: adapting to new challenges on the journey to a

polio-free world. Jan 2021. https://polioeradication.org/wp-content/uploads/2021/02/4th-TIMB-Report-NavigatingComplexity-20210131.pdf.

9. A multibillion-dollar plan to end polio, and soon. New York Times. Jun 2021. https://www.nytimes.com/2021/06/09/

health/polio-eradication-plan.html.

10. Whitehead N. The US thought it was rid of hookworm. Wrong. National Public Radio. https://www.npr.org/sections/

goatsandsoda/2017/09/12/550387650/the-u-s-thought-it-was-rid-of-hookworm-wrong?t=1626446377115.

11. Henderson DA. A history of eradication—successes, failures, and controversies. Lancet2012;379:884-5doi:10.1016/

S0140-6736(12)60381-X.

12. Fenner F. Candidate viral diseases for elimination or eradication. MMWR1999;48(SU01):86-90.

13. Asiedu K, Amouzou B, Dhariwal A, et al. Yaws eradication: past efforts and future perspectives. Bull World Health

Organ 2008;86:499-499A. doi:10.2471/BLT.08.055608. pmid:18670655

14. Slutsker L. Malaria: past, present, and future. https://www.cdc.gov/grand-rounds/pp/2010/20101118-presentation-malaria

-eradication-H.pdf.

15. Chumakov K, Ehrenfeld E, Agol VI, Wimmer E Polio eradication at the crossroads. Lancet Glob Health2021;9:e1172-

5. doi:10.1016/S2214-109X(21)00205-9. pmid:34118192

SHORT HISTORY OF ERADICATION.

1909: Hookworm. The Rockefeller effort to eradicate hookworm focused on treatment rather than conditions of rural poverty, such as lack of shoes and open defecation, that enabled transmission. Hookworm Is still found in the UK. 10 The Gates Foundation has funded research into a vaccine.

1915: Yellow fever. The Rockefeller Foundation next turned to yellow fever, breaking new ground by funding research into a vaccine. Eradication efforts focused on eliminating the breeding grounds of the mosquito vector and dramatically drove down yellow fever in the Americas.11 In 1932 came discovery of an animal reservoir, monkeys, effectively ending eradication.12

1952: Yaws. WHO and Unicef pursued eradication of yaws between 1952 and 1964, achieving a 95% reduction in caases. 13 The yaws project was integrated into primary healthcare as a way to get to zero

1967: Smallpox. Smallpox is the only human infectious disease to have been eradication. The effort officially began in 1967, and the last case was isolated in 1977.

1955: Malaria. WHO’s attempt to eradicate malaria, mainly relying on DDT to kill mosquitoes, was beset by problems, notably the evolution of resistance to DDT. The effort sputtered, ending in1970. 14 Malaria resurged in many countries where people no longer had any immunity, resulting in severe illness and death, a still remembered instance of how eradication failure did public health harm.

1980: Guinea worm. Guinea worm eradication, like polio, has reduced cases by 99/99%. But in 2012 animal reserves began to be discovered. Efforts continue, but in 2020, besides 27 human cases in six countries, Chad reported 1507 infected dogs and cats and Ethiopia four infected baboons.

2007: Malaria revisited. In 2007 The Gates Foundation unilaterally shifted malaria policy away from control to eradication at the same time it jumped behind polio eradication with a $700m commitment.

POLIO GROUPS – ONLINE SUPPORT

The UK times are approximate – please check times and how to access details with the organiser also a handy time zone converter is here https://www.thetimezoneconverter.com/

This list is not exhaustive, other groups may exist in your local areas too.

DAY	GROUP	UK TIME	GROUP DETAILS
Sun	Nebraska Polio Survivors	8.00 pm	npsa.org@hotmail.comwww.nepolioorg.ipage.com/
Mon	Polio Quebec – adapted Yoga	8.00 pm	monaarsenault@gmail.comassociation@polioquebec.orgwww.polioquebec.org/eng/
Tues	Polio Quebec	12.00 midnight	monaarsenault@gmail.comassociation@polioquebec.orgwww.polioquebec.org/eng/
Wed	March of Dimes CanadaMarin County Polio Survivors	7.00 pm9.30 pm	bstupar@marchofdimes.cawww.marchofdimes/ca/enca/programs/postpolioFrancineAllen@comcast.net
Thurs	Boca Area Post-Polio SupportMarin County Polio Survivors	6.00 pm9.30 pm	bappg@aol.comwww.postpolio.wordpress.com/FrancineAllen@comcast.net
Fri	Polio Survivors Network	Varies	info@poliosurvivorsnetwork.org.uk
Sat	Atlanta Post-Polio AssociationLand of the Sky Post-Polio SupportPolio Support Group San Gabriel ValleyWorld-Wide Fellowship of Polio Warriors	7.00 pm5.00 pm6.30 pm11.00 am 5.00 pm	nicolsw@locinc.comappaemail@gmail.comemcanallen@gmail.comhopemle@juno.comwww.facebook.com/1ppssgvwie/peter@poliowarriors.orgwww.poliowarriors.org/

Polio Australia (steph@polioaustralia.org.au) please contact for information of events Polio Survivors Ireland provide a telephone conference (fsw@ppsg.ie) Post-Polio Health provide ideas for support group discussions (info@post-polio.org)

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

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Trustee – Verité Reily-Collins – verite.reilycollins@poliosurvivorsnetwork.org.uk

Trustee – 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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Donate by cheque to Polio Survivors Network by PayPal to treasurer@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.

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Post Polio Matters Volume 10 Issue 8 Read More »

Post Polio Matters Volume 10 Issue 7

© Polio Survivors Network – Volume 10, Issue 7/12 [115] May 2021	Page 1
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network	Lincolnshire Post-Polio Library100+ articles
Polio Survivors Network send our sincere condolences to Her Majesty the Queen and her familyon the passing of her husbandHis Royal Highness the Prince Phillip, Duke of Edinburgh.

Polio Survivors Network Newsletter

May 2021 — Volume 10 Issue 7 of 12 [115] n.b. Volumes 1 to 6 published under the name LincPIN

See Page 10

DOING IT OUR WAY

POLIO SURVIVORS have lived our lives, lives that were full and often to a level way higher than initially thought possible. As we recovered there were many changes as we planned each careful step, each wheel rotation travelling along our various highways achieving more to reach our best possible.

Now our muscles weaken there are times that we bite off more than we can chew. We need to ask for aids for human help… so against our life before… so hard for us to ask out loud.

There is no doubt that we need this support, year on year, as we continue to modify the ways to do what we can manage. If you did not have polio but you have had an injury or operation that reduces how you functioned for a while then you probably found that it was not easy working out how to do some of the things you needed to do.

