Newsletter – Page 6 – Polio Survivors Network

Post Polio Matters Volume 7 Issue 12

MAY 2013

Vol 7, Issue 12

The Polio Survivors Network Newsletter – Volume 7, Issue 12 n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

Post-Polio Health International PPS Conference 31.5 to 3.6 2014 St. Louis Missouri, USA Page 12

Dr. Perry Richard Daggett

P.S.N. Annual General Meeting now September 14th 2013 in Lincoln

From the critically-acclaimed author of Angel of Death comes Paralysed with Fear, the story of polio

a powerful and engaging narrative of mankind’s battle against polio.

Excerpt from the Lancet, 25th May 2013 Volume 381, Issue 9880, Pages 1805—1806 By Paul Offit

“Williams doesn’t shy away from the science. He begins by detailing the discovery of poliovirus and its method of spread in a manner so dramatic that we can’t wait to turn the page, even though we already know the ending”

http://preview.tinyurl.com/oyzeqpk

Polio, with its haunting images of disabled children and the iron lung, was one of the iconic diseases of the 20th century. In the 1950s, only the atomic bomb frightened Americans more than this debilitating scourge which could break into any home and paralyse or kill a healthy child. Now, vaccination has pushed polio to the brink of extinction – but its complete eradication may still elude us.

Mankind’s struggle to defeat polio was one of the grand challenges of modern medicine. It was also a battleground between good and bad science, powerful personalities and warring ideologies. The result is a compelling story, rich in twists and paradoxes.

Gareth Williams takes an original and uncompromising view of our journey with polio, from the first descriptions of ‘morning paralysis’ to the no-holds barred race to develop a vaccine and the front line of today’s eradication campaign. Paralysed with Fear is the first comprehensive history of polio for over 40 years. It is an enthralling story which will grip the reader from beginning to end.

Gareth Williams is Professor of Medicine and former Dean of Faculty at the University of Bristol, UK. He has written or co-authored over 20 books, including the Textbook of Diabetes (BMA Book of the Year, 1997) and has contributed to more than 30 others, including the Oxford Textbook of Medicine. Inspired by the life of Edward Jenner, Gareth wrote Angel of Death: The Story of Smallpox, which was shortlisted for the Welcome Trust Book Prize in 2010.

Palgrave Macmillan book publisher are offering Polio Survivors Network members a special discount of 20% off Paralysed with Fear [hardback published 27th June 2013, £20.00 down to £16.00] when you order the book direct from www.palgrave.com and enter promotional code WORLDPALGRAVE20

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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.

org.uk/ Tel:0191 284 048

Contents

Page 2 Page 3 Page 4 Page 5	Contents, New members and DonationsEditorialMessage from the Trustees and Meet Trustee Dot Ives.In Between Two Worlds, from the ChairSimon Parritt, C.Psychol, AFBPsS, MSc, BSc(Hon), BA, CPsSC, MBACPPolio, Cholesterol and Cardiovascular Risk by Life MemberProfessor of Biology, Eddie Bollenbach, M.A.Jacquelin Perry MD, A personal tribute by Richard DaggettRancho Los Amigos PPS Support Group.
Pages 6/7
Pages 8/9
Pages 10/11 Medical articles by Dr. Perry in the Lincolnshire Post-Polio
Library; Single Action Manual Muscle TestingPoints to Ponder.Tips and Tricks on Travelling as a PPSer by Life Member Jann Hartman.European Polio Union AGM in Tullamore, Co. Offaly, EirePHI’s 11th International PPS Conference, Promoting Healthy Ideas. St. Louis, MO, USA.Gift Aid information from Treasurer Gillian Bryan.PPN; Neuro Alliance Survey; Aspects of PPSW.H.O.– Wild polio virus in the Horn of Africa.ATOS, ESA and Polio. by Life Member Chris Salter, owner Post Polio News.What to expect from your doctor, a guide for patients. Pages 1 to 4 of a General Medical Council Leaflet.PSN and Contact Information.Jacquelin Perry, MD. The Grande Dame of OrthopedicsSupport PSN – buy Val Scrivener’s Photo Cards.
Page 12 Page 13
Page 14 Page 15
Page 16 Page 17
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Page 19 Page 20 Page 20

MOTABILTY ROADSHOW 27 to 29 June 2013

Telford

Shropshire

Telford International Centre TF3 4JH Tel: 0845 241 0390

Welcome to New Members Philip Walker & Peter Thwaites

Thank you to all members who have recently renewed and to all those who have made donations towards our work.

[We apologise but names and total amount of donations are unavailable due to a computer glitch with a file that could not be sorted before the deadline to take to printers. The information will be included in the next issue]

Val Scriveners Card Sales

Help our funds by ordering – info on back page. We have no paid employees.

Donations & offers of time, no matter how small, towards our work are always welcome.

Disability North DNEX

25-26 September 2013

Newcastle

Racecourse

http:// disabilitynorth. NAIDEX

SCOTLAND

18 – 19 September 2013

SECC

Glasgow

www.naidex.co.uk /NaidexSco/

Tel:

0207 728 4681

© Polio Survivors Network – Volume 7, Issue 12 – MAY 2013	Page 3
Polio Survivors Network – MeetingsIf you have any matters you would like us to discuss at our meetings please get in touch via hilary.boone@poliosurvivorsnetwork.org.ukor Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

Editorial by Hilary Boone

Simon Parritt has kindly agreed to take the role of our Chair and Dot Ives has taken over the role of minute taking. Barbara Taverner offered to became a Trustee then had to undergo a major operation which takes a few months to recover from. As soon as she is back on track and able to join us she will be in touch. On behalf of members I wish her a speedy recovery.

The date of the AGM [Annual General Meeting] has been changed to Saturday 14th September at a venue in Lincoln. Actual times will be fixed when we hear back from you as to how many members think they would be able to attend and how far they have to travel. Following the AGM and a buffet lunch we will spend the next two hours providing information – from up to two speakers – with question and answer time and reporting in the Nov. newsletter. The theme will be ways to help manage a PPS Life. As soon as we know how many members will need accommodation we will arrange this and as in previous years we will join together Friday and Saturday evenings. [Please complete the sheet enclosed with this Newsletter and return it to us – address label provided – by June 20th 2013. We are not asking you to make a firm commitment to attend, but the information will help us plan the day more easily. Thank you]

Front cover. We were contacted by Publishers Palgrave regarding a new book from Gareth Williams, Paralysed with Fear, the story of Polio. We have an advanced copy and finding it fascinating reading. Note the quote from todays Lancet. We have also been sent a pre copy of another book on Polio due to be published in October, more information on this in the next newsletter. More on books. One of the PPS groups on Facebook referenced two new books “Limping through Life: A Farm Boy’s Polio Memoir by Jerry Apps” which I have just finished reading on my IPad. A great read. I have just downloaded Kindle version – £3.35 from Amazon. “Too Early for Flowers:- The story of a Polio Mother” by Kurt Sipolski. I remember almost nothing about my polio, age 5, and recovery years. When I first raised the issue of my PPS with my parents they were horrified and did not want to discuss it. They lived in North Devon on a hillside. Off to the bakers I stopped to get my scooter out of the car and my mother said “surely you don’t need that thing to get to the shop?” I said, “No, but I will need it to get back up the hill” When I saw a photo of parents carrying a limp child into hospital, I realised that I was opening their closed box of memories. PPS is tough for many people not just us.

Back Cover. Dr. Jacquelin Perry. The Grande Dame of Orthopaedics and an expert on Polio and Post Polio Syndrome passed away on March 11th this year. At 94 and suffering from Parkinson’s she had retired but still saw ‘my polio patients’ at the Friday Clinic. Read Richard Daggett’s personal tribute starting on page 6. I met her on four occasions at three PPS Conferences and when Richard and I stayed at Rancho Los Amigos in 2003. It was good to thank her in person for the help she gave us prior to Richards Rotator Cuff Surgery. See Page 10 and 11 for information on her medical articles in the Lincolnshire Post-Polio Library and how we have benefited from her knowledge.

Have you noticed how many of our newsletter articles over the years are by Members and Polio Survivors and from contacts we have made with other PPS Groups. This issue, Simon Parritt a Chartered Psychologist and PSN’s new Chair. [pages 4, 5] Life Members Professor of Biology Eddie Bollenbach. M.A., [pages 6,7] and Jann Hartman [page 13] Jann has presented at one of our AGM’s and at many other PPS Conferences. Dot Ives, a new Trustee and Early Support Inclusion Co-ordinator, introduces herself [page 4]. Past issues have included articles from many other members including Dr. Marcia Falconer, Ph.D., a Virologist, Dr. Ruth Bridgens a Medical Sociologist, Zsuzsanna Snarey, BSc MSSCh MBChA , a Surgical Chiropodist. How many other members have qualifications, hobbies, or would just like to share the story of their polio or anything else of interest to members? Deadline next issues is August 1st.

MESSAGE from Polio Survivors Network’s New Chair Simon Parritt, on behalf of the Trustees.

The past year has been challenging on a number of fronts and PSN has been reviewing its role and future direction. As a members’ organization it continues to provide advice and information where possible to its members and others who have had or think they may have had polio and are experiencing problems now. This has been through the newsletter and also personal responses to enquiries. It is regretfully still true that, although there is a body of knowledge about post polio, it is often not disseminated amongst to professionals who we come into contact with.

Our membership has remained more or less static over the past year and the kinds of issues that have arisen have been the basis of a proposed project for the coming year. The project would attempt to address the paucity of knowledge around polio assessment and rehabilitation amongst health professional through short video teaching modules on specific areas that are the most often, not well understood. We intend to work with other professionals to build up an expert patient led teaching and information resource that will begin to redress the lack of knowledge around such issues as manual muscle testing and respiratory issues.

We hope that the past year’s reflection and examination of our role and function, will form the basis for a focused project that will directly impact on health professionals knowledge and understanding of polio and will therefore benefit our members and other polio survivors.

Simon Parritt, simon.parritt@poliosurvivorsnetwork.org.uk

[See article on opposite page]

Meet Trustee Dorothy [Dot] Ives.

I was born prematurely in 1955 in Salford, Lancashire and weighed the grand total of 2lb 1oz. In 1956, I was rushed to hospital with suspected meningitis, as this did not materialise I was sent home as a ‘fussy baby’. When I didn’t learn to walk or fell over when I attempted to at around two years of age my family discovered that I had one leg shorter than the other. Back to the hospital who belatedly diagnosed poliomyelitis. Fast forward to 8 years old where I had ‘tendon replacement’ surgery. This was successful and I went on to lead a ‘normal’ life, no more limping, wearing built up shoes and having scabby knees from falling over!

As far as I was concerned I was cured and forgot all about polio and my ‘gammy leg’, mind you, I was still prone to falling over!! During my late twenties I slipped a disc in my back as a result of lugging playgroup equipment in and out of a church hall cupboard. Many years of back pain, sciatica, bursitis, tendonitis ensued with increasing fatigue and failing muscle strength. This was put down to my age! I was only in my mid 40’s. From being able to swim at least 30 lengths I can now barely manage a length!

I had never heard of post polio syndrome until I attended a muscular skeletal clinic in 2006 with my back problems and the Consultant muttered about my scar on my right ankle and how I had classic ‘polio feet’!!!!!! The rest as they say is history!!

In spite of smashing my ‘good’ left ankle in 2009 along with getting breast cancer I still manage to work full time and hobble along with my two bulging discs…. Sciatica…etc etc. I guess I am still one of the ‘in denials’ really when it comes to PPS and stubbornly carry on. I recently became a trustee of PSN and am still very much a novice! I know though, that when I was diagnosed with PPS I could not have managed without the valuable information from PSN and the Lincolnshire Post-Polio Library.

Dot Ives, dot.ives@poliosurvivorsnetwork.org.uk

IN BETWEEN TWO WORLDS

As a psychologist and a polio survivor I have been on both sides of the divide. Working in hospitals and with GPs and social services, as a psychologist, I know what a delight it is achieving the best and how frustrating not to be able to offer the best for my patients. I know that some patients get the best, whilst others can be victims of their condition, circumstance or lack of knowledge of how to access what they need.

As a patient myself for nearly 60 years, I know what a difference it makes to, not only to my physical health but my sense of well being and quality of life when I am lucky enough to be in a collaborative, honest, and open relationship with my doctors and healthcare professionals. In contrast to the situation I face when needing to accept help and treatment from those with limited experience of polio and very poor interpersonal skills. I wish the later were the exception.

To be fair, I am only too aware that health professionals have limited time and constrained knowledge to offer. I understand it but also feel frustrated and scared by it. Being at the mercy of a service, a physician or a team who you sense are going through a protocol but not listening to me as a person doesn’t help my anxiety. Failing to explain the whole picture and worst of all an inability to admit their level of ‘not knowing’ further frustrates and annoys me. I find this a very uncomfortable place to be. Does being a psychologist help? Maybe but sometimes I wonder, as I sit in the waiting room or come away from hospital with my feelings of frustration and anxiety raised.

I wanted to say something personal about how it feels to experience being a psychologist with declining physical abilities and also cope with input and advice from people who in other circumstances would be my friends and colleagues. Do I raise my hand and say, “hey, hold on its me, I’m not just a patient!” And then I think what I am saying “NOT JUST A PATIENT”.

I find it hard to manage these feelings whilst also being ‘The Expert’ on myself, so important in today’s healthcare environment. I am only too aware how to approach medics and assessments with the confidence of self knowledge whilst also being open minded and ready to hear and accept the professionals’ opinions about my health and prognosis. But losing abilities so hard fought to regain years ago involves sadness, disappointment, feeling of failure and often anger. I might say as a psychologist that the cognitive and feeling part of me, make uneasy bedfellows in the medical setting.

Emotions do not comfortably fit within the medical approach to disability. I know this from working as a psychologist in hospitals. Questioning medical logic, diagnosis and expressing physical concerns are seen as somehow less valid when delivered from an anxious or emotional patient than when from a calm and compliant one. Am I paranoid that showing, let alone discussing my anxiety in the consulting room, places me in a more vulnerable position?

And finally, if I do chose and am able to cover up my emotional side, how much do I exercise my medical and polio knowledge? How many health professionals are able, or want to, work collaboratively with a patient whose knowledge may be quite extensive, without feeling at best irritated or time pressured or at worst threatened and de-skilled ?

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

Chartered Psychologist

HCPC Registered Counselling Psychologist www.sp-psychology.com

What do you call a dinosaur with an extensive vocabulary. A Thesaurus. Broken Pencils are pointless.

What does a clock do when its hungry. It goes back four seconds.

When you get a bladder infection. Urine trouble.

I stayed up all night to see where the sun went. Then it dawned on me.

POLIO, CHOLESTEROL AND CARDIOVASCULAR RISK By Life Member Professor Eddie Bollenbach, Connecticut, USA.

There are new and potentially valuable developments in the area of prevention of cardiovascular disease. This has special importance to polio survivors because of our additional risk factors due to our age, sedentary lifestyle, and in many, obesity along with it’s consequent problems. Despite our risk many of us have a high cholesterol number and are intolerant of statin drugs due to their effect on muscles, particularly overused muscles.

We all know that high cholesterol, particularly the fraction of low density lipoprotein (LDL) in cholesterol, is a risk factor for cardiovascular disease. We also know that LDL alone, particularly if it is not inordinately high, is not a foolproof way to predict who will develop coronary artery disease or stroke. It is also true that some people with a normal or low cholesterol can have a heart attack and have significant cholesterol clogging their arteries despite low cholesterol numbers. So high numbers are associated with more heart disease but there must be other factors at work.

The more risk we have the more valuable lowering cholesterol is to us. For example, for a person with no risk factors the number of people needed to treat to save one individual with statins is 50 people. But for someone with a 50% chance of developing a heart attack in the next few years the number needed to treat to save one individual is only 4. So, given the difficulty some have with statins and their value to an at risk population we should all be aware of new research which may help us prevent cardiovascular disease.

RED MEAT AND HEART DISEASE

A new study at the prestigious Cleveland Clinic this April may shed some light on an additional factor that, according to researchers, is predictive of the development of cardiovascular disease with 10 times more accuracy than cholesterol numbers. But no sooner was their work published this April than some inconsistencies threw doubt on their findings.

Here is what happened. Mice fed red meat had more atherosclerosis than they normally do. Also, retrospectively, humans who eat a lot of red meat are more prone to heart disease. The researchers found that a unique chemical shows up in the blood of both mice and humans after consuming red meat. The chemical is TMAO, short for Trimethylamine oxide. The amount of this chemical in the blood is 10 times more predictive of heart disease than cholesterol alone. Mice fed red meat develop atherosclerosis and have high TMAO numbers and when a human eats a good steak TMAO quickly shows up in the blood. There are other absorbing aspects to this story. The researchers found that in both mice and humans TMAO is not produced in vegetarians after a meal, even a meal of red steak. They also found that TMAO is produced by bacteria in the gut that chemically digests red meat. When they gave the mice, or humans, antibiotics to remove much of the gut bacteria subjects did not respond to red meat by producing TMAO. Also, as mentioned above, vegetarians who were given red meat did not produce TMAO. The researchers surmised that the type of bacteria in the gut of red meat eaters is different than the bacteria in the gut of vegetarians, and in vegetarians the bacteria that work on digestion are different than the bacteria at work in the gut of meat eaters. The bacterial flora in meat eaters produces TMAO but the bacterial flora in vegans does not, even when they are fed red meat. Red meat here is beef, pork lamb, mutton, duck, and venison. TMAO is much lower in the blood when fish or chicken is eaten. All of this points to better prediction of risk for heart disease. The researchers pointed out that there is currently no clinical test for the levels of TMAO in the blood but, if their study results are confirmed, there soon will be.

THE CARNITINE CONNECTION?

Now comes the mysterious part of this riveting saga. Researchers mapped the chemical steps required to produce the TMAO by bacteria in humans and mice. A substance in meat called carnitine (carn for carnivore referring to red meat) was tagged as the culprit. So, a person who

eats red meat and has bacteria in the gut that digests red meat digests more carnitine than those who don’t eat red meat. Vegetarians have much lower carnitine intake as do mice fed a vegetable diet. The researchers expressed concern about people who take carnitine supplements or drink energy drinks which have carnitine in them. But, mysteriously other unrelated studies have shown that carnitine is actually beneficial to the heart, it sometimes is even helpful in maintaining a proper rhythm after an acute myocardial event. And, strangely, despite the above study, people who take carnitine supplements generally benefit from those supplements as far as heart disease is concerned. So which is it? Is carnitine good for the heart or not? A new study in the April 25 New England Journal of Medicine showed that metabolism of Lecithin is the culprit in the production of TMAO but more studies are needed.

These kinds of mysteries are always interesting. Obviously carnitine itself appears not to be involved in the production of deleterious TMAO. Or, something else in red meat (lecithin), together with carnitine, may result in TMAO production. Or, the researchers interpreted their data incorrectly and must go back to the drawing board. It will be interesting to follow this development to see where it goes.

There are two other chemicals associated with TMAO in the blood of meat eaters and are thought to be associated with atherosclerosis: betaine and choline. The scientists also warned against eating lecithin, a component of meat and eggs because it too can lead to the production of TMAO indirectly.

So, although exciting, the research has to be reproduced in other labs. Then we may know that red meat should only be eaten in moderation and if we are careful of our intake we may protect ourselves better knowing this and also keeping a low cholesterol number. Time will tell.

NEW POTENTIAL CHOLESTEROL DRUGS

There is also new work being done on lowering cholesterol with two drugs other than statins. These drugs are in development and are now being used in clinical trials. They inhibit the expression of a gene for making LDL cholesterol. Statins have an adverse effect of causing muscle soreness and muscle disease in some people. It remains to be seen if this new approach will also result in muscle problems. The introduction of these new interventions may allow people to get to lower cholesterol numbers to reach goals without the use of statins.

The second approach is by interfering with cholesterol receptors in the body. By altering receptors on various surfaces in the body researchers found that more cholesterol can be removed from the blood. Currently the goal of individuals who are advised to lower cholesterol is to get below 100 for LDL. With these two new approaches it may be routine to lower LDL even more. In indigenous people, like aborigines, LDL cholesterol is around 38 and they do not get heart disease. So it may be possible to lower cholesterol with or without statins to much lower levels. Since competitive athletes and polio survivors develop muscle problems with statins more often than those who do not use their muscles as intensely, these novel ways of lowering LDL may prove invaluable. So some questions remain but the outlook for risk reduction is more promising than it was even a couple of years ago.

Ingestion of red meat may be more important in heart disease than cholesterol itself. And, there are two new ways to lower cholesterol without statins. Stay tuned, we will soon see more on all of these issues.

REFERENCES

1. W.H. Tang, et al “Intestinal Microbial Metabolism of Phosphatidylcholine and Cardiovascular

Risk” New England Journal of Medicine, 368, April 25, 2013

2. Kolata, J.” Culprit in Heart Disease Goes Beyond Meat’s Fat” The New York Times,

April 25, 2013

3. James J. DiNicolantonio,-Carnitine in the Secondary Prevention of Cardiovascular

Disease:Systematic Review and Meta-analysis Mayo Clinic Proceedings,

April 12, 2013

Jacquelin Perry, MD

May 31, 1918 – March 11, 2013

Physician – Mentor – Advocate – Friend A personal tribute by Richard Lloyd Daggett

I join with others of the polio community in mourning the loss of an irreplaceable treasure, Dr. Jacquelin Perry, who died at her home in Downey, California on Monday, March 11, 2013. She had no immediate family, so I believe I may have known her longer than anyone. I’d like to tell you a little about her life, and why she had such an impact on polio survivors.

Dr. Perry joined the Army in World War II and trained to be a physical therapist. She later said, “When I started out, I had to convince the Army that I was completely unable to write, because if they thought I could write they would have made me a secretary.” She said she enjoyed being a therapist, but her real desire was to become a doctor.

After the Army, she used the G.I. Bill to enter medical school, completing a residency in orthopedic surgery. Dr. Perry wrote the Foreword to my autobiography, and in it she wrote, “Dr. Affeldt, as director of the (pulmonary) unit (at Rancho Los Amigos), also had concern for loss of limb and spine function and, especially, the patient’s inability to sit erect. He recruited an orthopedic surgeon and former classmate to assume the task of finding a solution. Dr. Vernon Nickel agreed to come to Rancho but, because of his busy private practice, he would need help to accomplish this goal. His brother, Eldon Nickel, also a physician, recommended one of his classmates who was just finishing a residency in orthopedic surgery and was not inclined to open a private practice. I was that person. I was pleased to join the orthopedic staff at Rancho in July 1955, and my involvement continues.”

I was a fifteen year old patient at Rancho when she joined the staff, and I can tell you that she scared the bejeebers out of me. It was obvious that she knew her craft, and that her goal was the improvement of her patients, but she was completely focused on the task at hand. I was apprehensive around all orthopedic surgeons, but Dr. Perry was at the top of my “avoid at all costs” list. When she added instructor to her many talents, Dr. Perry continued to be an intimidating presence. Many of her former students, including doctors, therapists, and allied health professionals, have remarked on her insistence for perfection.

In November 1955, Dr. Perry and Dr. Vernon Nickel operated on my spine, fusing most of my vertebrae. This was before these two doctors perfected the “halo” apparatus they designed for spinal fusions on polio patients, and now used on many other patients. Their halo device allowed surgeons to stabilize the spine of the patient and provide for some correction of a curved spine. The photograph shows Dr. Perry, left, and Dr. Nickel, right, operating on the spine of a young polio patient wearing a halo device.

Without the halo they could not correct my curvature, but they stabilized my spine sufficiently for me to walk unaided. I described the surgery in my autobiography: “As I was wheeled into surgery I saw Dr. Nickel and Dr. Perry. I vaguely remember someone feeling my arm and asking for a size 18 needle. In my sedated state it sounded to me like he asked for a needle 18 inches long. I thought, ‘Where could they put a needle 18 inches long in my body that wouldn’t stick out the other side?’ If I had been able, I would have run out of the operating room so fast that nobody could catch me.”

When Dr. Perry read this, she smiled and told me, “Richard, if you had gotten up from that operating table and started running, I would have run out of the room with you.”

During the 1960s and 1970s, Dr. Perry would occasionally ask me to be a “model” for various classes she was teaching. She would use me to demonstrate the benefits of a particular

treatment. I think she picked me because I lived close to Rancho, and I was so thin that my bones, and what few muscles I had, were clearly visible.

Dr. Perry was dedicated to her patients. We polio patients who were fortunate to have her treat us would sometimes remark, “Once you are Dr. Perry’s patient, you are always her patient.” She remembered all of us, and she remembered every person she operated on.

After the polio vaccines reduced the number of new polio cases, Dr. Perry used the skills she mastered treating us to treat other devastating injuries and illnesses. She studied the mechanism of human movement and wrote several books and articles on the subject. She authored the classic textbook on gait analysis. If you needed to read one book on this subject, it would be her book. She is fondly known among her peers as the Grande Dame of Orthopedics. Dr. Perry’s curriculum vitae (list of professional degrees, honors, and accomplishments), is 72 pages long. She was one of the first medical professionals to recognize the late effects of polio and publish articles in medical journals.

“We didn’t anticipate anything like this,” she said in an interview. “The people who tried hardest to be normal, and pushed hardest, have been hit more with post-polio.”

Rancho Los Amigos continued to evaluate post-polio patients in the outpatient clinics, and Dr. Perry was a constant presence. One colleague was quoted, “She would arrange her very busy travel schedule so that she would miss as few polio clinic appointments as possible. She would have the taxicab from the airport drop her off right in front of the polio clinic so that she could see the patients who were lined up and waiting to see her.”

In 1996, the Jacquelin Perry Neuro-Trauma Institute and Rehabilitation Center was opened at Rancho. This impressive three-story, state of the art facility is Rancho’s primary inpatient care and treatment unit. At the dedication Dr. Perry said, “It amazes me that I should be honored for doing the very things I enjoy.”

As Dr. Perry aged, and Parkinson’s disease began to take its toll, she cut back on her activities. But she still saw “my polio patients” in the Friday polio clinic, and she spoke to the Rancho Los Amigos Post-Polio Support Group a number of times. Her presentations were always helpful. Dr. Perry’s General Information Letter for Polio Survivors is still one of the best overviews of postpolio.

Also, as she became semi-retired, I perceived a more open and mellow person. She stood by my side at her 80th birthday celebration, and I invited her to lunch a number of times. She graciously accepted my offers.

In 1996, I was able to arrange a one hour television special about Rancho for Huell Howser’s “California’s Gold” program. Dr. Perry and Hazel Adkins, a retired physical therapist, agreed to provide the onscreen medical perspective of the polio years at Rancho. This was a very special experience for me.

Many of her friends and colleagues addressed Dr. Perry simply as “Jackie.”

I just wouldn’t be comfortable calling her anything other than Dr. Perry. She was my Physician, Mentor, Advocate, and Friend.

Excerpt from the Southern California “PPS Manager” Newsletter Summer 2013.

Editor Rick Van Der Linden writes… “When I presented Dr. Perry with the Charles D. Siegal award in 2010 her alertness was obvious. After I presented her with the award she lectured me from the podium, in front of 300 plus folks, about how I should not be “over doing” since she had diagnosed me with PPS in 1997. A true Polio and Post Polio Syndrome Pioneer, she never had any doubts about whether PPS was “real.”

Medical articles by Dr. Jacquelin Perry in the Lincolnshire Post-Polio Library.

Title: Gait Analysis Techniques www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/perry/gat.html or http://preview.tinyurl.com/ptyavt3

Title: Findings in Post-Poliomyelitis Syndrome. www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/perry/findingsinpps.html or http://preview.tinyurl.com/ovmpcth

Title: The Postpolio Syndrome – An Overuse Phenomenon www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/perry/thepostpoliosyndrome.html or http://preview.tinyurl.com/qgpfjyq

Title: Postpoliomyelitis Syndrome: Assessment of Behavioral Features www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/perry/behavioral.html or http://preview.tinyurl.com/okeks4z

Editors Note:- I first met Dr. Perry, with Lynn Singleton, at the Irish Post Polio Support Groups Conference in March 1999.

I showed her two medical reports on me the first from a neurologist stating ‘on neurological examination of the legs the left hip knee and ankle are normal’ and the second from a physiotherapist ’Quads Muscle Grade 5, Normal’ and explained that my left leg and particularly my quads had always been weak since polio. It took less than a minute, in the bar!, to examine my left leg and say ‘Your quads are a 3 at best a 3+ but I would need to examine you properly to state which.” {**see below]

Getting confirmation from one of the most highly respected PPS specialists that the medical examinations of me had not correctly graded my muscles was such a relief. I was not making it up!

In 2000 Richard was scheduled for Rotator Cuff Surgery and where else could I seek the best advice but to contact Dr. Perry through Rancho Los Amigos PPS Support Group. It was not long before I received a reply.

Dr. Perry advised that we needed to see the Post Operative Physical Therapist pre operation so that she could see how Richard moved about, and in particular used his arms, now. Next she recommended that we should isolate that arm in a sling and work out and practice how he was going to achieve all the basic actions of daily living needed post op with just one arm! It took some working out but the advice was invaluable… post operation there is pain and to have to work out how then would have been far far harder.

SINGLE ACTION MANUAL MUSCLE TESTING can over grade your muscles.

It was not long after talking to Dr. Perry that a light went off in my brain. 30 years earlier the doctor that examined me for my medical in 1969 for the police had passed me fit when I could not run or rise from a squat. I was stunned because I thought I would fail the medical, I never queried how this had happened.

But now another medical professional had done the same thing and I knew that no health professional would state anything he did not believe to be true. I applied for my medical records and found many more instances. I was being told there was nothing wrong with me because the single action test was not picking up the weakness reported. This is why we suggest that you are more specific and give an example of an action that you are now having to do in a different way that you believe is because of new weakness in some of your muscles.

Manual Muscle Testing was developed by physical therapists, Florence and Henry Kendall (Kendall & Kendall, 1949), to evaluate muscle functions for diagnostic, treatment, and insurance purposes. It is a method used worldwide. I did some self test repeated actions and demonstrated to myself that whilst I could do it the first time I could see deterioration on later repeats, time of

Polio Viruses affected the whole body to varying degrees.

4 case histories were reported in 1875 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. All had physically demanding jobs and performed repetitive activities.

Prof WJW Sharrard in the 1950’s found on autopsy that up to 44% nerve damage was seen in muscles where NO physical weakness had been found on physical examination at the time of Polio.

HEALTH PROFESSIONALS

Please ask us HOW not CAN we do an action when you assess us so we can tell it like it really is.

POLIO SURVIVORS PLEASE SEE OVERLEAF

sustaining an action. I did some more research looking for medical articles and asked two eminent PPS doctors for comment. I put this information into my PowerPoint slides.

CONFIRMING STATEMENTS by email and on Medical Articles.

Lauro S. Halstead MD – May 2002 – Director of Post-Polio Program. National Rehabilitation Hospital, Washington DC, USA – Replied ‘ 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 – Replied “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

Sharrard WJW. Muscle recovery in poliomyelitis. J. Bone Joint Surg (BR) 1955;37:63-9 – wrote “muscle grades of 3 were given to individuals with 85% denervation of the muscles”

Manual Muscle Strength Testing of the Distal Muscles. Luiese Lynch – “It does not measure the ability of the muscle to function as part of a movement pattern.“

Bohannon RW, Corrigan D. Percept Mot Skills 2000; 90:747-50 – “found that manual muscle tests of grade 5 had enormous variation in force, up to 86% of all quantitatively measured forces”

POINTS TO PONDER

From our research over 18 years we have learned that the amount of information on polio, its effect of our lives and now post polio syndrome provided by Colleges of Medicine has reduced over the decades as the numbers of people catching polio reduced. Responses to our ‘How much do you know about polio?’ were from ’its not been mentioned through ‘a half hour lecture with leprosy.’ The best example is the registrar that contacted us for help after three years of seeing many of his hospital colleagues without results broke into the conversation to say ’but I only had it in one leg’.

Do you tell EVERY health professional [including alternative therapists, dentists and pharmacists] that you had Poliomyelitis [other terms are bulbar or spinal or bulbar/spinal polio, infantile paralysis, polio encephalomyelitis] in your earlier life and that you are diagnosed with or might have the Late Effects of Polio or new issues most commonly termed Post-Polio Syndrome? Any of this could impact on the way you:-

a. Perform actions of daily living now compared to your best recovery level, that you

i. Have, or could have new weakness in muscles known to have been affected

ii. Now have or could have increased weakness in areas of my body not thought to have been previously affected

That this includes how you move muscles and joints, singly and as patterns of movement and could also involve how you swallow, breathe and/or sleep.

b. May react to some medications (including anaesthetics) in a different way especially

those with muscle relaxant or sedative properties. [Polio survivors have recorded a huge

variety of issues and whilst you may not have or get the same response discussing this

further can put your mind at rest]

c. Found and/or still find it hard to acknowledge the changes that are happening to yourself,

to the health professional, but also to your family, friends and work colleagues.

d. Find any suggestion of returning to or using equipment for the first time, asking for extra

help, applying for benefits/increased benefits, the total opposite of how you have

managed your life during recovery and stable period of function and it is extremely

difficult to accept that you have reached this stage, let alone start what the health

professional is recommending.

e. Try to ignore it but are concerned about what the future holds not only for yourself but for

your family and you find it hard to broach the subject with them.

f. You now realise that your current level of ability has reduced to such that you now need

some support and should consider applying to Social Services for an assessment of

these needs. [We know this is not an easy step to take because it seems like a

downward step but our later response to this, using aids and asking for help etc., is

usually “I now have a better quality of life and wish I had done this earlier”]

g. Have applied and qualified for support from Social Services, completed the scoring

process [RAS, Resource Allocation System – method of scoring the amount you will be

allocated for the year] been through the writing and costing your support plan [how you

will spend the money to achieve the outcomes allowed] and the financial assessment.

Whilst thankful for the benefit this has made to managing your life did you find the

process took far longer than you expected and was stressful?

The government has decreed four levels of need. Low, Moderate, Substantial [some counties have split this into two] and Critical. Each county decides the level for which they will provide funds and this can change. 2 years ago Lincolnshire decided to no longer provide funds for anyone whose needs were assessed as Moderate. Paperwork and procedures are different for each county based on national documents. Our best advice if you do not live in Lincolnshire is to contact a local User-Led Organisation in your County where you can get support from people already using the system.

Tips and Tricks on Travelling as a PPSer by Life Member Jann Hartman.

Here are some tips and tricks that I have learned along the way to help you be prepared, no matter where your travels may take you, near or far! I have travelled by air, in an RV, by ship, and on a train thru Europe and in the USA. I have had four different scooters [2 were given to me], and now use a lightweight travel scooter. Getting the right assistive devices is important for us all.., at home or for travel.

 Be very specific when explaining your needs.

 If a destination cannot meet your needs, you may need to make alternative plans.

 Have your equipment serviced before your trip, Small tweaks or replacement parts may

help you avoid problems later.

 Carry a basic tool kit, in case small repairs are needed.

 Bungee cords or zip-ties can also come in handy!

 Personalise your mobility equipment in some way so people do not assume it is offered by

the airport or attraction. I like to use post-polio stickers that I got at various conferences. I

also have name stickers under the seat {engraved would be really good for ID}. Ensure

that all pieces that come apart are named with contact details including your mobile phone

number. Some craft people have decorated their devices, added beads, painted canes –

featured in LincPIN some years ago by Ellen in Florida.

 Whenever you travel things are bound to go astray in one way or another, It is always good

to maintain a good sense of humour! Ensure you have details of where you can hire a suitable alternative en route with you.

 The proper adaptors are important. Using the wrong adaptor can ruin electronics. (Amigo

recommends a power converter that is rated at 200 watts minimum). Read your equipment

manual, it may be online too!. [Editors note: We can vouch for that having forgotten at the

end of a long flight to the UK and plugged the power lead or Richards Jazzy directly into

the mains in the UK. Phtt!… We needed to plug this into a power convertor first, but luckily

were able to use the connector on the controls instead. Would have been a costly repair.]

 Duct tape – it can fix a variety of problems!

 Check your electric wheelchair or scooter when it is delivered to you at baggage claim.

One time they brought me my base/seat/tiller but not my battery! It is important to double

check everything and make sure you have all the necessary parts before you leave the airport, just in case. [Editors note last trip to USA the baggage handlers put Richards electric

wheelchair on the luggage conveyor belt and it got stuck in the entrance flaps to the Baggage Hall!!.

 Drive slowly – many places that seem accessible at first glance may have hidden dangers.

Power can get you into trouble. Better to go slower and stay safe!

 One more thought. I like to travel to destinations more than ever. I enjoy meeting with

friends in a suitable place {AGM in England, BransonGoers yearly in June in Branson MO,

USA) or a cruise (with the Miami PPS Groups) to somewhere – or even nowhere. It is nice

to go as a group or meet up somewhere so you can do things with others but remember

you must include rest breaks.

Will be at the Post-Polio Health Conference May 31st to June 3rd 2014 in St. Louis, Missouri, USA. Be great to meet more members, do let me know if you are going to be there too.

www.ricksteves.com (esp. Graffiti wall posts on Senior Savvy and others) www.cruisecritic.com (just read, or register to post and talk to other people) www.gimponthego.com (my article on cruising and other trips)

Jann Hartman – arrojan@yahoo.com

EUROPEAN POLIO UNION MEETING & ANNUAL GENERAL MEETING in Tullamore, County Offaly – IRELAND 18th – 21st October 2013

18th October 2013

Latest arrival date in Dublin, EPU will arrange transport for delegates from a designated point (probably the airport, but yet to be confirmed) to Tullamore and your hotel. Ordinary delegates will have a free evening. Further transport details to follow.

20:00 hours 19th October 201308:00 – 10:00 hours 10:30 hours – 13:00 hours 13:00 hours – 14:30 hours 14:30 hours – 17:00 hours 17:00 hours 19:30 hours 20th October 201310:00 hours – 13:00 hours 13:00 hours – 14:30 hours 15:30 hours – until late	EPU Board Meeting – EPU directors only
BreakfastEuropean Polio Union Annual General MeetingLunchEuropean Polio Union Annual General Meeting (continued)Close of European Polio Union Annual General MeetingEPU Annual General Meeting Dinner – to be confirmed
Presentations from EPU Member Organisation – to be confirmedLunchJoin in the Irish Post Polio Support Group Celebrations with music & fun

21st October 2013

Departure from Tullamore by EPU provided suitable transport to Dublin & airport. Departure time will depend entirely on the flight times for delegates. It would be most useful if delegates could arrange their flights for mid to late afternoon so that the transport and delegates do not have to be leaving from hotels in the early hours of the morning.

General Arrangements

At this time it is not possible to give accurate times for coach transport and the suitable transport provided will include provision for wheelchair users.

Delegates are responsible for meeting all flights costs and taxes from their home country, including transfers where needed, and meeting the cost of hotels, meals (excluding hopefully an EPU AGM dinner on night of 19 October 2013). Lunch costs are included in the EPU events and evening meals are available in the hotel at the special rate of €19.95 per person.

It is essential that you inform the EPU by email (jmcfarlane1@iolfree.ie) of your finalised transport arrangements to and from Dublin by the end of June, if it all possible, at the latest so that we may be able to coordinate in the most cost effective and efficient manner onward transport to the AGM venue and the return journey.

It is anticipated that there will be a number of Polio Survivors and those with Post Polio Syndrome who will attend the weekend from non-member countries. It has always been the intention of EPU to extend and to reach out into eastern European countries and other sub Saharan countries. It is intended that at every opportunity people from the non-member countries will join us and observe our work and methods of collaboration. It is to be hoped that some may be able to observe the EPU AGM but will have no active part in its working or any vote that may be taken there. If any member organisations object to this will they please let me know so that any possible embarrassment may be avoided. No invitations to observe the work of the EPU AGM have been issued at this stage and therefore any objections would be appreciated by the end of May at the latest.

Negotiations are still ongoing at the present time with the various agencies linked to the 2013 EU Presidency regarding the provision of translation services. Whilst every effort is being made to provide these services at the AGM currently no firm promises can be made. You will be kept informed of progress in the weeks to come.

11th International PPS Conference Promoting Healthy Ideas St. Louis, Missouri, USA.

www.post-polio.org/net/confs.html

Hilary and Richard Boone – health permitting – are taking what might be our last opportunity to cross the pond, visit our daughter, son-in-law and by then 3 year old grandson in Canada and then fly to St. Louis for the Conference and then just 70 miles down the road to see Richards family. Hilary and Richard attended and Hilary presented at the 8th Conference in 2000 and the 9th Conference in 2005 and will be giving a presentation at this one.

Jann Hartman and other USA members, and polio survivors you might know from Facebook are making arrangements to attend this Conference. Any UK members, or readers of this newsletter, who think that they might be able to attend, then please get in touch. PPS Conferences are not only informative but the sharing of experiences and meeting knowledgeable PPS health professionals, and Polio Survivors you know from the Internet in real life plus the gales of laughter at times makes this a date not to be missed if you can afford the finances and energy.

What is the Gift Aid form and envelope enclosed with this newsletter? Why is it so important to us?

Gift Aid is a system where our ‘generous’ government allows certain charities, such as PSN, to claim back an extra amount where certain criteria are met.

For all of the payments you make to PSN (both membership subscriptions and donations) we are allowed to claim an extra 20% from HMRC (Her Majesties Revenue & Customs).

So if you just pay your membership subscription of £12.50 we can claim an extra £2.50. There is no cost to yourself or PSN at all!

The only requirement is that the person who makes the payment MUST pay income tax to at least the value of the claim.

So, if you meet the requirements, please complete this form as soon as possible.