We know Polio Survivors are not easy patients, no two of us the same. We know there are manuals that advise things like ‘how to get up from the floor’ and ’this is the equipment we supply for that problem’. You have the extensive knowledge of your profession and we have decades of experience of having to continually change how we do what we need to do. Please work together with us so we can work out how to find yet another way to do it our way.

I give the following example of where I failed to provide enough information as to why I had to do the action my way.

I explained I was struggling to get up from the toilet that 12 years ago we had had fitted to a frame at 19 inches in height, 3 more than normal. I demonstrated how I got up from sitting on the side of the bath that is 5 inch higher at 24”. With my hands on the side of the bath level with my bottom I lean forward and can stand with very little strain on my shoulders.

The solution was an email telling me that a frame and raised toilet seat like the one on the left would be provided. This would not work for me. I had failed to explain when demonstrating that my hands have to be at the same level as my bottom and no higher or it would put too much strain on my shoulders. It is extremely important that we Save Our Shoulders so we can still transfer.

Continued on

page 3

Thank you so much!

Donations (since last newsletter)
V Scrivener	£30.00
D & J Shaw	£12.50
K Lagwi	£12.50
Total	£55.00

Page 2	ContentsDonation acknowledgements
Page 3	Editorial – Hilary Boone Front cover article continued
Page 4 – 5	2021 AGM announcementSave Our ShouldersWhat do YOU think of USA invasion of the NHS?
Page 6 – 7	Lessons have been learned – or have they?
Page 8 – 11	Polio Pioneer Helps Survivors Hold On To Strength By Joseph Shapiro Polio Survivors Jean Maggi Aspires to go into Space
Page 12	Toni Writes
Page 13	Polio Survivors under 65 & Covid-19 Vaccine – Mary Kinane Brain & Spine Foundation
Page 14 – 15	Problems with my callipers by Zsuzsanna Snarey Be Proud to be a Polio Survivor, Kathy Hazel
Page 16	Polio Survivors do you discuss post-polio issues with your friends and family?
Page 17	Post Polio News (PPN)
Page 18	Virtual Support for Polio Survivors
Page 19	Management Committee Useful Polio Articles
Back page	PSN Virtual Coffee & Catchup

Editorial by Hilary Boone

One would think that with all these months of Lockdown the time would be going slowly. However, for us we cannot believe how fast the months seem to be going. It is 1st May today, the start of our 15th month stay at home.

Thankfully our carers had their second vaccine over a week ago (Pfizer) but both struggled with fatigue and pain for a few days. They are OK now over a week later. Richard and I have just had the AstraZeneca second vaccine. For us the first shots Richard did not seem to have any reaction to both shots. For me, I had hurt my left wrist about 12 hours before the first shot and the pain multiplied by at least four for a few days. I answered this to the question from the nurse on 28th April when I went for my second shot and she said, as I had thought, it had gone to the site of inflammation. This time I did not even feel being given it and I have not had felt any different from my normal level of struggling to complete the endless and growing paperwork that arrives through the letter box [laughing to myself—perhaps I should tape the letter box closed?] and by email.

How many more of our members are also a carer to a disabled partner? We manage our Post Polio Syndrome by pacing and resting and using energy tokens [10 a day and 70 a week] to plan our lives. I am having to give up some of my energy tokens to help Richard [he also has Stage 4 Parkinsons] when we are unable to employ a carer due to the loss of funding for his medical needs. Please, if you are in this position, do let us know of any issues that you have so that we can see if there is anything we, and the other neurological charities with which we are in contact, can do to help.

It is taking months to have Richard assessed by the many health professionals needed to be able to provide all the medical reports for his varied complex issues for the checklist onto multi disciplinary team meeting. I just charted the hours I have been on duty, and for the first four months of the year it is 76% of the time. Of course I am asleep some of this time but as Richard has to have medication at 10.45, 02.30, 06.30 the most sleep I get in one stretch is about 3.5 hours. I read on my iPad on night screen to try and get back to sleep.

 Continued from front page…

Actions of Daily Living. Have you stopped and thought how you are doing the actions of daily living? How many times have you changed the way you do them since Post-Polio started? Until I did this I had no idea because every change just became my new normal.

In 2004 I was scrambling eggs and suddenly realised that I was using elbow rotation not wrist rotation to do this . Everyone up to then had recorded my arm strength as normal. On telling this to the Physiotherapist who was giving me a full assessment she tested the muscle involved with this action. She found that whilst I had passed the normal arm strength test of grip my fingers, pull and push against her that my wrist muscles were very weak. If you give health professionals more specific information about these changes you can then ask them “Please can you tell me why I am have had to change the way I do this?”

To work in the kitchen I have to stand up as my arms work best at 45 degrees down. I used to work in the sink then when we moved 13 years ago we cut the kickboard off one cupboard to lower that work surface. I hold on with one hand as I move about the kitchen and if I need both hands to do something then I have to lean against the work surface. I am also limited to a few minutes of doing this before need to rest.. Perch on that lowered work surface.

Remember not everyone who assesses us is a medical professional and even if they are they may not have received any/enough facts about Polio and the nerve damage caused and/or PostPolio Syndrome and the new weaknesses in those polio muscles. In 1996 when we first started our research we found that for Doctors, Polio was a half hour lecture with leprosy!!!

Help PSN build up more information on the different ways we have developed to manage our every day lives. Remember your way may help someone else manage their lives. We look forward to hearing from you.

Polio Survivors Network – 2021 Annual General Meeting

The decision has been made by the management committee to cancel the Polio Survivors Network 2021 Annual General Meeting due to the ongoing Covid-19 pandemic.

As our members are vulnerable and also to keep in line with current government advice, we are not confident at this time to plan an AGM that would be before our submission deadline of September 2021. Whilst things are slowly opening up and vaccines being administered, forward planning is not set in stone.

The management committee considered holding a virtual AGM using Microsoft Teams and hosted practice runs in the form of a virtual coffee catchups. As many of our members are older and digitally excluded this was not felt to be a good fit for our needs as a charity.

If it is possible to hold a face to face get together safely before the end of the year as the lockdown eases we will look at the options available. Simon Parritt, Chair

What do YOU think of USA invasion of the NHS?

After I posted an article about the American company Centene’s take-over of 58 GP surgeries around Britain, plus the announcement that American Tim Ferris had been headhunted from Massachusett’s GP Organisation to be NHS National Director of Transformation, my inbox exploded.

The article is here : https://aftercancers.com/american-revolution-in-reverse/

Before moving out of London I was finding I had to wait three to four weeks for a GP appointment, even if I said I was in pain. My surgery had amalgamated with several others “for your convenience”, but innovations copied from across the Atlantic was making my care less user-friendly.

Some years ago I was paid to sit on a Dept. of Health committee, looking in to care of the elderly, such as polio survivors. The committee was run by a firm of American Management Consultants, who proceeded to give us all a glitzy presentation about the benefits they were going to bring over looking after the needs of London’s elderly.

The Americans had flown a group of NHS administrators over to their HQ in Seattle, “to see nurses in training”. These then agreed to employ 200 of the trainees, at a salary of £50,000 p.a. (we wondered if UK nurses had been offered this),

As referenced on our cover page, MossRehab developed Save Our Shoulders which is an excellent resource. It can be found https:// www.mossrehab.com/upload/docs/Services/mrri_sos9510.pdf and also on

Post-Polio Health International website https://post-polio.org/wp-content/ uploads/2020/01/Save-Our-Shoulders.pdf“Many polio survivors report new symptoms as they age, Some of the more common symptoms include loss of strength, fatigue, muscle twitching, cramping and muscle or joint pain.”“The purpose of this manual is to help polio survivors become more aware of the behaviours that can cause shoulder overuse and some of the treatment options that are available.”

Putting on my smarmiest face, I asked “I do hope we’ll welcome the US nurses?” I was assured “yes”. “And will we be giving them the same contracts as British nurses?” “Of course”.

Anyone knowing the employment scene in the US knows that the private healthcare package is almost more important than the salary. So surprise, surprise, only six US nurses applied for the job, all that were prepared to risk long waits for NHS treatment. So British nurses were employed, but sadly I suspect on a lower salary.

NHS today

Many good ideas came out of lockdown, and giving power to those who understand the system and know what needs to be done would seem to be the way forward, but does a big conglomerate understand our GP surgery system? And does Ferris have in-depth knowledge?

Currently Centene, and its subsidiary Operose Health, are involved with 58 GP surgeries across the UK: making it the largest GP network in the UK. And the UK boss of Centene, Samantha Jones, was recently appointed as an adviser to Boris Johnson on “NHS transformation and social care”! Anything ringing bells?

Today, the NHS has 9,000 GP vacancies, and the shortest consultation time of any economically developed nation. (French GPs often ask how can our doctors give a diagnosis in 10 short minutes?). Can we really afford to let the Centene experiment continue in our GP practices?

With GPs resigning in droves, what is needed in the NHS? Do we need overseas involvement? Or do we need someone who understands the problems of an under-funded NHS reeling after lockdown? Or do we need someone who understands what the NHS needs, how to make use of the way NHS staff performed miracles, came out with new ideas, innovations and improvements, often radically changing healthcare for the better. So let’s utilise this talent, instead of head-hunting across the Atlantic.

The US medical system is known to be inefficient, and possibly one of the most expensive in the world. So what do we have to learn from this? Except perhaps how to ‘add value’ by increasing bills? Involving outside agencies from another country will mean they have to be paid – somehow.

As Silver Voices, the very-much-on-the-ball campaigners for the elderly say, “Worrying times indeed”.

Lack of contact with patients is one reason why GP’s leave the profession early. Today, we have the shortest consultation time of any economically developed nation.

Ferris comes with the usual PR promises of “setting forth a strategy and overseeing the design, development and delivery of clinical and digital technologies aimed at improving health care quality, increasing productivity and ensuring convenient access to services and health information for more than 56 million people in England”.

This begs the question “what’s new? and what do we get out of it?” Answer – a whole lot of upheaval, changes and cut-backs.

And watch out! Ferris is coming into the role promising to look out for a “wide range of efforts aimed at improving care in the hospital and in the community for the sickest and most vulnerable patients”. We all want this, but how to deliver this, in a grossly underfunded NHS, needs someone who understands how the NHS works,

This will take a deep understanding of how the health system works in Britain, which means someone who had had years to understand what is going on in Whitehall, as well as what is urgently needed in the NHS.

This video was made by a group of patients, worried about what was happening to their local surgery https://mail.google.com/mail/u/0/#inbox/FMfcgxwLtkZxLbGwdlmMLbcMjzBdpdfg?projector=1

Verite Reily Collins Trustee, Polio Survivors Network www.aftercancers.com

Lessons have been learned – or have they?

When Nurses or Doctors asked me “why didn’t you get the polio vaccine?” I would politely explain that this wasn’t developed until after I had caught polio. Until I realised they didn’t listen. Now, I just burst in to crocodile tears. These flow until I reckon the point is taken that this is an insensitive question.

I am a cynic, and not convinced everyone looking after my health has learned lessons they should. I tip-toe around a ‘new’ doctor, until I can work out if they know what’s what. Like all of us, ‘I get on with it’ if there is a problem, otherwise we’d never get anything done.

I remember telling the Anaesthetist from The Royal Marsden, twice, that I had had polio. Went off for my op – and when I woke up alone in the recovery room, lying on a theatre trolley, thought “they haven’t operated”.

Hooking my legs under the trolley mattress, I attempted to sit up and find out what was going on. The trolley shot across the room, banging into a tsunami of other trolleys that shot off in every direction. The noise bought people running to see what was going on.

Were they concerned about me? I should cocoa. Sister bore down saying “you weren’t supposed to be awake”, and was obviously furious – with me. With polio you have different reactions to anaesthetics, but – of course – it was my fault that things had gone wrong!

I just hope rivalries twixt NHS and Military are sorted out today! Many years ago, a Military Ambulance transferred me from Millbank Military Hospital in London to the Royal National Orthopaedic Hospital at Stanmore to start my polio treatment. Nurses had wrapped me in sheets, as it was too painful to dress me in a nightdress or PJs.

On my journey I had a full Military escort; nothing to do with me, but you were ‘nursed’ according to rank (or in my case my father’s), so two smart male orderlies in full khaki uniform, and two female Queen Alexandra nurses in their elegant red capes, accompanied me.

Marching me smartly on my trolley into the ward, out of the corner of my eye I saw a Sister shoot out of her office, calling up her ‘troops’ as she swept down to repel this invasion.

Elbowing the nurses aside, she proceeded to whip the sheets off my trolley – leaving me fully exposed and stark naked.

No doubt this made a lively tale when everyone returned to quarters, I’ll always remember receiving a lovely ‘care parcel’ from the Military team, of delicious Meltis New Berry fruits, as a kind memento.

It was a different problem with French student doctors. In hospital, every Friday my surgeon would carry out his Ward round, trailing a group of doctors from abroad who had come to learn from the great man.

I enjoyed meeting these doctors, until one day I heard sniggering amongst the young, male group. I spoke French, and could hear my legs being discussed at length (they were long even though I was only 16). With idiomatic French (learned from dubious sources), I told them to F – off.

My surgeon suddenly found his audience were cowering in the centre of the ward, looking at me transfixed. Astonished anyone in Britain spoke French – and such words! – but my surgeon had a quiet smile on his face.