If you have any queries concerning Gift Aid please contact: Treasurer and Membership Secretary

Gillian Bryan – membership@poliosurvivorsnetwork.org.uk

‘Our Brains Matter’ survey

Are you living with a neurological condition? If so, we want to hear about your experience of being diagnosed; find out about taking part in our new survey.

What is the ‘Our Brains Matter’ survey? For people with neurological conditions, quick and accurate diagnosis is vital to enabling access to the care, support and treatment that they need. Unfortunately, however, the time between experiencing first symptoms and getting the correct neurological diagnosis too often takes far too long.

To mark Brain Awareness Week 2013, we are launching Our Brains Matter survey to develop a clear picture of the experience of being diagnosed with a neurological condition in the UK. With the evidence we gather, we will push for improvements in diagnosing all neurological conditions.

https://www.surveymonkey.com/s/D585LX6 To take part in the survey online. Anyone without internet access who would like to complete this please drop us a line.

All You Need Is A Web Browser To Read POST POLIO NEWS [ppn]Twitter, Newspaper and RSS feed can all be browsed without requiring extra tools or subscriptions.Go to www.post-polio.org.uk/ and check out the “Tips”.

An online news cutting service from Chris Salter that specialises in news relating to polio and post polio issues

Your Newsletter needs your stories, hints, tips and bits to make us laugh..

A way of doing something, or aid, that helps you might help someone else. Tell us.

How about a recipe that tastes great on the lips but not on the hips.

CARERS – Are you a Carer and would like to write and tell us how we might help Carers understand what you go through helping us manage our lives.

Articles and items for Post Polio Matters

are always welcome, by post, by email and by phone if writing is not easy for you.

Deadline date for next issue is August 1st 2013.

PSN apologises for the problem with our P.O. Box in that we did not receive the orders when posted. 9 copies have now been posted to members. If anyone else would like a copy then we need to know by June 10th 2013 when we will re-order from Germany.

Comments so far.. “The book is helping me collect my thoughts together on how to cope” “Please can I have another copy as I am going to send this one to my surgeon” “Reading a book by a doctor who is a polio survivor and has PPS was helpful because he knows what it is like from our perspective” “The translated German to English had a couple of terms I was unfamiliar with but found the English version on Google.”

Wild poliovirus in the Horn of Africa

22 MAY 2013 – The Horn of Africa is currently experiencing an outbreak of wild poliovirus type 1 (WPV1). A four-month-old girl near Dadaab, Kenya, developed symptoms of acute flaccid paralysis (AFP) on 30 April 2013. Two healthy contacts of the child tested positive for WPV1. They are the first laboratory confirmed cases in Kenya since July 2011. Investigation into this outbreak is ongoing. In addition, a case of WPV1 in Banadir, Somalia was confirmed on 9 May 2013.

In response to the outbreak, the first vaccination campaign, reaching 440 000 children began on 14 May 2013 in Somalia and a second round of vaccination is planned for 26 May 2013 in synchronization with the affected parts of Kenya.

The risk to neighbouring countries is deemed as very high, due to large-scale population movements across the Horn of Africa and persistent immunity gaps in some areas. Dadaab hosts a major refugee camp, housing nearly 500 000 persons from across the Horn of Africa.

An alert for enhanced surveillance for polio has been issued to all countries across the Horn of Africa, highlighting the need to conduct active searches for any suspected cases. All countries are urged to rapidly identify sub-national surveillance gaps and to take measures to fill the gaps.

In 2005, polio spread east across the African continent, and into Yemen and the Horn of Africa, resulting in over 700 cases. Since then, international outbreak responses have been adopted and new monovalent and bivalent oral polio vaccines have been developed, which can significantly reduce the severity and length of polio outbreaks.

Some areas of Somalia (south-central) are also affected by an outbreak due to circulating vaccine-derived poliovirus type 2 (cVDPV2), which has resulted in 18 cases in Somalia since 2009. In 2012, this strain spread to Dadaab, causing three cases.

WHO’s International Travel and Health recommends that all travellers to and from polio-infected areas be fully vaccinated against polio.

“ATOS, ESA & Polio” – by Chris Salter.

“Most Atos HCPs [Health Care Professionals} are not doctors, they are usually nurses or occupational therapists. There are some conditions that will mean you need to be assessed by a qualified specialist nurse, or a doctor and you can ask for this.” “List of conditions judged by the DWP and Atos Healthcare as suitable only for assessment by doctors:” and the list includes Polio. The above is specific to ESA. Whether it will apply to PIP I cannot say and bear in mind that PIP assessment contracts have been awarded to Centrica in addition to ATOS. The list appeared in two recent blogs by one kittysjones and are based on information supplied by Joyce Drummond, a Scottish nurse originally employed by ATOS and who has since apologised to ATOS assessment “victims” and submitted evidence to the Scottish Parliament Select Committee on Welfare Reform. What you need to know about Atos assessments. http://kittysjones.wordpress.com/2013/04/18/what-you-need-to-know-about-atos-assessments/ or http://preview.tinyurl.com/c5ovzab Essential information for ESA claims, assessments and appeals. http://kittysjones.wordpress.com/2013/04/21/1560/

Chris Salter – chris.salter@post-polio.org.uk

MEMBERS who are in the age range and affected by ESA/PIP are asked to please let us know how you get on with the assessment and decisions. Sharing information helps us help you

What to expect from your doctor: a guide for patients Pages 1 to 4 of 12

Based on Good medical practice

The General Medical Council

Regulating doctors Ensuing good medical practice

Patients receive the best care when they work in partnership with doctors. This guide explains how you can help to create a partnership with your doctor. Much of it is simply common sense, but following it should help you get the most out of your time with your doctor.

It is based on the standards the General Medical Council (GMC) sets for doctors in our core guidance. Good Medical Practice.

Doctors must provide good care.

The evidence suggests that the vast majority of patients have an excellent and trusting relationship with their doctors. With respect and understanding on both sides, you should be able to develop such a relationship.

The support and feedback that patients provide is vital for doctors in helping them work effectively and in continuing to improve standards of practice.

From the outset, to provide you with the best care and treatment the doctor will need to find out what’s wrong with you.

They must listen to your explanation of why you have come to see them, and take into account your previous and current health and illnesses, as well as your lifestyle and your views.

They should examine you physically where necessary.

It is important to be as frank and open as you can. You may find it helpful to make some notes beforehand to take with you, so you do not leave out some information that will help the doctor understand your situation.

What will my doctor tell me?

They will offer you advice, medicines or other treatment based on the best available evidence. Many of us find it difficult to take in all the information our doctor is sharing with us and it is important to ask for clarification if you need it.

In particular, you should understand whether you need to prepare for the treatment or any tests, and that you are clear on the instructions for taking medicines.

Again, do ask your doctor if you are not sure of anything he or she has said, including when or how you should take any medicine or why you need to have any tests.

If you feel your doctor has not made the right diagnosis or is not offering the right treatment, you can ask for a second opinion from another doctor.

Helping to train students and doctors.

Everyone who sees you should introduce themselves and explain how they fit into the team looking after you. Training the next generation of doctors is a key part of any healthcare system. Medical students cannot learn all they need to know from books and will, at times, be part of the team. If you for any reason you would prefer not to help in medical student training, you have the right to decline.

Email: gmc@gmc-uk.org Website: www.gmc-uk.org Telephone: 0161 923 6602

General Medical Council, 3 Hardman Street, Manchester M3 3AW

http://www.gmc-uk.org/static/documents/content/What_to_expect_from_your_doctor_- _a_guide_for_patients_-_English_0413.pdf

Management Committee [Trustees]

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

Secretary & Newsletter Editor – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Treasurer – Gillian Bryan – gillian.bryan@poliosurvivorsnetwork.org.uk

Trustee – Chris Salter – chris.salter@post-polio.org.uk Trustee – Dot Ives – dot.ives@poliosurvivorsnetwork.org.uk .

Operations Team

Membership Secretary – Gillian Bryan – membership@poliosurvivorsnetwork.org.uk Phone and Email Enquiries – Hilary Boone – info@poliosurvivorsnetwork.org.uk – Administrative Support – Gillian Bryan – gillian.bryan@poliosurvivorsnetwork.org.uk Printing and Website – Elpeeko Ltd, Lincoln.

Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors £10.00 per year

Membership Fees

UK Individual – £ 12.50 per year Associate Membership – £ 10.00 per year Yearly fees can be paid by Standing Order.

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo.

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet to keep costs down. Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us. http://www.poliosurvivorsnetwork.org.uk/joinus.html

Donations

Donations, small or large, towards our work will always be gratefully received.

SEE BACK PAGE – Val Scrivener is making and selling brilliant photo greetings cards

Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

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. [See page 15 and enclosed new Gift Aid form]

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%).

© Polio Survivors Network – Volume 7, Issue 12 – MAY 2013	Page 20
Jacquelin Perry, MD The Grande Dame of Orthopedics May 31, 1918 to March 11, 2013 Physician, Mentor, Advocate, Friend A personal tribute by Richard Lloyd Daggett, Pages 8 to 11
PLEASE HELP RAISE FUNDS© PHOTO CARDS by MEMBER VAL SCRIVENER Sold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 inc. P & P.[sample cards on left in each newsletter]Order by writing to PSNEmailing johnval.scrivener412@btinternet.comOr ring Val Direct on 01234 346 397

 01522 888601because WE’RE STILL HERE!Website – www.poliosurvivorsnetwork.org.ukEmail – info@poliosurvivorsnetwork.org.uk P.O. Box 954, Lincoln, LN5 5ER, U.K.Registered Charity No. 1064177

Dr. Perry Richard Daggett

Dr. Perry and Dr. Nickel

Post Polio Matters Volume 7 Issue 12 Read More »

Post Polio Matters Volume 7 Issue 11

February 2013Vol 7, Issue 11The Polio Survivors Network Newsletter – Volume 7, Issue 11 n.b. Volumes 1 to 6 published under the name LincPIN.www.poliosurvivorsnetwork.org.ukCOLLEGES of MEDICINEPLEASE teach students more facts about POLIO/PPSThank youFour case histories were reported in French literatureby Carriere, Raymond, Cornhill and Lepine.These patients, all young men, had paralytic polio in infancy and developed new weaknessNOT ONLY in previously affected muscles BUT ALSO in muscles believed to be uninvolvedAll had physically demanding jobs and performed repetitive activities.Post-Polio Syndrome : Pathophysiology and Clinical Management, A.C. Gawne & L.S. Halstead. Critical Reviews in Physical & Rehabilitation Medicine, 7(2): 147-188 (1995)

At Post-Polio Health International 9th International Conference on Post-Polio in St. Louis, Missouri, USA June 2005. Dr. Esquenazi told the audience..POLIO is not a focal disease but a systemic disease which affects the whole body and had a larger effect in the areas where clinical paralysis and weakness was seen at the time of polio. He described Polio as throwing a large bucket of black paint at a white wall ending up with one large bob and lots of little blotches everywhere else. The wind changes every time you do this so the pattern for each polio survivor is different. That’s POLIO!

DIAGNOSIS is by EXCLUSION of other conditions but we can have every other condition instead of or as well as PPS.Many Polio Survivors have been diagnosed with other conditions as well, including MS, Parkinsons, Diabetes, Cancer, Sleep Apnoea, ME/CFS, cardiovascular, blood pressure, etc.,

Printed by Elpeeko Ltd., Lincoln 01522 512111

Page 2

St. Louis Missouri, USApost-polio.org

New Members and Donations received.

Contents

Page 2 Page 3 Page 4 Page 4/6 Page 7 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16/17 Page 18 Page 19 Page 20

Contents, New members and DonationsEditorialMessage from the TrusteesMemories or No MemoriesManaging my PPS LifeDiagnostic Name [front page info refers]AppointmentsBrown envelopes dropping on the doormatSymptomsAids and EquipmentOther itemsHigh fructose corn syrup and glycemic indexPost Polio News inc. medical article abstract re statins.Various items.Update from the Neurological Alliance.Diary of a Benefit Scrounger – David 1, Goliath 0Contact & Membership Details.Aspects of Post-Polio Syndrome – English version 2012. By Dr. Peter Brauer, a Polio Survivor.Published by POLIO Selbsthilfe e.V, Beilefeld, GermanySupport PSN – buy Val Scrivener’s Photo Cards.

Page 20

EUROPEAN POLIO UNION

AGM AND CONFERENCE Republic of Ireland.

europeanpolio.eu

Post-Polio Health International

PPS Conference “Promoting Healthy Ideas”

Welcome to New Members – info sent to 4 people Thank you to all members who have recently renewed.

Thank you to the following for donations given towards our work

Vivien Holland, Margaret Edmunds, Pam Bamford, Barbara Smith, Barry Branston, Olivia Branston, Christine Darlington, Walter West, Susan Freeman, John Ward, Helene McLean, Margaret Lamb Diana Nash, Anne Wood, Wendy Grimmitt, Stuart Barnett

Dinah King, Yvonne Grosse, Diana Nash, D Rose, Lynn Hobday

A total of £ 187.00 since last newsletter. Val Scriveners Card Sales adds another £ 20.00 Help our funds by ordering – info on back page. We have no paid employees.

Donations & offers of time towards our work are always welcome.

Visitor enquiries Tel: 0844 588 8076

www.naidex.co.uk

elford International Centre TF3 4JH Tel: 0845 241 0390

www.motabiltyroad show.co.uk

Editorial by Hilary Boone

Polio Survivors Network – Meetings

If you have any matters you would like us to discuss at our meetings please get in touch via hilary.boone@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

Snow and more snow and its ‘washing powder snowing’ at the moment. That was two days ago and now its really sunny and quite warm.

Trustees – good news see next page.

Health professionals are still not being taught enough facts about how the polio virus affects our bodies by Colleges of Medicine. This year I have already had six phone calls from people who had found us on the internet. All asking for help and all sadly reporting similar issues that I had from 1988 to 1995 when I found PPS existed and my polio was at last in the equation. Issues that most of you have also experienced.

The main issues raised were years of reporting symptoms that had not been corroborated by the forms of assessment used and therefore for a considerable time either no diagnosis, a generic back or limb pain diagnosis, right through to ‘its all in your mind’. One person was given a diagnosis of PPS but no further support, another definitely not PPS after a 20 minute appointment with minimal physical assessment, yet the symptoms and issue with daily living they are reporting match pps. Two without diagnosis still employed and struggling to maintain that without the available help they could be offered once a correct diagnosis given. The other two had been told it was probably arthritis.

One member reports – “a locum called today – looked in her late 20’s – did not have a clue about my polio and had never heard of PPS. Give her her due she did ask lots of questions but I can’t see the NHS giving me any remuneration for enlightening her!”

How you answer questions at appointments. Remember it is important if you are asked “Can you do x?” that you think and report ‘How you do the action, how you have changed the way you do this in the last x number of years to ensure the picture you paint is the same in your mind as theirs. Similarly, if asked about other symptoms, e.g. Constipation, it is important to qualify how this affects you because it could be only go once a week, or daily but stools are hard and it takes ages and this difference would alter treatment options.

The theme of this newsletter covers all sorts of information from other members of problems and extra information: all sorts of things that are helping make managing daily life easier.

JOHN warns…. Since October, I have had 3, yes three catalytic converters stolen from my Mobility Van. Can anyone beat this?

Naidex or Mobility Roadshow – Intend to go and want to meet others, let us know what date. Do we have your latest home and email address? It would really help if everyone with an email address could email membership@poliosurviviorsnetwork.org.uk and let us know if you are already subscribed or would like to be subscribed to our EMAIL Discussion List or just wish us to use this to contact you with information between newsletters, etc. If you are not on the internet then please drop us a line. We are always pleased to hear from members.

EXTRA! EXTRA! Dates just announced as going to press. European Polio Union, [EPU] AGM and Conference in Republic of Ireland, 19th to 20th October 2013 and Post-Polio Health International [PHI] Conference May 31st to June 3rd 2014 in St. Louis, Missouri, USA. If you might be able to attend either conference and would like more information as it becomes available then please email/write to PSN. Hilary & Richard planning to attend both. We are now re-scheduling trip to Canada to see daughter & family then USA to see Richard’s family who live 70 miles from St. Louis to May 2014.

Hilary, Gill and Chris are very grateful to Dot and Simon and Barbara for offering themselves as Trustees to share the management of the Charity.

We have had our first meeting where we discussed a variety of issues. We have now decided to concentrate our efforts on one major project that should provide the best outcomes for all polio survivors. Over the next couple of weeks we will be collating as many points as we can come up with to formulate a more detailed agenda for our next meeting, mid March. At this meeting we will finalise the terms of the project, who is going to do what, and we look forward to telling you more about this in our next newsletter in May.

Please note that Barbara does not have internet access but will be receiving communications by post, and can be joined to Internet Skype calls via her home phone. She missed our first meeting due to medical reasons. If anyone else would like to join the Trustees or offer a few hours a month to do some online or local research then please get in touch with Hilary. .

Best wishes Hilary Boone, Gill Bryan, Chris Salter, Dot Ives, Simon Parritt, Barbara Tavener.

Firstly, we need to think about what level of language and understanding we had at the age we had polio. This can make a huge difference to what and how we remember. Those who were very young without enough language to express their questions, feelings or understand what was said can still have emotional memories triggered by nurses uniforms, hospital smells, etc.

Secondly some of us remember everything and some, like me, almost nothing at all. It has been suggested that if you have a traumatic experience your brain can decide that it does not want to remember some things and ‘locks’ that file.

Members with computers can subscribe to our email discussion list and a recent thread was memories of our earlier polio life triggered by The Mary Berry Story – on BBC TWO on January 29th and 5th February 2013. Mary Berry reveals how contracting polio influenced a career which has spanned 50+ years. Here is a selection of the comments.

Zsuzsanna – I also had to have my left arm tied to the top of the bedstead. I had forgotten. Luckily my left arm recovered but my legs didn’t. Still I don’t envy Mary Berry who can walk in high heels and without the aid of a stick. I’d rather be me! I also had specially made shoes lace up ankle boots. How I longed for fashionable shoes! I had an operation on my left foot to stop it hanging and I was hoping to be able to wear ballet shoes afterwards but no. It didn’t happen!

Pat – quite extraordinary seeing her hand, neck, arm and how when walking down the steps she did it, dot-and-carry-one exactly how I used to do it. Very similar to my own condition except mine is on the right side including leg weakness. I was 23 when I had polio, Certainly brought back memories.

Di and Norman – wondered if Mary has any ‘late effects’ as she appears very active for her age.

Bridget – Mary Berry was in the bed next to me at the Bath and Wessex Orthopaedic. I have several photos and newspaper cuttings from that time and I have spoken to her since, her memory is somewhat different from mine. We had nobody in the ward on an iron lung, but one girl Deidre X who came from Portland had been in one. Barbara X did not die and eventually went home to London she had really bad junior arthritis. After seeing the programme I made a list of every single girl in the ward all 15 of them, thank goodness PPS has not affected my memory. [X Last names withheld]

Hilary – I was nearly 5 when my mum and baby brother travelled to Benghazi on warship HMS Delwara to join my father, seconded to the army to work on the phone system. Shortly after arrival my brother and I got whooping cough, then I caught polio and went into isolation. I have no memories of my time in hospital and things are very sketchy for decades. I do have odd flashbacks from reading others stories so I suspect it is all there but in ‘hidden files’.

John – Found it fascinating reading memories, brought back some of the things I used to do. Standing on a telephone directory and curling my toes over the edge, and especially wearing leather shoes with leather soles and heels. How my mother and father paid for them during the war I will never know.

Michael – I think we should all record our memories as polio effects each person differently. I have a photo of myself with calipers at 6 years old in 1950. I believe having walked, run and played as a child before 3½ the shock shut out my mind to any memories of my past life before polio and my time in hospital. Whether the shock is true or not I don’t know. Maybe, it was the polio. I don’t remember my year and half in Exeter Isolation hospital.

Pat – In 1957 I shared a small ward with a lady called Elizabeth X who was expecting. She came from the Bedford/Luton area and was very encouraging to me. There were also two men from that area, one was so tall that they had to extend his bed by putting a cot mattress across one end. When they were able to walk they used to come to see me. Now my memory is triggered maybe I’ll remember theirs names. Maurice comes to mind. Also in Neasden were two small boys both called Peter. I became friends with Doreen Buckner, later Buckner-Hicks, who died several years ago. Another lady was pregnant, Joan. We all went onto RNOH Stanmore.

Val – I contracted polio at 16/17 years old. It started as flu and as I ‘appeared’ to be losing the flu symptoms my mother said that it was time to stop ‘pretending’ and to get myself up and about. I got myself downstairs but when it came to going back up I was unable to do it, at which stage I was told to stop acting and to get on with it. My father realised that I wasn’t in fact acting and the doctor was called. He immediately became alerted to the problem and I was taken to the Spittlesea Isolation Hospital in Luton (now under Luton Airport). There were just two cases in Bedford at the time, me and a young married woman who lived not very far from my home and whose arm was paralysed. I remember arriving at the hospital in the early evening and being (it seemed at the time) surrounded by faces, being asked to raise one leg then the other and having my right leg raised only for it to be dropped back onto the bed, unable to control it myself. I was in one of the glass-sided side wards and when the curtains were pulled back I was aware that this was one of a row of similar ‘compartments’ along a corridor. After some days a ward was opened up in the old part of the hospital and I was wheeled on a trolley, with the snow falling, across a courtyard and into a cold, bare ward where, two days later I was joined by Barbara. The nurse in charge of us was an ogre but I often look back now and wonder how much of what I hated her for at the time was responsible for getting me back on my feet. She made me exercise until my body had no life left in it and then one day, as I sat in the middle of the ward and needed the toilet rather urgently, she decided to ignore my calls. In my anger I thought ‘I’ll show her’ and I struggled out of the chair and took I don’t know how long to haul myself to the end of the ward with the aid of the chair. Having been told previously by the doctor that I may not walk again and if I did it would be with callipers I now knew that I could manage it and from that point onwards I determined to stay on my feet. I admit that I was so much luckier than most but I often wish that I had returned to thank that nurse who I only saw at the time as being so hard-hearted and uncaring. I think she was just what I needed to get me to where I am today.

Gill – Yes, I remember being pushed outside for fresh air while at Winford. I remember sitting on a made bed and not being allowed to get back into it to keep warm. It had to stay neat and uncreased all day. I am sure I was bored. We had nothing to read or to do. I loved books and must have missed them. I can’t recall talking to the other children. This is one of five or six memories I have about my original polio experience. I can remember going in to hospital and arriving home after many months but only the few ‘snapshots’ in my mind about the rest of it. I’ve always thought it strange that I have absolutely no recollection of learning to walk again. I like reading the experiences of people who can remember so much more.

Di—My friends are fighting fit and don’t understand about pacing and resting. They are enjoying hectic retirements! C;’est la vie!!!

Members are encouraged to send bits for our next issues.

Member Zsuzsannah Snarey tell us about ‘Fifteen Year Old Wife’ Kindle edition.

www.amazon.co.uk/FIFTEEN-YEAR-OLD-WIFE-ebook/dp/B006YQOL90

Margit Bozzay, my grandmother, was a celebrated author and journalist in Hungary in the 1930s. She wrote several novels which were reprinted many times, but during communism her books were banned for their slightly religious and upper class content. She was responsible for a women’s column in the daily paper and wrote articles for several magazines. In this, Fifteen Year Old Wife, the first of her autobiographical novels, she described her unfortunate early marriage and the reasons for its break up. She had two sons, my father being the eldest. I did not know her because she died at the young age of 49 from ovarian cancer, when I was six months old and by translating her books [inc. Labour of Love and ‘The Lesson Ends’] I found out what a strong determined person she was. I also wanted my children and grandchildren , who do not speak Hungarian, to know about her and their heritage.

Currently £2.37 in UK. USA change co.uk to .com and its $3.68.

Get Kindle on Ipad [both Richard and I have this and its good] and Computers. Zsuzsanna just let me know its available in print as well now £7.19 pence.

WALKING, CARRYING, BREATHING, and FATIGUE.

I have fallen three times in the last six months with damage whilst not too serious has caused long term recovering issues and pain. Last fall at Xmas has added to my prior knowledge and I wonder……

Let me explain. I had my first PPS symptoms in 1988 following a fall. For the next seven years when my prior POLIO was NOT in the equation I had quite a few occasions where I found myself on the floor. I assumed that I had tripped over and would check to see what but never found anything. It was not till some years into PPS research that I had a ‘bulb flash moment’ every time I had fallen I had been carrying boxes. My body was getting weaker and now knowing that muscles can help others to do tasks that they would not normally do [our trick movements] wondered if my weakening trunk muscles were the problem.

Later with Polio Respiratory knowledge I thought “my trunk muscles, some of which are secondary accessory muscles of breathing, were helping me breathe, my weaker legs walk and my weaker arms carry the boxes. After a certain distance did my Brain say “Muscles you can’t keep up all three of these tasks something has to go. Breathing is essential, if dropping the boxes means something will break then Legs sorry but cant help you any longer” I was not tripping over my legs were just collapsing.

When I fell in September I had just said I must sit down before I fall. Three steps later down I went, I had pushed myself just that bit too far and I was wearing shoes/AFO. Just after Christmas a relief PA was arriving any minute and we decided she could go with Richard in his wheelchair to a local store and I would go into town. I put on my shoes and AFO and she arrived. Richard then said, “I don’t think I will go today”. Now I had to find some tasks for her to do whilst I was out. I walked to the bedroom and collected a few items to iron, back to the kitchen for a few more, turned and two steps later I found myself on the floor on my back with my legs from my knees back bent under me. It seemed as if my legs just stopped but my body kept going and I landed heavily on my knees. A tendon on the inside of my left knee has been playing up ever since. When out I use my scooter or if walking a short distance a cane or rollator. I do not wear my trainers and AFO in the house. I have to take them off as soon as I return home because they feel heavy [like wearing lead boots] and just wear socks. The bungalow is small so walls and cupboards are handy to hold onto. I had once again pushed my muscles too far without pausing to allow them to recover. The extra weight from shoes/AFO had shortened the distance I normally walk at home. If I can see a problem I now say, ‘left, right, left, right’ as I walk and this has helped.

Do any other members experience this and/or are there times when you are doing an action and you stop breathing for a few seconds to concentrate on using legs [climb stairs – did this for years when lived in house], arms [lifting items, carrying shopping few feet from car to kitchen]?

I have reported respiratory issues for seven years but ‘you are fine [meaning you do have issues but they do not reach our criteria for advice/treatment] see you next year”. I have to sleep on my left side [my worst allowing my best side uppermost] to breathe at night. If I fall on back it is not long before I wake to turn back again. I think the form of assessments being used are not specific enough to corroborate/understand the issues we are reporting. That some of our fatigue could be under diagnosed/ hypoventilation [shallow breathing], when doing actions of daily living. Look forward to hearing from members. Hilary.

N.B. The information on the next 8 pages of this newsletter is taken from Polio Survivors personal experiences to help increase your base knowledge of ideas/equipment that have worked for others to discuss with your health professionals.

Remember we all had different levels of polio damage, recovery, what we did in our stable years and issues we have now. No two of us are exactly the same, a nightmare for those assessing and treating us.

What diagnosis were your parents, or you if you were older, given:- infantile paralysis, paralytic polio, non paralytic polio, spinal polio, bulbar polio, spinal bulbar polio, abortive polio?

After best recovery and during your stable years of functioning if you referred to your polio how did you phrase this? Did you say have polio or am a polio survivor or had polio or ?

We all had different levels of damage and recovered to different levels. Some were left with obvious polio limbs, wore callipers, special shoes and walking aids, or used wheels. Those health professionals who have knowledge and experience of polio will recognised this. However, many of us recovered outwardly that well that we showed until we started with PPS/show no easily recognisable sign of having had polio. How many of us who did recover well have been told that ‘you must have had a mild case’ but now demonstrate a moderate to high level of changes in the way we do actions of daily living. After the success of the vaccine, as the decades passed the number of facts taught by Colleges of Medicine reduce and reduce. Leaving many health professionals without enough facts to recognise our ‘polio and pps’.

Symptoms – There are a huge number of symptoms experienced by the general public.

Symptoms of Post-Polio Syndrome

 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/or swallowing.

 Problems sleeping

 Intolerance of cold, causing muscle weakness and sometimes burning pain and/or discolouration

in limbs.

Diagnosis is by exclusion of other conditions. We can have every other condition as well as PPS. Many polio survivors have also been diagnosed with MS, Parkinsons, ME/CFS, Fibromyalgia, etc. How many other neurological conditions have the same symptoms as the bolded words?

Other members have also been diagnosed with diabetes, arthritis, cancer, blood pressure, cardiovascular issues, gastrointestinal problems, obesity [and if we have difficulties exercising is there any wonder this is a major issue for some of us], stroke, etc..

Looking at the information on the front page.

Note that as early as 1875 it was recorded that all four men who had had paralytic polio in infancy had developed new weakness NOT ONLY in previously affected muscles

BUT ALSO in muscles believed to be uninvolved. {The white area of the body pictures}

Dr. Esquenazi reminded the International PPS Conference that “Polio is NOT a focal disease but a systemic disease that affects the whole body and had a larger effect in the areas where clinical paralysis and weakness was seen at the time of polio.”

Looking at the body pictures on the front page, pick the nearest to you, or draw your own. Do you have symptoms or problems in WHITE areas on your diagram. PSN therefore recommends that you inform all health professionals (including all alternative and complimentary therapists) that you are a polio survivor and that the symptoms you are reporting could be compromised by the damage to your body from polio.

A. If possible ring and find out how long has been allocated.

B. For medical appointments have any tests/x-rays etc been pre-planned, or you could be

asked to undergo. Make sure that the clothes you wear on that day are easy to get on and

off and rather than struggle and ask staff for help or take someone with you.

C. Conserve your energy. Save it for the major reason for the appointment. How are you going

to get there, drive or be driven, where is the car park and route to the department and how

long is this going to take. Remember leave yourself time to go the loo and recover from the

journey. If the appointment is at your home, tidying up more than normal, getting out the

silver and best china and baking cookies to make a good impression can wear you out.

Everything should be as an average day for you.

D. Seriously consider taking/having someone with you who can take notes and with your

agreement remind you of anything you have forgotten.

E. Think about the reasons you are asking for/being given an appointment and list the top 3.

F. Pretend you are the health/social service/benefits professional you are going to see and

what information would you want you to provide to get the best outcome. How long is the

appointment, how many facts can you realistically discuss, so start with the most important.

G. After the appointment review what happened. If things did not go as well as you hoped do

not leave it, talk to your family/friends/GP/support group and decide on the next step.

Make up a sheet taking into account [an idea of information that could be helpful]

1. Appointment with, date and time and venue.

2. Your contact details.

3. Medical appointment

3.1 3.2 3.3	Your current medications and any vitamins etc you take regularly.Allergies and Intolerances.Relevant to this appointment
i) Ii) III)	Equipment you use / would like to discussSymptomsThe three top points that demonstrate your issues. If you have a couple of photos then and now that demonstrate the change in your ability that could be helpful and save time.Questions you want to ask.
Iv)
3.4	List other issues for your benefit that you still need to discuss at a later appointment with this professional or with another department.

4. Appointment with Social Services or Benefits Office.

4.1 4.2	Reason for appointment.New issue – contact support group, obtain leaflets, search online for information and advice about the process that you will be going through.Forms that need completing, get copy beforehand and go through it ahead of time with family member/friend/support group.Relevant to this appointment.
4.3
4.4
i) Ii)	In order of priority what facts can you give to support your request.Have copies of documents that might need to be seen. If you have a couple of photographs, and now maybe short video clips [on your mobile] that demonstrate the changes in your ability could be helpful and save time.Questions you want to ask.
Iii)

Yes we are proud of what we can achieve but we must tell it like it really is.

Now you have new medical issues do you cringe when a brown envelope arrives on your doormat, immediately dreading what you are going to have to read or fill in?

The following points have been raised:-

 Endless forms with questions that are not clear enough to know exactly what information

they are seeking.

 Some questions need the same answers and you wonder if they are trying to catch you out.

 Having to give personal information on finances that is hard now you see in ’black and

white’ how much less you are now getting compared to when you were earning.

 Repeatedly being asked for the same financial information by different departments.

Suggestions that have helped some members.

Don’t open the envelope in the lounge or bedroom so the contents if they are going to cause stress do not upset the aura in that room. Try opening them in the toilet and if you don’t like what you read pretend to ‘flush it down the loo’, put it back in the envelope and leave it in there till later. You still have to deal with it but this can take the edge off when you smile at the thought.

Get someone else to open these letters first and tell you if its ok or got ‘mostly the same questions yet again’. Sometimes it can be an eye-opener seeing someone else get as frustrated as you were by some of the questions. 16 years ago my daughter came in, saw I had been crying, picked up the Disabled Facilities Grant form and said ‘Social Services have told me I am your official carer {news to me} so I will fill this in for you’. She started to read out loud and on page 2 read ‘Is your home a benefice of an ecclesiastical estate?’ and exclaimed ’what on earth is that?’ and some pages later ’Do you have an invalid carriage [pronounced not valid], what on earth is an invalid carriage?’ When I pronounced it correctly she exasperatedly sighed ‘How many decades have they been using this form that term is as old as the dodo?’ I have to admit by now I was struggling not to laugh, and it was really helpful seeing how I had felt. [At this very moment a brown envelope dropped on my doormat – thankfully the Carers Team Newsletter]

Start filling the form in in pencil or use another sheet of paper so that you can get someone else – family member/friend/support group – to check your answers to ensure what you have written conveys your current situation as it really is.

Keep copies of any forms that you submit so that when you have to do this again you can refer to your previous answers. If you forget to do this then ring and ask for a copy to be sent to you.

Keep paperwork or copies of paperwork that you might have to refer to again in a box file or start a list of the information requested and where you have it filed, e.g. Bank statements [blue file], Receipts [envelope for each year in red box file].

If you have to tick a choice of box answers and there is no box for the answer you need to give then add another box and explanation.

Maybe you can do food shopping [with help and aids] and you do bathe and wash your hair [with help and aids] and you can make a meal [by using prepared ingredients because you cant cut them up] etc, then you must add the [extra info] and if you can only do one or two of say five every day then you need to state this on every section linking it to the other responses.

Question. Answering

Can you pick up a two pence piece? – is asking about your finger dexterity.Ticking the “Yes” box without qualifying that you have developed trick

movements, e.g. You are in an electric wheelchair and your arms are weak but you have a stick so that you can slide the coin towards the edge of the table and then with one hand push it into the other. I know we are proud we can, but tell it like it is.

The following is a selection of symptoms that members have raised with comments from others, ‘what works for me’. PSN cannot recommend any of the suggestions. However, we know that sharing this information has enabled polio survivors to raise points with their health professionals that has helped with diagnosis, advice, management, etc.

Eyes – Hilary raised issue with disturbed vision in the early 90’s, two years before she found PPS existed. Four years at two hospitals with nothing found. Some years later when reporting this on a Polio email discussion list three other polio survivors came back with similar issues. One man in Australia with a best friend Optician read all the emails and was tested further. The resulting information – the muscles that moved his eyes were weaker on one side than the other so Hilary took this information to her Optician. He tested her as normal with nothing found, read the report and did more tests and confirmed that the muscles on the left side of her face were weaker. Also the moving from light to dark/dark to light was because the movement of the pupil was also delayed and it took longer for her eyes to adjust than in earlier years. [technical term Accommodation]. You can try moving your eyes left and right and then moving your head instead to see if there is any difference. [NB Hilary is body one – BUT ALSO in her white area]

Ellen “over the past year I have noticed that whenever I try to look over my left shoulder with just my eyes I have double vision. Just recently over the right also. I am an upside down polio and know the left side of my face was affected. I will take this information to my eye doc”

Polio Quebec in 1997 advised me ‘when tired during the day/driving/at meetings try shutting your eyes and turn off all sound for 20 minutes. This lets your face muscles pace and rest.

Ellen added “when watching TV I find after awhile I will see double on just the TV. When this happens I play simple card games on my Ipad and listen to the TV. It doesn’t happen with my Ipad or notebook. But will with a real book. Will start taking eye breaks/rest now.

Pat reported a few years ago that her weak eye problem was corrected with a prism in the left lens. [Hilary rang opticians and found she has prism in left lens too]

Swallowing – Member says “I have to ensure food is chewed very thoroughly and swallowed in very small amounts. Have problems choking when eating. The testing only identified when scanned drinking that I have irregularities, end of story.

Slackness at the back of my throat that allows liquid to go down ahead of me actually swallowing. Barium swallow but nothing showed up, however I realised afterwards that this is because the liquid was of a smooth, slightly thickened consistency and swallowing that caused me no problem. I simply swallowed in a steady manner. If I am eating something that requires chewing, say an apple, that releases liquid ahead of the solid matter being swallowed and this is where i have to be careful. I make sure that my chin is down.

Second member reported having the same issues with the fluid from apples.

Third member same problems with anything juicy, especially grapes, and try to remember to chew on once side so that the juice is less likely to go down the throat.

Hilary – “Years of problems with sometimes not being able to swallow, choking on some foods and when I burst out laughing. Eventually confirmed at third appt which took ten years. This was after I gave them information from a chiropractic assessment that pointed out that watching me say ‘Ah’ and repeating it showed weakness of the palatal [throat] muscles evident left side on third swallow and right side on 5th swallow. This triggered extra tests at 3rd appt and at last was told “yes you were right you do not complete all swallows and you have a pocket that is catching some small bits of food/pills. Nothing we can do”. Earlier research from Peter Ellis, Nepean, Ottawa had told me that I should sigh so shoulders relax and keep chin down and head slightly to one side, relax and try swallowing again. Now I saw that my fear was raising my shoulders making swallowing impossible. Managing much better for 7 years now. I do still have issues but now take care and sit properly to eat. [NB I am body one so this is BUT ALSO in my white area]

Swollen Legs – Discussion started with taking Ramipril 10mg and Amlodopine 5mg but my left leg has started to swell.

‘I was prescribed Amlodopine which did turn my legs pink instead of their cold blue but my legs started to swell and the skin broke down. I was taken off the Amlodopine and put on low dose Ramipril.

M&S support tights comfortable and helped keep swelling down but my arms are no longer strong enough to put them on.

Travel stocking worked for husband.

Electric rise leg raise chair keeps swelling down reported by quite a few members.

Gastro issues. Reported are ‘I have constipation’ and ‘it is taking me far longer to pass stools now and it wears me out’ and ’I eat a good fibre diet and now taking extra medication is helping soften things to a fudge consistency’ and “it is taking less time to completely empty my bowels but a lot more effort cleaning myself.’

Dr, Brauer in Aspects of Post Polio Syndrome [info pages 17 * 20] reports on page 99. Symptoms reported in PPS medical articles. [Editors Note % figure used reflects how common the symptom is reported by polio survivors not the mean from each article]

Gastrointestinal disorders up to 80%. Flatulence, obstipation [editors note:- severe and obstinate constipation], constipation, gastrointestinal ulcers, gastritis, reflux of gastric acid, motion impairments [dysmotility] of the esophagus and the intestines as a lack of motion [hypomotility]. Causes are polio damage with an overburdening of the vegetative [autonomic] nervous system.

What has helped me responses are:- higher fibre diet, prune juice [although watch sugar content], Fybogel ok but you have to drink it quickly before it gels up, Benefibre [not available on prescription, sold in Boots, Tesco but dissolves totally in drinks] Macrogol [Movilax] sachets that dissolve in water and retain fluid in your bowels to soften stools, reported one to four sachets a day. Glycerine suppositories.

PSN suggests that asking your GP to refer you to a Bowel Nurse so that you can discuss your specific issues [ensure you qualify what you mean by terms you use, e.g. constipation, one member reports the health professional took this to mean that I did not go for days, when in fact I am expelling hard stools daily but it takes half an hour and wears me out!!!’

Shoulders – Save our Shoulders. A guide for Polio Survivors.

34 page article from Moss Rehab, PA, USA.

www.mossrehab.com/index.php?option=com_docman&task=doc_view&gid=67&Itemid=

Aids and Equipment.

Over the years the best advice and it comes from many PPS groups around the world is Don’t immediately say no when aids, equipment or personal help are suggested to you.

Try different choices before you buy. Over the years many have reported finding out later that what was recommended in stores and occasionally by a non PPS knowledgeable health professional did not work for them, but a different make did.

Pace & Rest and Save energy for things you want to do by asking for help for tough stuff. Wheel and Walking Aids.

Electric Riser Recliner – adapted now in case of emergency so it will go off once to stand.

Electric Scooter – ensure wheels are large enough for the terrain you need to travel over, the larger the wheel the rougher the ground.

Cane and Crutch handles – arthritic shaped handles less pain in wrists.

Shoes – Velcro fittings and the local cobbler has customised the strap fasteners to the inside rather than outside making it easier for my left hand to fasten them.

Rollators – Using three wheeled one which is more balanced to walk with than one cane or crutch and carries bits in the bag. Cant have one that you sit on because I cant get up.

Four wheel rollators more difficult to fold and get in car than three wheelers but have heard some fallen using three wheelers. Try before you buy.

Travelling

Sat nav mostly with voice off, great knowing how long to get there/home. Googlemaps – visit the venue and see what entrance/car park look like before leaving. Uriwell personal toilet – flexible construction fully extended to 750ml.

www.youtube.com/watch?v=UzcjB07KOs4

Kitchen

Work surfaces – two different heights for two different tasks. Sporks – Knife and fork in one, nice weight. amazon.com/sporks

Trolley – move plates, drinks etc from kitchen to where going to eat safely.