MRI Scans can cause me problems because there is no way I am able to lie on the flat metal bed without lots of padding. I explained this to the doctor in charge, several times.

Eventually, I thought she had grasped that I needed strong pain relief, and she produced some tablets for me to take. But, ten minutes into the procedure, I could feel red-hot pokers starting to

dance up my spine, and had to call a halt.

Crawling out, I was met by a furious doctor, arms akimbo: “I gave you tablets for claustrophobia” she almost screamed. And wasn’t too interested when I tried to tell her I didn’t suffer from fear of being enclosed, but she was past listening.

Recently, it took me four months to find someone in the vast NHS network who could check if it was safe to have the Covif-19 vaccine. Previously my reactions to drugs had included losing the sight of my right eye, to a 7-hour heart operation; so I didn’t want a repeat.

Finally, everything comes to he (or she) who waits! And a friend-of-a-friend introduced me to a charming Nobel medicine prize-winner (how lucky can you get) – who in a no-nonsense way talked me through what I should and shouldn’t do.

Reading through the literature handed out after the vaccination, I saw the words ‘chimpanzee’ and ‘ethanol’. Now, it’s not rocket science: these words could be worrying – yet those ladling out the vaccines don’t seem to have cottoned on.

Perhaps those moaning about ‘anti-vaxxers’ should learn some lessons, and be prepared to answer questions that concern us. Or will it take the Army yet again to step in and sort things out so we get listened to?

If anyone has the same quirky sense of humour as me, see https://aftercancers.com/the-indoor-mountain-climbing-club/

Verite Reily Collins www.aftercancers.com

Editors note: Apart from chuckling a lot whilst I typed this up it reminded me of similar issues Richard and I had had. Please tell us your stories. These are important points and we need to find a better way of telling health professionals about our issues.

Waking up early in the Recovery Room. I had the same coming round early experience in the Recovery Room after a small gynae op. I woke up, I could not see any staff so I lifted my blanket to see if I had been operated on. I had. I called out and Staff came running, they were mystified and said we will send you back to the ward but you are going two ahead of what we expected. They sent the anaesthetist to see me later that day. He told me that he had researched and found I needed less anaesthetic as our polio weakened muscles cannot clear the normal dose as easily. He added that maybe he should have given me just a little bit more as I had given the Recovery Staff quite a shock.

MRI last year. I too cant lie flat I explained. They said they would sort it and laid on my back with my knees up [they were lowered over a cushion] I had my head pushed into a plastic cage and I started my journey in with my eyes tightly closed. I was in massive pain in my back due to the curvature of my spine and told them. Two minutes really important, so saying Nursery Rhymes constantly I manage the two minutes.. Then it was two minutes more and with tears rolling down my face from the pain I continued saying my nursery rhymes as the machine made its g,g,g,g,g sounds. That was over and would you believe they said just another ten minutes but I had to say please get me out of here and out I came my face wet with tears and my back killing me.

Richards story is that I had had an accident and he had come with me in the ambulance. He did not have any food at the right time and he fainted so they put him in the next bed to me. I had broken my ankle and it was wrapped up in cotton wool and my plastic Ankle Foot Orthosis put on and I was sent home at 3.00 am in a Taxi. Richard however was low on potassium so they kept him in. Next morning a Consultant arrived on the ward with a gaggle of students. The Consultant started to ask him questions about his conditions and the medication he was taking. He asked “What are you taking this Mirapex for”. Richard replied “Parkinsons” The Consultant responded “I have never heard of it being prescribed for Parkinsons”. Richard then asked him “Are you a Neurologist?” He tutted, spat feathers and stormed out of the room saying “Discharge this man”. Richard said the students were having a hard time keeping straight faces.

Polio Pioneer Helps Survivors Hold On To Strength By Joseph Shapiro

With permission from Polio Perspective April 2021, Editor Millie Malone.

Dr. Lauro Halstead is one of only a handful of doctors in the U.S. who specializes in polio – and he speaks to his patients with authority. He was one of the first doctors to publish evidence of a startling medical problem: Twenty-five years ago this month, he presented evidence that people who’d had polio as children were reporting a new weakening of their muscles as they got older. It became known as post-polio syndrome. But there’s one more thing that gives him an understanding of his patients: Halstead is a polio survivor, too.

One challenge is that many doctors do not have experience treating patients with polio or postpolio syndrome, says Dr. Lauro S. Halstead in his book Managing Post-Polio. He recommends working with your primary care doctor to find a physician with expertise in post-polio care.

At the National Rehabilitation Hospital in Washington, D.C., Halstead comes down the hallway on an electric scooter. He is 73, and he would like to retire, but he can’t. The number of aging patients who want to see him is growing. Post-polio patients – including many from around the country and even from other countries – come to his polio clinic here.

On a late April day, Edith Gerver sits in an exam room, with a bamboo cane at her side. The 83 year old explains that her daughter is moving to Florida, and she’s thinking of going with her. But she’s having a problem: Lately she’s been losing her balance and falling, a few times a month. She has come to see Halstead, hoping he can come up with a solution.

The doctor asks her to take off her shoes. Her feet are strange: There are scars, but no ankles. Multiple childhood surgeries fused her bones so she could put weight on her feet and walk. Halstead uses his arms to press against her feet, testing the strength in her legs.

Shared Experiences

He takes a medical history and gets a sense of her active life. They share their polio stories. He was 18, a college student touring Europe, when he got sick. She was an infant in Germany, and later, when her Jewish family fled to the United States, she wasn’t at first allowed in because she had had polio.

Halstead tries to persuade Gerver that it’s time to start wearing a leg brace. He rolls up his pant leg and shows the one he uses. She says she tried one before, but it was too uncomfortable. He tells her she should get a scooter, like his. She says it would be too hard to get around with it.

“What I want to do,” he tells her, “is be able to make any modification that you are interested in that would help you have a more comfortable, enjoyable life.”

But it’s not easy for his patients to do things that look like they’d be giving in to their polio. People with polio worked hard to overcome their illness, so it goes against their nature – when post-polio syndrome kicks in – to slow down.

“So you may think, you think that maybe that’s like giving in?” he asks her.

“I feel that as long as I can stand on my two legs, I’m ahead of the game,” the woman says. “I know that doesn’t make much sense.”

“No, it doesn’t,” the doctor replies softly.

“But it’s who I am,” Gerver replies. “And I think polio made me that way. “”OK,” says Halstead. “I will accept that.”

Survivors

But he doesn’t give up. He keeps pushing her gently over the hour-long appointment. By the end, she agrees to let him call the hospital’s orthotist. She’ll try one more time to wear a leg brace.

Halstead can relate to patients like Gerver because he, too, is managing his post-polio syndrome. “I’m having a lot of the same issues that she is in terms of slow, progressive weakness in my legs,” he explains. “So I can walk shorter and shorter distances. I continue to use a motorized scooter for longer distances, longer than 20, 30, 50 feet. I take afternoon naps to help get me through my afternoon fatigue.”

–

There hasn’t been a new case of polio in this country from the “wild” live virus since 1979. The use of the live-virus vaccine, which sometimes can cause infection, was discontinued nine years ago.

Still, there are hundreds of thousands of polio survivors alive in the United States. The National Center for Health Statistics estimates that there are more than 440,000. The leading polio survivors’ group, Post-Polio Health International, puts the numbers at 775,000 or more. Many of these survivors are still paralyzed. But most aren’t and, from looking at them, there’s no way to know they had been infected. But all polio survivors face the threat that polio can come back as they get older — the post-polio syndrome first described in the mid-1980s by doctors like Lauro Halstead and Marinos Dalakas.

Another patient, Julie Lewis, waited six months for her appointment with Halstead. This is her first time to the clinic, so she spends two mornings seeing Halstead and his team, which includes physical and occupational therapists, and a social worker.

She has a busy and important job as a hospital administrator. She, too, finds it hard to accept all of Halstead’s advice to slow down including taking a nap at the office.

After her long sessions with Halstead, she goes back to the office. Lewis, at least until now, has always been able to hide her polio. But right away, Halstead spots the one visible tip-off. He holds his hand to hers. On both of them, the usually thick muscle at the base of the thumb has withered.

That looks familiar to me, your hand,” Lewis tells the doctor. “I like your hand.”

Halstead laughs and says, “But it’s useless to me.” There’s no question that the atrophied hand muscle is a sign of polio,” he says.

That comes as a relief to Lewis. She’s 55 now. She remembers that when she was 9, she was so sick for weeks that her mother had to hold her up in bed and on the toilet. But she’s had trouble finding a doctor to confirm that early memory. Her mother has since died, and her early health records are gone. “I’d been told all my life I had polio – by my family, my early doctor,” she explains. “But as I got older and I had trouble finding doctors that could recognize and confirm that, I started doubting at times. Maybe I had an injury, maybe something else happened to me that I wasn’t sure about.”

Diminishing Resources

Seeing a doctor who specializes in polio makes the difference. But that raises a question, says Joan Headley of Post-Polio Health International: “Who’s going to replace these early champions and these early physicians?”

It was a member of her polio survivors’ group that gets credit for first sounding the alarm about post-polio syndrome. In 1979, a man from Arizona wrote in the group’s newsletter that, as he aged, he was having more difficulty with weak muscles and extreme fatigue. Other members wrote in to say they’d noticed the same thing. In 1982, Halstead was the first doctor to listen to the group’s members, survey them, present his findings and then, with a handful of other polio doctors, spread knowledge about post-polio syndrome.

Last month, several hundred of Headley’s members gathered at Warm Springs, Ga., the town whose warm mineral springs President Franklin D. Roosevelt and others with polio visited. At the recent meeting, a big topic of conversation was who would replace the generation of polio specialists like Halstead. Headley says many polio survivors say they still have difficulty finding doctors who understand polio. But there’s also optimism that rehabilitation specialists – and even many family doctors – now have the expertise to treat them.

Headley says that’s in no small part because of Halstead. “Dr. Halstead has certainly been the champion of the post-polio community over the last 30 some years,” she says. And because Halstead spread the word about post-polio syndrome – with his research, writing, speeches and personal communication with doctors and survivors – there’s reason to think, she says, that “most physicians now know about the late effects of polio and post-polio syndrome.”

Halstead would like to retire. He’s got a wife and teenage son, and he’s got lots of interests: He

travels to Italy a couple of times a year, in part because of his love of all things Italian, but also to help polio survivors there create the kinds of support groups and clinics found in the United States. And Halstead also plays music. He had been a trombone player before contracting polio, but stopped after his illness. (Although, while in the hospital, he taught himself to play piano with one hand.) But recently, he’s taken up another brass instrument, the euphonium, with a special left-handed instrument made for him. But before he can retire, he’s hoping his hospital can find and hire a young doctor — one he could mentor to take over his practice.

Editors Note: I have met Dr Lauro Halstead at quite a few Post-Polio Conferences. He told me he had been to Lincoln in the UK six months before catching polio on his trip round the world.

I have also had the great honour of being invited to his house for a meal and lots of talk about how we are managing our new issues. He told me that he had had to get an electric scooter to manage the long corridors in the hospital and now some years later realised that with a young son he needed one at home too as it allows you to do so so much more. I took notes of the dates and made a slide for one of my presentations a few years later.

Dr Halstead told me that when eating he uses a dessert spoon for carrots and brings his head down towards the plate. Less arm movements and more carrots an effort. He told me, “When working I hang a sign on my office door at lunchtime saying meeting in progress do not enter but I am taking a break on my couch and the easiest way of falling asleep is for me to listen to a medical book on headphones”. He also told me about examining a lady who told him that she uses 9 pillows to support her weakened limbs. Nine, I said was an awful lot of pillows but if it helps that is ok. Imagine my surprise he said on getting home and counting I used SEVEN.

Single Action Manual Muscle Testing

Following my fall in 1988 I was repeatedly tested for my new and unexplained weaknesses and nothing found. I later learned it was thought I was malingering. In 1999 I received a copy of a medical report from a UK Neurologist that stated the power of my left leg, hip, knee and ankle were normal. I could not believe what I was reading as my left leg had been weaker ever since I caught polio at the age of 5 and in fact when assessed for the post of Relief Sports Hall Attendant I had been instructed on each piece of equipment in the GYM. I had to experience it first and the Instructor asked “When did you damage your left thigh?” This was because I was unable to lift the bar with my left leg on that exercise machine. I explained it was my polio but thankfully that did not stop me continuing with the job.

I got home and thought about this…. Why would a health professional write something he did not believe to be true. Then light dawned as I remembered back to 1969 when I had passed a medical for the Police. I had continued with the application on my fathers instructions as it would be a good interview experience for me but I never expedited to pass the medical.

I realised there has to be something wrong with the way we are being assessed. Single action Manual Muscle Testing. I did some self assessment tasks, made up a PowerPoint slide and sent this with a letter to Dr Lauro Halstead and to Dr Maynard, Post-Polio Health International.

Miami, April 9th to 11th 2007

Progression of Symptoms – City blocks walked 1975 – 2002

Dr. Lauro S. Halstead – November 2002

1975

6789

1980

1234

1985

6789

1990

1234

1995

6789

2000

Years

8 6 4 2 0

2e How a Chart quickly shows decline in

walking ability Dr. Halsted got a scooter for

getting round hospital in 1994 but

waited till 1999 to get one for

home use. So many polio

survivors fight change ‘we are

not there yet’, including health

professionals with PPS.