Water – Hydrate for health bottles with tube and bite valve that we hook on chair, and by bed, much easier to drink. www.hydrateforhealth.com

Lounge

Electric rise leg raise chairs – less swelling of feet, less jumpy muscles, easier to stand Electrically operated fans, moving air helps breathe easier.

Curtains/Blinds cord or electrically operated.

Bathroom

Before changing bathroom visit somewhere to try different options, wet rooms work for some, bath and bath lift and soaking muscles works better for others.

Have toilet and sink fixed to wall in small bathrooms, wheelchair footplates go underneath. Flannels – easier to handle than towel to dry yourself.

Don’t waste energy drying, wrap in large towel and rest and drip dry. Flushable wipes – as a ‘nice’ addition/alternative to paper.

Bedroom

Electric Beds – try two singles together, or split double, with king size quilt. Plastic cups/glasses in case dropped so no broken glass.

Diet – Tsp cinnamon in food and cholesterol lowering drink a day, cholesterol results now normal.

Pacing – Break tasks down till you can do a bit, rest a bit that works for you. Then when muscles recovered you can do a bit more and rest/ do and rest till you have completed the task. You can do much more this way than trying to do it in one hit and ending up with more pain and fatigue.

Disability Aid Trust – Everyone deserves a holiday. Help for the disabled to take a break. www.disabilityaidtrust.org.uk

Disabled Living Foundation – Independent advice, helping people for 40 years. www.dlf.org.uk Remap – Custom made equipment for people with disabilities. www.remap.org.uk

DisabledGear.com – The place to buy and sell second hand disability equipment online! Guy created the website to be a practical alternative to the expense of new, and address many of the frustrations he has experienced in his years of paralysis.

The FREE ads section is the main reason for this site. It is all about choice, convenience and reduced cost. (We regret that at this stage, the FREE Ads section is for people in the UK and ROI only). [Editors note:- Guy did sell wheelchair trousers and other aids, some of which we have purchased but hot off the press, for a variety of reasons, he is having to wind down the trading arm so check now for stock clearance. We met Guy at Naidex and Mobility Roadshows.]

Editors Note:- Members and Polio Survivors are welcome to contact us by phone/letter/email including sending photos or short film clips on anything related to polio, pps that has helped you manage your life to a greater degree.

Eating – corn syrup, glycemic index, and how eating low glycemic foods is better for us.

Member Jann Hartman from Washington State, USA writes:-

According to the Center for Science in the Public Interest: “The heavy concentrations of highfructose corn syrup in Coca-Cola, Pepsi, and other sugar drinks causes obesity, diabetes, and heart disease.” http://cspinet.org/new/pdf/combined_infographic.pdf CSPI is a good source of information on food and health. I do subscribe to their newsletter, but a lot of information is right on the internet. Carbohydrates which are essential part of your diet, along with lean Protein and heart healthy Fats, can cause problems when we eat too many of them or the wrong kinds. Carbohydrates are ranked on a scale called The Glycemic Index. Foods lower on the index are better. Simple sugars are ranked high on the index, and cause blood sugar to climb quicker than foods ranked lower. Lots of examples, like ripe bananas are higher than unripe ones. That makes sense since they taste sweeter. You can eat them, just eat a smaller amount, and eat with a protein or fat rather than alone. I prefer to use them for sweetening in baked goods or in cereal rather than sugars. But, I rarely eat a banana otherwise. I am very sensitive to sugars (type 2 diabetic) and have to watch my carbs very carefully. I lost 35 pounds over about 2 years, and glycemic control is much better (nice will likely never be normal). So, it is possible to lose weight even without any real exercise. (I did use a pool for light exercise 3 times a week). You just have to make very good choices on foods, and watch those portions!. Let us know if you have any questions.

Liquid Candy: http://cspinet.org/new/pdf/liquid_candy_final_w_new_supplement.pdf

My Glycemic Index article:- www.post-polio.org/edu/pphnews/pph20-3p8-9.pdf

Jann Hartman – arojann@yahoo.com

Editors Note:- I was diagnosed Type 2 Diabetes 3 years ago [high blood pressure and cholesterol and overweight]. I started using low glycemic load diet reporting this in newsletters. My diabetic, cholesterol and blood pressure results 3 months later were normal. I looked at what I ate and swopped high GL foods for low ones. I have had some relapses but today am still 40lbs lighter and losing again. Xmas to New Year I cheated, gained 12lbs, back on lowGL eating and lost it by 21.1.13. I am unable to exercise.

www.globalpovertyproject.com www.globalheroes.theendofpolio.com

PSN were contacted yesterday by The Global Poverty Project, Oasis Centre, 75 Westminster Bridge Rd, London SE1 7HS. Global Hero’s went live on 19th February 2013, and is an innovative, highly personalised and shareable platform in which users create cartoon superhero avatars of themselves on a ’mission’ to eradicate polio. The initiative is part of their wider The End of Polio campaign, which together with The Gates Foundation and the World Health Organisation looks to see a polio-free future. Global Heroes also presents an opportunity to sign a petition to persuade the UK government to commit much needed funding (following the expiration of their polio commitments in 2012) to finally help eradicate the remaining 0.1% of polio cases worldwide.

The Global Poverty Project said it would be fantastic if PSN members and families could join the campaign by visiting their website to share your avatar on Facebook, and tweet support with something along the lines of #GlobalHeroes Assemble! Mission One eradicate polio http://globalhereos.theendofpolio.com/ In return for adding the info to this newsletter and shortly on our Website we said it would be fantastic if the world could know about Post-Polio Syndrome. This includes the estimated 12 to 20 million Polio Survivors alive today and all health professionals. We asked for and were promised further discussions as to how they might take this further.

Recent Medical Article.

Statin-Induced Myopathy in a Patient with Previous Poliomyelitis.

Martikainen, Mika H. MD, PhD; Gardberg, Maria MD; Kohonen, Ia MD; Lähdesmäki, Janne MD, PhD.

American Journal of Physical Medicine & Rehabilitation:

POST AUTHOR CORRECTIONS, 30 January 2013

doi: 10.1097/PHM.0b013e318282d17e – Case Report: PDF Only – ePublished Ahead-of-Print.

Abstract:

This report describes a patient with a history of poliomyelitis who developed new, progressive symptoms of muscle fatigue and weakness, suggestive of postpoliomyelitis syndrome. However, comprehensive investigations led to the diagnosis of statin-induced myopathy as the cause of the patient’s symptoms. This case highlights the possibility of statin-induced myopathy in patients with a history of poliomyelitis and the differential diagnosis between postpoliomyelitis syndrome and statin-induced myopathy in these patients. The possibility of statin-induced myopathy should be considered when patients with previous poliomyelitis who take statin medication develop symptoms suggestive of postpoliomyelitis syndrome.

http://journals.lww.com/ajpmr/Abstract/publishahead/ Statin_Induced_Myopathy_in_a_Patient_with_Previous.99462.aspx

Or http://preview.tinyurl.com/aw9rh75

[Editors Note:- Some Polio Survivors have been reporting new or increased muscle pain after starting Statins for at least seven years and this has returned to before once stopping Statins. Other Polio Survivors have reported no side effects at all and continue to take them. Personally rather than take statins Richard and I asked to try a change of diet first. We were told that we would not be able to reduce it enough but doctor was prepared for us to try. We changed our diet by swapping high glycemic load foods in our diet to low ones and taking one cholesterol reducing drink per day. This worked for us and our current results are now in the normal range]

N.B.

If anyone is interested I maintain a ‘private’ list of PPS related journal articles on Glassboard. It’s not an extensive historical list i.e. it only lists abstracts starting from 258 days ago; when I ‘report’ a PPS-related journal article on Post-Polio News I also drop the details in “Post-Polio Journal News” on Glassboard.

Glassboard is a private social network for groups. For phone, Android, & now on the web. There is a premium version but I just use the basic free service. http://www.glassboard.com/ http://glassboard.com/support/faqs.php

If anyone wants access to “Post-Polio Journal News” email me at postpolionews@post-polio.org.uk and I will send them a personal invite.

An online news cutting service from Chris Salter that specialises in news relating to polio and post polio issues

We provide short term assistance in funding of appropriately qualified respite care for disabled, sick, elderly or terminally ill persons in order that their regular carer, whose income is limited, can be allowed to take a much needed break.

NEW ‘FREE HOLIDAY’ SCHEME LAUNCHED.

We are delighted to announce the launch of our ‘FREE HOLIDAY’ scheme for Carers – a super static caravan sited at the Richmond Holiday Centre in Skegness on the Lincolnshire coast.

Sleeping accommodation is one double and two single beds. Please note this accommodation is for Carers so is not disabled adapted. [If they can raise funds for a second caravan it will be]

The caravan will be offered to suitable Carers ‘FREE OF CHARGE’ for breaks of a week (or long weekend) and the holiday will include access to the excellent facilities and entertainment programme of the Holiday Centre, all Carers will need to pay for is their food.

102 High Road, Moulton, Nr Spalding, Lincs, PE12 6PD

Telephone: (01406) 373163

E-Mail: help@respiteassociation.org

British Polio Fellowship	britishpolio.org
European Polio Union	europeanpolio.eu
Post-Polio Support Group Ireland	ppsg.ie
Post-Polio Health International, St. Louis, USA	post-polio.org
IVUN – International Ventilator Users Network	ventusers.org
Florida East Coast Post Polio Support Group	http://home.iag.net/~bgold
San Francisco Bay Area Polio Survivors	sfbaps.org
Central Virginia Post-Polio Support Group	cvppsg.org
South Arizona Post-Polio Support Group	polioepic.org
Post-Polio Canada	marchofdimes.ca/EN/programs/PolioCanada/
Polio NZ (Inc)	postpolio.org.nz
Post-Polio Network (NSW) Inc, New South Wales	post-polionetwork.org.au
Post-Polio Network WA Inc, Western Australia	http://members.upnaway.com/~poliowa/
The Africa Connection, Post-Polio Network RSA	postpolio.co.za

Post Polio Matters Volume 7 Issue 10

November 2012Vol 7, Issue 10

DON’T FORGET YOUR FLU JAB

The Polio Survivors Network Newsletter – Volume 7, Issue 10 n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

PublishedIntelligent Outcomes:Applying the health and social care reforms to improve outcomes for people with neurological conditions.August 2012 www.neural.org.uk.n

Page 2

could interest other members please send it to us.

New Members and Donations received.

Contents

Page 2 Contents, New members and Donations

Page 3 Editorial

Page 4/5 Cherish Your Arms and Convenience for Ladies By Member Anne Wood.

Page 6 Falls – Some information that might help you in the future.

Page 7 Balance and Kinesio Tape.

Page 8 Balance Tape on my back & Excerpt from Chiropractor.

Page 9 Member Zsuzsanna Snarey writes…

What You Need To Know about my condition. [enclosed]

Page 10 All you need is a web browser to read Post Polio News.

Page 10/11 My Speech at October 20th 2012 Rally ‘A Future that Works’ by Sue Marsh.

Page 12 Information from Benefits and Work on PIP Assessments.

Page 13 Why digital exclusion is a social care issue from the Guardian Social Care Network.

Page 14 The Respite Association ‘Free caravan holiday for Carers

Page 15 The Eden Project Accessibility Information.

Page 16/17 Energy Tokens and Pacing and Resting.

Page 18 Now for something completely different.

Page 19 Contact Information.

Page 20 New Book—A place for us by Polio Survivor Wendy Wolf

Visitor enquiries Tel: 0844 588 8076

www.naidex.co.uk

elford International Centre TF3 4JH Tel: 0845 241 0390

www.motabiltyroad show.co.uk

Welcome to New Members

Rita Unger, John Carrass, Susan Kirwan. Thank you to all members who have recently renewed.

Thank you to the following for donations given towards our work Dorothy Ives, Jean Simm, Susan Kirwan, Ann Telford, Joy Witheridge, John Finley, Susan Freeman, Joanne Curtis, Janet Dobbie, Rosemary Staniforth, Zsuzsanna Snarey,

Victor Gabriel and Water Goodwin. A total of £ 155.00 since last newsletter. Total of £749.00 so far this year.

Val Scriveners Card Sales total £ 40.00 this year. Help our funds by ordering – info on back page.

If you read an article that REMINDER

If you are having problems living with Polio, Post Polio Syndrome, including trying to obtain/retain any type of benefit please let us know to add to our knowledge base

Editorial by Hilary Boone

Polio Survivors Network – Meetings

If you have any matters you would like us to discuss at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

I cannot believe the date, this year has whizzed by. Ellen in Florida has just told us that at last she has been able to turn the air conditioning off and open the windows; we have just put the central heating on; my daughter in Canada showed us photos of their snow and our grandson’s new snowsuit and boots ok up to 30 degrees below!!

The Newsletter this time has some information on benefits and the proposed new systems. Wouldn’t it be great if they could finalise how things are going to work and keep it like that so we did not have to start all over again ever few years with all the stress it entails.

I had uploaded everything for the front page but for the space where we now have the Crippen cartoon. Chris sent me a link to the cartoon and it really fitted with this issue so I uploaded it. I then had to smile when I read the International Day of Persons with Disabilities theme beneath it.

Crippen – Disabled Cartoonist. See www.crippencartoons.co.uk. We have made a donation to Disabled People Against Cuts [DPAC] for the use of this. This is the third one we have used and the last one he did specially for us.

Also there are ideas from members, things that are making their lives easier. Maybe you have some aids or ways of doing things now you are coping with pps that you could tell us about. It might be something as small as a pen that is easier to hold, or a piece of equipment, or just a way of doing an action. The views are those of the authors and not necessarily PSN’s but we hope that you might read something that could help you.

For instance, if you are on the Internet have a look at Knork www.knork.net. We bought a set of four at Naidex a couple of years ago. They are made of good quality stainless steel in one piece. The basic item is a fork with a sharpened tine that you can use as a knife. Great if you need or like just using one item to eat with. They now have a huge selection of items and can be bought from Amazon and Disability shops.

An action that I use to help me sit up to get out of bed. I turn on my side and bending my fingers on both hands link them together in an S shape and then holding my elbows out I can then pivot on my left elbow to sit up.

The back page includes information on another Polio Survivors book. Wendy Wolf who lives in Tucson, Arizona. I learned about this from Micki Minner, Polio Epic.

Why not buy a pack of Val Scriveners photo cards to help us raise funds. I have changed the five pictures on the back page for different ones but there are many more examples to choose from. If you want more information drop her a line or give her a call.

The next newsletter will be printed at the end of January. I have a temporary file that I add anything I find or sent to me. Please help me by sending me items to choose from.

A month before time to compile the newsletter I block off days and hours in my Diary [see pages 17 for a sample plan] and allow two weeks to finalise it. Preferably send info at any time but the deadline for the next issue will be January 15th 2013.

The Trustees have decided to write to you separately with this issue and we have printed it on yellow paper so that you notice it when you open the envelope.

Quality of Life is most important. Hope the ideas in this newsletter will help.

Cherish your arms, by Member Anne Wood – 2012

Having been on the slippery slope of PPS for over 20 years, I have figured out various short cuts and tips to cut down on arm usage. I’ve been jotting things down as I think of them, but so many ways have become second nature to me by now that it takes a bit of head-scratching to think of them all and wonder if everyone does things my way or if I have developed strategic methods peculiar to me.

Losing leg strength is one thing, overcome to a reasonable extent by using a wheelchair and other adaptive equipment, but arms are so precious. Homes can possibly be altered to cope with wheels, but there is no device to take the place of arms and life is incredibly difficult when their use is diminished. I am conscious of my arms at all times, I never over-tax them either with movement or weight.

One of the worst stresses arms undergo is lifting and carrying, and I look back ruefully at the years I spent pushing myself up from chairs and beds as my legs began to weaken. Currently I have 2 perching stools, one in the kitchen and one in the shower, indoor and outdoor power chairs, all set at just the right height for me to get up with minimum use of my arms, and a rare recliner armchair which raises me vertically without tipping me forward. www.chessco.net Contact them at chairs@theliftchaircompany.co.uk

I also have a powered cushion-lift, www.mangar.co.uk/products/cushion tel: 0800 2800 485, which again raises me straight up and I can take this with me when travelling.

My bed, likewise, raises me the same way, as well as having a reclining mode – email tbs@thebedshop.co.uk tel: 0800 9757473.

I don’t go anywhere if I can’t take one of my wheelchairs as, apart from sitting at the right height to get up, I need the armrests and an air cushion in a cheap cotton tote bag at my back to accommodate my scoliosis. The air cushions cost a few pounds in a camping shop or on the internet and I tuck one, half filled, into the tote bag, or other lightweight bag with straps, to keep at my back, supported by the wheelchair handles. The tote bags are also invaluable to carry shopping and I can hook any number on my chair.

Also hanging off the arm of my chair is a tubular pencil case into which I put my small bottle of water, and I keep a Whiz urinal www.whizaway.com in my capacious bag on the back of my chair, used in conjunction with my own one pint plastic screw-top milk bottle with handle. I believe the Whiz can be prescribed by your GP.

I sometimes order bulk groceries from my local superstore via the internet, and I ask the driver to put the bags straight on to the kitchen table. I generally arrange for a friend to help me put them away, but if I’m on my own I put the goods on my kitchen trolley to move them nearer the fridge, cupboards, etc.

I slide heavy pots and pans across the worktops which are in a continuous run along the kitchen walls in an L-shape. I rest the edge of saucepans of cooked vegetables on the sink and slide the contents into a colander. My kettle sits in a tilting stand and I fill it using a plastic jug. I eat in the kitchen and my perching stool is just the right height at the table – I either drag it or “walk” it to the right spot, and I can perch on it to work at the sink with the cupboard underneath open. If a table isn’t convenient for a wheelchair or perching stool, try fitting a tray into an open drawer to make a little table for one.

I have a washing “basket” on wheels to carry my laundry and a peg bag on a hanger to hook over the line.

A grabber is invaluable for picking up dropped items and the little magnet on the end is useful. A little piece of double-sided sticky tape on the end is great for picking up small items. It can also reach up to shelves, though things I use on a regular basis I keep lower down. I have a long

handled dustpan and brush. I rarely iron, but I bought a little travel iron very cheaply and it is extremely lightweight for the odd item needing a press.

I am right-handed and because my left shoulder is paralysed I’ve greatly over-used my right arm, so I try to use my left arm instead when carrying anything small such as a book or hot water bottle. I tuck it right up into my armpit so the dead weight of the arm keeps it there.

Holding a phone to my ear is impossible for more than a few seconds and I wouldn’t manage without my earpiece, or headset, which I keep plugged into my cordless model. I have two so that one is charging while the other is kept in my pocket or clipped on to my waistband. I keep my mobile phone in another pocket. At night I keep the phone and mobile on my bedside table.

Also inseparable from me is my Community Alarm button worn round my neck, which I can press for help in the event of a fall, and which I wear 24 hours a day, even in the shower. My local council supplies this for a small monthly charge.

In the dark evenings I have more than one light on so that when a bulb blows I’m not in total darkness; I have a battery light or torch in most rooms for the odd occasion when there is a power cut.

It took me a long time to work out a comfortable way of using my desktop computer – even the occupational and IT therapists weren’t very helpful. I park my indoor wheelchair as near to the desk as the control will allow, then I rest a beanbag tray on the arms of the chair and the desk, put the cordless keyboard on the tray and I use the cordless mouse on the tray in front of the keyboard. The beanbag tray is useful for many activities when one might sit at a table.

I am in love with my Kindle e-reader, as I can lay on my side in bed and hold it with just one hand, turning the pages with minimum movement of my thumb.

All these ideas help make my life a little easier, and I hope some of them will be helpful to you now or in the future.

Editors Note. Computer. Sitting at a desk with weaker arms and painful lumbar region was not working. In the States some years ago I saw the benefits of a recliner chair and having computer on a trolley next to this and a keyboard on a bean bag tray. I am now in my recliner chair with laptop on a laptop tray on my lap. My neck is supported by a neck cushion. My elbows are on the arms of the chair. My left palm is resting on the front of the laptop [it is a wide laptop because i have big hands and need the wider keyboard] and only my fingers move. My right arm swivels from my elbow and does the bits the other hand can’t reach. Ipad is great too for night-time reading. Use it same as Anne kindle. No more amitryptaline to reset my time clock when I cant sleep. Few pages and I can drop off again. Plus its great for taking short notes at a meeting.

A CONVENIENCE FOR THE LADIES – Member Anne Wood.

For those ladies who are unable to rise from a public toilet if it is too low, the Whiz Freedom may be the answer to your problems when you are away from home.

It is a female urinal which can either be used to enable you to stand over a toilet and point it at the porcelain, like men do it, or you can turn it round the other way and direct the urine into a pint plastic milk bottle. The bottle can then be emptied and rinsed, or you can put the screw lid on and take it away with you for disposal.

I believe they are available on prescription, or you can order one online at www.amazon.co.uk/ and type in Freedom Purple who make this version, or order one from a chemist. [4 versions shown maximum £12.00]

Editors note:- Stuck in a traffic jam!! this is not the time to try this for the first time. Practice the different body positions you might need to use this in in the shower is really helpful.

Falls – Some information that might help you in the future. By Hilary Boone.

Richard and I had enjoyed 17 and 7 years respectively re-enacting the early 1800 pioneer times in America. In 2008 we decided to live permanently in the UK and as we couldn’t find a UK group sold our tent and fire. Our clothes and the rest of accessories we shipped back to the UK hoping that we might be able to wear them at an event or two.

Earlier this year we found the British Westerners Association who meet for three days three times a year in Lincolnshire. We contacted them and they said ‘everyone is welcome so come to our next camp’, it’s behind a motel where you can stay if you want. We arrived and booked into the motel and got our gear on and were soon wheeling our way towards their camp. We had a brilliant time and went to the Saturday night event including a country/rock and roll group. However pacing and resting meant back to the motel room each time and missing out a lot on the life we had enjoyed for years. Motel and restaurant food costs would restrict the number of days.

We decided to join and wished we could camp again and so stay for four days instead of two. When we told Richards PA about the weekend he said ’If you want to camp I would be happy to work the hours necessary.’ Our eyes lit up could we increase our social life and have more great memories like our earlier years? We contacted the BWA and found there was an electric hook up in the Re-enactors area to charge our wheels and run Richards ventilator. We could cope if we had proper beds and we found a company that could make us some bed frames that took apart like they used to use in those times. We then found a company that sold off the tents that they used for films/events when they were nearly coming up to being replaced to re-enactors.

We decided the social outings and memories would far outweigh the ‘managing camping’ and we wouldn’t mind having a few days once home doing nothing much to catch up on energy. You only live once and we are only in our early 60’s and this would be great medicine for us both.

We bought a second hand white wall tent in time for Americana International [a 4 day event in Newark in July] where we had a brilliant time with great music on five stages. Loads of American cars, trucks, food, and re-enactors. http://www.americana-international.co.uk/

Two months later we set off for the BWA Autumn weekend. We had a brilliant time being with folks who loved depicting the American West from 1750 to present day. Because we only had to ride 75 yards we had the energy to go out at night to both Friday and Saturday night events. Great music and loads of laughter. At last we were having a social life again.

Sunday. Time to pack up and go back home. Our PA soon had the beds apart and stuff outside the tent to load into the trailer. Because I still find it hard to do nothing – despite being told to rest he was happy to do it all – I loaded a few bits, resting in the car for a few minutes each trip. Stupidly I decided to demonstrate how to fold the tent from one side which meant I was on my legs, using my arms and breathing. I realised I had to sit again but only managed four steps before my legs gave way and down I went. Having done Judo in my earlier life I tried a judo roll hit my left shoulder on the ground with my legs going right over the top. My shoulder hurt so much I thought I had broken or dislocated it. I sat holding my arm close to me till I felt ready, with a lot of help, to get up off the grass and into the car. We were soon on our way to A&E but I am sad to say that the health professionals knowledge of polio and pps was minimal; there was no understanding of the difficulties I would have coping with one arm out of action. I have been advised that formal complaints have to be recorded and I might get better results from doing this.

Where part of the body cannot be used as normal, PSN advise polio survivors to practice with that part out of action for as long as possible prior to the operation. Having such a hard time over the last eight weeks I believe it is imperative that we do this NOW because it is much harder to work it out when in pain. I had to modify getting in and out of recliner chair/electric bed/car and up and down off the loo etc. Not only did I have the pain of the ‘partial’ dislocation of my

acromioclavicular joint to cope with but also the pain caused by the strain of having to use muscles in my right arm and side of my body in a different way. On top of this the only way I can sleep is on my left side and the pain in my left shoulder meant sleeping sitting up for 3 weeks.

I saw our Chiropractor who treated me and also strapped my shoulder with balance tape to support it. I took the tape off to have a bath the day before seeing him next time and could see how much the taping was helping me. I have been four times and it has been a great help. Here is the information on the tape from the Chiropractors website.

Newland Chiropractic Clinic, Lincoln. – www.newlandchiropractic.co.uk

BALANCE AND KINESIO TAPE.

Balance tape unlike conventional taping methods has an elastic quality to it. It is increasingly used in the field of sports medicine/ injuries, and more athletes, footballers, tennis players, cyclists can be seen on TV wearing it while competing.

What does it help?

Research is at an early stage, it is only in the last 2-3 years that any controlled trials have emerged and currently these are not robust enough to claim Taping as an effective sole treatment for any conditions.

How does it work?

It can be applied in various ways which can serve to:

 Take pressure off painful areas, this reduces the tension through weak or inflamed muscles

and tendons reducing the pain and further damage caused if the patient has to continue

to use the joints, for work, day to day activities etc.

 Relax muscles, depending how it is applied the tape is thought to activate stretch receptors

in the skin which feed back to influence the control of the muscle tension under the skin

or activate muscle spindles within the muscle which would increase the activity and

endurance of the muscle.

 Promote blood and lymphatic. When applied to the skin with stretch the elastic tape

naturally wants to recoil, lift skin and fascia to allow blood and lymph flow to increase which

is thought to speed up the heeling process.

While wearing the tape movement of the joint/region is not restricted and therefore allows the wearer to continue to use the affected joint during the recovery period.

We use this tape on both amateur and professional sports men and women, on adolescents with poor posture, various postural pain syndromes and to protect inflamed muscles and tendons.

Research

1. Thelen et.al. The clinical efficacy of kinesio tape for shoulder pain: A randomised, double-blinded,

clinical trial. Journal of orthopaedic and sports physical therapy 2008, Vol 38, No. 7.

2. Hsu et.al. The effects of taping on scapular kinematics and muscle performance in baseball players

with shoulder impingement syndrome.. Journal of electromyography and kinesiology. 2009 Dec, 19

(6) 1092-9

3. Aspegren et.al. (2007) Conservative treatment of a female collegiate volleyball player with

costochondritis. Journal of manipulative and physiological therapeutics, 2007 May;30(4), 321-5

4. Chen et.al. Effects of kinesio taping on the timing and ratio of vastus medialis obliquus and vastus

lateralis muscle for person with patellofemoral pain, Department of Sports Medicine, China Medical

University.

5. Tsai et.al. (2009) Could kinesio tape replace the bandage in decongestive lymphatic therapy for

breast-cancer-related lymphedema? A pilot study. Support Care Cancer, 2009 Nov;17(11),1353-60

More information on how the tape has been helping Richard and I overleaf.

Balance Tape on my back along my lower ribs. [From previous page]

About three months ago our Chiropractor started trying some balance tape on my back on my lower ribs to see if it would help my hypoventilation [shallow breathing] issues. The tape is cut to about six inches in length and the corners rounded off. The tape is then stuck next to my spine and stretched and angled down along my lower ribs and stuck down. [see info at bottom of page]

So how is this helping me? Two mornings later I got up and walked from bedroom to lounge and was a bit stunned because I could see the paintings on the wall. I realised that my body position was much straighter than normal. Instead of mostly breathing shallowly at the top of my lungs [physio reported mostly upper chest breathes in 2004] I was able to breathe lower down and deeper when sitting.

Following my fall in 1988 and the start of my new problems I had quite a few falls. Later when I learned more about PPS I remembered that every time I could find nothing that I could have tripped over.. but realised that I had been carrying boxes. Was my brain telling my leg muscles sorry cant help you walk any more I only have energy to help her arms so she does not drop the boxes? My legs were just giving way. Since then I have repeatedly raised with health professionals that because my muscles are now weaker that ’they’ cannot sustain actions for as long. Trying to do more than one action at once drains them even more. Have you held your breath to complete an action, e.g. To climb a few stairs, lift something for longer than normal?

I noticed after about ten steps my body position started to bend forward again and if I started to use my arms this increased and if I pushed myself was soon back to as bent as before. Resting and return to being straighter again. Bent forward your chest area to breathe is reduced. Sadly so far the only person to take this on board had been my Chiropractor till a few months ago when our new Respiratory Physiologist referred me to the Consultant to discuss further.

Most surprising to me was when at home, where I only wear thick socks and no AFO for my dropped foot, that I was not having to lift my right leg as high. My gait had improved and whilst I cant heel and toe I can almost put my foot down flat. The chiropractor explained that this was most probably due to the better body position. He has now written to my health professionals to ask that further testing takes place so that the changes I am reporting can be assessed and reported on by them as well. In case the information might help your health professionals help you now he has given permission for me to print part of the text of his letter below.

To help our skin breathe we have found using two positions, one above the other, four days on, a day off and then four days on the alternate position works best for me.

I have applied the tape over Richard and Hilary’s ribs and intercostals muscles. I was attempting to promote inhalation and decided to apply it from erector spinea adjacent to L1, diagonally laterally and superiorly, perpendicular to the ribs up to about 7th rib with tape under tension. It seems to have had a greater effect on Hilary. She has been more upright since having the tape applied and I assume this is because the tape is facilitating the internal intercostals muscles, aiding expiration but also facilitating thoraco-lumbar extension to enhance the lordosis during inspiration, aiding the diaphragmatic drop and enhancing lung capacity.The available research can be found here:- www.kinesiotaping.com/global/association/research/

Darren Barnes-HeathDr of Chiropractic, BSc, CCEP Clinical Director82 Newland Lincoln LN1 1YA : 01522 538450 : 01522 538650 : darren@newlandchiropractic.co.uk : www.newlandchiropractic.co.uk

Excerpt from Chiropractors letter to Hilary’s health professionals.

An older gentleman was on the operating table awaiting surgery and he insisted that his son, a renowned surgeon, perform the operation. As he was about to get the anaesthesia, he asked to speak to his son.“Yes, Dad, what is it?”“Don’t be nervous son; do your best, and just remember, if it doesn’t go well, if something happens to me, your mother is going to come and live with you and your wife…….”

Would you like to be put in touch with other members/carers/family/friends who have similar issues and/or hobbies to yourself? We have members who have PPS and Parkinsons or Cancer. We have at least six members who use a bi-level ventilator at night. We have at least four members who live in a Residential Home. We have at least eight members who have a Personal Budget from Social services to helpthem employ personal assistants and purchase equipment that is not available from theNHS to help them manage their lives. Maybe you are a Carer, Sibling or Child of a Polio Survivor? If you have a computer and have or can download Skype [which is free and free to holdvideo phone calls with other people on skype around the world] Would you like to meetothers for a chat or if new to this have another member show you online how to use it?If you are interested in telling others about your hobbies or specific issues that you would like to share information with other members then please drop us a line, email or ring.

Member Zsuzsanna Snarey writes…

I would like to share with you a good idea that my daughter had. She noticed that I use a stool in the kitchen to prepare food and wash up but when I used the same stool to sit at the kitchen table it was the wrong height. So for my birthday my daughters bought me a hairdresser’s stool from www.the-salon.net. It is a backless gas lift stool that adjusts from 41 to 58 cm high and is on castors so that I can scoot from cooker to sink to fridge or table to serve food.

It costs £42.95 free delivery and it arrived in two days. it is a bit like a computer chair but with stylish chrome legs and rolls very smoothly. I have to be careful that I don’t miss it when I sit down and have to use the worktop to stand up. I find it a great help and it is very easy to lift me up from 41 to 58 cm.

Hilary writes… I use a computer chair in the kitchen if there is no help to put the shopping away. Having ended up on the floor because the chair shoot backwards and hit the fridge 8 years ago. I now always back the chair to the wall or work surface so that it cannot shoot backwards as I push myself up on my arms to stand.

My Speech at October 20th 2012 Rally ‘A Future that Works’ by Sue Marsh.

Originally published in “Diary of a Benefit Scrounger”, 21 Oct 2012 http://diaryofabenefitscrounger.blogspot.co.uk/2012/10/my-speech-at-oct20-rally.html

As most of you will know, I spoke at the October 20th Rally in Hyde Park yesterday.

I’ve been ridiculously ill and am waiting to go back into hospital for yet more surgery. For weeks, all I’ve really done is stay in bed being sick and writhing about, or attend bizarrely important stuff. I don’t know if I can sum up how very odd that is.

My amazing GP allows me the meds I need to get through it all and I get unsteadily to my feet, pull on a frock, paint my puffy, tired face with an inch of make up and somehow transform into confident, insistent campaigner.

Yesterday, my twitter account was never quiet as hundreds of you thanked me, but it’s an enormous privilege. It really is.

The life that so often seeps away from me has so much purpose. Every single time one of you tells me it gives you hope, it gives ME hope. The talents that sat dusty in my mind can be used for a great good and that is a truly amazing thing. I’m privileged that you let me be your voice and that others have been so generous in facilitating that.

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To that end, a HUGE thank you to Brendan Barber for asking me to speak and to the TUC generally for supporting our campaign at many events and conferences now.

So, here’s the video of my speech yesterday, and a transcript.

Another HUGE thank you to James Albury (@alburyj) for recording it and to Steve Sumpter (@latentexistence) for posting it to youtube for us.

http://www.youtube.com/watch?v=eN-u-zeMIzE&feature=youtube

Begin Transcript.

Friends, every last one of you that marched today believe in one thing above any other. Justice. You couldn’t sit at home while injustice and exploitation are closing in on us wherever we look.

You are the faces, here, today, of so many millions more who are shocked and frightened by the careless way this coalition of clowns are ripping our communities apart.

But there is a casual cruelty taking place that is so inhumane, so calculating, right now, here, in the UK in 2012, that it shames us all.

When you get home tonight, home to every corner of our nation, tired but exhilarated, weary but filled with pride – When you see the vast, defiant crowd, speaking with one voice, I beg you, to remember this :

For every one of you who marched today, a seriously ill or disabled person will lose the Disability Living Allowance they rely on to live with dignity and a little security.

This parliament of fools use numbers lightly. They count their losses in billions, their debt, in trillions, those thrown on the scrapheap of their incompetent policies in millions.

But THIS – this here, today – is what half a million people look like.

But there’s more :

A million more – TWICE as many as you marching here today – will be “reassessed” by the French IT company, Atos as fit for work. Their only income ripped away on the hunch of a few millionaires. Every single “report” or “committee” or “enquiry” into Work Capability Assessments have found them “Unfit for purpose”.

Coroner’s are reporting this “reform terror” as cause of deaths. Doctors demand WCAs are withdrawn immediately. Appeal tribunals warn that they are swamped to crisis point and beyond. Hundreds of thousands of profoundly disabled children will see their support cut by an impossible 50% while Osborne’s “Bullingdon Budget” gave millionaires £40,000 extra. Each. The Independent Living Fund – Scrapped.

Severe Disability Premiums – Scrapped.

Social Care packages – slashed.

They are not numbers Mr Cameron, they are LIVES!

They are our mothers; our brothers; our daughters and sons.

Disease or Disability can strike any one, at any time.

We are the sick and disabled people of the UK, so under threat are urgently crying for help against the wind, like a drowning man.

And so, I’d like to leave you with the words of Edmund Burke :

”Justice will NOT be served until those who are unaffected are as outraged as those who are.”

PLEASE, STAND WITH US, SPEAK OUT WITH US, WE NEED YOU.

PLEASE get outraged, because sick and disabled people in the UK need you as never before.

The benefits of subscribing to BENEFITS AND WORK.

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Subscribe to Benefits and Work and you’ll instantly put an end to the misery of not knowing: not knowing what you need to write in the hundreds of boxes in that claim pack; not knowing what’s going to happen at your medical; not knowing how best to prepare for an appeal.

Subscribe right now and you’ll instantly get a full year’s unlimited access to all our renowned guides to:

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and more and to all the DWP materials we’ve obtained using the Freedom of Information Act.

You also get unlimited access to all our members only news stories and the chance to share worries, get support and make friends in our members only forum.

What are the limits on what I can use? You can visit and download everything you need as often as you need for a full year.

All we ask is that you only use the resources for yourself or the person you’re providing care for. If you want to use the guides in the course of your work then please join as a professional.

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Write enclosing a cheque or postal order to:-

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Members please let us know what you think about the Guardian item overleaf:-If you don’t have internet access or have internet access but only use a little of the services that are available and would have difficulty applying for benefits etc online because of financial cost and/or too stressful trying to learn all that is necessary and trying would be detrimental to your health/or other reason..

Example of information from Benefits and Work Members Newsletter, 16th October 2012.

Just 19 doctors for over a million PIP assessments

Benefits and Work can reveal that Atos will use just 19 doctors to carry out personal independence payment (PIP) medical assessments in most of England and all of Scotland from April next year, according to bid documents lodged in the House of Commons library. The doctors will be outnumbered fifty to one by, mostly private sector, physiotherapists.

We can also disclose that campaigning charity Disability Rights UK is to be one of the subcontractors helping Capita to carry out the PIP assessments that will spell the end of working age DLA and a severe loss of income for around half a million disabled claimants.

Plus, we give you the first glimpse of how different your medical will be depending on where you live in the UK.

PHYSIOS OUTNUMBER DOCTORS 50 TO 1 It is believed that Atos will have to assess well over a million claimants for PIP – some on paper only – of whom at least a quarter are likely to have mental health conditions or learning difficulties. Yet the majority of the health professionals involved will be private sector physiotherapists with limited knowledge or experience of dealing with these conditions.

Figures in the bid documents reveal that Atos will use 433 physiotherapists, 173 nurses, 35 occupational therapists and 9 doctors in London and Southern England. Just 19% of the service will be provided by NHS staff, whilst private sector company Premex will provide 30% and The Injury Care Clinics will provide 15%.

In Scotland and Northern England, Atos plan to use 500 physiotherapists, 200 nurses, 40 occupational therapists and 10 doctors. The NHS will provide 36% of the service.

Atos say that this mix of health professionals was based on a number of considerations, including the “cost differentials between the types of HPs [health professionals]” and “the desire for this work” amongst different types of health professionals. There is no mention of how many, if any, of the nurses will be specialist mental health nurses.

From The Guardian Social Care Network – Tuesday 16th October 2012.

Why digital exclusion is a social care issue

As our society becomes increasingly digitalised, figures reveal a large proportion of those not online have a disability or are elderly

Next year the welfare system will undergo an overhaul as universal credit is introduced. The benefit, replacing six others, includes a new requirement to apply for benefits online. With millions of people having never used the internet, however, it raises the question of how those not online will manage.

Universal credit is just one example of how, as our society becomes increasingly digitalised, those who are not online are at risk of becoming excluded. And it’s not just a case of people opting not to be online.

This year there were 3.91 million disabled adults who had never used the internet, according to figures from the Office for National Statistics. This is just under half of the 7.82 million adults who had never used the internet. Ian Lyons, from the Shaw Trust, which supports disabled and disadvantaged people live more independently, says many websites are not accessible for people with a disability.

http://www.guardian.co.uk/social-care-network/2012/oct/16/digital-exclusion-social-care

See note in block on previous page.

The Respite Association was born on May 16th 2001 by a group of people all with first hand experience of the stress put on carers.

When you are caring for someone the task can be overwhelming. You can be on ‘duty’ 24 hours a day for seven days a week with no breaks or holidays. This is too much to ask of anyone.

Whilst providing suitably qualified carers in the home or funding a temporary place in a residential care centre can be expensive, the benefits to a carer are beyond measure. The cost and level of support varies dramatically from a few pounds to several hundred with an average around £400.

NEW ‘FREE HOLIDAY’ SCHEME LAUNCHED.

We are delighted to announce the launch of our ‘FREE HOLIDAY’ scheme for Carers.

Thanks to the help of the staff of Messrs. T-Systems Ltd, Bakkavor Ltd., and a donation from the Drapers Foundation we have been able to purchase a super static caravan sited at the Richmond Holiday Centre in Skegness on the Lincolnshire coast.

Examples (not a comprehensive list) of Carers who may qualify for a ‘FREE HOLIDAY’ will include:-

Parents with a disabled child who is going to a summer camp leaving the parents with a chance to have a holiday on their own or perhaps with another (non disabled) child so he/she can have some quality time with mum and dad.

Adult carers who look after a spouse or elderly parent who can be cared for elsewhere whilst the usual Carer(s) have a break.

In very special cases we may allow an adult Carer to go with the adult they care for.

The caravan is equipped with a TV/DVD player, microwave, cooker, fridge/freezer, crockery/ utensils/pans/glasses, hair dryer, vac, iron & ironing board, heater, books, DVD’s table and chairs for veranda.

Sleeping accommodation is one double and two single beds. Please note this accommodation is for Carers so is NOT DISABLED ADAPTED.

Application forms can be downloaded from our website www.respiteassociation.org HOW YOU CAN HELP US TO HELP CARERS.

It is a terrific challenge for our two staff to raise all the funds needed to continue to run the Charity and without some help from others we will struggle to meet the demands being made on us. Asking local organisations to make us a beneficiary of an event, holding a coffee morning, donating funds, etc. At this time it looks as if our income for 2012 may be around 20% down on last year.

The Respite Association, 102 High Road, Moulton, Nr Spalding, Lincs, PE12 6PD

Telephone: (01406) 373163

E-Mail: help@respiteassociation.org

PLACES TO VISIT that offer good access and information.