Lauro S. Halstead MD

Director of Post-Polio Program, National Rehabilitation Hospital, Washington DC, USA.

May 2002

Replied: “If done only a single time, it can give an erroneous idea of the true muscle strength and endurance”

Miami, April 9th to 11th 2007

6 5 4 3 2 1 0

Left Leg

Right Leg

Straight Leg Raise Repeats

6 5 4 3 2 1 0

Left Arm

Right Arm

Arms – Lift Item and Sustain

3b Was the patient asked to repeat/sustain the

test to the level their weakness starts?

My reported new weakness was not corroborated

by a single test or two second duration.

Jean Maggi, a Polio Survivor the subject of a Netflix documentary El Límite Infinito (now on Netflix UK with English subtitles)Aspires to go into spacehttps://wsvn.com/entertainment/man-with-polio-subject-of-netflix-doc-aspires-to-go-into

space-and-a-fort-lauderdale-clinic-is-helping/Jean Maggi, had polio and was never expected to walk again. This documentary from his early struggles to his climb up the Himalayas also highlights his advancement of adaptive sports. Now this 58 year old man aspires to be the first disabled person to go into space and is training at NASTAR, the National Aerospace Training and Research Center in Pennsylvania, U.S.A.A Fort Lauderdale clinic in Florida – Hangar Orthotics – is helping him to achieve this.I saw this on a Polio Facebook page and thought our readers who can access this would be interested. Then I looked for a photograph to go with this piece and on looking at his website am astounded at his achievements. A typical do not tell me I can’t because I will show you I can. Information on DualSki, HandBike, Golf, Tennis, Basketball, WakeBoard, A non-profit organization, founded in 2016 in Córdoba, Argentina by Juan Ignacio Maggi and María Victoria Milano, with the unconditional support of his family.Created to contribute and provide aid to children with disabilities through movement, sports, it has delivered more than 250 adapted bicycles, it also supports its beneficiaries through education and work. This is for children aged 4 to 18 with mobility issues who could benefit from using a hand bike. Promoting the inclusion and personal growth of all its beneficiaries www.fundacionjeanmaggi.org/

Squash and Horseriding. He has competed in the Paralympics www.jeanmaggi.com

He has also set up a Charity, Fundación Jean Maggi

Toni Writes …

Feedback, surveys, how did we do, what is your opinion, how is my driving … we are often being asked our thoughts from so many organisations and services but does our feedback make a difference? Sometimes it seems to and other times we wonder why we bothered. I do question sometimes what it is that makes me feedback to some services and not to others? Was it the tone, the length, my mood, and openness to it, was it of interest to me, was it cleverly worded? We can get a bit surveyed out – especially when we have purchased something online, the business would like to understand our experience. When data is collected and analysed properly it can inform decisions, other times it can just be a tick box exercise. When it comes to healthcare, Covid or illness the data collected means so much more, it is a very personal thing to share isn’t it. Only share your data with those you want to.

One thing I have started to do more of is to personally feedback to those who do not ask for it especially when service or help has been very good. Just a simple “before I go, I just wanted to say thank you for your attitude/energy/helpfulness/politeness/etc…” – it makes a person’s day. Talking of which below is some feedback from our lovely members in response to the last newsletter:

“Thank you for the PSN newsletter which was so full of interest – and humour!”

“The information you have provided is useful.”

“Hello, I must send you a quick line to congratulate you on your recent newsletter 114. IT IS FANTASTIC. There you are, that’s all.”

“Your polio info in last newsletter is some of the best I’ve seen”

“All the best for moving forward into a better 2021.”

Since about 1990 you have been my ‘go to’ source of PPS info – thank you all of your support!”

As ever we are always on keen to hear your experiences, tips, or question. Also, 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

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

Polio Survivors under 65 & Covid-19 Vaccine

See ‘polio syndrome’ listed on page 10 of JCV Greenbook guidelines

https://bit.ly/3buTXyk

One of our members, Mary Kinane, spent 6 weeks and finally managed to get the attention of her GP practice – to put her finally in Category 6 for consideration as a polio survivor for the Covid-19 Vaccine.

GPs will need to search for Post Polio Syndrome on the SNOMED system but it has to be done in a specific way. It only appears when searched by:

• or	the Title postpolio syndrome

• one of these synonyms:

– Postpolio muscular atrophy

– Post-polio progressive muscular atrophy

– Progressive muscular atrophy following poliomyelitis

– Postpolio syndrome

To be clear it does not appear if just “polio” or “post-polio” or “Post Polio” is searched for as these are not included in the above list of synonyms.

The SNOMED CODE for Post Polio Syndrome title, description and ID are listed below: Name: Post poliomyelitis syndrome (disorder) See more descriptions.

Concept ID: 31097004 Description ID: 52052015

We would like to introduce you to another line of support available for those who have a neurological condition (Post Polio Syndrome) or care for someone who does.

Brain & Spine Foundation are working with the Neurological Alliance and currently offer telephone, email and peer group support.

Call the free, professional Helpline on 0808 808 1000 (Monday – Thursday, 9am – 4pm) Email helpline@brainandspine.org.uk

Website: https://www.brainandspine.org.uk/supporting-you/online-support-groups/

Problems with my Callipers by Zsuzsanna Snarey

I have callipers for both legs to prevent the hyperextension of my knees caused by weak quadriceps muscles. Although I was paralysed by polio at the age of eight I did not have to wear callipers, or rather my mother did not agree with the doctors that I should wear them, instead she sat by my bed lifting up my limp legs and encouraging my to try and hold them. She persevered doing daily exercises with me for over a year until I finally managed to take a few steps with crutches. Then she found a physiotherapist qualified in the Sister Kenny Institute in the US who further rehabilitated me so that I was able to discard the crutches and only use one stick outdoors. In the house I did not even need a stick. I arrived in England from Hungary at the age of fifteen, finished school and university where I met my husband, got married and brought up three daughters while teaching in various schools.

I noticed some problems with my hyper-extending left knee when I was about 60 years old and found an advert in the British Polio Fellowship magazine for the ultra light UTX callipers made in Holland by Ambroise. At that time my husband had private health insurance from his work at Pfizer in Sandwich and I was able to see an orthopaedic surgeon within a week instead of waiting 9 months. He agreed that a calliper was the best solution and I was measured up by a representative of Ambroise in my home. The calliper was delivered soon after. I had to take it to the Orthotics Department where I was sternly reprimanded for jumping the queue. Eventually it was agreed that I could have a spare so that I was not left without one when it was returned for refurbishment. This had to go through RSL Steeper and took about 1-3 months.