The Eden Project in Cornwall Ten top reasons to visit.

1. the world’s largest rainforest in captivity with steamy jungles and waterfalls

2. cutting-edge architecture and buildings

3. stunning garden displays all year round

4. world-class sculpture and art

5. evening gigs, concerts and an ice rink in the winter

6. educational centre and demonstrations to inspire all ages

7. brilliant local, fairly traded food in the restaurants and cafes

8. a rainforest lookout that takes you above the treetops

9. living example of regeneration and sustainable living

10.free land train pulled by a tractor.

From the Access Guide. www.edenproject.com/access-guide

Volunteers. The Eden Project offers a scheme for people who experience mobility or sensory impairments. They have an excellent team of volunteers to assist visitors around the project. There is no charge for this service. In order to ensure that there is a volunteer available please book by telephone on (01726) 818895 before your visit. When on site a member of staff is always close at hand to offer you all/any assistance required.

Assistance dogs are welcome at Eden and water is available for them around the site. We do not allow other dogs into the Eden Project.

Carers – if you have a carer to help you there is no admission charge for them.

Mobility vehicles. We welcome all types of mobility vehicles and we also have a number of manual wheelchairs (approx 40) which are free of charge and available to borrow on a first come first served basis *booking isn’t necessary for the manual chairs* These chairs are stored in the disabled parking areas Apple 1 & 2.

We have a very small number of powered chairs which are available to book in advance (we recommend one months notice to avoid disappointment). If you would like to book a powered chair please call 01726 818895 during office hours (Mon-Fri 9-5.30, Sat & Sun 10-6)

Eden Project, Bodelva, St Austell, Cornwall, PL24 2SG, UK. Book online save 15%.

No access to the internet, ring 01726 811911.

MEMBERS PLEASE TELL US ABOUT GOOD PLACES YOU HAVE BEEN TO.

Important changes to Employment Law The National Minimum Wage October 2012

NEW RATE	NO CHANGE
Apprentices	£ 2.65 per hour
16 to 17 year olds	£ 3.68 per hour
18 to 20 year olds	£ 4.98 per hour
21 and over.	£ 6.19 per hour

ENERGY TOKENS and PACING & RESTING by Hilary Boone.

Each polio survivor has 10 energy tokens per day, 70 per week. Change tokens into money and you have £70.00 to spend on energy for the week ahead. Unfortunately the only person who can work out how much of each activity you can do for each coin is you. Take an average day for you and write down the activities for that day. You have 10p’s, 20p’s, 50p’s and £1.00 coins. It will take a bit of juggling around to work out how you spend your £10.00 but it is worth it.

You can now start to plan ahead. Make up a chart on the lines of the example opposite. N.B. This does not contain enough information it is just to give you the basic idea, I have shown how some days you might need to spend more than £10 so this will leave less for the days either side.

First fill in what you have to do. Getting up and going to bed, dressing and undressing, washing, whatever you need to do to eat, these all have to go in first. Then add in the important things for this week, i.e. medical appointment, bank visit, family event. Now add in resting time. You will then see what time is left for other things, things that you would love to do. Not enough energy to do all you want to do? Now you see this laid out you might find like many of us have that you could have saved some coins if you had used an aid/piece of equipment/asked someone to do something for you. Saving energy to use it doing something you would prefer to do far outweighs how you feel about using an aid that you have fought not to use or asking someone for help. What is important is your quality of life.

If you have said ‘I am not there yet’ then I will tell you that nearly every polio survivor reading this will have said the same at some time, me included. Within18 months of finding PPS existed and starting all the research I was at a Rehabilitation appointment when the Registrar told me I should be doing some of this and I said this. He said ‘How can you possibly tell others that this is what they should do if you don’t accept that you are there now and have been for some time?’ Also ask yourself have you tried some new equipment and wished you had started using it months earlier. Most of us have, and being honest I still do the ‘not yet’ at times and later wonder why.

Taking the appointment which includes tests and seeing a Consultant. Find out how long the appointment is likely to take. How far from the car park. Get out your prescriptions/bottle ready for urine sample/aids/etc out the day before. Extract some information out of your file on you for this appt and write it up on one sheet of paper. Basic info on you, answers to questions you might be asked, questions you want to ask. [Your file – ’My Polio Life’ copies of letters, test results, pictures during your polio life showing ability] Copy for health professional could be offered but don’t be offended if they refuse it. A member told us the doctor threw her medical article in the bin but when she asked the nurse to get it back for her it was no longer in the bin. N.B. If the health professional you are seeing has been taught only a few facts about polio, maybe nothing about PPS then it could be difficult for them when they realise you may know more than they do.

Think about the tests/examination and what would be the best clothes to wear. If any of this is difficult take someone with you to help so you don’t get overtired. Now normally we would have had a bath on the day but this is energy sapping so have the bath the night before and only wash the bits they are going to look at the next morning. 

If you would normally drive and get your own wheels in and out the car why not get someone to do this for you. It will save energy and most probably less sweat and frustration. Ensure that you arrive in plenty of time to find or your driver to find that elusive disabled car parking space, get to the appointment, via the toilet if necessary, and give you a few minutes to relax in the waiting room to collect your thoughts.

Having someone with you that you have already discussed how you want them to be involved, remind you by prior agreement if you have forgotten anything, provide confirmation of what was said, is helpful. I did not take anyone at a recent hospital appointment in the Fracture Clinic and so do not have confirmation that the Doctor said ‘I see you had polio, which leg did you get it in?’ [Colleges of Medicine please teach just a few more facts about polio and pps]

Now for something completely different. A letter home from a Redneck Recruit in the US Marine Corps.

USMC Training Camp, Parris Island, South Carolina.

Dear Ma and Pa,

I am well, hope you are. Tell Brother Walt and Brother Elmer the Marine Corps beats working for old man Minch by a mile. Tell them to join up quick before all of the places are filled.

I was restless at first because you get to stay in bed till nearly 6. a.m. But I am getting so I like to sleep late. Tell Walt and Elmer all you do before breakfast is smooth your cot, and shine some things. No hogs to slop, feed to pitch, mash to mix, wood to split, fire to lay…, practically nothing.

Men got to shave but it is not so bad, there’s hot water.

Breakfast is strong on trimmings like fruit juice, cereal, eggs bacon, etc., but kind of weak on chops, potatoes, ham, steak, fried eggplant, pie and other regular food, but tell Walt and Elmer you can always sit by the two city boys that live on coffee. Their food, plus yours, holds you until noon when you get fed again. It’s no wonder these city boys can’t walk as much.

We go on ‘route marches’ which the Platoon Sergeant says are long walks to harden us. If he thinks so, it’s not my place to tell him different. A ‘route march’ is about as far as to our mailbox at home. Then the city boys get sore feet and we all ride back in trucks.

The sergeant is like a school teacher. He nags a lot. The Captain is like the school board. Majors and Colonels just ride around and frown. They don’t bother you none.

This next will kill Walt and Elmer with laughing. I keep getting medals for shooting. I don’t know why. The bulls-eye is near as big as a chipmunk head and don’t move, and it ain’t shooting at you like the Higgett boys at home. All you got to do is lie there all comfortable and hit it. You don’t even load your own cartridges, they come in boxes.

Then we have what they call hand-to-hand combat training. You get to wrestle with them city boys. I have to be real careful though, they break real easy. It ain’t like fighting with that ole bull at home. I’m about the best they got in this except for that Tug Jordan from over in Silver Lake. I only beat him once. He joined up at the same time as me, but I’m only 5’6” and 130 pounds and he is 6’8” and near 300 pounds dry.

Be sure to tell Walt and Elmer to hurry and join before other fellers get into this set up and come stampeding in.

Your loving daughter, Alice.

Management Committee [Trustees] Chair – Position Vacant

Operations Team

Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors

Membership Fees

UK Individual – £ 12.50 per year

Yearly fees can be paid by Standing Order.

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo.

Associate Membership – £ 10.00 per year

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet.

Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us.

Donations

Donations, small or large, towards our work will always be gratefully received.

SEE BACK PAGE – Val Scrivener is making and selling brilliant photo greetings cards

Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

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%).

© Polio Survivors Network – Volume 7, Issue 10 – November 2012	Page 20
© PHOTO CARDS by MEMBER VAL SCRIVENER Sold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 inc. P & P.[Choose from large selection]Order by writing to PSNEmailing johnval.scrivener412@btinternet.comOr ring Val Direct on 01234 346 397

 01522 888601because WE’RE STILL HERE!

A Place For Us by Polio Epic’s ownWendy Wolf – Tucson, ArizonaFrom polio poster child to charismatic activist, read about the inspiring life of Wendy Wolf. This is an inspiring story of interest to every person with a disability, their family, their caregivers, and their friends, and in plenty of time to inspire gift giving during the holidays. Media Maestro – Book Division is proud to release this hardcover biography of Wendy Wolf. The book is available through any bookstore by its ISBN number and from Amazon.com and BarnesAndNoble.com very soon.Wendy Wolf entered an iron lung at the age of four and emerged a polio survivor whose life illustrates the challenges of opportunity and acceptance people with disabilities face and the triumphs and successes this extraordinary woman achieved. Though she came close to death, she survived the iron lung and 7 subsequent surgeries, ultimately suffering almost total loss of use of all four limbs. She went on to earn 3 degrees, improve the lives of hundreds of children through her services as a Speech Therapist in New York and Mexico and Arizona, founded the first Independent Living Center in Arizona, found a unique introductory service for people with disabilities, raised two foreign born special needs children largely as a single parent, advocated for many issues to improve the lives of people with disabilities, and become Ms. Wheelchair Arizona 2006 and, at the Ms. Wheelchair America 2007 Pageant, won the Nicki Arde award for her lifelong history of advocacy.To learn more about Wendy Wolf, visit her LIFE website: www.LoveIsForEveryone.com Read an excerpt from this book. This book may be ordered from any bookseller by itsISBN #978-0-9799477-2-8, or from the publisher, MediaMaestro.net.

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Post Polio Matters Volume 7 Issue 9

© Polio Survivors Network – Volume 7, Issue 9 – August 2012	Page 1
Immediate Response to Members of the Neurological Alliance fromArlene Wilkie, Chief Executive“The announcement of a SCN covering neurology is absolutely fantastic news which will ensure that there will be NHS funded and administered networks across England dedicated to enhancing services for all people with neurological conditions. In giving neurology recognition and priority at national level, the SCN represents the single most important development for neurology to date under the new health and social care system and will play a crucial role in the future of neurological care.“Since clinical networks were confirmed last summer as a core element of the reformed NHS, we have recognised their potential to address the key challenges neurology faces, from delayed diagnosis to lack of service integration, and have championed the need for neurology clinical networks. There can be no doubt whatsoever that it is a credit to the neurological community’s tireless work, both through our ‘better deal for neurology’ campaign and recent report on the case for a neurology SCN, that we have been allocated one of only four SCNs.“This achievement is my proudest moment at the Alliance so far. It simply would not have been possible without your input and support; thank you so much. I look forward to working with you all to make sure that our SCN delivers positive and sustained change for the 8 million people we collectively represent.”	16th March 2012Government watchdog finds neuro services are‘well below’standard.22nd March 2012NICE to publish quality standard for neurological conditions1st May 2012Government responds to report on neurological conditions.8th May 2012We call for an end to the social care crisis
Produced in collaboration with Neurological Commissioning Support. www.neural.org.uk/updates/203-Making-the-case-for-neurology-networks

August2012Vol 7, Issue 9

The Polio Survivors Network Newsletter – Volume 7, Issue 9

n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

Page 2

could interest other members please send it to us.

New Members and Donations received.

Contents

Page 2 Page 3 Page 4 Page 6/7 Page 7 Page 8 Page 9 Page 12/13

Contents, New members and DonationsEditorialReport from TrusteesPostural Care and Protection of Body ShapeSimple Stuff Works.Recent Medical Articles on Polio & Post Polio Syndrome.The impact of the Salk Vaccine. By College Student.Disability News Items.London 2012: Paralympian warns DLA cuts could ‘jeopardise independence’ and

Minister wants eight year delay in new rights for disabled passengers.

Page 14 Page 17 Page 18 Page 19 Page 20

Using the Law to Fight Cuts to Disabled People’s Services.Members write:- Respiratory and Those Dreaded Forms!Useful Links.Contact Details.Back Page. Polio Place adds PSN’s My Polio Life to their website. www.polioplace.org

Member Val Singleton Photo Cards in support of PSN. Please help us raise funds by ordering a pack or two.

DISABILITY EXHIBITIONS —

NAIDEX SOUTH

17 – 18 Oct 2012

ExCeL London

www.naidexsouth.com

NAIDEX

SCOTLAND

18 – 19 Sept 2013

www.naidex.co.uk

Thank you to all members who have recently renewed.

Thank you to the following for donations given towards our work John De’Ath, Rita Unger, Mrs K Norman, Mrs E Hobday J Doohan, Diane Lightfoot, Yvonne Liggins

Jennifer Paulger, Clare Colfer, Diane Taylor, Maureen Allison Plus the members who sent Books of Stamps

A total of £ 175.50 since last newsletter.

Plus Val Scriveners Card Sales adds another £ 20.00

We have no paid employees.

We would like to recognise and thank the following for so generously donating their time. The Trustees, Chris Salter, and Bob Price

If you read an Donations & offers of time towards our work are always welcome.

article that

REMINDER

If you are

having problems living with Polio, Post Polio Syndrome, including trying to obtain/retain any type of benefit

please let us know to add to our

knowledge base

Editorial by Hilary Boone

Polio Survivors Network – Meeting information

If you have any matters you would like us to discuss at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

As I start to type this it is a sunny day…., but daily life for polio survivors and others with disabilities is somewhat grey at the moment because of the huge number of changes in the NHS, Social Services and Government Benefits that are going to affect how we manage our lives from here on in. See tip on page 17 for when those dreaded brown envelopes drop on the doormat. Please if you have any ideas/suggestions or know of good user groups/experts in the benefit field who would be prepared to help our members please let us know.

Our Website front page has a changing photo slot and we would like to add some more members photos. What is really good is a three photo collage showing three stages of your polio life. With or at the time you had polio [we know some do not have photos that show polio damage but a photo at about that age would be fine]. Another showing you at your best recovery and one now. This is the fastest way of demonstrating how polio and now post polio syndrome has changed our lives. Also single photos demonstrating achievement or taking part in a sport/hobby or showing good disability equipment/ideas. All photos will be returned.

I thought that regularly adding items in newsletters asking you to send in questions, hints, tips and bits, articles, items that you read in other publications, respond to surveys/requests, purchase Val Scriveners Photo Cards to help us raise funds, and most importantly join the Committee or Operational Team by offering a skill and a few hours a month, etc would be met with a fair level of response. Sadly, response has been none, just a few and rarely over 10%.

I know living with PPS is tough not only physically but emotionally and financially. The dreams and hopes we had for our retirement disappear and the vagaries of living with old age seem to come and meet us head on. We accept that there are members who would find it really difficult to help because of the difficulty with managing their daily lives. However, if every member did just one of the above it would be a huge boost for PSN. [Thanks to those who sent books of stamps]

I ask that you read the Trustees report on the next pages and if you, a partner or family member or friend think you might be able to help us with the future running of PSN then please get in touch to find out more.

Bob Price, CPA, from Jacksonville, Florida, has managed our USA account for many years now, often adding a donation of $100 when paying in USA $ checks from American members. Reluctantly due to his and his wife’s current health he has asked us to find someone else to take this on board.

I would like to take this opportunity on behalf of all members to thank you Bob for all you have done for us. Congratulations on your 55th Wedding Anniversary on the 15th June 2012. We wish you both all the best for the future.

A good overall article on Post Polio Syndrome on Patient.co.uk.

This PatientPlus article is written for healthcare professionals so the language may be more technical than the condition leaflets. You may find the abbreviations list helpful. .

www.patient.co.uk/doctor/Post-Polio-Syndrome.htm

Members without access to the Internet.

If you would like more information on an item, a copy of any of the articles referred to, or you can think of some way we might help you, then please drop me a line or give me a ring.

Dear All,

We would like to thank all who were able to join us for the AGM and for the donations towards the cost.

PSN needs three Trustees to comply with our Constitution and on the day of the AGM we only had two nominations. The meeting agreed to take advice from the Charity Commission. Subsequent to the meeting that advice was that the existing Trustees would need to recruit a further trustee in order to run the charity and make valid decisions. So that we could continue complying with the CC regulations Chris Salter very kindly offered to stand in as our third Trustee whilst further discussions took place as to the future of PSN.

The overriding issue regarding the future of PSN is whether continuing as a registered charity is a viable option, not only for this accounting year but future years as well. We certainly need more help and we definitely need more Trustees in order to avoid the annual question mark over whether we are able to retain our charitable status for the coming year.

Briefly, our current thinking is we must have a minimum of 6 Trustees. A proportion of these including the Chair will be non-executive posts responsible for oversight and not directly involved in the day to day

management which will be carried out by the executive Trustees .

All the Trustees, executive and non executive, make up the Management Committee. Trustees do have responsibilities and there are of course financial concerns but we have always had more than £1800 in the kitty at the end of each year.

The Management Team will comprise the executive Trustees and possibly additional helpers and will be in regular contact by email, Skype etc. They will provide a monthly report for the non-executive Trustees who will also be asked to approve any payment over £100 other than the Newsletter printing costs and postage.

During the next few weeks the Trustees will be discussing and planning the detailed tasks needing to be completed in the coming months. These will cover both possibilities, i.e., continuing as a registered charity or relinquishing charitable status. However, a final decision in that respect will be made mid September 2012. The response to this call for more Trustees will obviously be the critical input to that decision.

We fully appreciate that anyone – member/family member/friend – taking this on board will need more information to make a final decision, e.g., to read the C.C. document referred to on the opposite page; to look at the detailed tasks list currently under preparation; to discuss this with us. However we would appreciate hearing from anyone interested by the end of August 2012.

We would also like to hear from anyone who would like to send in items for consideration for the newsletter. Such as questions, hints, tips and

Message from the Trustees.

The Late Effects of ME

– Can They BeDistinguished FromThe Post-PolioSyndrome?AuthorDr. E.G. Dowsett MBChB, Dip Bact.A tribute meeting for the late Dr Betty Dowsett, who died in June at the age of 91, is to be held inColchester on Sunday, October 28.It will take place in The Samaritans Hall, Walsingham Road, Colchester CO2 7BPat 2pm

SITUATIONS VACANT TRUSTEES

HELP WITH SECRETARIAL TASKS

and your stories, hints, tips and bits.

bits, write articles, review medical articles, tell us about your life, work, hobbies, anything you think other readers might like to read.

We would also like some help with secretarial tasks and if you would like to help by taking on a task or have a skill you can offer, can spare a few hours a month and would like more information why not email, write or give us a ring.

Dr. Betty Dowsett, MBChB, Dip Bact.

It was with sadness that we learned of the death of Dr. Dowsett in June 2012. She was an amazing expert and campaigner for ME and similar medical conditions including post polio syndrome. Her support for our work and sharing of information was excellent.

She attended a few AGM’s, speaking at a few and gave freely of her time to discuss members issues with them and their families.

There is one memory that always makes me smile. I was waiting for arriving members in the hotel reception. A couple of hours later Dr. Dowsett came from her room, bringing me a drink and seeing I looked tired asked, ‘Are you OK, is there anything I can do to help you?’ I replied ‘You are right I am exhausted in fact I don’t know my a**e from my elbow.’

Dr. Betty walked across reception and gently took hold of part of my arm saying, ‘Hilary dear, this is your elbow.’ Much laughter from myself and the few members sitting with me. A lovely lady, a wonderful sense of humour and we will miss her.

See strip on page 4 for the venue, date and time of a Tribute meeting for her, led by her daughter Mrs. Frances Johnson. If you would like to attend and/or speak please email the organiser, Mrs. Vivienne Mills. vivienne.mills@ntlworld.com

Lincolnshire Post-Polio Library article by Dr. Dowsett.

The Late Effects of ME – Can They Be Distinguished From The Post-Polio Syndrome?

www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/dowsett/lateeffectsme.html

We hope you are enjoying the Olympics, have a good summer and we look forward to hearing from you.

The Essential Trustee

Charity trustees are the people who serve on the governing body of a charity. They come from all walks of life and almost everyone has abilities, knowledge or experience that they can bring to a charity.

Being a trustee should be rewarding and enjoyable, and an opportunity to make a positive difference and serve the community while learning new skills. A strong personal commitment to the charity’s aims is important. Most trustees are unpaid volunteers, but trustees are allowed to be reimbursed for reasonable expenses; there is no reason for trustees to be out-of-pocket.

Trustees have duties and responsibilities to their charity, its supporters and beneficiaries. If you have recently become a trustee, or even if you have been a trustee for years, it is important that you are aware of these and we encourage you to read our guidance:

www.charitycommission.gov.uk/Library/guidance/cc3text.pdf

Postural care and protection of body shape

Basic information sheet http://www.mencap.org.uk/posturalcare

Postural care is a gentle form of physical therapy used to protect body shape. People who find it hard to move, at any age and for any reason, are at risk of developing changes in their body shape and these changes

lead to secondary complications. People who find it hard to move during the day often spend the majority of the night in one position. Over time this position can become obligatory as their body shape may make it even harder to move or difficult to adopt alternative positions. In June 2009 the NHS/PASA Buyers Guide for night time positioning equipment stated that the following complications are associated with a failure to protect body shape.

 “The musculoskeletal system (contractures, loss of joint integrity, e.g. Hip dislocation, decreased

bone density, reduced range of joint motion and deformity, e.g. spinal scoliosis)

 The neurological system (spasticity/muscle tone, primitive reflexes, altered sensation and joint

position sense, pain, weakness)

 Respiratory function

 Digestion (including swallowing and choking, both of which are compromised by

poor head and neck posture) and kidney/renal function

 Personal hygiene, ease of toileting and changing

 Functional ability

 Environment interaction (sensory perception, body aesthetics, learning, communication)

 Sleep pattern and irritability”

Isn’t this happening already?

The provision of therapeutic positioning is patchy. There is very little evidence available for the standard of adult provision. The recent NHS Buyers Guide for night time positioning equipment for children stated that 54% of respondents to a survey of paediatric physiotherapists have a child on their caseload who does not have access to therapeutic positioning equipment. Of these 40% did not have access to funding. One can only assume that the situation for adults is worse as there are no charitable sources of funding for equipment.

The NHS/PASA Buyers Guide describes training for families and PAs as “vital” and that it is available from manufacturers. There are currently no clinical standards for training of company representatives selling night time positioning in the UK. Many therapists in the UK are increasingly frustrated by the lack of funding for equipment , a lack of awareness of their role in this field and are often managed within systems that do not reflect the hard work that is involved in supporting families to provide this fundamental care. Children are often assessed for need using functional assessments – this is not logical as some individuals will never make progress according to these scales, yet their body shape will deteriorate over time. We need to use measurement of body symmetry to assess whether we are effective in protecting body shape.

What are the cost implications of providing postural care?

There are cost implications for training both healthcare professionals and families. Use of therapeutic positioning, particularly at night is dangerous. Thorough safety planning and assessment of competency should be part of a postural care pathway. Families are able to make informed choices only when they are in possession of comprehensive information and supported to weigh up risk and benefit. Sleep systems cost in the region of £400 to £3000. There is a new not for profit organisation supplying sleep system equipment www.simplestuffworks.co.uk

What are the cost implications of failing to protect body shape?

Consideration of the potential secondary complications outlined in The NHS/PASA Buyers Guide indicates considerable cost implications of a failure to protect body shape. Costs would be associated with surgical intervention, complex equipment for mobility as well as moving and handling, pressure care, adaptations to the home should hoists be required, enteral feeding, pain management and an increased need for medications such as Botox or Baclofen. The human cost to the individual and their family of experiencing

avoidable secondary complications must not be forgotten. Ultimately changes in body shape lead to a loss of internal capacity, the contents of the abdomen invade the thorax, leading to premature death.

How do we know if therapeutic positioning is working?

We can use very simple measures of body symmetry, non-invasive and statistically validated in 1992. These measures can be used by families to monitor progress and to ensure that body shape is being protected. They can also be used to hold service providers to account.

How do I find out more?

You can take a look at our website www.posturalcareskills.com call or email us. We’re happy to talk this through with anyone interested in moving this forward in their area. We are here to support therapists and service providers to understand the implications of therapeutic positioning and to improve access for families to person centred, timely provision of therapeutic positioning.

Post Polio Matters Volume 7 Issue 8

May 2012

Volume 7 Issue 8

The Polio Survivors Network Newsletter – Volume 7, Issue 8

n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

A 34

GENIE WHEELCHAIR EASYCARE PRODUCTS LTDFeatures:Choice of positions from lying through to standing Very manoeuvrable in tight spaces Indoor/outdoor chairCompact cool imagePressure management seatingToileting facilityRange of control options12 month guarantee with extended 4 year warranty optionOngoing adaptations in line with user’s requirements Crash testedCourtesy loan chair, whilst yours is upgraded or repaired.Easily transportable.

My Story by Sandy Yarrow

RemZzzs Mask Liners ™ {See bottom page 5}are a soft, absorbent barrier between mask and skin. Greatly reduce or eliminate noisy annoying air leaks.Prevent skin irritations and ugly pressure masks. Help absorb facial moisture and oils. Assist with comfortably holding yourmask in place. Allow for the use of bedtime facialproducts. Promote a comfortable, full nightsleep… For you and your partner..www.remzzzs.com

Page 2

could interest other members please send it to us.

New Members and Donations received.

Contents

Page 2 Contents, New members and Donations

Page 3 Editorial

Page 4 Report from Trustees and information on the AGM.

Page 5 Naidex Disability Exhibition snippets.

Pages 6 Information from Louth Service User Group leaflets & to 14. The government eligibility framework bands. Critical, Substantial, Moderate and Low .

Pages 6/7 What is a Personal Budget and how do you get it?

Page 8/9 Will you have to pay something towards the cost of your care?

Page 10/11 Is Direct Payments Right For You?

Page 12/13 Direct Payments. How to get the most out of the funds provided.

Page 14 Eligibility Framework Bands.

Page 15 Post-Polio Information

Page 16/17 My story by Member Sandy Yarrow.

Page 18 Email. I know that polio has shaped us……

Page 19 Contact and Membership Information.

Back Page Crippen Cartoon for Polio Survivors Network by Dave Lupton www.crippencartoons.co.uk

Member Val Singleton Photo Cards in support of PSN. Please help us raise funds by ordering a pack or two.

DISABILITY EXHIBITIONS —

NAIDEX SOUTH

17 – 18 Oct 2012

ExCeL London

www.naidexsouth.com

NAIDEX SCOTLAND

18 – 19 Sept 2013

www.naidex.co.uk

MOTABILITY ROADSHOW 21 – 23 June 2012 Peterborough East of England Showground

www.mobility roadshow.co.uk

We welcome New Members A. Revell, R. Unger, and M Whitley

Thank you to all members who have recently renewed.

Thank you to the following for donations given towards our work Ivor Hill, H Brown, Nicholas Harvey, Susan Freeman,

John De’Ath, Mrs. Peter Norman, Rita Unger and Lynn Hobday

A total of £ 255.00 since last newsletter.

Plus Val Scriveners Card Sales adds another £20.00

We have no paid employees.

We would like to recognise and thank the following for so generously donating their time. The Trustees, Chris Salter, and Bob Price

Donations & offers of time towards our work are always welcome.

If you read an article that

Editorial by Hilary Boone

Polio Survivors Network – Meeting information

If you have any matters you would like us to discuss at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

As I type this it is a grey day, not raining, but GREY. At a Parkinsons UK Event in Lincolnshire last weekend I heard a great tip. We were asked to think of something sad and then she told us that we were either looking down or had our eyes shut. Mine were shut. She then asked us to think of something good and as we did we all looked up. She advised us to try looking up on grey days or in grey times and see if it helps. It works for me much to my surprise.

All the changes of the Benefits System, the NHS and Social Services let alone everything else that impacts our lives is mind boggling. PPS is bad enough to cope with but all the future changes in how we will have to claim and be assessed for all this is mind boggling.

Some of our members are under 65 and will have to cope with changes from Incapacity Benefit to Employment Support Allowance [ESA] and Disability Living Allowance [DLA[ to Personal Independence Payments [PIP]. Attendance Allowance is for first claimers over 65.

Disability Rights UK have produced Factsheet 60 on PIP which I think looks really helpful. The direct link is www.disabilityrightsuk.org/f60.htm If anyone under 65 would like a copy and does not have access to the internet then give me a ring and I will print one off for you. I found the 11 sections and scoring part very interesting and was able to score both Richard and I and see what level we would get. Richard is only 61 so will be changed over at some stage.

At a recent meeting I attended it was suggested that those of us over 65 and on DLA may also have to be reassessed after 2016 because DLA will no longer be a scheme. We will let you know as soon as we hear anything about this.

Personal Budgets.

I am not an expert by any means but have been involved with the previous system of Direct Payments and the new System of Personal Budgets personally and at a variety of meetings for the last few years. We have another member who knows the national and local government documents very well and has experience over 13 years. We work closely together and without her help personally Richard and I would have floundered. The Louth Users Group provide four leaflets for Lincolnshire residents to help folks understand what it is all about. Almost all of the information will be relevant to other counties so I have included the information on pages 6 to 13. You will need to ask your local County Council Adult Social Care department – or go to www. [Countyname].gov.uk to obtain the local documents to you.

The Crippen Cartoons. Dave Lupton is the leading disabled cartoonist in the UK and we have used a couple of his cartoons in previous issues. I emailed him to ask if there was any chance of doing some cartoons that reflected comments made by Polio Survivors. The back page cartoon came about when I complained about the mess around Richard and he said ‘but this is not a mess, it’s an opportunity for a PA’. Richards PA laughed and told him not to worry about making messes. We were only able to send Dave a small contribution towards this cartoon, so if anyone would like to send us a donation to pass on to him for this and the use of more of his cartoons in the future, it would be good. Suggestions for cartoon wording relating to Polio, Post Polio and Disability can be sent to us at any time.

AGM responses.

Each posted newsletter AGAIN contains a reply slip. If you have not already sent one then please do or let us know by email or phone. Thank you.

MOBILITY ROADSHOW, Peterborough – Richard and I be at this on Friday 22nd June 2012.

Dear All,

Please will all members who have not let us know if they are able to join us for the AGM.

Dr. Emma Braithwaite FRSM CEng. Will be the speaker from ResMed (UK) Ltd. She is a technician and will be explaining the ventilators and masks. Please would members ring, write or email any questions they would like to be asked on the day. We will include questions and answers in our next issue.

Second speaker on how to improve your body position at night. Do you have new pain and wake often? Are you sleeping on the other side or in a different position than before? A couple of our members have now had visits and advice with reduction in pain. Let us know how things have changed for you and we will include some ideas that you might try in the next issue.

Responding to our Requests.

We appreciate that living with PPS and all the other problems we might have is not easy. However, we give up a lot of time and effort from our lives to provide you with the information. We would really appreciate more response from our members to requests for items or requests for items for the newsletter. AGM response sheets are added to this issue and if you have not returned one, or let us know by email/phone then please let us know.

We again repeat out request for at least one, preferably two, more committee members to spread the workload. Contact is made mostly by email and Skype every month or two for a couple of hours. Plus if at all possible the AGM and another face to face meeting, but if that is impracticable then you would have to be able to join us via Skype or a telephone Conference call.

Can any member spare a couple of hours a month to take on a small task, research on the internet, reading disability magazines and sending info that other members might benefit from, go to their Library and find copies of newspaper items on polio from the past, all of which will help us provide information for members, and a wider audience via our website.

Give us a ring to chat about how you might help.

Sadly we have to report the passing of Member Peter Norman from South Devon. His wife has offered to write up the story of his life pre, with and post polio and this will be in the next issue for which we thank her.

Looking forward to meeting as many of you as can get to the AGM and to reporting all that happens on the day to those that cannot join us.

Best Wishes to you all.

Message from the Trustees.

Doors open 10.30 AGM 11.00

Lunch Break 12.15 to 1.30 Bring your Own lunch Drinks provided

1.30 pm Speaker 1 ResMed

2.30 pm Tea Break 2.45 pm Speaker 2

4.00 pm Close

NAIDEX – Disability Exhibition

BIRMINGHAM NEC

May 1st to 3rd 2012

Richard and I visited Naidex for four and a half hours on May 1st. This was not enough time to see more than about a third. It was great to bump into Members Wendy and Frank Grimmitt, and Paul Stanton and quickly catch up before we all wanted to look at more.

We visited Simple Stuff Works to ask John a few more questions following his visit to assess how we might improve our body positions in bed to breathe more easily at night.

Then to Easycare Products Limited to talk to Owner and Inventor Bob Hestor about our Genie Standing Wheelchair order [See front page]. www.easycareproducts.co.uk. Tel 01952 610300

Hydrate for Health. Featured in earlier issues. It was good to meet Mark Moran, Director and Inventor of Hydrate for Health. We have three each, one by bed and one hooked onto side of riser/recliner chair, as the picture on the left, and a spare ready full to change over. Best use for us is at night when all we have to do is to reach out and take hold of the tube, drink and hook the tube back up. We have added OXO All purpose magnetic Bag Clips as they have a hole through that the tube goes through and clip to side of wardrobe/ shelf etc. Clips in pack of 4 we bought in local supermarket.

The Hydrant system is a 1 litre water bottle, a unique*, one piece, cap/handle/ clip, a drinking tube with a bite valve and a small clip to attach the tube to clothing if required. The bottle is hung from the bed, chair or wheelchair and the user simply takes hold of the tube, inserts the bite valve between their lips then bites and sucks. The bite valve opens under pressure and closes when released so there is no leakage. Use for cold and warm but not hot drinks.

1. Attach your Hydrant to a bed, wheelchair, or chair using the clip/handle/hanger so it stays as

vertical as possible.

2. Place the bit valve on the end of the tube in your mouth.

3. Gently bite to open the valve (it’s worth practicing this with your fingers to see how it works)

and suck to bring fluid through the tube.

4. If the Hydrant is positioned above head height then once fluid is in the tube it becomes a

siphon and no further sucking is needed, simply bite the valve and the drink will gently flow

out.

5. When you finish drinking simply release the bite valve, it will seal closed and will not drip.

Telephone 0800 292 2382. www.hyrdrateforhealth.co.uk Sold by them and various distributors including Boots, Asda, & Nottingham Rehab Supplies etc

Then to Easycare Products Limited to talk to Owner and Inventor Bob Hestor about the Genie Standing Wheelchair we are ordering. [See front page].

RemZzzs Mask Liners

Robert Rutan CEO and Developer of RemZzzs Liners offers to provide a complimentary 3-day sample pack of RemZzzs® to any person who reads this Newsletter and responds during the month of June. You should email customercare@remzzzs.com with your name and mailing address, mask type and size, and mention you read this in our newsletter. If you do not have internet access then contact us and we will email the information to them.

To order from UK visit Intus Healthcare Limited on www.eu-pap.co.uk Tel 0844 504 9999

Our last order arrived in the post 21 hours after ordering!!

HELP FROM SOCIAL SERVICES, DIRECT PAYMENTS, PERSONAL BUDGETS.

The following information is taken from four leaflets that were prepared for Lincolnshire residents by Louth Service Users Group by a PSN member. All counties work slightly differently but based on Government documents. The information is provided to give you general information. Contact your County Adult Social Care Department for their documents and forms by phone or website www.[county name].gov.uk Remember if you are going to have an assessment then you must be honest with yourself about what you can and cannot manage each day. Remember if asked “Can you do x?” that you need to explain how you do the action now, rather than just answer ‘Yes’.

WHAT IS A PERSONAL BUDGET AND HOW DO YOU GET IT

Frequently asked Questions

How do I get help, what help is there, who do I ask, what is a Personal Budget? are just some of the many questions. Perhaps this leaflet will give you some answers.

The First Person to Contact

Telephone your county Adult Social Care, [Lincolnshire 01522 782155] and ask for an assessment because you can no longer cope and need some help. Everyone is entitled to an assessment. Someone from Adult Social Care (known as the Assessor) will telephone you and arrange a time to come and see you.

The Assessment

This is a chat about what things you can manage and those you cannot. It will include your health, how you manage every day, what you can do without help, what help you get from family and friends, and what support you feel you need. It is a good idea to think about these before the person from Adult Social Care comes to see you, talk to family and friends about it and make some notes so you are ready to answer any questions. A friend or member of the family can be with you at the assessment, or you can ask a voluntary organisation [Total Voice 01522 706580) that gives support for you to speak for yourself or to speak for you.

What help will I get

The Government has set down levels of needs that affect your independence, these are called Bands. There are four Bands, Low, Moderate, Substantial and Critical. The Assessor will decide from the information you have given in your talk together which is the right band for you. You will need to find out which Band your County funds financially. [Band Information see page 14]

[In Lincolnshire if it is decided you are in the Low or Moderate Bands the Assessor will suggest help that may be available from voluntary organisations and let you know how to get in touch with them. If it is decided you are in the Substantial or Critical bands then you can get financial support from Lincolnshire Adult Social Care.]

Resource Allocation System (RAS)

The RAS is the way it is decided how much support you will get. You will be asked to fill in a RAS form and you can do this yourself or with the help from family, friend or your Assessor. The form is divided into sections and each section has several answers, all you have to do is tick the answer that best describes your needs. It is a good idea to spend some time thinking about which boxes to tick. It may not be easy to accept the true level of your current ability.

Each answer scores points and the points are added up to see the amount of money you need to maintain you independence.

Financial Assessment

If Adult Social Care is going to give you some money to help you they will then assess you to see if you should pay something towards the cost of your care. In order to help as many people as possible nearly all

Councils charge those who can afford to pay some of the cost of their care. This assessment is about your income, savings and certain expenditure and is explained in the leaflet “Will you have to pay something towards the cost of your care?” If you do have to pay anything towards your care, this is called your contribution, and is the amount of money you will pay into your Direct Payments account; Adult Social Care will pay the rest to make the money up to the full amount of the RAS total.

Financial Review

Your income, savings and expenditure is looked at once a year to see if your contribution has changed.

Support Plan

When you are told how much money you will get you will need to think about how you will spend it. Think about all the things that are important to you and how the money can be used to help you do those things. The purpose of the Personal Budget is that others are not deciding what is best for you, you decide for yourself. You can decide what will be in your Support Plan on your own, or with the help of family, friends, or Adult Social Care. Your Support Plan should show ‘outcomes’, they are the things that will happen because of spending the money in the way you have chosen. You can include outcomes that do not cost any money, however your Support Plan should include:

What is important to you What you want to change

What support you need to do what you want How you will stay healthy and safe How you will stay in control of your life How your support will be managed

What plans you have made if something goes wrong (called contingencies) What your support will cost.

If you do not want to just write your plan it can include pictures, drawings, a video or audio recording, it is up to you to explain what you want in your Support Plan in any way you wish. When Adult Social Care agrees that your Support Plan will meet your needs you will then be given the money for your support. This is your Personal Budget.

Personal Budget

A Personal Budget is the money that you get after you have completed the Resource Allocation System forms and your Support Plan.

You are the best person to know your needs and how you would like them to be met. It gives you choice and flexibility on how your support needs are met. You choose what support you have, who provides that support and when, you choose how best to spend your Personal Budget.

Managing the money

You have a choice how the money is managed. Lincolnshire County Council can manage the money for you and pay for the support you have chosen, you can choose someone to manage the money for you or you can manage the money yourself (with help) – that is a Direct Payment.

Direct Payments

To help you decide if you would like to manage the money yourself read the leaflet “Is Direct Payments Right for You?”

Care Review

At any time, if your support needs change, you can ask for your care needs to be looked at again, this is called a review.

Adult Social Care should carry out a routine review once a year. This will look at how well your Support Plan is working and if your support needs have changed. This may involve a new assessment and completion of the RAS forms to see if you needs have changed..

End of leaflet provided by Louth Service Users Group.

WILL YOU HAVE TO PAY SOMETHING TOWARDS THE COST OF YOUR CARE?

In order to help as many people as possible, Lincolnshire County Council charge those who can afford to pay for their care. Whether you will be required to pay a charge, and, if so, how much, is calculated on information collected at your Financial Assessment.

The Financial Assessment is very straightforward. Your income from all sources including benefits and pensions is recorded. Any wages you may earn are exempt. DLA Mobility is also exempt. If you receive the night care element of Attendance Allowance or Disability Living Allowance, and Social Services do not provide night care, then the night care element only is exempt.

Savings and investments that amount to less than £14,250 are disregarded. Savings between £14,250 and £23,250 are recorded as a weekly income of £1.00 for every £250, for example saving of £15,250 recorded as £4.00 per week. If you have savings above £23,250 you will be required to pay the maximum charge (if your care funding exceeds it) and you will not be assessed any further. The Council sets the maximum charge every April; for 2011-2012 Lincolnshire it is £250.00 per week. If you do not wish to have a financial assessment, you will then automatically pay the maximum charge.

If your assessment continues there is an Allowance to cover living expenses. The amount is equivalent to Income Support or Pension Credit plus 25%. The Allowance is increased every April, your Social Worker can tell you how much it is for this year. If your income is less than this Allowance you will not have to pay a charge and the assessment is over. However, if your income is greater than the Allowance there are further deductions that can be made. These can be housing costs, such as rent less benefit, or mortgage, council tax less benefit, and building insurance.

Disability Related Expenditure is also deducted. These are the expenses you have because you are disabled that you would not have if you were not disabled and will vary with each person as much as disabilities vary. As a guideline they can include:

 Heating and metered water costs above the average (this is in the Council’s Fairer Charging

Annual Statement)

 Equipment you have bought such as wheelchair, scooter, power bed, stair lift, riser/recliner chair,

etc, etc, plus repairs and servicing.