A few years later my right knee started hurting. My GP recommended an X ray and he put me on painkillers for arthritis. But I knew that the pain was caused by hyperextension. Nevertheless it took me two years before I was allowed to have support by a UTX calliper. [The X by the way stands for Intelligent Knee Support or IKS in Dutch. The UT stands for The University of Twenthe where Nils Van Leerdam worked on it for his Ph.D.] Originally Dr Robin Luff told me at the Lane Fox Unit that having two callipers was not an option for me. He recommended a Chinese knee operation.

Now I had two callipers and two spares but the second calliper had to be returned several times for adjustments because the way I was measured was not accurate. In final desperation in 2018 we booked a crossing and drove to Enschede near the German border of Holland to be properly measured by Nils van Leerdam for making the callipers a better fit and for two new callipers. We stayed for 3 days while small adjustments were made.

Last November I noticed a small crack in the metal and took it in to Nottingham Orthotics department for posting to Holland. It eventually transpired that the Postal Department was not able to post it because Holland did not accept parcels. This seemed very strange and unlikely to me. So I picked it up from the hospital, found a large box, organised the postage and took it to the post office where it was accepted. A few weeks later I received it back from Holland, having been fixed.

In January when Brexit was finally forced on us with all the accompanying regulations, the same fault happened. The calliper had to be returned. This time I didn’t even try to take it to the hospital as I used to do, I had the box that it came in, I had approval from the Orthotics Department and from Holland for the repair and paid a delivery company DPD £22 to pick it up from my house. It was not easy to fill in the Customs Declaration forms and I had to print out seven sheets of A4 which were to be attached to the parcel. In the box where the value of the contents was declared, I put £50 for insurance purposes and prayed that it would not go astray! Two weeks later when Ambroise searched for the delivery, they found that the parcel would not be released until the payment of 20 Euros was made! This worried me because according to the HMRC, tax is not payable by disabled persons on goods which are for their disability and especially not for repair under guarantee. I wrote to my MP to question this. Before I had

received an answer, the repaired calliper was delivered but not handed over until I paid nearly £50. I think this was calculated from the declaration on the visible label that the “value was 180 euros” while the information to customs officials that it was of no commercial value, not for resale and free of charge was folded under and not visible to them.

I have been trying to get a refund from HMRC which clearly states that I should not be charged anything as a disabled person. This has involved wading through numerous forms on the HMRC website, several telephone calls, being transferred from one department to another, having offers to ring me back, which never happened. I have spent two weeks in struggling to understand the reason why I was charged Import Duty and how to claim it back and I am nowhere near a solution. I have spoken with the Orthotics Department at the hospital and they are having similar difficulties to post things to destinations outside Britain. There is a form C285 which asks me to check regulations after January 1st 2021 with several numbers which I don’t have. I am asked to send the completed form and supporting evidence to the National Duty Repayment Centre. [address not provided] and wait for the outcome within 30 working days. These problems are all the result of Brexit and are designed to frustrate and annoy people.

What I have learnt is that the correct customs declaration forms have to be filled in before posting such as CN22 for articles below £270 or CN23 for articles above £270 in value and the parcel should be clearly marked GOODS FOR PEOPLE WITH DISABILITY: RELIEF CLAIMED. Then it may have been accepted by customs and I may not have been charged. I have found out last week that even a letter to Hungary which now costs £1.70 requires a customs declaration form signed and attached to the back of the envelope. No wonder people have stopped sending letters.

https://en.wikipedia.org/wiki/Elizabeth_Kenny

https://www.ambroise.nl/en/ https://www.gov.uk/guidance/pay-no-customs-duty-or-vat-on-goods-for-disabled-people

Zsuzsanna Snarey Trustee PSN zsuzsanna.snarey@poliosurvivorsnetwork.org.uk

As I look at the way our world has been going these days, people blaming the world for their problems, it makes me realize what it means to be a polio survivor.

We not only survived the polio virus but we survived in a world where we were different but we didn’t allow that difference to define us. We didn’t blame the world for our disabilities but we worked so hard to prove to the world that we could do it, and we did. in fact I believe it made us stronger.

Now we’re facing another issue from having had the polio virus. And that strength is what will get us through this one. I am thankful for the doctors and the people that have worked so hard to bring attention to the world about post polio syndrome.. I am thankful for these networks online that help me understand what’s going on with me and give guidance at times as to what I can do, or how to deal with it.

So in close, be proud that you are a survivor!

Kathy Hazel, Polio Survivor (Facebook polio list)

Polio Survivors do you discuss post-polio issues with your friends and family?

It is not easy for us, I am sure you will agree, but did you realise it is also very difficult for our family, our friends and even our GP’s and other health professionals we had before we started with PPS issues.

In early October 1988 I as working four part time jobs to 60 plus hours a week. 12 Voluntary and bringing up two children on my own. On 10th October 1988 I slipped on a wet patch on a school floor and although previously this would not have caused issues for long this time I started to have pain, fatigue, and actions of daily living became harder and harder. I did not find PPS existed till November 1995 and at last it was added to the equation of what might be wrong with me. I started the Charity and the phone was in my home. It never dawned on me that my family only heard my side of phone conversations. They rarely asked questions and I did not discuss anything with them about what the future would hold.

It was not till 8 years later in 2003 as I was finishing a PowerPoint presentation for a PPS conference in San Francisco that my daughter walked in. I very proudly asked her to look and tell me what she thought. She read through it all and then told me to add another slide.

“Add this Mum”

She told me to type ‘These are not only your problems. They are mine as well. As you have got worse, things are more difficult at home for me.

You cannot do the things you used to do with your family and friends and the frustration that you suffer is shared by us as well.

There is so much to do in your life, my life and our house each day that it is not possible for me to fit it all in.

There are a lot of things that you are upset about not being able to do at this age. This also applies to me. I am 27 and I still live at home… woopey do… There are life experiences that I wanted to have not living in Lincoln, working abroad and travelling…etc.’

Do we ensure we allow our family to tell it like it really is ?

I had not realised that I had not discussed anything PPS with my two children. I had not realised that they were wondering how their lives could change from what they hoped as I continued to deteriorate.

I told my kids that they should live where they wanted to and do the jobs that they wanted to do. I would manage as I had always done. My son lives in North Kent and works for South Eastern Trains and my daughter travelled to Canada to meet with a Canadian Roller Derby skater she had met online. They married and we have a ten year old grandson. Shortly they are to be moving from Alberta to Vancouver Island, British Columbia.

My daughter reminded me on this weekend’s live chat about the day she came home and found me crying. I pretended that there was nothing wrong but she looked round the room and noticed a form that I had been trying to fill in that in frustration I had just thrown across the room.

She picked the form up. An application for a Disabled Facility Grant that I had to complete to get the funding to apply for the wet room the NHS OT in 1998 said I needed. She started to read down the front page and said, “I will fill this in in pencil. Say nothing but answer my questions.” I was annoyed but could see from the expression on her face that I better do as she asked.