 Staff you employ privately to help you

 Additional laundry costs (5 loads or more a week)

 Community Alarm System.

 Prescription charges to maximum of the NHS Prepayment Prescription Charge

 Travel expenses above DLA mobility

 Dietary needs.

 Excess wear and tear on clothing and footwear.

 Chiropody.

 Extra communication costs.

 Additional wear and tear on furniture and fixtures.

 Any other expenditure that is related to your disability.

After all these deductions from your income, the amount remaining is your Assessed Income, and this is the maximum you can pay for your care. If the funding for your care is less than your Assessed Income you will pay the lesser amount. In Lincolnshire the maximum you pay cannot be more than 90% of the funding provided for your care.

Your First Financial Assessment.

All income and expenditure is looked at over a year and divided by 52 to get the weekly amount. The only exception is equipment expected to last a number of years, that is divided by 500 to get the weekly cost spread over ten years. Income is recorded for the current year and expenditure is for last year.

To prepare for your first Financial Assessment you will need to gather together the paperwork that confirms your income and expenditure. Some examples are as follows:

Income

Documents you are sent every year such as pension and benefits notifications, occupational pension.

Savings	Premium Bonds, Post Office savings, stocks and shares, PEPS, TESSA, ISAS, or any other savings or capital, including your current or deposit bank account.Rent and housing benefit notification, or your annual mortgage statementCouncil Tax and Council Tax benefit
Expenditure

Building Insurance

Electricity, gas or oil bills for the previous twelve months Metered water bills

Receipts for any equipment you have purchased related to your disability Receipts for anything related to your disability, such as listed opposite.

The Council requires proof of purchase, and receipts are the simplest way of providing this. However, as this is your first Financial Assessment, and you did not know that these receipts would be needed, you may not have kept them all. If you paid by cheque perhaps you have the counterfoil, or have a credit card receipt. With heating costs you may have a current bill that an estimate can be made from. For items of Disability Related Expenditure you can show the assessor the items and agree a reasonable cost. There are set allowances for laundry and for any private help you employ, although if your costs are greater than the set allowances you can discuss this with your assessor.

To make sure nothing is forgotten it is helpful to prepare a list of all your income and expenditure and put this with all the paperwork and receipts you can find. Make a list of any items that you do not have a receipt for and find out what the average cost is; you will then have a starting point to agree a reasonable cost with your assessor.

You are now ready for your first Financial Assessment when all the information is re-corded.

FINACIAL ASSESSMENT REVIEW

Now you know that you need receipts for all items you want to claim, make sure you keep every one for when you have your next review.

Every April the Council will increase the amount recorded as your income because pensions and benefits go up then and you need to check these figures are correct. It is therefore important that you claim for any increase in your expenditure, such as heating cost, rent or mortgage, any new equipment or purchases you have made related to your disability: ask for a review. If you do not claim, the Council will use the information of your expenses from your last assessment. This could mean you pay more than you need to.

For the review prepare a list so nothing gets forgotten and attach to all the paperwork and receipts to confirm your income and expenditure, just as you did for your first assessment.

If there is a marked change in your income or expenditure at anytime in the year you should notify Social Services and ask for a review.

How your Charge is Calculated

Per Week

Total Income	£ …………………
Plus Savings (£1.00 for every £250 over £14,250) £ …………………
Less Total exempt Income Less Allowance Less Total Expenses you have Assessable Income	£ …………………£ …………………£ …………………….£ _____________

Appeal

If you think there is an error on either the information or the calculation of your charge there is an Appeal Procedure.

For further information you can get a copy of the Council’s Charging Policy for Non-residential Care and Annual Statement of Charges from the your County’s website. [Lincolnshire County Council www.lincolnshire.gov.uk.]

End of leaflet provided by Louth Service Users Group.

IS DIRECT PAYMENTS RIGHT FOR YOU?

Read the view of someone who has been using Direct Payments for a number of years.

You have probably read the leaflet introducing Direct Payments and are wondering if they are right for you. You may think it might be too difficult, will you be able to cope, who will help you and what happens if it all goes wrong. If you read on I hope I shall cover any concerns you may have, but first let me tell you how Direct Payments has helped me.

The control and flexibility of who I employ, what they do and when, has given me back my independence. Before Direct Payments I had become quite housebound, much was being neglected because it was all a dreadful struggle and I had generally lost interest. Direct Payments has helped me to look after my general wellbeing and enabled me to regain contact with family and friends, and I can now have the support to pursue hobbies I had given up long ago. The flexibility means when I’m feeling all right my Personal Assistants (PAs) can take me out and about and when I’m not so good I can use more support at home. Direct Payments has given me a quality of life I did not think would be possible again.

I have had my care funded by Direct Payments for a number of years and I can tell you how it has worked out for me.

Finding People to Employ

Living in a rural area, as I do, should be no obstacle to finding suitable PAs. It can be surprising how many people are available for a few hours employment within a quarter of an hour’s radius. I believe that employing a number of PA’s for a few hours each has definite benefits:

 draws on a wide range of skills.

 shares the care between several people ensuring cover for holidays, sickness,

replacing staff and day release for training.

 reduces the risk of getting too dependent when only a couple of PA’s provide all the

care, which can be very upsetting when one PA leaves.

 easier to find people who only want a few hours work a week.

 people who work for less than the earnings threshold do not have to pay tax and National Insurance.

(For the tax year 2012/13 the earnings threshold is £156 a week). As an employer you will have a

legal obligation to operate Pay as You Earn (PAYE) on payments you make to anyone who earns

more than this – there is help and advice on PAYE if you need it.

Any willing person can be trained to meet your care needs, and you can use your Direct Payments to send employees on Moving and Handling, Hygiene and other courses. The most important factor is that you feel comfortable having the employee in your own home.

When I first started on Direct Payments I chatted with a person who had lived in my area all her life and seemed to know everybody. She put me in touch with others until I had built up a team to cover all my care. I was very worried when I had to move house several years ago because I had to start again finding suitable employees. I asked everybody I came into contact with if they knew anyone available for work. I put cards advertising the jobs in the local Post Office, shop, pub and garage, and advertised in the parish magazine and local newspaper. Within quite a short period of time I had built up a new team of PA’s. If you do not like the idea of advertising, interviewing and checking references on your own, there are User Groups or Organisations in each county who can help you. [In Lincolnshire Penderels Trust have the Council Contract and Lincolnshire Independent Living is a User Group that can help you, there are others]

If you rely on help to get up, washed and dressed, you may decide to employ a Care Agency for this. However you must make certain you have enough money for the other needs identified on your Care/ Support Plan. If you manage your Direct Payments well you may have some money left over, this can be saved up and used for additional support for anything listed in your Care/Support Plan, a summary of your care needs.

Being an employer

Have you ever paid someone to trim the hedge, cut the grass, do a bit of cleaning or pick up some shopping? You have had to find the right person to do the job, negotiate a rate of pay, budget to cover the cost and agree when the work will be done. This is just the same as finding people to help with your care needs. There are rules to follow, but they are not difficult and nothing to worry about. Local Agencies will be able to advise you. You can do it for yourself, with the help of family or friends, or you can use your Direct Payments to pay a Payroll Agency to work out the wages for anyone you employ, including their tax and National Insurance, so that is easy.

Paperwork

If you accept Direct Payments the money for your care will be paid into your Direct Payments bank account and you will pay the people who provide your care. You need a separate bank account so your own money does not get muddled up with the Direct Payments money. The Council needs to know that you are receiving help from the people you pay to provide your care and that the care is being delivered as set out in your Care/Support Plan.

This means paperwork. Some people like paperwork, I don’t. But the paperwork required is really very simple. You will need to keep a record of the hours worked, the rate paid and the money you have paid each employee and receipts or invoices for every other purchase. At the end of every four weeks you will need to list everyone you have paid and how much you have paid them and any other expenses. The total is what you have spent and should agree with your bank statement for your Direct Payments account.

Again an Agency or someone you choose can help you with this. It is not a requirement of the scheme but I find it useful to use a receipt book and get everyone I pay to sign it. I find this an easy way to keep check on my spending and to do the list at the end of four weeks. So long as the Council’s paperwork is completed you can keep whatever records you may find helpful.

Asking for Support.

I needed some help when I started, then I managed on my own. Providing you stay in control of your Direct Payments, there is no limit to the help you can receive from family, friends, or an Agency. You can have help with finding and interviewing PA’s, help with planning the work they will do, help with paying wages and employment rules, and help completing the paperwork.

There is no need to worry that you can’t cope, you do not have to do it alone.

What if things go wrong?

An Agency like Lincolnshire’s Penderels Trust are there if you get in a bit of a muddle. Over the years some of my PA’s have left and I have had to find others. This can be a worry, but my other PA’s have covered the work until I’ve found a replacement. If you are really stuck and rely on help to get up, washed and dressed, remember you can have that part of your care arranged by the Council, that’s called Direct Provision, and the rest of your care can be provided by Direct Payments.

Because all our care needs are different, those of us on Direct Payments use the money in different ways. We all look for the best care from the money provided and in that way we gain a quality of life and remain independent. If you choose Direct Payments I’m sure you too will find new and interesting ways to use the money to meet the needs in your Care /Support Plan. If you decide Direct Payments is right for you just tell your care assessor.

End of leaflet provided by Louth Service Users Group.

DIRECT PAYMENTS

How to get the most out of the funds provided.

So you now have your Personal Budget and you have decided to manage it yourself, and the money will be paid into your new Direct Payments account. The next thing to decide is how to spend it. You put in your Support Plan all the things that are important to you so you need to think about how to achieve these. You may have some unpaid help from family or friends, and you will need to pay for support for everything else with the funds provided. Here are a few ideas.

Personal Care

If you need two people and a hoist to get you up washed and dressed (and back to bed) then you may decide to employ an agency because you may feel you can depend on them, however they can be quite expensive. Check out the agencies in your area, talk to each of them, and decide if they can meet your needs at a price you can afford. Or you could contact the local school of nursing to see if they have two students in your area who would like to work for you whilst training. Is there a mobile hairdresser in you area as this can be cheaper than paying a PA (Personal Assistant) to take you to the local hair salon or barber?

Night Care

If you sometimes need care in the night, you may find someone who you can pay a small amount each week (known as a retainer) who would come at short notice when you need them and you would pay a full wage when they help you.

Meals

If you cannot prepare your own main meals think about who can help. You could pay someone to prepare and cook a meal for you every day, but this can be quite costly. Maybe there is a neighbour who cooks for her family and you could pay her to make an extra meal for you and bring it round, or you may be able to arrange to collect your main meal from the local pub or cafe – they may even deliver if you ask them. Or you can employ someone once or twice a week to prepare the meals you like and freeze them for you or your PA to warm up when you want them. Remember if someone else is providing the food you must pay for that out of your own money, Direct Payments can pay for making, cooking and delivery of your meal.

Medical Appointments

It can be expensive to pay a PA if you need someone with you at medical appointments because you do not know how long you will have to wait. If there is a Voluntary Community Car Service in your area (check with the local council) they only charge mileage plus about £5.00 if it is longer than two hours. This can be the cheaper option if you are able to get in and out of a car. They will also push you in a wheelchair to your appointment, for refreshment or to the toilet, if you need that support, a service you will not get from you local taxi.

Ask if your local Voluntary Community Car Service can also take you hospital visiting, shopping, to meetings, or visit friends.

Practical needs around the house

If you do not need a lot of support to get up washed and dressed then the PA you employ to help you with that could also make the bed, keep the house clean and prepare a light lunch or warm up a meal already prepared. If you need help with laundry check out the cost at your local laundry for the larger items such as sheets as you may find this cheaper than your PA washing, drying and ironing these at home. Do you want your windows cleaned – find out the cost of the local window cleaner, it may be cheaper than paying your PA to do it? See if there is a local handyman who can come for a couple of hours to carry out minor repairs, check the tyres and batteries on your scooter or wheelchair, or keep the paths clear.

There are many different ways to meet your care needs. These are just some ideas for the everyday things, and if you can keep your costs as low as possible on these then you will have more money to spend on the more enjoyable things you may like to do.

Accessing the Community

You can employ a PA to take you to disabled horse riding, disabled swimming, disabled sailing, disabled ramblers, so find out what is available in your area. Maybe you may like to employ a PA to take you

fishing, to the pub, community centre, theatre, cinema, garden centre, attend adult education classes, go to the library, to your place of worship or meet up with friends and family. You could put your money together with others who also get Direct Payments to employ a couple of PAs to support you all and hire a minibus for a trip out together, or for something else you may like to do together. You can use your Direct Payments to pay for your PA’s costs such as refreshments or admission (although some places offer free admission to carers), however you cannot use Direct Payments to pay for your own admission and refreshments. These are just some ideas, everyone has different things they enjoy doing, it is up to you to choose.

The Cost of Employing PAs

You must pay at least the minimum wage that is reviewed every October. However do not pay your PAs too much or you will not have enough money to do all the things that are important to you. You can always increase wages if the PA turns out to be very good, but you cannot cut wages. When interviewing, try asking what wage the PA expects – you may be pleasantly surprised. If you employ several PAs you do not have to pay them all the same, wages are usually based on skills, experience, and responsibilities that can be different for each PA.

If a self-employed person works for you expect to pay at least £1.00 more per hour because you do not have all the employer’s costs such as paid holidays or sick pay, however make sure they fit the selfemployed status for the work they will do for you as set out by HM Revenue & Customs; the support agency, Penderels Trust, can help you with this.

What you CANNOT use your Direct Payments For

Direct Payments is to support your care needs so you can lead a life as independent as possible therefore you CANNOT use your Direct Payments:-

 to pay for everyday costs that you would have if you were able-bodied.

 as a “piggy bank” to dip into or borrow from when you want extra money to supplement your own

income

 to pay for electricity, gas, oil or telephone.

 to pay for food for yourself, cigarettes and alcohol.

 for services that would normally be provided by the NHS

 for accommodation costs.

 for gambling

 for anything unlawful

If in any doubt always check with your Social Worker before you use the money.

If you use your Direct Payments for anything other than supporting your independence, as set out in you Support Plan, you are likely to be asked to repay the money and your funding by Direct Payments will be stopped.

End of leaflet provided by Louth Service Users Group.

[Editors Note:-

I have been raising issues locally through Physical and Sensory Impairment Partnership Board, Adult Social Care Reference Group and Lincolnshire LINk meetings for a number of years. In Lincolnshire we have raised issues with initial contact, assessments of needs and finances and the paperwork provided and the yearly financial reviews.

Devon County Council has an excellent website with all documents and forms available and easy to find. If you already have help from your County Social Services then I would like to know what you think of their paperwork and services. Whilst we cannot specifically help anyone out of Lincolnshire if you are having difficulties then I would appreciate learning what they are and hopefully help you find a local User Group who can help you.

Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care

Guidance on Eligibility Criteria for Adult Social Care, England 2010

Page 21

The eligibility framework is graded into four bands, Critical, Substantial, Moderate and Low.

The eligibility framework is graded into four bands, which describe the seriousness of the risk to independence and well-being or other consequences if needs are not addressed. The four bands are as follows:

Critical – when

• life is, or will be, threatened; and/or

• significant health problems have developed or will develop; and/or

• there is, or will be, little or no choice and control over vital aspects of the immediate environment; and/or

• serious abuse or neglect has occurred or will occur; and/or

• there is, or will be, an inability to carry out vital personal care or domestic routines; and/or

• vital involvement in work, education or learning cannot or will not be

sustained; and/or

• vital social support systems and relationships cannot or will not be

sustained; and/or

• vital family and other social roles and responsibilities cannot or will not be undertaken.

Substantial – when

• there is, or will be, only partial choice and control over the immediate environment; and/or

• abuse or neglect has occurred or will occur; and/or

• there is, or will be, an inability to carry out the majority of personal care or domestic routines; and/or

• involvement in many aspects of work, education or learning cannot or will not be sustained; and/or

• the majority of social support systems and relationships cannot or will not be sustained; and/or

• the majority of family and other social roles and responsibilities cannot or will not be undertaken.

Moderate – when

• there is, or will be, an inability to carry out several personal care or domestic routines; and/or

• involvement in several aspects of work, education or learning cannot or will not be sustained; and/or

• several social support systems and relationships cannot or will not be sustained; and/or

• several family and other social roles and responsibilities cannot or will not be undertaken.

Low – when

• there is, or will be, an inability to carry out one or two personal care or domestic routines; and/ or

• involvement in one or two aspects of work, education or learning cannot or will not be sustained; and/or

• one or two social support systems and relationships cannot or will not sustained; and/or

• one or two family and other social roles and responsibilities cannot or will not be undertaken.

www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113154

Polioplace.org

an internet repository for medical and practical information, historical records and artefacts, launched on January 30, the 129th anniversary of Franklin D. Roosevelt’s birth.

Polio Place looks at the past – not only the history of the disease, but also the stories of its survivors. It examines the present from the perspective of people around the world who are living with polio and post-polio syndrome today.

Post-Polio Health International (PHI) developed Polio Place with the generous support of the Roosevelt Warm Springs Foundation.

PHI is committed to reaching out to polio survivors and their families, health professionals and policymakers, particularly in countries where living independently and successfully as a polio survivor is not a priority.

PHI invites survivors and health professionals worldwide to explore this storehouse of information and let us know your needs, concerns and successes.

Here’s how to participate:

Polio survivors – Have you devised a unique way of doing something to increase your independence? Have you created a simple device to assist you?

Can you write an essay on Living with Polio? Contact us.

Do you have a photograph, letter, newspaper article, etc., that tells your polio story? Please visit the Artefacts area of the website, and submit it.

Health Professionals and Researchers – Are there Medical Articles you would recommend or articles you judge to be classic, seminal, excellent overviews or longitudinal studies? Click on Contact and let us know.

Historians and Authors – Do you have suggestions for additional Collections of historical material or recommendations for additions to the People section? Have you written a book that should be included? Contact us.

Polio Place is a new additional website and an extension of our mission to enhance the lives and independence of polio survivors through education, advocacy, research and networking. Our other trusted sources of online post-polio.org and ventusers.org will continue.

http://polioplace.org

Editors Note: Share your story with PSN.

Post-polio.org.uk

Post-Polio News Service

RSS and Twitter feeds Twice daily ‘Newspaper’ Daily Digest via Email

http://www.post-polio.org.uk/ Overview by Author Chris Salter.

Post-Polio News (ppn) an online news cutting service that specialises in news relating to polio and post-polio issues.

Disability and other health related issues are also covered.

News sources are many and varied including newspapers, magazines, medical journals and support group notices to name but a few.

As editor of this independent service I have total freedom over what news I choose to output.

Post-Polio News therefore inevitably reflects a personal bias.

Nevertheless, I try to report with an even hand and views expressed by the authors of the news items I include in Post-Polio News do not necessarily reflect those of my own.

Direct link from our Website front page.

– o –

Poliotoday.org

is published by the Salk Institute for Biological Studies. The website is designed to raise awareness of post-polio

syndrome and to be a resource for polio survivors. Dr. Jonas Salk, who developed the first safe and effective polio vaccine, founded the Salk Institute in 1960.

Watch the 3 Breathing Symposium presentations under Videos. Excellent information.

http://poliotoday.org

– o –

Patient.co.uk article on Post Polio Syndrome

This PatientPlus article is written for healthcare professionals so the language may be more technical than the condition leaflets. You may find the abbreviations list helpful. .

http://www.patient.co.uk/doctor/Post-PolioSyndrome.htm

My Story By Sandy Yarrow.

I was born in 1946 near Nottingham and as a child all I wanted to do was dance. I did ballet, tap, modern and Greek but my favourite was acrobatic dance, as I was very flexible. So agile that many people would ask my mother if I was made of rubber.

From the age of 9 years old, in two consecutive years, I was fortunate enough to dance in West End shows and was promised a solo part the following year but that was not to be. In the January of that year I contracted Polio which affected me from the waist upwards and left me with limitations in the use of my left arm and albeit that I didn’t fully appreciate it at the time breathing problems. Although I knew that my chances of realising my lifetime ambition of being a professional dancer were all but over I carried on with my dancing as much as I was able and still managed parts in two professional pantomimes at the Derby Hippodrome. However, not being able to lift my left arm fully and getting out of breath quicker than those around me, eventually, forced me to accept that from now on dancing would have to remain a hobby.

On leaving school I did office work doing payrolls but a little later in my working career I was fortunate enough to secure what was a dream job for me in a Sports Centre. This enabled me to be close to sport another of my great loves.

I met my husband Eric in the sixties when he was in the Royal Air Force and attending a training course at RAF Newton near Nottingham, we were married less than two years later and I became a military wife.

We have two daughters and when the youngest was 3 years old we decided that it was time for Eric to leave the RAF to enable the family to have a more stable way of life not the endless moving from place to place that military life demands. Fortune took us to a beautiful village in Surrey called Cranleigh where we enjoyed 10 wonderful years but Eric’s career prospects forced a move to where we presently live near Henley on Thames, still not a bad place to be.

After living here for 5 years and now in my 40’s my problems began. It started with a virus a bit like meningitis and I was taken into hospital for a few days. I was later told that I had an overactive thyroid gland and given lots of medication.

I just didn’t recover even though my thyroid had gone back to normal levels. It also left me with low white blood cells and they remain so to this day.

Following this I was sent to London to see a viral illness specialist and she diagnosed me with M.E. albeit this was an incorrect diagnosis it did lead me to join the ME Association and this is where I learnt about PPS. At this point I gathered as much information as I could about PPS and took it along to my GP who proved to be very supportive but trying to get a specialist to confirm it was a nightmare.

9 YEARS LATER

With my left arm and shoulder becoming ever weaker and my breathing an increasing challenge I was sent to see a Neurologist who carried out various tests. I now think that his prime objective was to prove that there was nothing wrong with me, not a very pleasant experience. In my final consultation with the Neurologist he stared into my eyes and said “I haven’t sent you to see a psychiatrist yet have I?” I was so angry that I returned the stare and said “you have made a big mistake.”

In the event, accepting that my breathing was an issue and that I was experiencing some muscle loss the Neurologist sent me to see an eminent respiratory specialist in Oxford.

This proved to be a major turning point in my diagnosis. This specialist was extremely sympathetic to my situation and following a thorough one and half hour head to toe examination including checking my breathing he confirmed that I did have PPS and that I only had 40% lung function. It was also a great boost to my morale when he apologised for the way I had been treated by some of his colleagues.

To provide a second opinion of his diagnosis this specialist sent me to see Dr Robin Howard at St Thomas’s who also confirmed PPS.

Since then my respiratory specialist in Oxford has taken care of me. He organised a consultation with a Cardiologist to diagnose a long term fainting problem that I had (probably PPS related) that resulted in the fitting of a pacemaker, problem resolved. When I developed severe swallowing problems leading to dramatic weight loss and diagnosis that the muscles in my throat had all but stopped working he immediately admitted me to his hospital ward, got me on a drip and arranged for me to have a PEG fitted which I have had ever since. I have been unable to eat food for 7 years all my nourishment now comes through the PEG via an Enteral Feeding Pump. Whilst I try not to take advantage of my relationship with this wonderful specialist he is always at the end of the phone for me if needed.

Eric, my husband, is also my hero, whenever something else goes wrong with me, we only get down for a day then he says come on its just another challenge in our lives and we get on with things, he is such a great support.

Each night he connects me up to my Enteral Feeding Pump and takes me off 6 hours later. The next morning he sterilises all the equipment as well as giving me any medication that needs to go through the PEG.

He does the cleaning, the shopping, the gardening, helps friends and neighbours and still finds time for some charity work as well as helping to maintain the grounds at our local church. He’s a gem.

Although, like most PPS sufferers, I have many more ailments than I have discussed in this brief story I do have the love of my life as my carer, he is always there for me when I need him. I also have a very good GP and health centre not to mention my extremely supportive Professor in Oxford. I consider myself the luckiest lady in the world and yet friends can’t understand why I smile and stay positive when things keep going wrong. I am sure that most of you are positive thinkers but if you do find it difficult from time to time try talking to someone with a positive outlook. I feel that we all need to make the most of every day we have on this earth.

The following is taken from a Polio Email List after the reporting of a long standing members passing. This is with permission from the authors who both live in the USA.

I do not know her personally, other than through a few posts, but each loss to our little community seems huge to me.

A response was as follows:-

As it does to me, too. The only hope I have is that we can, as a civilization, rid the planet of polio. At this point it’s something we can do.

I know that polio has shaped each of us. We are probably different than we would have been, had it not been for polio.

I’d like to think we are “better” for having had the experience. (Though I know of some examples of people who had polio, that could stand a “do over”!  )

I’ve met some very nice people; people I’m happy to call “friend” because I had polio. I’m glad for those friendships.

Too much of what and who we are, may be as a result of the way polio shaped our destiny. Since I like who I am, and “where” I am, I wouldn’t want to change the fact that I had polio. But I don’t believe that “polio” is necessary to make a person I’d like to know.

Incidences of polio peaked at a time when medical science and our culture were prepared to use the opportunity to do some things that have benefitted many, even those who didn’t have polio.

Can you imagine a polio epidemic today, with even “minor” illnesses bankrupting families and our nation? The idea that you might need a year or two of inpatient treatment and rehab, or possibly an even longer term need for respiratory support is beyond anything our society is willing to contemplate.

The idea that everyone would send in their dimes [March of Dimes], and that this would care for those in need, and provide protection for others just isn’t in our national ethos right now.

This change in our focus from a collective good, to one of “personal good” is not, in my opinion, our finest hour.

Because I see no “merit” in any one else having polio, I wish to see it eradicated. Because we have the means to do so, and by doing so, we can prevent all the bad consequences of having had polio, it would be a great shame on our civilization, should we falter in this effort.

I do hope that, should a tear be shed, at the passing of the “last” polio survivor, that it be a mixture of sadness at the passing of a good person, and joy at the end of era where polio and the trappings that go along with polio will never be known again.

There are plenty of other mountains to climb. Can you imagine a “vaccine” against hate or bigotry? A “seed” of a plant that will feed everyone, for a price they can afford, that promotes health and well being? Heck, if you are “wishing” you can wish that it tastes good, too!

Let us find another way to “make good people”.

Quiz for ‘Bright People’ – ANSWERS

1. BOXING

2. 2. NIAGARA FALLS. The rim is worn

down about two and a half feet each year

because of the millions of gallons of water

that rush over it every minute.

3. ASPARAGUS AND RHUBARB

4. STRAWBERRY

5. IT GREW INSIDE THE BOTTLE. The

bottles are placed over pear buds when

they are small, and wired in place on the

tree. The bottle is left in place for the

entire growing season. When the pears

are ripe they are snipped off at the stems.

6. DWARF, DWELL and DWINDLE

7. PERIOD. COMMA, COLON: SEMICOLON; DASH — HYPHEN – APOSTROPHE ’ QUESTION MARK ? EXCLAMATION POINT! QUOTATION MARK “” BRACKETS [ ]

PARANTHESIS ( ) BRACES { } AND ELLIPSES….

8. LETTUCE

9. SHOES, SOCKS, SANDALS, SNEAKERS, SLIPPERS, SKIS, SKATES, SNOWSHOES, STOCKINGS, STILTS

Management Committee [Trustees] Chair – Position Vacant

Secretary – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Treasurer – Gillian Bryan – gillian.bryan@poliosurvivorsnetwork.org.uk Glenna Tomlin – Glenna.tomlin@poliosurvivorsnetwork.org.uk

Operations Team

[Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors

Friend/Supporter. If you would like to support the Polio Survivors Network you can do so by making a yearly donation of your choice.

You will receive a yearly update of our activities and be invited to our AGM.

Membership Fees

Individual – £ 12.50 per year

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo. Associate Membership – £ 10.00 per year

Yearly fees can be paid by Standing Order.

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet.

Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us.

Donations

Donations, small or large, towards our work will always be gratefully received.

SEE BACK PAGE – Val Scrivener is making and selling brilliant photo greetings cards

Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

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%).

© Polio Survivors Network – Volume 7, Issue 8 – May 2012	Page 20
© PHOTO CARDS by MEMBER VAL SCRIVENER Sold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 inc. P & P.[Choose from large selection]Order by writing to PSNEmailing johnval.scrivener412@btinternet.comOr ring Val Direct on 01234 346 397

 01522 888601because WE’RE STILL HERE!

Post Polio Matters Volume 7 Issue 8 Read More »

Post Polio Matters Volume 7 Issue 7

March 2012Volume 7 Issue 7

The Polio Survivors Network Newsletter – Volume 7, Issue 7

n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

Live Eels tells the story of Kathy and Charlie’s early lives, and it also tells the story of the Author Andrew Bradford’s childhood

A 34

Page 2

2012Islip Village Hall 5 miles north of Oxford.

New Members and Donations received.

Contents

Page 2 Contents, New members and Donations

Page 3 Editorial

Page 4 Report from Trustees and information on the AGM.

Page 5 Members write.

Page 6, 7 ‘Live Eels and Grand Pianos – a family memoire by Author Andrew Bradford.

Page 8 – 14 Report from the Southern Californian PPS Newsletter. Treating Polio now and in the future, including research from around the World. Speaker Susan Perlman MD, reported by Mary Clarke Atwood with editorial assistance from Richard Daggett and Susan Perlman MD.

Page 14 Two snippets and a Quiz of Nine Questions.

Page 15 UK plan for rare diseases consultation launched, February 29th 2012. Chance for members to get involved in a response

Page 16,17 Partners in Policymaking Courses.

Page 17 Coconut Oil, Another of natures miracles?

Page 18 Member and Author Di Taylor writes, and part of Neurological Alliance Trustee meeting report.

Page 19 Contact and Membership Information.

Back Page Book 2, Travelling without a spare, a survivors guide to navigating the Post Polio Journey, Dr. Wenzel A Leff.

DISABILITY EXHIBITIONS —

NAIDEX

Birmingham NEC

1 – 3 May 2012

www.naidex.co.uk

NAIDEX SOUTH

17 – 18 Oct 2012

ExCeL London

www.naidexsouth.com

NAIDEX SCOTLAND

18 – 19 Sept 2013

www.naidex.co.uk

MOTABILITY ROADSHOW 21 – 23 June 2012 Peterborough East of England Showground

www.mobility roadshow.co.uk

We welcome New Member Ann Revell

Thank you to all members who have recently renewed.

Thank you to the following for donations given towards our work Barbara Smith, Barry & Olivia Branston

Christine Darlington, Walter West, Susan Freeman, H. Brown, N. Harvey, John Ward, Yvonne Grosse, Lynn Hobday, Shirley Rose, and Diana Nash. A total of £ 104 since last newsletter.

Plus Val Scriveners Card Sales adds another £20.00

We have no paid employees.

We would like to recognise and thank the following for so generously donating their time. The Trustees, Chris Salter, and Bob Price

Donations & offers of time towards our work are always welcome.

PSN AGM

23rd June

Editorial by Hilary Boone

Polio Survivors Network – Meeting information

If you have any matters you would like us to discuss at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

It is a beautiful sunny day without a cloud in the sky, snowdrops and daffodils in bloom, and I have just seen a Red Admiral Butterfly flit past the window.

Over the past five months I have been attending a Partners in Policymaking Course – Sharing Knowledge – at Lincoln College, five lots of two full days. For more information see page 16. Sarah Hill from Postural Care, or one of her team, will be coming to speak at our AGM and look forward to learning more about our polio issues and offering some possible solutions. ResMed UK, [they supported the Breathing Symposia in San Diego, watch on www.poliotoday.org— Videos] will also be presenting on ways their equipment can improve the quality of life for those of us with respiratory and sleeping issues. For more information on the AGM see front page map, and page 4.

AGM attendance slip. We have enclosed a slip with this newsletter. To enable us to plan well for the day it would really be helpful if all UK members [and anyone from overseas if they are in the UK of course] could please let us know if they are coming, might be coming, and are unable to come. We will be doing a full report from the speakers for the next newsletter.

I have included a report from Andrew Bradford about his book Live Eels and Grand Pianos – a family memoire. It is a really interesting read. See pages 6 and 7 for more information.

On the back page you will find information about another book written by Dr. Wenzell A Leff, a polio survivor.

Members if you read any books or articles that have anything to do with polio, polio survivors or PPS then please let us know. We would rather hear ten times than not at all.

Also included is a report of a presentation by Dr. Susan Perlman at the Southern California PPS Meeting on May 23rd 2010. It contains a lot of all round information that I hope will be of help. See pages 8 to 14.

Page 15 is information on a survey on rare diseases, and polio falls into that category, and if anyone is interested in putting forward some views on this then please get in touch.

Page 17 is some information on Raw Coconut Oil and how it might be of help in our diets.

Page 18, and hot off the press is part of a Trustee report from the Neurological Alliance regarding the Health and Social Care Bill and the National Audit Report. I will add a file with their full report to those receiving newsletters by email. Anyone else who would like a copy then please drop us a line, with an sae and we will post you a copy. PSN is a member of the Neurological Alliance.

There is much in the news almost daily about new NHS procedures, the change from Incapacity Benefits to [polio brain fog, will have to go look it up*] Employment and Support Allowance and all sorts of issues that affect folks with disabilities. Anyone want to write things like this up for the newsletter? * I left the polio brain fog piece in to show that if you are talking to someone and you too forget a word (and often they are the simplest words and it is so frustrating) then just describe it and move on. This method lessens the frustration. Loads of polio survivors and other folks forget words… we are not alone. You will likely remember the word later, and sometimes wake with a Eureka moment in the middle of the night!

Members who do not have internet access and would like more information on any subject please don’t hesitate to ring and I will see how we can help.

Financial Year – Runs from January 1st to December 31st 2012.

Dear All,

The Annual General Meeting will be on 23rd June 2012. This is being held in the Midlands, as promised, at Islip Village Hall, Islip,

Church Lane, Islip, Kidlington, Oxfordshire OX5 2TA.

Doors will open at 10.30am and the AGM commence at 11.00 am, with lunchtime commencing at about 12.00/12.15. We have decided that it will be far less stressful for the committee if we ask you to bring your own lunch. We will provide drinks, tea, herb tea, coffee, caffeine free coffee, fruit juice and biscuits. The afternoon session will have two speakers. Hilary recently watched a presentation from Sarah Hill who co-wrote the Postural Care Skills Programme. As both Richard and she have some of the problems raised, especially with night time positioning, although they do not have the multiple complexities usually dealt with, they will have had a home assessment by the time you read this. We thought that others might benefit from learning more. A representative will explain that when people find it harder to move parts of their bodies that they are at risk of developing body shape distortions. Postural care is about using the right equipment and positioning techniques to help protect and restore body shape and luckily for us it is never too late to start protecting someone’s body shape. Some people are having their body shape protected in the day – for example, with a wheelchair that supports their posture and braces – but getting no protection for their body shape at night. If you have scoliosis, kyphosis, lordosis, breathing or sleep problems, poor digestion, constipation for example then there may be suggestions to help us manage our lives. www.posturalcareskills.com

The other speaker will be from ResMed who will talk about respiratory assessment, their ventilators including the new S9 and more, and how professionals can see how you are doing from the downloads off the machines. www.resmed.co.uk, and hopefully a respiratory physiologist as well.

Please remember single action Manual Muscle Testing, e.g. For arms ‘grip my hand, pull against me, push against me’ does not test pattern of movement [can you lift a jug of water and pour it out with one hand like you used to] It is essential that instead of saying ‘my arms are weaker that you be more specific and say “I used to be able to cook a meal for 20 from scratch, but now I slide saucepans not lift them, I cannot mix or roll out the dough, I struggle to peel and cut vegetables, what is causing this new weakness?” This should hopefully lead the professional to test the muscles performing the actions you report. Please tell us bad instances where your reported weaknesses were not corroborated by only testing your muscles once, or when they tested your muscles a different way and confirmed what you were reporting.

No-one responded to our request for help with some of the tasks that we do to provide information for the members and a wider audience via our website on the internet. A couple of hours here and there could make a huge difference and more committee members would spread the workload. Please contact us for more information.

Best Wishes to you all.

Message from the Trustees.

Single Action Manual Muscle Testing

can be unreliable.

Testers are advised to test a range of muscles once and only do more testing if weakness is evident.

Problems occur when anyone can do the action once but the weakness starts a few repeats down the line.

“Saying ‘Ah’ once did not pick up swallowing issues till I got them to watch me repeating ‘Ah’.”

Nancy Almirall Missouri, USA

Polio age 3 in 1949 PPS diagnosed in 1999. <nalmirall@gmail.com>

I’m anxious to hear how you like Nemesis; I’m reading a great book now called

“The Polio Journals: Lessons from My Mother” by Ann Gross. The author is a therapist and it took her 20 years before she read her mother’s journals. It deals with the issues of anger, poor to no communication and the lack of emotional closeness that can occur when polio is never discussed in a family, or several generations. The mother had a profound disability, both legs remained paralyzed, but her mother and father and consequently, her husband and children held to the mindset that she was “no different from anyone else” except that she couldn’t dance or play tennis.

In my family, polio was never mentioned and we ignored the fact that I limped, could not climb stairs etc. I grew up believing that I was defective and just not good at things like running, ballet, and so on. I know in my case, this left me with a profound feeling of being a “faker” and a deep sense of shame. I still deal with anger since being diagnosed with PPS in 1999. This book addresses these problems in detail and I have found it very helpful.

Exhaustion is my most troubling symptom at this time. I never feel rested and wake up feeling as tired as when I go to bed. I am going to try using my bi pap again. I used it for several months but would remove it in my sleep, so never felt the benefit. I spend far too many days in my robe because I am too tired to get dressed. I am depressed and in therapy and on medication for depression. I’ve dealt with clinical depression for many years and have never been so exhausted as I am right now.

I would appreciate any discussion on our email list or letters on these points.

English born member Janet Whitworth who now lives in Washington State in America sent this for the newsletter saying ‘this feels so true’. [janhat55@comcast.net]

Vitamin F

Why do I have a variety of friends who are all so different in character? How can I get along with them all? I think that each one helps to bring out a ‘different’ part of me.

With one of them I am polite. I joke with another friend.

I sit down and talk about serious matters with one.

With another I laugh a lot. I may have a coke with one. I listen to one friend’s problems.

Then I listen to another one’s advice for me.

My friends are all like pieces of a jigsaw puzzle. When completed, they all form a treasure box. A treasure of friends! They are my friends who understand me better than myself, who support me through good days and bad days. We could pray together for each other.

Real Age doctors tell us that friends are good for our health. Dr. Oz calls them Vitamin F [for Friends] and counts the benefits of friends as essential to our wellbeing.

Research shows that people in strong social circles have less risk of depression and terminal strokes. If you enjoy Vitamin F constantly you can be up to 30 years younger than your real age. The warmth of friendship stops stress and even in your most intense moments it decreases the chance of a cardiac arrest or stroke by 50%.

I’m so happy that I have a stock of Vitamin F.

In summary, we should value our friends and keep in touch with them. We should try to see the funny side of things and laugh together, and pray for each other in the tough moments.

Thank you for being one of my Vitamins.

Live Eels and Grand Pianos – a family memoir

December 2011 was UK Disability History Month. At various venues across the country there was discussion, exhibitions and performances centred on the theme of “Celebrating Our Struggle for Equality.” This theme is also relevant to more current events such as; ‘the March of the hardest hit’ in May 2011, and recent attacks on the rights, dignity and standards of living of disabled people in the UK.

My parents, Charlie and Kathy Bradford were prominent in many campaigns for disability rights in the twentieth century. Earlier this year I published “Live Eels and Grand Pianos”, a family memoir that tells their story. I was born in Edmonton, North London, in 1948. That makes me the same age as the National Health Service, and without the support of the NHS, enlightened and supportive agencies such as local authority housing departments, and self-help organisations such as the British Polio Fellowship we could never have had a normal family life.

Charlie was born in 1906 and caught polio when he was three. It left him paralysed in both legs, his left arm and he had a severe curvature of the spine that meant he had to wear a leather and steel spinal jacket that weighed over twenty pounds. Kathy was born in 1912, caught the disease when she was just ten months old and it left her paralysed in both legs.

Before the war Charlie sold sweets from a wheelchair outside the local grammar school. Kathy worked as a tailoress, but she found that she was always sacked after just one year. As Live Eels and Grand Pianos explains:

“When she was sacked for the third time she asked her employer why she was being dismissed, and she was told that the boss had found out that due to her disability, the employer would have to pay extra national insurance contributions, backdated to the day that she started.

National Insurance in the 1930s was a payment made by the employer to the government to provide compensation for its employees in the event of an industrial injury, and no doubt some government actuary had decided that disabled workers were a higher risk and had to pay higher contributions. Kathy’s employer said that he couldn’t afford to pay that. Somebody else could do the job more cheaply. She had to go. She therefore came to an arrangement that she would reimburse the firm for the extra national insurance stamp.

She did this for ten years until the start of World War II, and she recorded all the payments she made in a series of notebooks. In 1938 she attended one of the first meetings of what became the British Polio Fellowship, a self-help organisation for people with her disability. A few years later the Polio Fellowship submitted these notebooks as evidence to the Beveridge Commission, and the national insurance rules were changed.”

The Second World War changed Kathy and Charlie’s lives. At the beginning of the war adults with disabilities were evacuated from big cities, and Kathy met Charlie at a ‘cripple camp’ in Dovercourt, Essex. Neither of them stayed there very long, as they found the atmosphere condescending and patronising. Charlie returned to London where he found work on an assembly line, making parts for bombers. For the first time in his life, society wanted him, and needed him to play a part. He never had to peddle sweets again; he worked on assembly lines until he was sixty two, when PPS set in.

Live Eels tells the story of Kathy and Charlie’s early lives, and it also tells the story of my childhood. While many people showed our family great kindness, others thought it wrong that two such seriously disabled people should bring a child into the world. Because we were such an unusual family we were the subject of a large number of articles on the national press. The People and the Sunday Express wrote long articles about us in the early 1950s. When the old boy who sold newspapers at the bottom of our street read the article in The People he verbally abused Charlie. I like to think that those days are long gone, but then I read press articles about disability hate crime today and I’m not so sure. Disabled people and their families have to continue to fight for rights and respect, and Live Eels is my contribution. All Kathy and Charlie ever wanted to do was to lead an ordinary family life, but to become ordinary they first of all had to become extraordinary.

I was lucky enough to inherit a wonderful photo archive of Kathy and Charlie, and the book is illustrated with over twenty black and white photographs of our family taken between the 1920s and the 1980s

To order a signed copy of ‘Live Eels and Grand Pianos’ send a cheque for £10.49 to the author at Belle Vue, 16 Gews Corner, Cheshunt, Herts, EN8 9BX or visit the author’s website: www.andrewbradfordauthor.com.

Including research from around the world

With Susan L. Perlman, M.D.

Clinical Professor of Neurology David Geffen School of Medicine University of California, Los Angeles

Presented at the Orange County, CA.

PPSG meeting, May 23, 2010

Reported by Mary Clarke Atwood

Editorial assistance by R. Daggett and S. L. Perlman, MD

Rancho Los Amigos Post-Polio Support Group Newsletter

February 2011

Dr. Perlman has learned about PPS from her patients – more than 500 of them in the last two decades. We always look forward to this annual presentation when Dr. Perlman generously shares her time and energy with local polio survivors.

This year’s review begins with patient care guidelines and includes the exciting work being done with stem cells. Although there is not yet a group working with stem cells in patients with post-polio in the United States, there has been a great deal of stem cell work in patients with other neurological disorders. What is learned from them may also apply to post-polio. Other research topics include physical and mental fatigue, pain, and predicting which polio survivors will develop polio problems and who will be spared.

Standard Patient Guidelines

Everyone needs a good primary care doctor, a knowledgeable physical therapist, and attention to good general health practices (weight management, exercise, appropriate assistive devices, relaxation training, sleep hygiene, emotional health). If a survivor has symptoms that impinge on these areas, they can be directly attacked to improve quality of life.

These standard polio survivor guidelines of the last ten years are still valid:

Make sure your symptoms are polio related. They may be due to another medical or neurological illness or to orthopedic problems, which must be identified and treated. New symptoms in a polio survivor are only related to polio about 1/3 of the time.

Treatment of other illnesses in a polio survivor must be monitored relative to the sensitivities of PPS (e.g. surgery, chemotherapy, use of cholesterol lowering medication).

Polio survivors with symptoms of PPS must take care to modify lifestyle and use rehabilitation medicine or services to develop a program of appropriate nonfatiguing exercise and reconditioning, assistive devices, pacing of activities, and finding their own limit. They need to work with somebody who is knowledgeable about rehabilitation to address these issues.

Caution: Do not push yourself past the limiting point of pain and fatigue.

No one is talking about “Conserve to Preserve” anymore. If you are a polio survivor and are beginning to experience fatigability and weakness, nobody should recommend that you stop doing everything, to never exercise again and get a wheelchair.

Why Increase the Awareness of Post-Polio?

Doctors treating polio survivors need to be aware that these patients are going to be different from patients who never had polio. Polio survivors report poorer functional status and poorer healthrelated quality of life than non-polios.

The life-altering effects of post-polio have not been adequately addressed by health care providers. They are not aware that they actually have tools they can use right now to help polio survivors with some of these unique problems.

Many publications indicate that polio survivors are best served in multidisciplinary clinics staffed by knowledgeable professionals. We need to make this known to others.

Will Healthcare Reform Make these Guidelines Achievable?

A personal experience:

Dr. Perlman recently saw a typical polio survivor with PPS. This patient had been seen in clinic during 2007-2008 and returned two years later.

Those earlier visits included recommendations for:

physical therapy to develop a nonfatiguing home exercise program

a sleep study for symptoms of obstructive sleep apnea possibly contributing to daytime fatigue.

However, a perfect storm of potential rationing and misinformation followed:

The patient’s HMO approved physical therapy but only for treatment of what appeared to be carpal tunnel syndrome. There were only the minimum number of treatments and that was it.

No home exercise program was developed.

No counseling about activity modification and pacing was achieved.

A sleep study was done confirming obstructive sleep apnea. But the physician in charge counseled that the mask to assist breathing would be very uncomfortable and it could take the patient a year to become satisfied. With a build up like that, the patient chose not to try it.

The patient returned to Dr. Perlman two years later with the same complaints:

symptoms of sleep apnea, daytime fatigue, plus weakness and fatigability in muscle areas – all because of potential rationing and misinformation.

There is no excuse for this, but it happens all the time. Polio survivors need to be aware and proactive with health care providers. Bring them information, but don’t overwhelm them while being firm. Show them what has been published defining the standard of care for a person with post-polio syndrome.

Will Dr. Perlman’s recommendations be provided this time? The patient has a new HMO, so time will tell.

Limited treatment and misinformation

are very frustrating because this patient could have had two years of improvement instead of continuing and probably worsening personal health status.

Polio Vaccine

Dr. Perlman believes that polio vaccinations need to be continued because the virus is out there. Just recently in Los Angeles there has been an outbreak of mumps because some people get lazy, or are afraid, and don’t get the vaccines for their children. So mumps comes back; polio will come back.

Globally, the number of new polio cases registered in the first four months of 2010 is down to 56, which is a 75% drop from the same period last year.

In Nigeria only two children have been paralyzed by wild polio virus compared with 123 during the same period in 2009.

For the first time in India, there has not been a single case caused by the most virulent polio viral type for four months straight.

Editor’s Note: Centers for Disease Control (CDC) – Outbreak Notice

Polio Outbreak in Tajikistan, Cases in Russia Risk of Spread to other Central Asian Countries

This outbreak represents the first importation of polio in the World Health Organization (WHO) European Region since it was certified polio-free in 2002. As of October 14, 2010, the Tajikistan Ministry of Health has reported 706 cases of acute flaccid paralysis. Of these cases, 458 have been laboratoryconfirmed as polio. Russia has reported 14 polio cases to date, five of which are linked to travelers. http:// www.nc.cdc.gov/travel/

Research around the World

United States, Canada, Spain, Sweden, Israel, France, The Netherlands

Stem Cell Therapy

Lou Gehrig’s disease (ALS, MND in UK] research is looking at problems of upper motor neurons, typically spared in postpolio and lower motor neurons, which are typically affected in post-polio. These neurons are both being targeted with stem cell therapies in ALS patients. The nine ongoing therapeutic stem cell trials look very promising, both in Europe and one study in the United States.

The U.S. group is spearheading an ALS trial with stem cells derived from bone marrow. These results should open the doors to similar treatment trials in postpolio because the cells are the same, the target is the same, and ideally the outcome would be the same.

Researchers in the U.S. and some scientific colleagues in Europe are working on ways to make stem cells behave like nerve cells, and to make them go to the part of the nervous system in which they are interested (spinal cord, basal ganglia, memory centers) and do what they are supposed to do.

It is important to point out that some of the fringe groups in China and Costa Rica may not have done as much advance preparation of the bone marrow or umbilical cord stem cells. Perhaps the preparation may not have been the right kind, they may not have been modified in the right way, or they

may not have been stimulated with the right growth factors. In fact, China has abandoned treating ALS patients with stem cells because that didn’t work.

Although our U.S. stem cell studies for Parkinson’s disease and ALS began three or four years after the Chinese, we are now working with stem cells whose behavior can be predicted and are assured they will not cause cancer.

Dr. Perlman expects to have much more information on stem cells when she speaks to this group again on Sunday, May 22, 2011.

Quality of Life

A study from two post-polio clinics in Israel found that approximately 70% of the participants expressed the belief that exposure to up-to-date information about post-polio, as well as participation in social activities, might improve their quality of life. Dr. Perlman pointed out that a support group provides those things.

Reviews and reports from other large polio clinics have also shown that education and getting people to take control of their symptoms and condition definitely improves their quality of life.

This study from Israel concluded that information about the physical and mental components of polio survivors, as well as the desire to partake in specific activities for polio survivors, may serve as a basis for the operations and prioritization of service providers. Dr. Perlman recommends including the importance of this information on grant applications.

Fatigue

Eighty-percent of polio survivors with new symptoms have fatigue, or pain, or both. Dr. Trojan’s group in Canada studied General, Physical, and Mental Fatigue to determine what modifying factors could be changed and which could not.

These non-modifiable factors, which seemed to have an effect on general fatigue, could not be changed:

respiratory function fibromyalgia muscle strength age

time since acute polio

In this Canadian study there weren’t any non-modifiable factors which seemed to correlate with mental fatigue. However, the ongoing Mental Fatigue study at the U.S National Institutes of Health (NIH) may discover some non-modifiable hardwiring changes relating to the original polio that contribute to brain fatigue. So theoretically, if you have brain fatigue, it is modifiable.

Potentially modifiable factors account for a portion of fatigue in PPS. Dr. Perlman said the presence of these needs to be dealt with to help reduce fatigue. If you deal with stress and depression, then general fatigue scores will improve, theoretically.

Reducing Physical Fatigue

Physical fatigue is the most common symptom and the most disabling in patients with post-polio syndrome. A Spanish study analyzed the effectiveness of various treatments used to improve fatigue syndrome in postpolio patients. They retrieved 396 articles, of which 23 were analyzed in detail. These treatment techniques reduced fatigue in 705 patients.

lamotrigine (Lamictal) bromocriptine (Parlodel) aerobics and flexibility exercises hydrokinesitherapy

technical aids

Dr. Perlman suggests that when you pace your physical activity you should be able to manage physical fatigue. If you treat the pain, physical fatigue will improve.

Mental Fatigue in Polio Survivors

The study of “Mental Fatigue in Polio Survivors” at NIH examines whether mental impairment is present in PPS patients. If it does exist, how does it interfere with self-functioning of patients?

One of the biggest mysteries in postpolio is problems with slow thinking and memory which seem to go right along with motor difficulties. Is this truly a brain mediated fatigue that affects thinking, learning, etc.? Or does it relate more to psychological or emotional factors?

The term “brain fatigue” is frequently used by patients to express problems in the areas of attention, concentration, memory, and clear thinking. Unfortunately, little is known about cognitive fatigue of PPS patients.

It has been accepted that polio survivors tend not be burdened by psychological baggage that is going to add to their neurologic and physical symptoms. If you happen to have depression it is obviously going to impair you, but it is not directly related to polio.

Polio treatment really needs to be focused on physical and neurologic hardwiring. Many studies have been done trying to sort out what is going on above the anterior horn cell, but there is still no consensus.

Pain

A study in Sweden concluded that pain is common in PPS patients; most patients experienced pain caused by an injury to body tissues. Women have pain more often than men. Older patients experience pain less often than younger patients. Age at time of primary polio infection is important for the development of pain. When neuropathic pain is present, it is important to proceed with a neurological examination to find an adequate diagnosis.

Orthotics for the Knee

Orthoses play an important role in the therapeutic care of polio survivors. The aim is usually to secure the knee, preventing excessive recurvatum while respecting the patient’s own gait.

A study in France by Francis Genet’s group concluded:

Orthoses must be light and pressurefree if they are to be tolerated and therefore effective.

Some deformities may be helpful for the patients’ gait and, therefore, corrections may worsen their gait, especially if a realignment of segments is attempted. It is therefore essential to carefully preassess any change brought to the orthoses as well as proper indications for corrective surgery.

In addition, it is essential for the patient to be monitored by a specialized team.

Impact of Age and Comorbidity on the Progression of Disability

A study from The Netherlands concluded that despite a reduction in

muscle strength over a five-year period, the PPS patients’ disability levels increased little.

Increased weakness in a quad or in a shoulder muscle really didn’t have a significant impact on level of disability, as measured by disability scales.

Increased age and the other number of medical factors or surgical problems do have a negative effect on disability.

Predicting which Polio Survivors will Develop PPS

Looking at the long-term ongoing studies, there is probably about a 60 % risk of developing PPS and probably a 40% risk of just living with the original deficits.

In 1995 Post-Polio Health International (PHI), an excellent website and group http://www.post-polio.org/index.html, established The Research Fund which is dedicated to seeking scientific information leading to eventual amelioration of the consequences of poliomyelitis and/or neuromuscular respiratory diseases.

In 2007 the fourth PHI award was looking for biomarkers in blood and spinal fluid of polio survivors to see if they could identify a marker that would determine if a person will probably develop postpolio symptoms, or probably not develop them.

How can each group be identified? It has been confirmed that individuals with PPS have higher levels of antibodies and regulatory T cells (which are part of the immune system) circulating in the blood, compared with healthy agematched controls who never had polio. The immune factors that have been discussed in previous years (tumor necrosis factor Alpha, the interferons, and a few others) are definitely at a higher level in people experiencing active post-polio symptoms.

In this study a cross section was assessed. Stable polio individuals who do not have any new symptomology had variable intermediate levels…a little higher than average, but a little lower than the true post-polio population – not normal but not abnormal.

These easier blood tests are a nice first step that can be built upon. A larger prospective study of stable polio individuals over five years would probably indicate who might develop post-polio symptoms (fatigue, weakness, new atrophy) and who would not. What will happen to their blood tests over that period of time?

The final report data from the 2009 PHI award indicate that there is a low level of polio virus (PV) protein activity persisting for decades in most polio survivors. The debris is there; it is not infectious, but it is there.

The goal will be to develop a treatment for polio survivors, or survivors of other neurologic infectious illnesses, that may linger and cause problems. Perhaps an effective antibiotic will prevent PPS in the future or prevent progression.

Conclusion

As PPS research in many areas continues worldwide, we look forward to learning more from Dr. Perlman in May 2011when she presents research updates and answers personal

© Polio Survivors Network – Volume 7, Issue 7 – March 2012	Page 14
A man has been having a medical problem for a couple of weeks and decides that as it is getting worse that he better make an appointment with his GP.He rings and the Receptionist happily offers him an appointment in three weeks time. The man exclaims “Three weeks!”The Receptionist, now not quite so happy, says “Well, what is wrong with you?” The man replies “Now or then?”	

questions.

All rights reserved. No parts of this report may be used in other newsletters, posted online, reproduced or transmitted in any form without prior written permission from us. Please submit your request to RanchoPPSG@hotmail.com – or send it to 12720 La Reina Ave., Downey CA 90242

This report can also be viewed at www.RanchoPPSG.com

Reprinted with permission.

Helping Hands: Monkey Helpers for the Disabled

Established in 1979 is the only non-profit organization in the world that raises and trains capuchin monkeys to provide daily, in-home assistance to people living with spinal cord injury or other mobility impairments. www.monkeyhelpers.org

An amazing 5 minute video clip called Mountain Gorilla.

Watch the expressions on the man’s face as you hear his friends narration that the wild Silver Back has sat down a metre behind him with three youngsters in front of him, who feel his hair and after a few minutes they all leave as quietly as they came. www.wimp.com/mountaingorilla/

Quiz for ‘Bright People’ – Answers will be in the next issue.

There are only nine questions. This is a quiz for people who know everything! I found out in a hurry that I didn’t. These are not trick questions. They are straight questions with straight answers.

1. Name the one sport in which neither the spectators nor the participants know the score or the leader until the contest ends.

2. What famous North American landmark is constantly moving backward?

3 Of all vegetables, only two can live to produce on their own for several growing seasons. All other vegetables must be replanted every year. What are the only two perennial vegetables?

4. What fruit has its seeds on the outside?

5. In many liquor stores, you can buy pear brandy, with a real pear inside the bottle. The pear is whole and ripe, and the bottle is genuine; it hasn’t been cut in any way. How did the pear get inside the bottle?

6. Only three words in standard English begin with the letters ‘ dw’ and they are all common words. Name two of them.

7. There are 14 punctuation marks in English grammar. Can you name at least half of them?

8. Name the only vegetable or fruit that is never sold frozen, canned, processed, cooked, or in any other form except fresh.

9. Name 6 or more things that you can wear on your feet beginning with the letter ‘S.’

UK Plan for rare diseases consultation launched – 29th February 2012

Earlier diagnosis of a rare condition and better co-ordinated care will help improve the quality of life for people with rare diseases and their families, according to the first ever UK plan on rare diseases, published for consultation today by the Department of Health.

Rare diseases – those that affect fewer than 5 in 10,000 of the population – can affect anybody at any stage of their life, and can affect physical or mental health or both. They can range from debilitating, life-limiting conditions to manageable conditions that don’t affect daily living.

The UK already has a strong record of supporting and treating people with rare diseases through dedicated healthcare professionals who provide care for complex conditions, world class research and strong patient engagement. This plan will build on this.

The rare diseases consultation:

 recommends using specialist centres to make exact diagnosis – this will make sure people

are treated earlier and in some cases this could save lives

 acknowledges that all doctors should have the right training to be aware of the possibility of a

rare disease

 recommends that the care of patients with rare diseases should be better co-ordinated Health Minister Lord Howe said:

“The UK has a good story to tell about supporting and treating people with rare diseases. But we know the challenges people face and that there is always room for improvement.

“This is the first time the UK has had a coherent set of proposals on rare diseases which outlines how we can build on our strengths through improved co-ordination of services, stronger research and better engagement with patients and their families.

“These proposals will benefit patients and help the NHS to be more efficient and co-ordinated, as well as save money. A recent unpublished study has shown that better care of patients with rare neuromuscular diseases could save the NHS £31 million per year by avoiding emergency admissions.”

Bruce Keogh, NHS Medical Director said:

“I welcome the publication of the consultation document on rare diseases. It clearly demonstrates the importance the Government attaches to the treatment of patients with rare conditions.

“In England, much of the implementation of the final plan will be for the NHS Commissioning Board to take forward in its role as single, national commissioner for specialised and highly specialised services.”

Background

This is a UK-wide consultation undertaken by the Department of Health on behalf of all 4 UK health administrations. The consultation on rare diseases has been launched today following the European Council’s recommendation that every member state of the European Union should develop a national strategy on rare diseases. Responses to the consultation will inform the final plan, which is due to be produced by the end of 2013.

The UK participates in rare disease research at European level and will be actively involved in the new International Rare Disease Research Consortium.

The closing date for responses is Friday 25 May 2012.

Editors Note: PSN will be responding to this Consultation. Any member who would like to comment please get in touch by 1st May 2012.

PARTNERS IN POLICYMAKING http://www.partnersinpolicymaking.co.uk/

Partners in Policymaking is an umbrella name for a suite of leadership training courses for disabled adults, parents and carers of disabled children, professionals and other service providers working in education, health and leisure. It has grown over the past 10 years into further leadership courses and the development of a national network of people – champions who believe that all people should have the right to live the life they choose.

Having a disability or having a disabled child means that you may need support. The support can come from lots of different places and organisations such as health, social services, education and leisure services. Sometimes trying to get what you need and getting access to the right information seems very complicated.

Partners in Policymaking (PiP) and associated courses help people understand how the health and social care system works, organise meetings and present questions without getting frustrated. All PiP courses aim to help find solutions to improve people’s lives and give participants the confidence to work in partnership to enable them or their loved ones to have choice and control over their lives.

Over the past five months I have been attending a Partners in Policymaking Course – Sharing Knowledge – at Lincoln College, five lots of two full days. We have been a cross section of disabilities – some like me with the disability and some parents of children with a disability. Hearing issues that we are coming up against from a different perspective has been really interesting and informative for us all. Now when we discuss health and local government issues we have a wider base of experience and people we can contact for more information. Not only those on our course but access to all 2000+ graduates ahead of us.

One of the speakers was Sarah Hill from Postural Care and it seemed to be just for people with multiple complex disabilities. However, I soon realised that some of the issues Polio Survivors have with the way our spines are now [scoliosis, kyphosis, lordosis] and body positioning paralysed or weak limbs at night might be helped. I discussed Richards and my issues with Sarah and we will be having a home assessment in a few days time. Sarah, or one of her team, will be coming to speak at our AGM and look forward to learning more about our polio issues and offering some possible solutions.

Another speaker was Steve McGuiness on the Autistic spectrum. Why would Polio Survivors be interested in these subjects you may be asking? We watched an 11 minute piece with snippets of animated children’s drawings and video clips, with a variety of sound effects alongside the commentary. At the end of the piece we were asked for our comments, which were varied. The two people with autism explained how they saw it, so I said ‘I do not have autism but had to look away from the screen to hear the commentary.’ I was told this was really interesting and did I have a neurological condition. I then explained that there are times during the day that I may be concentrating on something on the computer, watching tv, reading something and I would not hear the first half of Richards sentence unless he first called me by name to break into my space. And this is when he is sitting right next to me! I had wondered if it was a hearing loss, or an inability to concentrate as I can no longer multi task, or ? Only ten days ago I had a hearing test that showed only ‘mild loss’. People with autism can experience problems in a variety of ways, too much sound, too many colours, too many people in a small space, etc., and they cannot process all of this. I will be meeting Steve again to discuss this further and will let you know what I learn.

Another speaker was Phoebe Caldwell, and those with access to the Internet can watch some video clips and a full presentation on her website [Films] www.PhoebeCaldwell.com. She is an Interactive Communication Practitioner and demonstrated how to communicate with people who have difficulties in that area. My simple explanation, although the work is more complex, is that

you need to listen with all your body to how they are communicating with themselves and use that to start communication with them, e.g. Use similar sounds to those they are making but add a higher emphasis at the end as though it was a question. I came home and started to ‘listen’ to not only the sounds but how the cat behaves towards us at different times of the day and I have now been able to separate, ‘There is no food down for me, the food there has been down there too long and I would rather have fresh, I am just saying hello, or please move your leg so that I can get more comfortable on your lap.’

These courses ere started in the States and are internationally run. So if you might be interested in learning more have a look at Lynne Elwell’s website.

We were asked to present our groups presentation on issues with assessments again on Monday to an audience of 90 commissioning and other staff. We used PowerPoint, role play, case history and humour to showcase a few problems and possible solutions to save money, time and stress.. We demonstrated that we were able to bat at their level, and this has made a difference.

Coconut Oil: Another of Nature’s Miracles?

Coconuts have received a lot of bad press in the last decade or two. Warnings about the dangers of fats had coconuts on the list of harmful foods, but no more.

There are several medical disorders that block fuel molecules from getting from the blood to the body’s muscle and nerve cells. According to research, coconut converts to very small fuel molecules able to reach cells previously deprived of fuel. In this way coconut is believed to reduce the symptoms of such disorders.

The list includes: Parkinson’s Disease, Chronic Fatigue, Alzheimer’s and other neurological disorders. According to The Coconut Research Center studies have shown that the nut is an antimicrobial and helps protect against cancer, diabetes, thyroid problems, increases good cholesterol, and protects just about every part of the body.

Recommendation: 1 tbsp. of virgin coconut oil (comes as a paste) per day for maintenance, up to 5 per day when symptoms of a disorder are present.

Sources: www.coconutresearchcenter.org/, www.youtube.com/watch_popup?v=ZZOR-Qd3QSg www.naturalnews.com/032727_coconut_oil_Alzheimers.html

Reproduced with permission from the Southern Californian PPS Manager, March/April 2012. www.ppsmanager.com

Editors Note. The following link is an article in the Tampa Bay Times, Florida, that my daughter sent to me about six weeks ago.

October 29th 2008.

www.tampabay.com/news/aging/article879333.ece – United States Summary beside the picture.

After two weeks of taking coconut oil, Steve Newport’s results in an early onset Alzheimer’s test gradually improved says his wife, Dr. Mary Newport. Before treatment Steve could barely remember how to draw a clock. Two weeks after adding coconut oil to his diet, his drawing improved. After 37 days, Steve’s drawing gained even more clarity. The oil seemed to ‘lift the fog’, his wife says.

I searched and found a few more articles and my husband and I decided it was worth trying. We purchased the ‘Raw Organic Coconut Oil’ from a health food shop then found our local Tesco stocked it. We have added a tablespoon to our morning porage, cinnamon and berries. We gave copies of the articles to Richards Parkinsons Consultant and our Chiropractor, Dr. Darren Barnes-Heath and we will report on their views after we see them next time.

Member and Author Di Taylor would like to hear from you.

I am attempting to locate all polio survivors, and their friends and families.

“I would like to include everyone who may know of any polio survivors, so I can glean their tales, and write them for others to read. From diagnosis, through treatment or operation, whatever it may have been, I would love to hear.

I contracted polio at the age of 7 months, and grew up wearing callipers on my left leg. Abandoned only when I turned 14, at the start of surgery!

Don’t be shy at coming forward – you can always do this by giving a false name if you so wish.”

Stories may be published in Post Polio Matters or eventually made into a book. All doctors, surgeons, alternative practitioners, are invited to write their patients’ treatments (using pseudonyms) too, as so little is known in the UK about polio in the UK.

Contact Di at: 01444 400130 OR

Email on: textworks202@btopenworld.com

The Neurological Alliance – Part of the summary of the January Trustees Meeting. Received 13th March 2012.

Campaigning

Health and Social Care Bill amendment on commissioning for less common conditions

The Alliance’s Health and Social Care Bill sub-group has continued to press the issue of a commissioning for people with less common neurological conditions. To add strength to our voice, the Alliance has built a coalition of 27 organisations with a similar interest, including Royal Colleges of Psychiatrists and Physicians, Help the Hospices and Pancreatic Cancer UK, to support our position.

Baroness Finlay tabled two amendments at report stage of the Bill, aimed at ensuring clinical commissioning groups will be required to collaborate when commissioning services for people with less common conditions. In advance of this we placed an article in House magazine for parliamentarians and our press release on the issue was picked up in the Observer.

As our amendments were not moved at report stage, we are currently exploring whether to table a further amendment at the Bill’s Third Reading in the Lords and have discussed our concerns with the Shadow Health Team at a recent small roundtable event.

Our latest intelligence is that the Bill will pass from the Lords to the House of Commons on 20th March, where it will conclude its passage through Parliament.

Thanks to the sub group and Parkinson’s UK press team for their work on this.

National Audit Office (NOA) report campaign – Services for people with neurological conditions.

Our campaign around the NAO report has resulted in over 1,200 sign ups to the e action. 77% of MPs have now heard about our campaign and 92 have signed our Early Day Motion calling for an outcomes strategy for neurology. Thank you for your support so far – please help us keep up the pressure by continuing to promote our e campaign through your newsletters, Twitter and Facebook.

Management Committee [Trustees] Chair – Position Vacant

Operations Team

[Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors

Friend/Supporter. If you would like to support the Polio Survivors Network you can do so by making a yearly donation of your choice.

You will receive a yearly update of our activities and be invited to our AGM.

Membership Fees

Individual – £ 12.50 per year

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo. Associate Membership – £ 10.00 per year

Yearly fees can be paid by Standing Order.

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet.

Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us.

Donations

Donations, small or large, towards our work will always be gratefully received.

SEE BACK PAGE – Val Scrivener is making and selling brilliant photo greetings cards

Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

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%).

 01522 888601because WE’RE STILL HERE!

Sold in aid of POLIO SURVIVORS NETWORK Pack of 5 – £3.95 inc. P & P.

[Choose from large selection]

Order by writing to PSN

Emailing johnval.scrivener412@btinternet.com

Or ringing Val Direct on 01234 346 397

Traveling Without A Spare:A Survivor’s Guide to Navigating the Post-Polio Journey,Is Dr. Wenzel A. Leff’s first book [209 pages]He was born and raised in Mobridge, South Dakota, the third of six children. After graduating from medical school at Washington University in St. Louis, Missouri, he began a long and active practice in Internal Medicine.Dr. Leff draws on his own polio experience and his forty -plus-year career in Internal Medicine, to provide polio survivors and their families, caregivers, and healthcare team a clearer understanding of the stages and complexities of polio.This informative book will help survivors evaluate their own bodies and condition, and empower them to make the most of their remaining strength and mobility.WAL Publishing LLCISBN 978-0-578-08843-3 Cover price: $15

Post Polio Matters Volume 7 Issue 7 Read More »

Post Polio Matters Volume 7 Issue 6

December 2011Volume 7Issue 6

The Polio Survivors Network Newsletter – Volume 7, Issue 6

n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

A multi-coloured flower was chosen to reflect the huge variation in how the Polio virus has affected our Lives.

Wickes generous donation enables PSN to launch our updated Website

Page 2

melanin (or colour) in head hair, eyebrows, or eyelashes

New Members and Donations received.

Contents

Page 2 Contents, New members and Donations

Page 3 Editorial, ‘Making Peace with your new found help’ & Trustee Meeting Dates.

Page 4 Message from the Trustees.

Page 5 Member Lynn Hobday asks and the responses.

Page 6 Information from European Polio Union PPS Conference, includes details of presentations by PowerPoint, Video and Poster and the Journal of Rehabilitation Medicine 2011, Supplement 49

Page 9 Enticing EPU Conference Excerpts

Page 14 Information from the 3rd Breathing Symposium 2011 held at the Salk Institute La Jolla, California.

Page 16 New article abstract – Restless Leg Syndrome in post polio syndrome…

Page 17 The 12 days of Christmas Re-examined. 

Page 18 Disabled People Against Cuts and a couple more 

Page19 Contact and Membership Information.

Page 20 Back page. Val Scriveners Photo cards for sale to raise funds for PSN.

Back Page. Crippen Cartoon.

PSN AGM 23rd June 2012

In Midlands

NAIDEX

Birmingham NEC 1 – 3 May 2012

www.naidex.co.uk

NAIDEX SOUTH 17 – 18 Oct 2012 ExCeL London

www.naidexsouth.com

NAIDEX SCOTLAND 18 – 19 Sept 2013 www.naidex.co.uk

MOTABILITY ROADSHOW 21 – 23 June 2012 Peterborough East of England Showground

www.mobility roadshow.co.uk

Thank you to all members who have recently renewed.

Thank you to the following for donations given towards our work Nicholas Harvey, John Doohan, Shirley Rose, Maureen Allison, Stuart Tanfield, John Finley, Dorothy Ives, J Simm, Ann Telford, Joy Witheridge, J Curtis, Lesley Forsyth, Victor Gabriel, Rosemary Staniforth, Brian Thompson, Janet Dobbie, Bridget Langdon, Yvonne Liggins, Sandy Yarrow, Ann Stone, Hilary Davies, Margaret Lamb, Winifred Hyam

Val Scriveners Card Sales so far this year adds £50.00 Donations since last notified is £ 454.00

We have no paid employees. We would like to recognise and thank the following for so generously donating their time. The Trustees, Chris Salter, Dave Eate, and Bob Price

Poliosis Donations & offers of time towards our work are always welcome.

is the decrease or absence of

Editorial by Hilary Boone

Polio Survivors Network – Meeting information

The next Trustees Meeting is being held by Skype in January 2011

If you have any matters for our attention at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

Early notification of the AGM – 23rd June 2011 in the Midlands.

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

Please read Message from Trustees on page 4.

Info for Members not on the Internet. In this issue I have listed a huge amount of information, PowerPoint, Video and Poster presentations and medical articles from the European Polio Union Conference in Cøpenhagen and the Breathing Symposium 2011 at the Salk Institute, California. We do appreciate some of our members do not have Internet Access and may not have relatives or friends who can access information for them. If you fall into this category and notice something that you want more information on then please ring or write to us and we will see what we can do to help.

Last issue article on Gastrointestinal Problems. I would like to thank the members who did ring or email me to discuss this/their issues. I have added some information taken from the EU Conference presentation number 28 Voiding and bowel problems on page 13.

Financial Year – We have changed from April to March to a full calendar year. This year will therefore only be for 9 months and the next year will run from January 1st to December 31st 2012.

Annual General Meeting – This will be held on the 23rd June 2012 in the Midlands. We will have at least two speakers on a post polio related issue. We will notify you as soon as the venue has been confirmed. It would really help us choose which room size if all members who would be interested in attending on that day could write, email or phone us. Thank you for your assistance.

“MAKING PEACE” WITH YOUR NEW FOUND HELP.

The following was published on a polio email discussion list. I repeat this with permission from the author.

We have a new member, who has asked me a question. The question is “Does anyone have any hints as to how to adapt to using a wheelchair, after years of not needing one, and finding that a wheelchair is now desirable?”

I’ll add my own two cents to this discussion by saying:

1) Do one of your longer, more tiring errands, using your new wheelchair.

2) Ask yourself, during the errand, were you able to concentrate on what you came to do, or were you thinking about “how can I get this done with the minimum of walking and effort”?

3) At the end of the errand, did you have energy left to do some other things you wanted to do that day? Especially fun things?

4) At the end of that day, were you as tired as you would have been, had you walked?

5) If you take pain meds, assess your level of pain at the end if the day? Better?

If the answer to most of these questions is that using the wheelchair made each day less tiring, more productive, and left you with some energy to enjoy the nicer things in life, then using the wheelchair was a “gift”

The more you see it as “enabling” you to do things, rather than making It harder, the closer you have come to “making peace” with your new found help

New Logo and updated Website Launch.

As stated on the front page the multi coloured flower was chosen to reflect the variation in how polio has and is affecting our lives.

Your committee are doing their best to manage their PPS lives and give up what time they can to Polio Survivors Network. Publishing the Members Survey and work on our new Branding – which involves changing our Website and all Publications etc thanks to the generous donation from Wickes – has taken a lot of ‘woman’ hours and we are doing our best but must apologise for being behind our intended schedule. Once this newsletter is published and posted then we will concentrate on the other PSN publications we are working on. In the meantime please let us know what you think of our efforts and we welcome suggestions for further improvements.

PSN Needs U

At the moment the post of Chair is vacant. The remaining Trustees, Hilary, Glenna and Gill are sharing the workload between them.

Once again we ask our members if they or anyone they know would be interested in joining PSN to share out the tasks needed to keep this organisation going whilst there are still polio survivors in need of support.

Whilst we need to increase our small committee of three you do not have to be on the committee to undertake a task. So get in touch with us if you would like to talk about how you might help . Helping with the committee work, raising funds, and some other ideas are:-

 Reading and précising medical articles, video presentations, etc.

 Letting us know what is happening in your county NHS wise. i.e.

Are your Clinical Commissioning Groups up and running?

 Letting us know about any Hospital Clinics and any other health

professional you see that are helping you manage your life to a

greater degree.

 Sending us information for use in the newsletters:-

Interesting articles/items in magazines, brochures etc.

Visiting Naidex, Motability Roadshow your local Independent Living Centre or Disability Store. Did you find anything of interest?

 Tell us what is happening in your County in Adult Social Care.

 Help us answer our members questions. See example on the next

page.

 Anything else you can think of that would benefit polio survivors.

Looking forward to hearing from you.

Message from the [Chair] Trustees.

Dec 2011 “I went to the retail park just around the corner, when I got back all the hairs on my legs were holding hands to keep warm”

Member

John Hinton

Question asked by Member Lynn Hobday.

„Does PSN have any new ideas how to keep our legs warmer?’

I asked for help not only on our members list but also on another Polio email list that I subscribe to. Here are the responses from the extended discussions starting with our Members.

Hilary says – Your legs should be warmest after you have been in bed for some time and therefore if you can – or if you don’t live alone and can get help – put on items under the covers or as soon as you take the covers off and then add layers. After a warm bath is a good idea but not if the room is not warm too as it may only be the outer layer of your legs that has warmed up. Pat says – Pure silk underwear – I get mine from John Lewis.

Anne says ‘M&S thermal underwear – It has to be really hot before I discard this.’

Dinah – Mohair socks and a few years ago I bought a duvet called ‘Climarelle’ made of a manmade fibre which adjusts to one’s body temperature, expensive but worth every penny. Zsuzsanna – Heated insoles with rechargeable batteries from Warmawear.com [Warmawear – Fynzi Limited, Building 173, Curie Avenue, Didcot, OX11 0QG Telephone. 0800 161 3832 Chris Salter – Battery Heated Socks – www.amazinghealth.co.uk/battery-heated-socks.htm. Heated Insoles – www.amazinghealth.co.uk/heated-insoles.htm. Note different insole products may have different heating areas, the next url claims “New 2011 heated insoles with larger heating area are essential for anyone that suffers with cold feet.” www.blazewear.com/ecatalogue.pdf. Then there are the rather expensive ‘state of the art’ Thermo Soles!! www.thermosoles.eu/

Beverley in USA – a heat pad for the area of my bed where leg is coldest and my four cats and German Shepherd dog fight over who gets nearest to this.

Eddie in USA – told us about the Christchurch based The Merino Company and Mt Maunganui based product development company, Locus Research, have scored a major international win with a Medical Design Excellence Award (MDEA) announced in the United States for their innovative range of merino wool compression garments designed and developed in New Zealand. If you don’t need a compression garment look for Marino wool underwear and socks.

Non members responses.

Roxann in chilly Indiana – asked her polio group and Meg their leader has an idea. She has cold toes and can’t wear two pairs of socks because they won’t fit in her shoes. So she cut two to three inches off the toes of her husband’s old socks and that small toe piece fit over her toes and fit into her shoes and now she has warmer toes.

Mary Ellen in Texas – The Hot Hands and Feet Packs hunters use and are rechargeable. Donnie in USA – Flannel pyjamas with collar at night and turn collar up and layers when out and have even worn two or three hats when taking dog for a walk in really cold weather.

Jeff in Ohio – Using an electric blanket just to warm the bed up before I get in and only having it on a very low heat if its really cold.

Susan in USA – My arms and shoulders get cold at night in the winter but my torso gets too hot if I wear a full sweatshirt to bed so I wear a long sleeved t-shirt to bed but I also took an old sweatshirt, cut the body off it straight across from one underarm to the next. I wear that on top of my t-shirt. After cutting the body of the sweatshirt off it was left with sleeves, shoulders and neck only – like a shrug. Keeps my shoulders and arms warm.

Lady at NA AGM in wheelchair – long fingerless gloves from Dorothy Perkins are great.

Pat Asked – Does anyone know where a polio survivor can now get a sheepskin lined heated boot?

Answer

Try Columbia products by www.columbiasportswear.co.uk main store is at 170 Kensington High Street, London. Tel. 0207 937 2486

Post Polio Syndrome – a challenge of today

European Conference, Copenhagen, Denmark, August 31st to September 2nd, 2011

European Polio Union [EPU} and the Danish Society of Polio and Accident Victims [PTU] provide the following information post Conference

PowerPoint Presentations

www.polioconference.com/Power%20points.php

Video presentations

www.informed-scientist.org/congress/european-conference-on-post-polio-syndrome

Poster Presentations

www.polioconference.com/Poster%20presentations.php

Abstracts in the Journal of Rehabilitation Medicine

J Rehabil Med 2011; Suppl 49: 1–64

www.polioconference.com/Suppl_49_postpolio_lag%20%20FINAL%202%20august.pdf

Numbers refer to the numbers in the programme and in the supplement of Journal of Rehabilitation medicine. Not all presenters used PowerPoint therefore some numbers are missing. Starting with PowerPoint presentations.

1 Progress of the eradication of polio from WHOs perspective, Rebecca Martin WHO

3 4a	Post polio syndrome, overview of current knowledge, Frans Nollet MDImproving worldwide networking to improve the lives of all survivors, Joan Headley, Director of Post-Polio Health International.Improving worldwide networking to improve the lives of all survivors, Johan Bijttebier, President of EPU,
4b

5 & 9 Pathogenesis of PPS and persistence of poliovirus genomes ,Antonio Toniolo MD

6 Research methodology, Fieke koopmann MD

7 Pharmacological treatment and medical precautions, Kristian Borg MD

10 Immune modulation and a potential biomarker, Kristian Borg MD

11 Treatment for PPS: Results from a Cochrane review, Fieke Koopmann MD

12 Revised EFNS guidelines for diagnosis and management of PPS, Elisabeth Farbu MD

13 Diagnostic tools, Laura Bertolasi MD

14 Electrodiagnostic studies: What, When, Why, Why not? Arzu On, MD.

15 Differential diagnosis, Marianne de Visser MD

16 Rehabilitation assessment, Frans Nollet MD

17 Australia’s polio health and wellness retreat, Mary-ann Liethof

18 The warm embrace of peer support, Anne Shanahan

19 Disuse osteoporosis in the patients with post polio syndrome, Jülide Öncü MD

21 Orthopaedic surgery in polio survivors, Anders Stenström MD

22a 22b

Anesthesia issues for polio survivors, Professional track, Selma Calmes MDAnesthesia issues for polio survivors, Patient track, Selma Calmes MD

Polio Survivors Network A member of the European Polio Union

23,24 Respiration and sleep, Speech and swallowing, Michael Laub MD

26 Pain in polio survivors, Katarina Sunnerhagen MD

27 a	Impact of comorbidity, aging and lifestyle-related factors in polio survivors, Professional track, Irene Tersteeg MD

27 b	Impact of comorbidity, aging and lifestyle-related factors in polio survivors, Patient track, Irene Tersteeg MD

28 Voiding and bowel problems, Lise Kay MD

29 a Falls among polio survivors, Professional track, Alice Bickerstaffe MD

29 b Falls among polio survivors, Patient track, Alice Bickerstaffe MD

30 Exercising for polio survivors, Deidre Murray PT

31 Psychological aspects of polio survivors through their life experience, Alain Yelnik MD

32 Participation in society, Jan Lexell MD

33 A needs based Rasch standard quality of life scale, Allan Tennant MD

34 An exploration of different coping strategies, Anne Marie Quincey, Ass. Psychologist

35 Never second best? Shaping and reconstruction of identity, A.K. Schanke, Psychologist

36 Factors influence the quality of life of poliomyelitis, Anita Atwal OT

37 International classification of functioning, disability and health, Frans Nollet MD

38 Muscle strength measurement, Anita Beelen PhD

40 Outcome measures for pain, Troels Staehelin Jensen MD

41 Outcome measures for physical functioning, Merel Brehm, OT

42 Outcome measures for participation and quality of life, Katarina Sunnerhagen MD,

43 Managing the complexity in daily occupations, Anna Lisa Thoren Jönsson OT

44 Resistance training in combination with IVIG treatment, Katarina Skough PT

45 Intravenous immunoglobulin for post polio syndrome, Emma Frasson MD

46 Physiotherapy as part of a multi-disciplinary rehabilitation, Susse Broberg PT

48 General perspectives of aging, Kirsten Avlund OT

49 Leg orthoses for polio survivors: Numerous innovations, limited evidence, Merel Brehm OT

50 A systematic seating assessment, Anna-Lene Hartvigsen PT

51 Role of exercise, Carin Willén PT

52 Role of aerobic exercises, Jülide Öncü MD

53 How to target aerobic exercise training in polio survivors, Eric Voorn MSc

54 Orthosis management Dr. Barbara Bocker MD

55 Light weight full contact carbon leg orthoses, Orthotist Kees Noppe

56 Evaluation of the function of pelvic floor muscles, Mirca Ocanhas PT

58 Fatigue in patients with post polio syndrome Anita Beelen PhD,

59 Experiences in daily occupations of immigrants with late effects of post polio, Iolanda Tavares OT

60 Rehabilitation in a public health perspective Claus Vinther Nielsen MD

61 Interdisciplinary teamwork, Jan Lexell MD

62 The value of investigating patient perspectives, Karen Schipper Psychologist

66 Cost effectiveness, Kjeld Møller Pedersen, health economist

Summary of the conference, Frans Nollet, MD

Poster Presentations.