She added name and other details and turned the page over. She read out loud “Is this a benefice of an ecclesiastical estate?” And exclaimed what on earth is that [well words like that] I explained that ecclesiastical was related to churches. A few pages later she asked “Do you have an invalid [she pronounced this in valid] carriage?” “What on earth is that?” I explained she had mis pronounced it. She then flipped through the remainder of the pages stating “how many decades ago was this form developed?”!!

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.

Current status of poliomyelitis in Latin America Revista chilena de infectología | Scielo.

November 09, 2020; Rev. chil. infectol. vol.37 no.6 Santiago Dec. 2020

Abstract.

Oral poliovirus vaccine (OPV) has been instrumental in controlling the polio epidemic, and stands out for its safety, efficacy, ease of oral administration, and low cost. However, despite these advantages, as it is a live attenuated virus vaccine, there is the possibility of mutations that confer neurovirulence. Therefore, surveillance for acute flaccid paralysis (AFP) is important, whether associated with live vaccines (VAPP) or vaccine-derived viruses (VDPV). In this review we present important data from Latin America in recent years, where data on VDPV of community transmission, of ambiguous origin and associated with immunodeficiencies are reviewed. Due to the presence of VDPV, it is important to strengthen the epidemiological surveillance system for AFP, with data much lower than those recommended in recent years in the Americas. Additionally, it is essential to improve vaccination coverage to reduce the number of infants at risk of acquiring poliomyelitis. Consequently, we present the vaccination coverage rates with the inactivated vaccine against poliovirus (IPV) in the region and analyze the vaccination programs against poliomyelitis in accordance with the recommendations of the Latin American Society of Pediatric Infectious Diseases (SLIPE; minimum 3 doses of IPV) and the WHO Strategic Advisory Expert Group (SAGE) on Immunization (minimum 2 doses of IPV). The study concludes with recommendations from the authors for the change from OPV to exclusive use of IPV, to increase vaccination coverage and to strengthen surveillance for AFP in the region.

Original Source Article – Current status of poliomyelitis in Latin America (conicyt.cl)

Emerging and Re-emerging Infectious Diseases in the WHO Eastern Mediterranean Region, 2001-2018 | International Journal of Health Policy and Management.

4 February 2020; Accepted: 8 February 2021; ePublished: 6 March 2021

Abstract.

Background. Countries in the World Health Organization (WHO) Eastern Mediterranean Region (EMR) are predisposed to highly contagious, severe and fatal, emerging infectious diseases (EIDs), and reemerging infectious diseases (RIDs). This paper reviews the epidemiological situation of EIDs and RIDs of global concern in the EMR between 2001 and 2018.

Methods. To do a narrative review, a complete list of studies in the field was we prepared following a systematic search approach. Studies that were purposively reviewed were identified to summarize the epidemiological situation of each targeted disease. A comprehensive search of all published studies on EIDs and RIDs between 2001 and 2018 was carried out through search engines including Medline, Web of Science, Scopus, Google Scholar, and ScienceDirect.

Results. Leishmaniasis, hepatitis A virus (HAV) and hepatitis E virus (HEV) are reported from all countries in the region. Chikungunya, Crimean Congo hemorrhagic fever (CCHF), dengue fever, and H5N1 have been increasing in number, frequency, and expanding in their geographic distribution. Middle East respiratory syndrome (MERS), which was reported in this region in 2012 is still a public health concern. There are challenges to control cholera, diphtheria, leishmaniasis, measles, and poliomyelitis in some of the countries. Moreover, Alkhurma hemorrhagic fever (AHF), and Rift Valley fever (RVF) are limited to some countries in the region. Also, there is little information about the real situation of the plague, Q fever, and tularemia.

Conclusion. EIDs and RIDs are prevalent in most countries in the region and could further spread within the region. It is crucial to improve regional capacities and capabilities in preventing and responding to disease outbreaks with adequate resources and expertise.

Original Source Article Emerging and Re-emerging Infectious Diseases in the WHO Eastern Mediterranean Region, 2001-2018 (ijhpm.com)

Virtual Support for Polio Survivors

Not all meetings are each week so please check with the group contact.

The UK times are approximate – please check times and how to access details with the organiser also a handy time zone converter is here https://www.thetimezoneconverter.com/

Donate to PSN by using PayPal donate link:

https://bit.ly/2KzyAyE

DAY	GROUP	UK TIME	CONTACT DETAILS
Sunday	Nebraska Polio Survivors	8.00 pm	npsa.org@hotmail.com www.nepolioorg.ipage.com/
Monday	Polio Quebec – adapted Yoga	8.00 pm	monaarsenault@gmail.comassociation@polioquebec.orgwww.polioquebec.org/eng/
Tuesday	Polio Quebec	12.00 am midnight	monaarsenault@gmail.comassociation@polioquebec.orgwww.polioquebec.org/eng/
Wednesday	March of Dimes CanadaMarin County Polio Survivors	7.00 pm9.30 pm	bstupar@marchofdimes.cawww.marchofdimes/ca/enca/programs/postpolioFrancineAllen@comcast.net
Thursday	Boca Area Post-Polio SupportMarin County Polio Survivors	6.00 pm9.30 pm	bappg@aol.comwww.postpolio.wordpress.com/FrancineAllen@comcast.net
Friday	Polio Survivors Network	Varies	info@poliosurvivorsnetwork.org.uk
Saturday	Atlanta Post-Polio AssociationLand of the Sky Post-Polio SupportPolio Support Group San Gabriel ValleyWorld-Wide fellowship of Polio Warriors	7.00 pm5.00 pm6.30 pm11.00 am 5.00 pm	nicolsw@locinc.com or appaemail@gmail.comemcanallen@gmail.comhopemle@juno.com www.facebook.com/1ppssgvwie/peter@poliowarriors.org. www.poliowarriors.org/

Polio Australia (steph@polioaustralia.org.au) please contact for information of events.

Polio Survivors Ireland provide a telephone conference (fsw@ppsg.ie)

Post-Polio Health provide ideas for support group discussions (info@post-polio.org)

This list is not exhaustive, other groups may exist in your local areas too.

Joke: While cooking I accidentally rubbed some herbs in my eye …

… I am now parsley sighted!

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

Phone Enquiries – Hilary Boone – 01522 888601

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

Please contact us if you would like to help with our work

Management Committee & Operations

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

Editors Note: Articles from Polio Survivors and Health Professionals welcomed

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

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

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 7/12 [115] May 2021	Page 20
© 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

because WE’RE STILL HERE!

www.post-polio.org

PHOTO OF OUR VIRTUAL COFFEE AND CATCHUP ON 12th MARCH 2021

Post Polio Matters Volume 10 Issue 7 Read More »