68 Comparison of self-reported fatigue in Post-Polio Syndrome patients and age

matched controls Charlotte Lucy Taylor, Honorary Research Assistant

70 Relationship between lower limb muscle strength and gait performance in persons with post-polio syndrome Ulla-Britt Flansbjer, PhD, RPT; Christina Brogårdh, PhD, RPT; Jan Lexell, PhD, MD, Physician

71 Relationships between objectively and subjectively assessed gait performance in persons with post-polio syndrome Chrstina Brogårdh, PhD, RPT

72 The WHOQOL-BREF provides a valid measure of Quality of Life in Post Polio Syndrome Dr Ian Pomeroy, Neurologist 73 Post-polio syndrome and amyotrophic lateral sclerosis – similarities, differences and diagnostic dilemmas Ewa Matyja MD, PhD, Milena Laure-Kamionowska MD 79 Prescription of and satisfaction with the use of lower limb orthotic devices in persons with post-polio syndrome Christina Espelund, RPT, MSc 81 Energy cost of Walking in Prior-polio Patients Deirdre Murray, Clinical Specialist Physiotherapist 82 Exercise therapy and cognitive behavioural therapy in Postpoliomyelitis Syndrome: The FACTS-2-SUMMARYS study Fieke Koopman MSc 83 Voiding problems in a Danish population of polio survivors Lise Kay, MD; Merete Bertelsen, PT 84 Reported problems in relation to operation and anesthesia in a Danish population of polio survivors Lise Kay, MD; Merete Bertelsen, PT 85 The ventilatory threshold in patients with Postpoliomyelitis Syndrome Anita Beelen, PhD, Manger Research 88 An exploration of fatigue from the perspective of people with Post Polio Syndrome Samantha M Wong, Assistant Psychologist 89 An exploration of the impact of Post Polio Syndrome on needs based quality of life Anne-Marie C Quincey, Assistant Psychologist 90 A positive turning point in life. Experiences of a comprehensive interdisciplinary rehabilitation programme in persons with post-polio syndrome Jan Lexell, PhD, MD, Physician 91 Self-perceived impairments in persons with post-polio syndrome Jan Lexell, PhD, MD, Physician 92 Self-perceived participation restrictions in persons with post-polio syndrome before and after interdisciplinary rehabilitation Jan Lexell, PhD, MD, Physician 93 Occupations that persons with post-polio syndrome perceive difficult to perform in daily life Katja Appelin, OT, MSc 95 Post Polio Syndrome in British Columbia, Canada Joan Toone, President PPASS, BC 96 Polio Services Victoria: An Australian A Summary Approach to Effective Care for Polio Survivors through a “Hub and Satellite” Model. Blaise Doran BSc (Hons) Physiotherapist

98 Post-Polio Syndrome: Situation in Spain and proposals for action Jose M Amate PhD *,

Carmen Bouza PhD *, Zuleika Saz-Parkinson PhD *, Maayken Van Den Berg PhD Juan M. Castellote PhD

Polio Survivors Network have picked a few excerpts from the PowerPoint, Video, Poster Presentations and abstracts of the Conference in the Journal of Rehabilitation Medicine 2011, Supplement 49 to entice you to learn more about the widely varied issues that we experience. It is important that you read/watch the entire presentations and information provided to ensure that statements are not taken out of context. We hope this information will be of benefit when you discuss your issues with your health professionals.

No. 3 – Post Polio Syndrome – overview of current knowledge

Frans Nollet, MD, PhD

Academic Medical Centre, Department of Rehabilitation, Amsterdam, The Netherlands E-mail: f.nollet@amc.uva.nl

Abstract from the J Rehabil Med 2011; Suppl 49: 1–64

Post-polio syndrome (PPS) is the late decline in muscle function after many years of stability following the recovery of acute poliomyelitis. Although PPS has been anecdotally reported in the medical literature since the late 19th century, it was only in the early 1980s that PPS became recognized as a frequently occurring late consequence of polio when large numbers of people who had caught polio 30–40 years earlier during the large epidemics started to deteriorate in muscle function.

The diagnostic criteria that are now generally accepted are those as formulated in a consensus meeting by the March of Dimes in 2000. It must be emphasized that the diagnosis of PPS is made by exclusion, and other causes that may explain symptoms must have been ruled out.

The prevalence of PPS in polio survivors is estimated between 40 and 60%. From longitudinal studies, the decline in muscle strength is estimated at approximately 2% per year. More severe paresis has been reported as a prognostic factor for the decline in physical functioning.

The cause of PPS is not known. The most widely accepted hypothesis is that motor neurons in the spinal cord age prematurely due to the high metabolic demands and lose their ability to maintain the large motor units that were formed in the recovery phase after the acute polio. In recent years, it has been suggested that an inflammatory process might underlie PPS based on findings of raised concentrations of cytokines in the cerebrospinal fluid.

No pharmacological therapies sufficiently stop the decline in muscle function in people with PPS. Intravenous immunoglobulins have shown varying results and require further study. Rehabilitation interventions, such as physical training and lifestyle adaptations by behaviour modification, are commonly applied to reduce symptoms and preserve functioning. Physical therapy aims to reduce symptoms of overuse of weakened muscles, to limit the disuse of nonaffected muscles, and to improve cardiorespiratory condition. Physical overload in daily life must also be reduced. This might require changes in activity pattern and the use of mobility assistive devices and home adaptations.

Key-points:

• The cause of PPS requires further study.

• The effectiveness of intravenous immunoglobulins needs further study.

• Randomised controlled trials of rehabilitation interventions are needed to show the effectiveness of multidisciplinary symptomatic treatment.

PowerPoint Presentation Slide 12 – Polio paresis a continuum!

Beasley (1961):

‘A widespread view postulates the effects from poliomyelitis into two categories: paralytic and non-paralytic. If this were valid, quantitative muscle testing should result in two separate distributions: one at a ‘paralytic’ level far down the line from ‘normal’; the other, if truly non-paralytic, should remain within the bounds of a distribution for normal subjects.’

‘Rather, there is a continuum in degree of paresis, with moderate amounts being more frequent than truly severe amounts.‟

Beasley WC. Arch Phys Med Rehabil 1961;42:398-425

Page 10

PTU The Danish Society of Polio and Accident Victims Fjeldhammervej 8, 2610 Rødovre, Copenhagen, DenmarkPTU Rehabilitation Center offers specialized multidisciplinary rehabilitation treatment for persons with polio and other physical disabilitiesThe 3 week program – £ 8,500.00 – comprises:Assessment and treatment by neurologist, physiotherapist, occupational therapist, psychologistIndividualized exercising programme Group exercises sessions Technical aids counsellingExercise and relaxation in warm pool Free access to the training facilitiesFree use of technical aids and use of massage chair. Accommodation and all mealsFor more information – http://issuu.com/ksoptu/docs/3_weeks_treatment? mode=window&backgroundColor=%23222222or contact PTU: email: ptu@ptu.dk phone: +45 3673 9000

PowerPoint presentation Slide 18 Cause of post polio syndrome

Leading hypothesis:

• Loss of unstable newly formed axonal sprouts due to premature metabolic exhaustion of chronically overloaded motor neurons which had to maintain enlarged motor units for many years. Alternative hypotheses:

Chronic inflammation in the Central Nervous System Virus (fragments) persistence

Wiechers & Hubbell, 1981Gonzalez, Borg 2002. Toniolio, 2007

PowerPoint presentation Slide 22 Therapy guidelines

Exercise

Aerobic exercise to maintain muscle status Behaviour

Patient education to improve mental status and well being

Psychosocial support to change behaviour Other

Properly fitted assistive devices Weight loss

Mobility aids and environmental adaptations

EFNS Guideline, Farbu et al. 2006

PowerPoint presentation Slide 29 Care for post polio syndrome in the EU

1. PPS recognized but knowledge is low and interest questionable.

2. Specialized care is scarce.

3. Access to ‘help’ is bad in 50% or more of the countries for social work, psychologists, adaptations at home and work, transportation and housing.

4. Research should focus in the first place on symptom management (pain, fatigue) and therapies (medication and rehabilitation).

Journal of Rehabilitation Medicine 2011 Supplement 49 Rehabilitation assessment

Frans Nollet, MD, PhD [Contact details on previous article]

The diagnosis of post-polio syndrome (PPS) is made after the exclusion of other medical conditions explaining the new symptoms. Except neurological symptoms, secondary disorders of the locomotory system are quite common and may cause symptoms. Since the acute polio usually occurred at young age, most polio survivors have developed skeletal abnormalities during growth such as shortening, axial and rotational deviations of shaft bones, and hypermobile, hypoplastic joints. With age joints laxity may increase, and osteoarthritis may arise in affected and unaffected legs. Also in the upper extremities degenerative disorders are quite common due to prolonged overuse.

Secondary disorders of joints, ligaments and tendons, may hamper diagnosing PPS. For instance it can be impossible to distinguish whether weakness is due to a decline in muscle function or secondary to symptomatic osteoarthritis of the joint on which the muscle acts. Overuse of (paretic) muscles may cause symptoms of pain and cramps but do not necessarily imply that these muscles are symptomatic due to PPS. It may well be that the complaints are due to overload of muscles that compensate for other, weakened muscles during physical activities.

[Editors note – Important paragraph regarding how Polio Survivors should be assessed] Since multidisciplinary rehabilitation aims to preserve functioning, the assessment of the patient focuses on the execution of activities and in this light impairments are valued. For instance, the strength of a paretic muscle is judged in view of the strength requirements to execute a task such as safe and prolonged walking. Therefore, a functional assessment of activities, such as walking, standing, transferring between bodily positions, walking stairs is necessary to gain insight in the loading of muscles and joints during these tasks. Attention should not only be given to affected body parts but also to compensatory use of less or unaffected body parts. In patients with severe polio residuals, the observation of daily activities is warranted to understand symptoms which result from overload. Clinical gait analysis may be particular useful to objectify overuse complaints due to gait abnormalities and energy cost measurements can objectify the increased energetic demands of walking due to reduced movement efficiency. These objective tools furthermore allow the evaluation of the effects of interventions, such as braces.

Key points:

 Functional assessment is needed to understand the symptoms of PPS which

result from overuse during the execution of physical activities.

 Multidisciplinary assessment of daily functioning is the fundament to an

individually tailored therapy rehabilitation program.

Overheard two elderly men talking at our clubhouse. One said „I went for my hospital appointment last week and the Doctor told me when we diagnose people with the condition you have they can still live happily for ten years, but the shame in your case is we should have told you this nine years ago.’ The other looked shocked till the first burst out laughing.

nemesis by Philip Roth. Winner of the Man Booker International Prize 2011.

Summer, 1944. In the ‘stifling heat of equatorial Newark’, a terrifying epidemic is raging, threatening the children of New Jersey city with maiming, paralysis, life-long disability even death. Vigorous, decent, twenty-three-year-old playground director Bucky Cantor is devoted to his charges and disappointed with himself because his weak eyes have excluded him from serving in the war. As polio begins to ravage Bucky’s playground Roth leads us through every inch of emotion such a pestilence can breed: the fear, the panic, the anger, the bewilderment, the suffering and the pain. ISBN 978-0-099-54266-1 Editors note – I could not put it down.

No. 12 – Revised EFNS guidelines for diagnosis and management of Post-polio syndrome

Elisabeth Farbu, MD, PhD; Nils Erik Gilhus, MD, PhD; Michael P. Barnes, MD, PhD; Kristian Borg, MD, PhD; Marianne de Visser, MD, PhD; Robin Howard, MD, PhD; Frans Nollet, MD, PhD; Josef Opara, MD, PhD; Erik Stålberg, MD, PhD

Department of Neurology, Stavanger University Hospital, Stavanger, Norway

Some years ago, the European Federation of Neurological Societies (EFNS) decided to try to bring together peer-reviewed guidelines for the treatment and management of neurological disorders. These guidelines should be based on evidence, and where evidence was not available, by consensus of experts from different European countries.

The EFNS task force on post-polio syndrome consists of members from Norway, UK, Sweden, The Netherlands, and Poland, involving different medical specialities and a patient representative. The first guideline document was published in European Journal of Neurology in 2006 as well as in the first edition of European Handbook of Neurological Management.

The revised guideline which is presented here was published in the second edition of European Handbook of Neurological Management 2010.

Medline via PubMed, EMBASE, ISI and Cochrane databases were searched with time limits 1966–2009, and the task force reached consensus after discussion by e-mail. We recommend that The March of Dimes criteria for PPS should be used. [See opposite page]

For specific treatment regimens we found that:

 No therapeutic effects have been reported for pyridostigmine, steroids, amantadine,

modafinil, and Coenzyme Q10 (Level A).

 Supervised muscular training can prevent further decline of muscle strength in slightly or

moderate weak muscle groups, and can reduce muscular fatigue, muscle

weakness, and pain. Precautions should be taken to avoid muscular overuse (Level B).

 There are no data evaluating the effect of muscular training in patients with severe weakness

(Level B).

 Training in warm climate and non-swimming water exercise are particularly useful (Level B).

 Respiratory muscle training and early recognition of respiratory involvement with introduction of

non-invasive ventilatory aids can alleviate respiratory symptoms (Level C).

 Group training, regular follow-ups and patient education are useful for the patients’ well- being

(Level C).

 Lightweight carbon orthoses can be more proper than metal orthoses (Level C).

 Weight loss (if adipose) and introduction of properly fitted assistive devices is helpful

(Good practice points).

 More studies on IvIg and prospective follow-up studies evaluating muscle strength and the

natural course of PPS are welcomed.

Excerpt from Abstract of Summary 14. Electrodiagnostic Studies, What, When, Why, Why not. by Arzu Yagiz On, MD, Ege University Medical Facility, Izmir, Turkey.

Electrodiagnostic studies are of no value in diagnosing PPS. Then under what circumstances would performing these studies be justified on a patient with a history of poliomyelitis or on a patient with symptoms suggestive of PPS?

The major role of electrodiagnostic studies is to confirm lower motor neuron involvement compatible with previous paralytic polio and to determine degree of motor neuron loss. EMG will also be useful to detect the presence of sub-clinically involved muscles in the patients with symptoms suggestive of PPS. EMG would also be helpful to evaluate concomitant disorders and to identify or rule out other conditions that may cause the similar symptoms of PPS. Another situation where an EMG will be appropriate is when a patient has been misdiagnosed with poliomyelitis. In this situation, EMG will be helpful in ruling out poliomyelitis and in determining the presence of another disorder. [for more info read full article]

No. 28 – Voiding problems in a Danish population of Polio Survivors.

Lise Kay, M.D. Merete Bertelsen PT / lka@ptu.dk [N.B. Excerpted information – for more information read the full article]

They randomly sampled 453 polio survivors aged between 40 and 89 with a questionnaire concerning the following voiding symptoms:-

Hesitancy weak stream, incomplete emptying, straining, frequency, nocturia [excessive urination at night], urgency, urge incontinence,

dysuria [painful or difficult urination., dribbling, stress incontinence and other incontinence.

During the acute polio attack 20% of polio patients experienced voiding symptoms. [Skinhø 1933 and Wreight 1936]. Theoretically these problems may return with the decline in function experienced by these patients in the long run.

Voiding problems: A thorough anamnesis, physical investigation and a drinking/voiding chart should be done. This may show the way to alleviate problems by simple means such as adjusting drinking and voiding habits or facilitating better access to the toilet. If this does not help then further investigation is needed. The final step is to carry out a full urodynamic investigation, this should be carried out by an urologist who can initiate more complex treatments.

Bowel problems: Constipation can primarily be treated by adequate balance of water and fiber content in the food, and by building up stable toilet habits. Massage of the anal region and sitting in a position with knees up close to the stomach may also facilitate bowel movement. Secondly, laxatives acting by keeping fluid inside the bowel can be used without restriction, while laxatives that push the peristaltic movements may theoretically overload the moving ability of the bowel and make things worse. Enemas can supplement oral laxatives.

The survey revealed more voiding problems than the general population. It has been shown that a reduction in functional ability is a predictive factor for bowel symptoms.

Key points:

 Voiding and bowel problems experienced by polio survivors can be relieved and if not by

simple means patients should be referred to hospital departments with specialists.

The March of Dimes Criteria for Post Polio Syndrome 2000.

1. Prior paralytic poliomyelitis with evidence of motor neuron loss, as confirmed by history of the acute paralytic illness, signs of residual weakness, and atrophy of muscles on neurological examination, and signs of denervation on electromyography (EMG).

2. A period of partial or complete functional recovery after acute paralytic poliomyelitis, followed by an interval (usually 15 years or more) of stable neurologic functions.

3. Gradual or sudden onset of progressive and persistent muscle weakness or abnormal muscle fatigability (decreased endurance), with or without generalized fatigue, muscle atrophy, or muscle and joint pain. (Sudden onset may follow a period of inactivity, or trauma, or surgery). Less commonly, symptoms attributed to PPS include new problems with swallowing or breathing

4. Symptoms persist for at least a year

5. Exclusion of other neurologic, medical, and orthopaedic problems as causes of symptoms

3rd BREATHING SYMPOSIUM – 2011 The Salk Institute, San Diego, California, USA

The third symposium was held on 29th October 2011 at the Salk Institute, La Jolla, California. Sponsored by ResMed and the Salk Institute for Biological Studies. All presentations from each of the three symposia were videoed and can be watched – and are essential viewing for anyone interested in the health of polio survivors – online at PolioToday.org – VIDEOS.

All were welcomed by Cheryl Dean from the Salk Institute with opening remarks by Angela King*

2011 Presentations are:-

The history and current treatment of polio in China, Fang Han, MD.

Breathing A to Z – Explaining the breathing process.., Joshua Benditt, MD, FCCP Explaining the effects of Sleep Disordered Breathing, Anthony DeMaria, MD

*Which ventilation equipment is appropriate for your needs? – Angela King, BS RPFT, RRT-NPS.

How various breathing machines work, Karyl Scott, RRT.

To give you some idea of the extent of the information you can gain from watching here are some excerpted parts [about 50%] of Dr. Joshua Benditt’s presentation which covered the following topics. Pertinent anatomy and physiology; Different types of diseases, post polio and others, according to location of effect; Clinical approach to neuromuscular respiratory disease and Sleep and Neuromuscular disease. [If possible it is preferable to watch the whole presentation]

The Respiratory Pump, a term you will see referred to in medical literature, includes the muscles, the activating force generators that are the diaphragm and also the chest wall also the chest wall muscles and also the nerve that go to these, the motor nerves, the spinal cord and also the brain stem, the medulla and the pons and the motor cortex which for voluntary breathing is necessary. For me to be able to control my breath I need cortical input. Central Control of Respiration. Automatic breathing, when we fall asleep at night, is maintained from these four different centres of the brain stem that allow us even though we are asleep and unconscious to breathe. During the day when awake, get scared, need to talk or sing and control the breath the cortical centres on the surface of the brain function during inspiration and expiration and where we control speech.

Diseases can affect the cortex and central control of breathing…. An example of a disorder of voluntary breathing includes Parkinsons where people feel short of breath with exertion.

Examples of disorders with Automatic breathing include Polio, MS and Central Sleep Apnoea. Polio, if it was very high up in the brain stem, fortunately that was the minority of patients, but that can affect the automatic control of breathing so that some polio survivors have great difficulty during sleep not only due to nerve and muscle weakness but also due to medical control of breathing….. In polio what happens in these motor nerves is there is degeneration during the acute infection and then slowly over time the nerves grow back but not quite as strong, and what we think post polio syndrome is that as we age the nerve rootlets degenerate and we get symptoms in the same muscles groups as when we had polio.

In my clinic I see many patients with PPS. In polio, obviously there is an infection, it affects motor nerves that can be peripheral but can also be in the spinal cord and as high up as the brain stem. But there are other problems that occur in patients with polio because of the weakness of muscles surrounding the spine, the paraspinus muscles. So if you are a child and you get polio and get weakness of the paraspinus muscles and then you are growing those muscles do not support the spine and you get scoliosis. Some of the most severe cases of scoliosis i have ever seen are in post polio patients. This has an extra affect on breathing in that it makes the rib cage very rigid, very stiff and so the weak muscles have a great problem expanding a stiff rib cage. So not only nerve problems, weak muscles but also rib cage stiffness. Lastly the final operator in the chain is the respiratory muscles. This is a diagram from the side showing inspiratory muscles and

the diaphragm but there are also intercostals muscles, and the external intercostals muscles of the chest help us during inspiration. Also if you are exercising, your neck muscles and chest muscles help you to breathe. Expiration, exhalation usually is a passive manoeuvre, so if I take a breath and I relax then I exhale because the elasticity of the lungs and the chest, push the air out. But if we have to cough these exhalatory muscles which are the abdominal muscles and the internal intercostals muscles are critical and I will mention that at the end of the talk. Not only do we need non invasive ventilation but also cough assistance.

Lastly I consider the upper airway muscles, the glottic muscles in the throat to be breathing muscles and the reason I consider them to be breathing muscles is because they are controlled neurologically speaking from the same areas of the brain as the other breathing muscles and they are critical during sleep. So even though the ENT doctor would say ‘Get out of my territory’, I would say ‘Actually they are breathing muscles’.

If you are a neurologist or physician kind of looking to diagnose where might one of these diseases be happening what we do is we look at the history, the physical exam and the lab [test results] and the neurologists are really the experts in this area. They are trying to figure out, ok is the problem up here in the cortex, or in the brain stem or is it in the muscles or the peripheral nerves and I sort of stay out of that area. I let them do that because from my point of view I need to think about three things and I need to think about that at every visit that I see them because breathing out of all the problems that these neuromuscular diseases can cause the most important, I believe, because if you cant breathe as my Respiratory Therapist told me ‘if you cannot breathe nothing else matters’.

Every time I see a patient with a neuromuscular disease in my clinic I look to see if the inspiratory side of things the diaphragm and the external intercostals muscles are active. Nocturnal hypoventilation is one of the very first signs of inspiratory muscle failure. I also look for expiratory muscle failure which causes cough problems which you can easily measure that in clinic.

We look at upper airway muscle failure, so particularly for patients with ALS [MND] we are very concerned about them aspirating [food or gastric substance getting into the respiratory tract during breathing in]. When you aspirate and you cannot cough well that leads to pneumonia which is the most common cause of death for any neuromuscular disease. So when you hear about someone who has died in the hospital who had Polio or ALS probably 8 out of 10 times it is going to be because of a respiratory infection.

What do we do in the clinic? I work with a very wonderful respiratory therapist whose name is Louis Boitano, who came here and spoke two year ago. We measure the vital capacity, the biggest breath you can take, blow it all the way out as far as you can and we measure the air that comes out. We then compare it to what is should be for your age and gender and size. Sometimes we measure the maximum inspiratory pressure {MIP], the maximum force you can breathe in, we have a little mouthpiece and we say breathe in hard and we measure that pressure. For expiratory function, how much can someone exhale, we do something called peak cough flow, I really like this, it is a very good thing to measure for people with neuromuscular disease. We also get a history about upper airway function while they are in clinic, we have a good speech and swallowing clinic where I work and we will send them there where they will sometimes do a barium swallow study to see how swallowing goes or even look at the vocal cords and upper airway.

Sleep and neuromuscular disease are intertwined as closely as can possibly be for the following reasons. When there is weakness of the respiratory and chest muscles it impairs the ability of that pump to work. Often times there is also weakness of upper airway muscles that increases the resistance to airflow during sleep, so if the muscles are weak they kind of collapse a little bit. During REM sleep [Rapid Eye Movement – our system is designed so that all muscles but the diaphragm relax so we do not move about when dreaming and might injure or kill our bed partner. If the diaphragm, either side or both are weak and with no other muscles helping the

likelihood of hypoventilation [small breaths not breathing enough] is very very high. Also because respiratory muscles associated with breathing are working hard during the day they may be fatigued and if you also have kyphoscoliosis – which many with PPS have – it can cause desaturations at night which can be enormous. Having a stiff chest wall also impacts on this.

If you look at sleep in a neuromuscular disease there are incredible amounts of pathology. Snoring, obstructive sleep apnoea, hypoventilation, central apnoea where there is little or no breathing effort at all, ‘pseudocentral apnoea’s which are probably severe hypoventilations. Sometimes the body protects itself and does not go into REM sleep. With desaturations if your oxygen level is going down and your carbon dioxide level going up, maybe you have morning headaches, sleepiness during the day, then you need treatment to improve your sleep quality, quality and length of life. There is no doubt in my mind that the Gold Standard method of support for people with a neuromuscular disease and sleep disordered breathing to improve their life is a bi-level device with a back up rate and humidification to reduce the dry nose and mouth effect.

CPAP is very common – used in millions of patients worldwide – provides a continuous column of air in the airway and should NOT be used for patients with neuromuscular disease. With respect, what can happen is that sleep doctors think everything looks like a bit like obstructive apnoea and patients get treated that way and we see mistakes because they have missed the fact that this patient has a more complicated situation. These patients need treating differently with a bi-level pressure device [BiPap™, VPAP™] – used in maybe 100,000 or more patients – which cycles between higher inspiratory and lower expiratory pressures and acts like a true ventilator like a machine that takes over from the fatigued breathing muscles, allowing them to rest. Neuromuscular patients need this because obstructive apnoea can happen in them but the rest is where the muscles are weak you don’t take big enough or any breaths at all and need extra assistance. Adjustments can be made during a sleep study or the daily readings from the machine can be looked at and adjustments to the settings made to maximise gas exchange and achieve Saturations >95% and PtcCO2 are <50mmHg. EPAP [the expiratory setting] will be set at a relatively low level, IPAP [the inspiratory setting] will be higher and adjusted according to the results showing on the machine. A back up rate will be set so that when the patient pauses a normal breathing rate the machine kicks in. The mean setting for back up rate reported in the Mellies et al study in the ERJ 2003,22:631 of 19.2 (12 to 24) we have found is too high for our patients and may have come from the type of patients in their study. End of excerpted info. Repeated we recommend watching the whole video. Members if that is not possible then contact us and we will see if we can help.

Restless legs syndrome in post-polio syndrome: A series of 10 patients with demographic, clinical and laboratorial findings.

Marin LG. Caryalho LB, Prado LB, Quadros AA, Olivera AS, Prado GF

Neuro-Sono Sleep Centre, Universidade Federal De Sao Paulo, Rus Claudio Rosse 394, Sao Paolo, SP, Brazil. luisfabianon@gmail.com

Parkinsonism Relat Disord. 2011 Aug;17(7):563-4. Epud 2011 Jun 2

ABSTRACT

Background – Few studies have described the occurrence of restless leg syndrome in post-polio syndrome.

Methods – We studied 10 consecutive patients with post-polio syndrome and symptoms of restless leg syndrome. We looked at demographic, clinical and laboratorial data.

Results – A remarkable finding was the concomitant onset of symptoms of both diseases, suggesting a possibly underlying mechanism. Severity of restless legs symptoms was moderate to very severe.

Conclusion – Epidemiological studies with larger samples are needed to better establish the relationship and the incidence of restless leg syndrome.

The *12 Days of Christmas – Re-Examined*:

(Please remember the reason for the season)

In Light of Competition Global challenges require the North Pole to continue to take more competitive steps. Effective immediately, the following economy measures are to take place in the “Twelve Days of Christmas” subsidiary.

The partridge will be retained, but the pear tree never turned out to be the cash crop forecasted. It will be replaced by a plastic plant, providing savings in maintenance costs.

The two turtle doves represent a redundancy that is simply not cost effective. In addition, their romance during the working hours could not be condoned. The positions are, therefore, eliminated.

The three French hens will remain intact and we may actually expand the number of hens used. A recent time-motion-profitability study proved that using illegal migratory fowl is extremely profitable as it eliminates the company’s need to provide employee benefits because the hens do not meet federal residency requirements.

The four calling birds were replaced by an automated voice mail system, with a call waiting option. An analysis is underway to determine who the birds have been calling, how often and how long they talked. Once this information is determined, the Accounting Department will deduct the costs of any inappropriate non-business calls from their final paycheck.

The five golden rings have been put on hold by the Board of Directors. Maintaining a portfolio based on one commodity could have negative implications for institutional investors. Diversification into other precious metals as well as a mix of T-bills and high technology stocks appear to be in order.

The six geese-a-laying constitutes a luxury which can no longer be afforded. It has long been felt that the production rate of one egg per goose per day is an example of their decline in productivity. Three geese will be let go, and an upgrading in the selection procedure by the Personnel Department will assure management that from now on every goose it gets will be a good one.

The seven swans-a-swimming is obviously a number chosen in better times. Their function is primarily decorative. Mechanical swans are on order. The current swans will be retrained to learn some new strokes to better enhance their outplacement.

As you know, the eight maids-a-milking concept has been under heavy scrutiny by the EEOC. A male/ female balance in the work force is being sought. The more militant maids consider this a dead-end job with no upward mobility. Automation of the process may permit the maids to try a-mending, a-mentoring, or a-motoring.

Nine ladies dancing has always been an odd number. This function will be phased out as these individuals grow older and can no longer do the steps. Let me hasten to add that the company policy prohibits age discrimination. Should these individuals be asked to leave prior to their voluntary retirement, rest assured our Law Department will ensure an ironclad defence against an employee lawsuit.

Ten Lords-a-Leaping is overkill. The high costs of Lords plus the expense of international air travel prompted the Compensation Committee to suggest replacing this group with ten out-of-work congressmen. While leaping ability may be somewhat sacrificed, significant savings should result due to the number of congressmen left unemployed by the election.

Eleven pipers piping and twelve drummers drumming is a simple case of the band getting too big. A substitution with a string quartet, a cutback on new music and no uniforms will produce savings to the bottom line.

Though incomplete, studies by our latest consultant indicate that stretching deliveries over twelve days is inefficient. If we can drop-ship in one day, service levels will be improved and we can expect a substantial reduction in the use of part-time personnel.

Santa’s Workshop Inc., a Limited Liability Partnership Corporation

Origin unknown

Page 18

 I have been in many places, but I have never been in Cahoots. Apparently you cant go there alone. You have to be in Cahoots with someone. I’ve also never been in Cognito. I hear no one recognises you there.I have however been in Sane. They don’t have an airport. You have to be driven there. I have made several trips there, thanks to my family, friends and those where I have worked.I would like to go to Conclusions, but you have to jump and I am not too much on physical activity anymore.I have also been in Doubt. That is a sad place to go and I try not to visit there too often. I’ve been in Flexible, but only when it was very important to stand firm.Sometimes I’m in Capable, and I go there more often as I’m getting older. One of my favourite places to be is in Suspense. It gets the adrenaline flowing and pumps up the old heart. At my age I need all the stimuli I can get. [sent by member Janet Whitman] – o – o -Law of Mechanical Repair – After your hands become coated with grease, your nose will begin to itch and you’ll have to pee.Law of Gravity – Any tool, nut, bolt, screw, when dropped, will roll to the least accessible corner.Law of Probability – The probability of being watched is directly proportional to the stupidity of your act.Variation Law – If you change lines [Queue] (or traffic lanes), the one you were in will always move faster than the one you are in now (works every time).Law of the Bath – When the body is fully immersed in water, the telephone rings. Law of the Result – When you try to prove to someone that a machine wont work, it will.The Coffee Law – As soon as you sit down to a cup of hot coffee, your boss will ask you to do something that will last until the cup gets cold.Law of Physical Surfaces – The chances of an open faced jelly sandwich landing face down on a floor are directly correlated to the newness and cost of the carpet or rug.Oliver’s Law of Public Speaking – A closed mouth gathers no feet.Author Unknown. 

.Disabled People Against Cuts.

DPAC is an organisation run and controlled by Disabled people and was formed following the National Day of Protest on October in Birmingham. The 3rd October 2010 saw the first mass protest against the austerity cuts and their impact on disabled people. It was led by disabled people under the name of The Disabled Peoples’ Protest.

DPAC believes that disabled people should not be the scapegoats for the financial mistakes of governments, should not be constantly told that there is no money to support them by millionaire politicians. We will not tolerate further erosion of our living conditions or our human rights, nor will we sit quietly while they try to take our rights away. We welcome all to join us in fighting for justice and human rights for all disabled people.

DPAC is for everyone who believes that disabled people should have full human rights and equality. It is for everyone that refuses to accept that any country can destroy the lives of people just because they are or become disabled or sick. It is for everyone against government austerity measures which target the poor while leaving the wealthy unscathed. It is for everyone who refuses to stay silent about the injustices delivered by wealthy politicians on ordinary people and their lives. Join us at Facebook – Disabled People Against Cuts or visit our web site at www.disabledpeopleprotest.wordpress.com/

The Crippen Cartoon on the Back Page has come from this organisation

Management Committee [Trustees] Chair – Position Vacant

Operations Team

[Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors

Friend/Supporter. If you would like to support the Polio Survivors Network you can do so by making a yearly donation of your choice.

You will receive a yearly update of our activities and be invited to our AGM.

Membership Fees

Individual – £ 12.50 per year

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo. Associate Membership – £ 10.00 per year

Yearly fees can be paid by Standing Order.

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet.

Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us.

Donations

Donations, small or large, towards our work will always be gratefully received.

SEE BACK PAGE – Val Scrivener is making and selling brilliant photo greetings cards

Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

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%).

 01522 888601because WE‟RE STILL HERE!

© PHOTO CARDS by MEMBER VAL SCRIVENER Sold in aid of POLIO SURVIVORS NETWORKPack of 5 – £3.95 inc. P & P. [Choose from large selection]Order by writing to PSN Emailing johnval.scrivener412@btinternet.comOr ringing Val Direct on 01234 346 397

A donation has been sent to Disabled People Against Cuts – See Page 18 for more information.

Post Polio Matters Volume 7 Issue 6 Read More »

Post Polio Matters Volume 7 Issue 5

© Polio Survivors Network – Volume 7, Issue 5 – July 2011	Page 1
Polio World Photo Poster Competition 2011 Page 11SUPPORTING PHI’S YEARLY CAMPAIGN	August 31st to September 2nd 2011 in Cøpenhagen, Denmark.	EUROPEAN CONFERENCE ON POLIO – Page 10
Full Conference Program now available atwww.polioconference.com/pdf/Program.pdf

JULY 2011

Volume 7 Issue 5

The Polio Survivors Network Newsletter – Volume 7, Issue 5n.b. Volumes 1 to 6 published under the name LincPIN.www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

READ CODES

FOR

POST POLIO SYNDROME

ISSUED IN APRIL 2011

Version 2 F29y1

Version 3 X0002p

Page 8

Polio Survivors Network Joins the European Polio Union

Page 2

LONDON EXCEL19/20 Oct 2011www.naidex.co.uk

New Members and Donations received.

Contents

Page 2 Contents, New members and Donations

Page 3 Editorial & Trustee Meeting Dates.

Page 4 Message from the Chair, Sandra Paget

Page 5 Get Physical and note from Membership Secretary.

Page 6 – 8 Polio Biology XIV – A Review of the current state of knowledge of Post Polio Syndrome

By Professor Eddie Bollenbach.

Page 9 A page of smiles.

Page 10 Reprise of:- EPU Conference details and

PHI‘s booklet Post-Polio Health Care Considerations For Families & Friends

Page 11 We‘re Still Here Poster Competition PLEASE ENTER.

Page 12-17 A Lincolnshire Post-Polio Library article

Gastrointestinal Involvement in the Post-Polio Syndrome by Sinn Anuras, M.D.

Page 17 A new book A Rough Road by Philip Bird.

Page 18 Glycemic Load diet helped me lose weight then STRESS and CHOCOLATE snuck in.

Page 19 Contact and Membership Information.

Page 20 Back page.

Thank you Wickes for donating £750.00 towards improving our new website

NAIDEX

GLASGOW

14/15 Sep 2011

We welcome new member John Lloyd

Thank you to the following for donations given towards our work. Wickes donated £750.00 towards improving our new website.

Donations from members from the date of the last newsletter will be included in the October Post Polio Matters.

Total since last newsletter is £ 750.00

We have no paid employees. We would like to recognise and thank the following for so generously donating their time. The Trustees, Dave Eate, and Bob Price

Donations & offers of time towards our work are always welcome.

Scottish Post Polio Network AGM/ Conference 2011

Saturday, 1st October 2011

10 am – 5pm at Hilton Strathclyde Hotel,

Strathclyde Scotland.

Editorial by Hilary Boone

Polio Survivors Network – Meeting information

The next Trustees Meeting is being held in Rugby on October 12th 2011

If you have any matters for our attention at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

Members regularly raise the issue of lack of knowledge and experience by health professionals of polio and the hugely various ways it affected our bodies. The success of the 1955 vaccine led to less and less facts being taught in Medical schools as the decades passed. Another major point is that as we recovered and left the health system what and how we managed was not recorded. We were all affected in a different way to a variety of levels with different treatments. We have achieved highly in our professional, and family lives. So NO set pattern for health professionals to work to must make their work more difficult.

We are still working hard to see an improvement for polio survivors and thank the members who responded to the PSN survey. The report will be finalised in the next few months. In the meantime if you have respiratory and sleep issues I would refer you to the PatientPlus article for health professionals on Post Polio Syndrome [1] the 28 page June 2006 issue of the LincPIN [2] and watching the presentations from the 2009 and 2010 Breathing Symposia in San Diego.[3]

Other issues raised have been problems with bloated stomachs and difficulty with evacuating waste products so I have added the Lincolnshire Post Polio Library article – Gastrointestinal Involvement of the Post Polio Syndrome [4] pages 12 to 17. The article does contain fairly technical terminology but would be informative for any health professional you consult who has minimal knowledge of Polio. Personal experience of eighteen months of reporting constipation getting worse with two health professionals just got us the standard responses. We did what was advised but we still had the problems. Now we realise that they were most probably unaware that our prior polio could have any bearing on our problems. If you have similar issues we recommend seeing your GP and going back again till you get the problems resolved. A Prescription of Macrogol eased our problems and had it been prescribed earlier would have saved the NHS the cost of 5 days in hospital and us a lot of stress.

The Scottish Post Polio Network (SPPN) have had some success for Scotland. They too have been campaigning (since 2001) for greater recognition of the needs of individuals with new or continuing problems due to polio. Following their representations to Scottish Ministers, the Scottish Medical and Scientific Advisory Committee [SMASAC] set up a Working Group in 2008 to consider the issues. The 62 page report produced for the Scottish Government by APS Group Scotland. [DPPAS11404 (04/11)] was published by the Scottish Government April 2011. [5]

The main messages from the report are ones raised in every country:-

 There is still a significant number of individuals in Scotland affected by PPS/LEOP who will require

services for up to another 40 years.

 Many of the difficulties faced by PPS/LEOP individuals are the same as for individuals with other

chronic neurological conditions.

 PPS is a diagnosis of exclusion and other possible causes of the new features must be excluded

before it can be accepted.

 Many healthcare professionals who will encounter individuals with PPS have, understandably, little

or no knowledge of this newly recognised and relatively rare condition. Even many polio survivors

are unaware of PPS.

 Services are patchy and poorly coordinated.

1. www.patient.co.uk/doctor/Post-Polio-Syndrome.htm

2. http://poliotoday.org/?page_id=761 and http://poliotoday.org/?page_id=766

3. www.poliosurvivorsnetwork.org.uk/images/lincpin/lincpin5-9.pdf

4. www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/usa/gi.html

5. www.show.scot.nhs.uk/

Members not on the internet who would like more information please ring or write to us.

Dear Members and Friends,

Thank you to all who came to our AGM in Birmingham and although we were small in number it was a friendly and successful meeting. If you would like a copy of the Information Pack that attendees received, please let Hilary know and one will be sent to you.

Gillian Bryan, our new Trustee and Treasurer presented her suggestions for our financial future, which is critical to our future. The main change we are making forthwith is that our financial year will now run from January to December instead of April to March. This means that the current year will only be nine months from March to December 2011.

Gillian is also taking on the position of Membership Secretary, see short article on the bottom of the next page.

Verité Reily-Collins, Polio Survivor and PSN member gave an interesting talk about her activities and Professor Catherine Sackley from Birmingham University gave a talk around the findings of the RESULT Study, which some of you participated in. This study was commissioned by the Department of Health’s Policy Research Programme. The Study is written up and currently going through the formal pre-publication process at the Department of Health. As soon as we can we will let you know how to obtain a copy.

I am also pleased to tell you that we are now full members of the European Polio Union (EPU) and looking forward to working with the EPU to raise not only issues of concern but the many positive experiences in the lives of Polio Survivors in Europe. Although we cannot afford to send anyone to the conference in Cøpenhagen from 31st August to 2nd September this year, we will be working hard to improve our financial situation so that we can delegate attendance at the next conference. If you would like to go details are available at www.polioconference.com, and is featured once again on page 10 of this copy of Post Polio Matters.

The next Trustees meeting is on 12th October, 2011 and if you have anything to bring to our attention, please do let us know.

On behalf of the Trustees I wish you a good summer, albeit a bit rainy at the moment, fingers crossed for the hazy, lazy days.

Sandra Paget Chairperson sandra.paget@poliosurvivorsnetwork.org.uk

Tel: 01494 729373 Mob: 0777 294 0905

Message from the Chair

“The best measure of a man’s honesty isn’t his Income tax return.

It’s the zero adjust on his bathroom scale.”

Arthur C. Clarke

Polio 1959

Wonderful Wonderful Cøpenhagen

Friendly old girl of a town

A bear, however

hard he tries, grows tubby without exercise.

A.A. Milne

Physical activity, exercise, moving, whatever we call it, is good for everyone. Some of the health benefits can help to reduce blood pressure, control diabetes, improve heart health and circulation and help to reduce depression. The Department of Health recommends exercising for 30 minutes 5 times per week. For some this is easier said than done. Even so, it is probably worth considering how you can increase your daily physical activity levels.

Two reviews published last year, (‗Update on current and emerging treatment options for

post polio syndrome by Elisabeth Farbu, at Stavanger University in Norway‘ and ‗Management of post polio syndrome by Henrik Gonzalez and others from Karolinksa Institute of Sweden, published in the Lancet, September 2010) suggested that individually tailored exercise programmes can be beneficial to people with post polio syndrome.

One option you could consider is a consultation with the Clinical and Exercise and Rehabilitation (CLEAR) Unit at Oxford Brookes University, which provides individually tailored exercise programmes. The CLEAR Unit is staffed by qualified exercise and fitness scientists and is part of the Movement Science Research Group at Oxford Brookes.

For those of you living in and around Oxford your GP may be able to refer you but you can refer yourself. Those of you living further away can also self-refer. The staff will help you create an exercise programme tailored to your needs and wishes to use at your local gym or home.

This is not about getting fit to run the marathon, swim the channel or to become a champion weightlifter ready for the next year‘s Olympics! It is about learning how to increase your physical activity levels beginning with you and what you do now, what you would like to do and in the context of PPS.

For a consultation you can contact James Bateman at the CLEAR Unit on Tel:- 01865 484293 http://www.brookes.ac.uk/lifesci/clea

Free to download publication. Physical Activity for Neurological Conditions. http://www.brookes.ac.uk/schools/lifesci/lifepass/

A note from your new Membership Secretary, Gillian Bryan.

Renewing Yearly membership.

In future all renewal notices will be sent separately from the newsletter with a stamped addressed envelope enclosed.

We also receive donations from members usually as an addition to their annual subscription. For all of these we are very grateful.

It is worth pointing out that it costs us just over £1 per member to send renewal reminders and it would help our finances somewhat if as many members as possible paid by standing order. A Standing Order form will be included with your Renewal Reminder if you are able to pay this way.

All emails relating to membership to:- membership@poliosurvivorsnetwork.org.uk

Gillian Bryan, Treasurer and Membership Secretary

Polio Biology XIV A Review of the current state of knowledge of Post Polio Syndrome By Professor Eddie Bollenbach

An article was written in Lancet Neurology in 2010 on the management of Post-Polio syndrome. Two of the authors previously published articles on an antibody mixture called IVIg in treating PPS from the Karolinska Institute in Sweden. There were two or three small research studies which showed such treatment relieved some muscle pain due to PPS. The authors suggested the fact that different formulations of IVIg could have been investigated for PPS but as far as I can tell no new work has been done with the IVIg preparations. Indeed, Professor Borg, one of the authors, indicated that there needed to be a screening of antibodies in the mixture to see if one or another formulation was more effective in treating PPS.

I came across the article mentioned above on-line in Lancet Neurology and decided to take a closer look to see what these authors had to say about the state of our knowledge of PPS in 2010. The article comes to us from Danderyd Hospital and the Karolinska Institute. Henrik Gonzalez, as a graduate student of Kristian Borg, at the Karolinska Institute, first introduced the PPS world to the possibility of using IVIg (an antibody mixture) to treat PPS and is now on the staff of Danderyd Hospital. The authors make the case that although the polio vaccine was introduced in the USA and Europe in the mid-50’s, infectious polio slowly diminished through the 60’s as a result of vaccination programs. That was acute infectious polio. Now the most common motor neuron disease in the United States are the problems survivors of infectious polio are suffering, including the Post-Polio Syndrome.

Post-Polio Syndrome has diagnostic criteria, a major one is the elimination of other causes of progressive weakness: According to the authors the following diagnostic criteria are used:

1. Prior paralytic poliomyelitis with evidence of motor neuron loss, as confirmed by history of

the acute paralytic illness, signs of residual weakness and atrophy of muscles on neurological

examination, and signs of loss of nerve to muscle connections with electromyography.

2. A period of partial or complete functional recovery after acute poliomyelitis, followed by an

interval (usually 15 years or more) of stable neurological function.

3. Gradual or sudden onset of progressive and persistent new muscle weakness or abnormal

fatigability (decreased endurance), with or without generalised fatigue, muscle atrophy, or

muscle and joint pain. (Sudden onset may follow a period of inactivity, or trauma or surgery.)

Less commonly, symptoms attributed to post-polio syndrome include new problems with

breathing or swallowing.

4. Symptoms persist for at least a year.

5. Exclusion of other neurological, medical, and orthopaedic causes of abnormality.

ALS [Amyotrophic Lateral Sclerosis also known as MND – Motor Neuron Disease] which affects upper motor neurons in the brain, and is fatal, can be distinguished from polio by distinct signs. Other neurological diseases, and toxicity due to drugs or poisons, as in statin muscle damage can also be eliminated from PPS by lab work. It is reported that between 20% and 85% of people who have a history of polio will develop the Post-Polio Syndrome.

There is a distinction made between;- sequelae of polio (no progressive decrease in function but with overuse damage and/or neuromuscular damage from stress and strain) compared to slow or abrupt progressive weakness, with plateaus, due to a loss of nerve end connected to muscle fibers as the loss of nerve fibers outpaces the replacement of them, typically, in PPS.

The cause, or etiology of PPS would be an answer to the question of why end fibers cannot be replaced as fast as they are lost, which occurs in post-polio syndrome after a long stable period. The Lancet article is a comprehensive review of the damaging changes and clinical characteristics of post -polio syndrome, current diagnostic and treatment options, as well as suggestions for future research.

This is a welcome review since such review papers are in our past 20 years of research on PPS but a 2010 paper update to the polio literature helps us know where we stand now. In this overview I will stick to what we know now as a result of the previous studies reviewed in the 2010 paper.

Early studies by several researchers on post-polio syndrome have shown a process of loss of nerve sprouts to muscles and resprouting new connections by other healthier nerve cells nearby. This process is continuous and the healthy sprouting neurons get larger and larger with respect to the muscle fibers they connect to. These “giant motor units” continue to grow until they can no longer provide the needed stimulus to such a large number of muscle fibers. They eventually fail and the result is new weakness in the affected muscles. The reason why this happens to some people but not others is still unclear.

Many researchers have looked at a purely mechanical approach (stressed fibers affected by polio die out over time to be replaced by more sprouts from healthy fibers, which become overburdened and eventually fail). Perry, as early as 1988 suggested this, while Hubbel and Weichers championed this approach. Nevertheless, the authors point out that longitudinal studies have not implicated overuse as the cause of muscle weakness. Indeed, in an unpublished survey done by Marcia Falconer and myself, there was evidence that people who had more exercise prior to PPS seemed protected somewhat and developed PPS a bit later.

A longer time period since acute polio infection is a risk factor for PPS, but again, not all those with polio damage can be classified with PPS at any age, and loss of motor neurons increases with age. So, this loss can be a confounding factor making it difficult for a clinician to pick out true clear cases of PPS.

Persistent viral infection has been suggested as a cause of PPS, and one paper found that mutated polio virus is present in all patients with the post-polio Syndrome, while other papers have not shown this in clear cases of PPS. But, since during polio virus infection the virus mutates frequently, even people who had polio but do not develop the post-polio syndrome should have mutated virus within many of their cells.

Others have looked at immune system explanations including inflammation and antibodies, which weaken overtaxed neurons. Several authors have demonstrated antibodies unique to individuals with PPS that do not appear in people with a history of polio without PPS. These antibodies and inflammatory chemicals of the immune system may instigate an exaggerated immune reaction which would include chemicals like cytokines, interferons, and Tumor Necrosis Factor, (TNF), which can damage nerve tissue and which have all been found in PPS. This could possibly explain why in PPS there is an inability to regenerate nerve connections to muscle. Further, a paper in 2009 showed that in those with PPS there are always small foreign proteins not found in those without PPS. This would explain why there is inflammation in those with PPS.

Clearly, inflammation in the already damaged spinal tissue could tip the balance into PPS. Apparently there is always inflammation and the presence of inflammatory chemicals and processes entwined within the process of PPS.

If nerve inflammation is the cause of PPS there should clearly be a way to treat it with IVIg or drugs which interfere with the inflammatory process. As of today there is no clear approach that will result in the abatement of PPS by these means although a notable handful of people have benefited treatment with antibodies, the majority have not.

Studies with regard to genes within those with PPS have been done with mixed results. There is clearly a need to pursue such studies comparing the genes of those with PPS to those without PPS. As developments in genetic analysis proceeds at a rapid pace such work could show genes which predispose polio survivors to PPS.

Currently there aren’t any drug treatments that have shown promise in the arrest of PPS. Amantadine and high dose Prednisone have been ineffective. Pyridostigmine showed a slight improvement in walking with one study but in another study the drug showed no benefit. In contrast to this, the mood stabilizer lamotrigine had promising results on pain, fatigue, and quality of life in a small study of 30

patients (15 controls). More studies are clearly needed with lamotrigine. A larger number of patients will validate the statistical significance which was assessed as positive in this small study. The reference is listed at the end of this article.

At the present time treatment of symptoms is the mainstay of the management of PPS. Appropriate physical activity for appropriate muscles is also used as rehabilitative treatment of PPS.

From the review by Lygren et al it was noted that patients with postpolio syndrome who reported doing regular physical activity had fewer symptoms and a higher level of functioning than those who were not often physically active. No prospective data show that increased physical activity leads to muscle weakness as long as weak muscles are not overused and damaged. Unfortunately we continue with symptoms we can only minimize by lifestyle modifications. Whether something will happen which will change this for us at this time is unknown. Although there is rapid progress in biomedicine and there have been discoveries of chemicals which can spur new growth of neurons and end-fibers, the time, if ever, to an effective treatment with these agents is unknown and fraught with problems and expense. On the other hand many in the community of people with disabilities urge us to do what we can now to manage our lives.

We should do our best to help ourselves and Live! I think this is the best advice for now. I have seen “high profile” individuals who suffered disability orient their entire lives with the hope of a cure on the horizon only to pass away before any cure materialized. I don’t believe this is a good posture for us, although hope is always present.

REFERENCES

Lancet Neurol 2010; 9: 634–42 Henrik Gonzalez, Tomas Olsson, Kristian Borg) Gonzalez H, Ottervald J, Nilsson KC, et al. Identification of novel candidate protein biomarkers for the post-polio syndrome – implications for diagnosis, neuro-degeneration and neuro-inflammation. J Proteomics 2009; 71: 670–81)

Farbu E, Gilhus NE, Barnes MP, et al. EFNS guideline on diagnosis and management of postpolio syndrome: report of an EFNS task force. Eur J Neurol 2006; 13: 795–801.

Lygren H, Jones K, Grenstad T, Dreyer V, Farbu E, Rekand T.Perceived disability, fatigue, pain and measured isometric muscle strength in patients with post-polio symptoms. Physiother Res Int 2007; 12: 39 –49.)

On AY, Oncu J, Uludag B, Ertekin C. Effects of lamotrigine on the symptoms and life qualities of patients with post polio syndrome: a randomized, controlled study 2005;20(4):245-51

READ CODES are the current standard clinical terminology system used in Primary Care (by GP’s) in the UK

Read codes have traditionally been used to record clinical summary information as they allow some standardisation of the way that information is recorded. They were developed within a framework of disease areas or ‗chapters‘, e.g. surgical, etc. The first character of the code indicates which chapter it is representing: e.g. F Nervous system and sense organ disease.

There are two major systems in use in the UK at the moment, Version 2 (5 bite) and Version 3 .

Version 2	Version 3
Poliomyelitis encephalitis	F 0302
Late effects of acute poliomyelitis	AE1
Acute Poliomyelitis	A40
Polio	Xa97c
Post Polio Syndrome	F29y1	X0002p

APRIL 2011 NEW CODES ISSUED FOR Post-Polio Syndrome

ACRONYMS FOR SENIORS.

Yes the urinal has a fly in it.Research proved thatif a man saw a fly in the urinal he would aim at itand reduce spillage by 80%. Some makers nowetch a fly into the porcelain.

BTW – Bring the Wheelchair

BYOT – Bring Your Own Teeth

FWIW – Forgot Where I Was

FYI – Found Your Insulin

GGPBL – Gotta Go, Pacemaker Battery Low

GHA – Got Heartburn Again

HGBM – Had Good Bowel Movement

IMHO – Is My Hearing-Aid On?

LMDO – Laughing My Dentures Out

OMRR – On My Riser Recliner

OMSG – Oh My! Sorry, Gas

ROFL-CGU – Rolling on the Floor Laughing…Can’t get Up

WTP – Where’s the Prunes

GGLKI – Gotta Go, Laxative Kicking in

Laughter is the shortest distance between two people.

Victor Borge

The National Health Service Proposed Cuts.

The Allergists voted to scratch them, but the Dermatologists advised not to make any rash moves.

The Gastroenterologists had a sort of a gut feeling about it, but the Neurologists thought the Administration had a lot of nerve.

The Obstetricians felt they were all labouring under a misconception and Opthalmologsts considered the ideas short sighted.

Pathologists yelled, “Over my dead body!” while the Paediatricians said, “Oh, Grow up!”

The Psychiatrists thought the whole idea was madness, while the Radiologists could see right through it.

The Surgeons were fed up with the cuts and decided to wash their hands of the whole thing. The ENT specialists didn’t swallow it, and just wouldn’t hear of it..

The Pharmacologists thought it was a bitter pill to swallow, and the

Plastic Surgeons said, “This puts a whole new face on the matter….”

The Podiatrists thought it was a step forward, but the Urologists were Pi***d off at the whole idea.

The Anaesthetists thought the whole idea was a gas, but the Cardiologists didn’t have the heart to say “No!”

In the end, the Proctologists won out, leaving the entire decision up to the A******es in London.

Post Polio Syndrome – a challenge of today

European Conference, Copenhagen, Denmark, August 31st to September 2nd, 2011

European Polio Union [EPU} and the Danish Society of Polio and Accident Victims [PTU]

AIM

The European Polio Union wishes with this conference:

 To give medical and social professionals a possibility to exchange new research results

and to debate relevant topics on a professional level

 To give polio survivors a possibility to achieve and exchange new knowledge on

assessment, treatment and coping

	To achieve awareness on post-polio issues in the health sector and social services
Congress language will be English. Online registration.www.polioconference.com REGISTRATION FEE
After April 1st 20113500 DKK / 470 Euro950 DKK / 260 Euro [£220.13]
Professionals Polio Survivors

Registration fee includes participation of the sessions and catering during the conference & free admission for the Welcome reception. Conference Dinner must be paid separately.

VENUE	CONFERENCE SECRETARIAT
Hotel Crowne Plaza Copenhagen Towers Ørestads Boulevard 114—188 DK 2300 København S, Denmark +45 88 77 66 55 www.cpcopenhagentowers.dk [rooms from £104 a night]	Merete BertelsenPTU, Fjeldhammervej 82610 Rødovre, Denmark+45 3673 9044mbe@ptu.dk

Booklet Featured in April 2011 Post Polio Matters.

Post-Polio Health Care Considerations For Families & Friends

Joan L. Headley, MS – Post-Polio Health International, St. Louis, Missouri Frederick M. Maynard, MD – Physical Medicine and Rehabilitation, Marquette, Michigan

With

Stephanie T. Machell, PsyD – International Rehabilitation Center for Polio, Framingham, Massachusetts

Holly H. Wise, PT, PhD, Associate Professor, Division of Physical Therapy, College of Health Professions, Medical University of South Carolina, Charleston, South Carolina

PUBLISHED BY Post-Polio Health International www.post-polio.org

An interactive copy is available on the Internet.

Anyone who would like a printed copy of this document please get in touch before the end of August when we will be ordering from PHI. Cost £7.50 inc. post and packing.

WE’RE STILL HERE

2011 POLIO-WORLD POSTER COMPETITION

Organiser Micki Minner.

You are invited to send us photographs to show your individual history of Polio.

We are looking for three photos: the first showing Polio,

the second depicting Living with Polio and the third Adapting to Post-polio.

We will use the photographs to create an awareness of Post-polio and to show the world that WE‘RE STILL HERE!.

PLEASE ENTER AND

send your submission to Mickiminner@msn.com Three photos and with a description of 50 words of less.

Please put Polio-World in the subject line, your description in the email and attach your photographs.

You can design the whole poster yourself if you wish. Deadline is September 1st 2011.

Three pictures and a few words can tell the Post Polio Story.

.1952 – Waist down paralytic polio age 5.

1953 – Hiding thin left leg

1969 – Policewoman 1969 to 1973

1987 – Working 60+ hours a week.

1988 – Slipped on wet floor, new problems

for seven years with nothing found.

1995 – I said. ‗I had polio as a child‘ and at

last my prior polio is in the equation.

1997 – Second hospital and opinion and

1953 1969 diagnosed with PPS.

2008

Create your own smiley at www.smileycreator.com

GASTROINTESTINAL INVOLVEMENT IN THE POST-POLIO SYNDROME (PPS) Sinn Anuras, M.D.

A LINCOLNSHIRE POST POLIO LIBRARY ARTICLE www.poliosurvivorsnetwork.org.uk/archive/Lincolnshire/library/usa/gi.html

This study has not been published by a peer-reviewed Journal — or on the Internet until now, except for America Online. Tom Walter put together this article from talks the Dr. gave about it in the early ’90’s, plus feedback he gave to some local participants.

BACKGROUND – During the late 1980’s to early 1990’s, Dr. Anuras was Director, Division of Gastroenterology, Department of Internal Medicine at Texas Tech University in Lubbock. Along with Terri Bozeman, R.N., they surveyed over 750 post-polio patients regarding their gastrointestinal symptoms. Following report is from a paper they delivered at The Second TexasOklahoma Post-Polio Symposium, September 21-22, 1991, at the Ramada Inn of Wichita Falls, TX. (To that point, they had included 500 patients in the results; Table 3 below has been updated to reflect the symptoms of the first 754 participants in the study.)

ABSTRACT – Gastrointestinal involvement is common in the post-polio syndrome, and it appears to affect the entire gastrointestinal tract. Unfortunately, there are only a few studies in this fascinating area. More extensive studies are needed to understand the pathologic and pathophysiologic processes in this problem, so that patients can be treated properly.

We report our survey of gastrointestinal symptoms that could affect up to 50 per cent of the postpolio syndrome patients in this review. We also propose the underlying pathophysiologic changes, outline the diagnosis and treatment for difficulties of various parts of the gastrointestinal tract.

INTRODUCTION – Normal gastrointestinal motility is a function of the gastrointestinal smooth muscle and is regulated by both the intrinsic (myenteric plexus) and extrinsic nerves of the gastrointestinal tracts. Extrinsic nerves from the central nervous system (brain and spinal cord) connect the enteric nervous system (submucosal plexus and myenteric plexus) with the central nervous system. Therefore, any functional or structural abnormality of either the smooth muscles or the intrinsic or extrinsic nerves will result in gastrointestinal dysmotility causing gastrointestinal symptoms.

The symptoms produced depend on areas of involvement. This abnormality may either involve the entire gastrointestinal tract or be limited only to certain parts depending on the underlying disease. Table 1 lists various causes of neuromuscular disease of the gastrointestinal tract that can cause gastrointestinal dysmotility by extrinsic denervation to certain parts of the gastrointestinal tract.

TABLE 1

– CAUSES OF NEUROMUSCULAR DISEASE OF THE GASTROINTESTINALTRACT [excluded purely to save space – see full article online]

Results from our survey suggest that PPS may also cause damage to the intrinsic nerve (myenteric plexus) of the gastrointestinal tract. Future physiologic and pathologic studies of the gastrointestinal tract in PPS will elucidate these abnormalities.

Symptoms produced by gastrointestinal dysmotility are variable depending on the part of the gastrointestinal tract involved. Table 2 lists symptoms produced by dysmotility of certain parts of the gastrointestinal tract. We can see that there are a variety of symptoms that can be caused by gastrointestinal dysmotility. Thus, patients with the same disease may have different complaints

that may appear to be unrelated. Patients with PPS may have difficulty with swallowing and constipation, and both symptoms can be caused by PPS.

GASTROINTESTINAL INVOLVEMENT IN PPS – There are only a few studies of gastrointestinal involvement in polio survivors, and all are limited to oropharyngeal dysphagia. Gastrointestinal involvement has been virtually neglected by physicians who take care of PPS patients. We surveyed the nature and incidence of gastrointestinal symptoms in PPS patients by sending out questionnaires to 3,000 PPS patients.

Table 3 lists the symptoms that we analyzed from the first 754 PPS patients who responded to our survey.

The results from our survey suggested that gastrointestinal symptoms are common and extensive in PPS patients. These gastrointestinal symptoms may be caused by extensive gastrointestinal dysmotility from the oropharynx to the colon. To understand the pathophysiology and pathology, we need to study the motility and histology of the esophagus, stomach, small intestine and the colon of PPS patients. Full thickness biopsies of bowel wall from surgical or

TABLE 2 – SYMPTOMS PRODUCED BY DYSMOTILITY OF VARIOUS PARTS OF THEGASTROINTESTINAL TRACT
ORGANS	SYMPTOMS
1	Oropharynx	Difficulty initiating swallows, food pooling in the pharynx, choking when swallowing, aspiration and aspirated pneumonia in severe cases
2	Esophagus	Difficult swallowing (dysphagia), food sticking in the mid sternum area, occasional substernal pain with swallows (odynophagia)
3	Stomach	Nausea, vomiting, abdominal fullness long after meal, recurrent symptoms of stomach outlet obstruction (gastroparesis)
4	Small intestine	Abdominal pain and bloating after a meal, nausea, vomiting, diarrhea, recurrent symptoms of small bowel obstruction in severe cases (intestinal pseudoobstruction)
5	Colon	Constipation, abdominal pain and bloating, recurrent symptoms of colonic obstruction in severe cases (colonic pseudoobstruction)
6	Anus	Constipation

TABLE 3 – GASTROINTESTINAL SYMPTOMS OF 754 PATIENTS
Incidence	Symptoms	Organs Involved
24%	Difficulty initiating swallow	Oropharynx
32%	Choking with swallowing
32%	Difficulty swallowing (dysphagia)	Esophagus
51%	Heartburn
28%	Nausea	Stomach, Small Intestine
12%	Vomiting
53%	Abdominal bloating	Stomach, Small Intestine, Colon
40%	Abdominal pain	Small Intestine, Colon
32%	Diarrhea
48%	Constipation	Colon, Anorectum
0.7%	Intestinal pseudoobstruction	Small Intestine.

autopsy specimens will enable us to examine the neuromuscular apparatus of the gastrointestinal tract in these patients.

DIAGNOSTIC WORK-UPS FOR GASTROINTESTINAL SYMPTOMS IN PPS PATIENTS

Since our survey showed extensive involvement of the gastrointestinal symptoms, the diagnostic work-ups must be directed to the patients’ complaints (see Table 3 next page). Table 4 next page lists the work-ups for various parts of the gastrointestinal tract.

If the complaints are oropharyngeal symptoms, video or cine-esophagram is useful to evaluate the swallowing mechanism of the patients. The abnormalities include unilateral bolus transport through the pharynx, pooling in the valleculae or pyriform sinuses, delayed pharyngeal contraction, and impaired tongue movements. Upper esophageal sphincter manometry may show incoordination between upper esophageal sphincter relaxation and pharyngeal contraction during swallowing.

Work-up for esophageal dysmotility includes barium esophagram and esophageal manometric study. Barium esophagram will rule out esophageal obstruction as a cause of dysphagia, and it will enable us to evaluate the diameter of the esophagus, gastroesophageal reflux and contractile activities of the esophagus. Esophageal manometric study will detect any motility disorder of the esophagus. The standard esophageal manometric technique uses low compliance water perfusion system through an esophageal manometric tube.

To evaluate gastric dysmotility, we obtain upper gastrointestinal (UGI) x-rays and radionuclide gastric emptying study. UGI x-rays will enable us to detect any ulcer or outlet obstruction that may mimic gastric dysmotility. Radionuclide gastric emptying study using technetium-labelled scrambled egg will quantitate the emptying function of the stomach. In normal subjects, half of the solid contents will empty from the stomach in 45-90 minutes. If there is a delay in gastric emptying, it will take longer than 90 minutes for half of the solid contents to empty from the stomach. Radionuclide gastric emptying study is an excellent objective method to measure the stomach emptying function.

Abdominal bloating and distention may develop in patients with intestinal and colonic dysmotility. Plain abdominal x-rays are useful to detect gaseous distention of the dysfunctional organs. The patients may have ileus of the small intestine or colon due to severe dysmotility causing symptoms and signs of bowel obstruction without any evidence of mechanical obstruction. (It is called intestinal pseudoobstruction or colonic pseudoobstruction depending on the organ involved.)

Small intestinal dysmotility can be evaluated by small bowel x-rays and small intestinal manometric study. Small bowel x-rays enable us to rule out organic disease, to evaluate the size and contractility of the small bowel, and to measure the barium transit time of the small bowel.

TABLE 4 – DIAGNOSTIC WORK-UPS FOR GASTROINTESTINAL ORGANS IN PPS PATIENTS
ORGANS	DIAGNOSTIC TESTS
Oropharynx	(1) Video esophagram	(2) Upper esophageal sphincter manometry
Esophagus	(1) Barium esophagram	(2) Esophageal manometry
Stomach	(1) Upper gastrointestinal xrays	(2) Radionucline gastric emptying study
Small Intestine	(1) Plain abdominal x-rays	(2) small bowel x-rays (3) small intestinal manometry
Colon	(1) Plain abdominal x-rays	(2) Barium enema (3) Radio-opaque manometry
Anus	(1) Anorectal manometric study

Small intestinal manometric study will detect any abnormal motility of the small intestine. During fasting, the small intestine has a unique pattern of motility called migrating motor complex (MMC).

MMC has three phases. Phase 1 is a quiescent period lasting for 10-15 minutes. It is followed by phase 2 which shows intermittent contractions that last for 60-90 minutes. The contractions will intensify with time and will reach phase 3 when the small intestine contracts intensely at approximately 11-13 times per minute. Phase 3 lasts for 5-8 minutes, and the small intestine becomes quiescent again, i.e., it returns to phase 1.

This cyclical motor activity will go on until the subjects are fed. After feeding, the subjects will have fed activity which resembles active phase 2. The fed activity does not have any cyclical motor activities. Fed activity usually lasts for 4-5 hours and the small intestine will return to fast pattern after that. Any small intestinal dysmotility will cause alteration of the above activities. Small intestinal manometry is very sensitive to detect abnormality in patients with small bowel dysmotility.

To evaluate colonic dysmotility, we use barium enema, radio-opaque markers study and colonic manometric study. Barium enema will enable us to rule out any organic lesion and to evaluate the size and length of the colon. Radio-opaque markers study will determine if colonic dysmotility is caused by colonic inertia or functional colonic outlet obstruction. Colonic manometric study will detect colonic dysmotility.

Function of the anorectal area can be evaluated by anorectal manometry. In normal subjects, the internal anal sphincter relaxes when the rectum is distended. If the patients lose this reflex, they will have constipation.

As we can see from the above discussion, there are specific diagnostic work-ups for certain parts of the gastrointestinal tract. A careful history will direct us to study the appropriate organs. From the survey, it appears that gastrointestinal dysmotility in PPS patients can affect the entire gastrointestinal tract. Therefore, taking a good history from the patients is important to direct us to give appropriate diagnostic work-ups.

TREATMENT – Treatment must be directed to the patients’ problems. We will discuss the treatment of dysmotility of each organ separately.

(1) oropharyngeal dysmotility.

The most serious complication of oropharyngeal dysmotility is aspiration during swallowing. The treatment must focus on the prevention of aspiration that may lead to aspiration pneumonia. Pharmacologic treatment has not been very effective. In patients who are less symptomatic, taking the time to eat or drink will reduce the incidence and severity of choking and aspiration. Dilatation of the cricopharyngeus muscle with bougies can be tried in more symptomatic patients. However, the effectiveness of the dilatation is not proven. It might be worthwhile to try before embarking on more invasive therapy.

In patients who have severe aspiration and recurrent aspiration pneumonia, cricopharyngeal myotomy should be considered. The technique involves sectioning the fibers of the cricopharygeus down to the submucosa; and it can even be done under local anesthesia in poorrisk patients. Two-thirds of the patients operated upon have been relieved of dysphagia. There are a small number of patients who develop massive aspiration after cricopharyngeal myotomy. We strongly believe that any patients who undergo cricopharyngeal myotomy require esophageal manometric study and gastric emptying study.

Esophageal manometric study will allow us to evaluate the competency of the lower esophageal sphincter; the competency will help to prevent gastroesophageal reflux. Gastric emptying study will allow us to detect any delay in gastric emptying that may promote gastroesophageal reflux

and aspiration. Abnormality of any of these two tests may exclude the patients from having cricopharyngeal myotomy.

(2) Esophageal dysmotility.

The treatment for dysphagia due to abnormal motility has not been effective. Calcium channel blockers (such as nifedipine), nitroglycerine and balloon dilatation of the lower esophageal sphincter may be useful in some patients with diffuse esophageal spasm due to intrinsic nerve dysfunction of the esophagus. At least half of the patients with diffuse esophageal spasm do not respond to the above regimens.

In patients with gastroesophageal reflux and heartburn, antireflux regimen must be used to prevent complications of reflux esophagitis and stricture formation. We give a dose of H2 receptor antagonists such as Tagamet, Zantac, or Pepcid before bedtime, and elevate the head of the bed approximately 6 inches.

(3) Gastric dysmotility.

Delayed gastric emptying usually occurs with gastric dysmotility. Metoclopramide has been used to treat this problem with variable results. A liquid and low fat meal empties faster from the stomach than a solid meal. Therefore, we advise the patients to take a low fat and liquid meal. Feeding formula such as Ensure, Vivonex, Isocal and so on can be used to supplement the calories.

A new prokinetic drug, cisapride, is being studied for delayed gastric emptying. Early results are encouraging. When this drug is available in the market, it will be useful for this group of patients.

(4) Small intestinal dysmotility.

Small intestinal dysmotility may cause postprandial (after eating) abdominal pain and bloating. In severe cases, the patients may have intestinal obstructive symptoms and signs. There has been no effective prokinetic drug available yet for this problem. An ideal prokinetic drug should either enhance the contraction of a damaged muscle or normalize the coordination of a damaged myenteric plexus. No drug has, as yet, lived up to this expectation.

The symptoms in most patients occur intermittently, and only a small number of patients may have persistent symptoms. Since the symptoms are directly related to meals, manipulating the amount, the nature and the frequency of meals may help some patients. The patients should consume 25 calories/kg of ideal body weight per day divided into 3-4 equal amounts. Half of the calories may come from feeding formulas. The patients must avoid carbonated beverages to prevent adding excessive gas in the digestive tract.

Occasionally, nasogastric suction and intravenous fluid are needed when the patients have intestinal obstructive symptoms. When the obstructive symptoms are persistent or occur several times a week, a long term parenteral nutrition is the only treatment that will improve the patient’s symptoms and nutritional status.

(5) Colonic dysmotility.

The most common complaint is chronic constipation. The patients must avoid using stimulant laxatives such as Senokot, Dulcolax, etc., on a long term basis because most of the stimulant laxatives can damage the myenteric plexus when using them long term. This effect will further compound the difficulty that the patient already has.

We usually try the patients on high fiber diets or fiber compounds such as Fibercon or Metamucil. More than half of the patients will respond to these regimens. If the patients do not respond to fiber, we next try to use saline laxatives such as milk of magnesia. We titrate the dose of milk of magnesia to obtain one bowel movement a day. In early stages, it is not uncommon to use milk of magnesia up to two ounces per day. Later on, we are usually able to maintain the patients on one tablespoon daily. Tap water enema can

be used if the patients have no bowel movement for three days while on fiber or milk of magnesia.

In patients with obstipation despite adequate dose of fibers or milk of magnesia, an ileostomy or subtotal colectomy with ileoproctostomy may be required to take care of the problem. We encounter very few patients with colonic dysmotility with severe obstipation that require such a drastic approach.

(6) Anorectal dysfunction.

At the present time, we are not certain if PPS patients have any anorectal dysfunction. Anorectal manometric study in these patients will enable us to better understand the anorectal function in this group of patients. The medical treatment of anorectal dysfunction is disappointing. Surgical treatment such as rectal myectomy may be beneficial to some patients with anorectal dysfuntion.

LPP Library article created 7th February 1997. Last modification 31st January 2010.

NEW BOOK A Rough Road by Patrick J Bird.

After contracting polio at age four in 1940, Paddy spends nineteen months in a ―reconstruction home‖ far from his family. This is his story of that time, presented mainly from the child’s point of view.

Enduring aching sadness and loneliness along with the pain and disappointments of rehabilitation, Paddy learns to prevail physically and emotionally through his

interactions with a colorful cast of hospital staff—from a friendly giant orderly and a light hearted nurse to a no-nonsense physical therapist and an evangelical swimming instructor as well as an imposing and frightening physician and his unsympathetic nurse.

Perhaps most important to his ―reconstruction,‖ however, is the arrival of roommate Joey. An older, adventure loving youngster with spina bifida, Joey introduces Paddy to the joys and tomfoolery of boyhood and inspires him with his physical and mental toughness. Then there are the infrequent – but significant – visits of Paddy‘s mom, who is sure the Blessed Virgin will cure him, and his Pop, who fears in his heart that he will have a cripple for a son.

Also woven gently into the fabric of this deeply personal story are relevant aspects of the polio experience during the early 1940‘s including the painful immobilization in casts, the dreaded iron lung, the often unwise corrective surgery, and the stigma (feeble and likely retarded as well) associated with survivors – even President Roosevelt, for instance, stricken with polio in 1921, went to great lengths to hide his atrophied legs from the public.

A Rough Road is a testament to the capability of children to overcome the most difficult of times. It is a walk down memory lane for some, a lesson in history for others, and a moving experience for all.

ISBN-13: 9781452892955 $10.45 Trade Paperback

For sale at Amazon.com, Kindle eBooks, book stores & through other channels.

pbird@ufl.edu

Member Guido D’Isidoro recommends good travel website for the disabled.

Guido recommends us to have a look at the website, put together by Sean Gorman who has Multiple Sclerosis and is deteriorating, as it might be of interest to members.

Planning a trip, a holiday, or a day out? Come to Disabled Travel Guide first. Our travel community share reviews and information describing their best and worst experiences, so you can decide where to go and what to avoid. Hotels, locations, music venues, walks. It’s all here on Disabled Travel Guide. Join our community, leave a review, and share your own expert information. The short video on the right explains where to start, and how to get the most out of our site

www.disabledtravelguide.co.uk/

Glycemic Load diet helped me lose weight then STRESS and CHOCOLATE snuck in.

Three requests for more information on the diet I started in 2009 in the last two weeks.

In 2009 I was told I had Type 2 diabetes, a huge shock! I remembered polio survivor Derek Paice article in a LincPIN on glycemic index and dieting and did some research. I found the Patrick Holford Low Glycemic Load [GL] Diet Bible which advised a weight loss meal plan of 40GL units per day. Three 10 GL meals and 2 x 5GL‘s for snacks. There were some ideas of meals and a few pages of charts of food groups. What excited me was the choice and taking fruit you could have one date, ten raisins or 600 grams of berries for the same 5GL unit amount. Berries here I come, the thought of not having to eat like a bird was great. We looked at what we ate and swapped the high GL foods for low ones and we were still eating food we liked. I did not expect to lose weight as easily as I did because living with PPS leaves Richard and I with little energy for exercise other than a few stretches. I reported in the June 2009 LincPIN that I had lost 48 lbs in three months and my blood sugar and cholesterol levels were now normal. I then started to add the odd treat and the weight loss slowed but I did very well for a year.

In the spring of 2010 Richards assessment for the new Personal Budget was started and it took eight months to get through the whole procedure. Eight months of STRESS where I would go looking for highs and bought chocolate and gooey cakes. I realise now that knowing this was making me gain weight I stopped weighing myself once a week.

On 12th July I looked in the mirror, winced and made the decision to stop being stupid and cut out the high GI stuff and weigh myself. I went back to eating 40GL units of food per day and today am 15 lbs lighter. I am eating a balanced diet with a reasonable plateful of food. I don’t feel hungry between meals anymore.

To make up a 10GL meal you need a glycemic load index book and pick food items from that to end up with a balanced plateful protein, carbohydrate, vegetables, milk products. Here are just a few items at 5GL that show the lower the GL amount the more you can eat.

Breakfast for me is a sachet of porridge with 200ml low fat milk, a level teaspoon of cinnamon because that helps lower cholesterol, a large helping of berries and a low cholesterol drink on top. Plus a Fat Free Actimel in a pint of water. Richard adds an egg to this because he needs the added protein.

Lunch is a medium portion of chicken, turkey, ham, egg or cottage cheese, good portion of salad items and a toasted slice of brown soya bread and some light mayonnaise [love the mustard one and just found a herb one in Lidl]

Evening meal is lean meat, salad or stir fry vegetables micro waved not fried, and a small sweet potato, or a small portion of brown rice or pasta. Pud is a low fat yogurt and more lovely berries.

 28g portion of cornflakes and 200ml full fat milk 24GL

 25g sachet of porridge oats and 200ml skimmed milk and 300g of berries 6GL. .

CEREALS 5GL units	DAIRY PRODUCTS 5 GL units	FRUIT 5 GL Units
7g of cornflakes	90 ml rice milk	7g One date
9g of puffed wheat	250ml full fat milk	19g One fig
11g of Special KTM	400ml semi skimmed milk	75g Ten grapes
12g one Weetabix TM	100g low fruit yogurt	120g One orange
25g All Bran TM	150g soya yogurt	200g cherries
75g porridge oats	333g plain yogurt	600g berries – 450g to the lb!

Management Committee [Trustees]

Chair – Sandra Paget – sandra.paget@poliosurvivorsnetwork.org.uk Secretary – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Treasurer – Gillian Bryan – gillian.bryan@poliosurvivorsnetwork.org.uk

Glenna Tomlin – Glenna.tomlin@poliosurvivorsnetwork.org.uk

Operations Team

[Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors

Friend/Supporter. If you would like to support the Polio Survivors Network you can do so by making a yearly donation of your choice.

You will receive a yearly update of our activities and be invited to our AGM.

Membership Fees

Individual – £ 12.50 per year

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo. Associate Membership – £ 10.00 per year

Yearly fees can be paid by Standing Order.

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet.

Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us.

Donations

Donations, small or large, towards our work will always be gratefully received.

Val Scrivener is supporting us by making photo greetings cards for you to purchase

 Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

The Gift Aid scheme. Charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer. Between 6 April 2008 and 5 April 2011, the government will also give UK charities an extra 3% of all eligible donations. 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%).

NEW

P.O. Box 954, Lincoln, LN5 5ER, U.K.  01522 888601because WE’RE STILL HERE!Website – www.poliosurvivorsnetwork.org.ukEmail – info@poliosurvivorsnetwork.org.ukRegistered Charity No. 1064177

© PHOTO CARDS by MEMBER VAL SCRIVENER Sold in aid of POLIO SURVIVORS NETWORKPack of 5 – £3.95 inc. P & P.Order by writing to PSN Emailing johnval.scrivener412@btinternet.comOr ringing Val Direct on 01234 346 397

After contracting polio at age four in 1940, Paddy spends nineteen months…. Info on new book Page 16.

Gastrointestinal issues for Polio Survivors Page 12 to 17

Post Polio Matters Volume 7 Issue 5 Read More »

Post Polio Matters Volume 7 Issue 4

Page 1

It does exist!World Health Organisation Code forPOST-POLIO SYNDROME isG 14andSUPPORTING PHI’S YEARLY CAMPAIGNPages 6 to 9Paul and Trevor Corr visit LincolnTo present PSN with the fantastic sum of £900 Donated by Family and Friends In memory of Life MemberJanet CorrProfessor Catherine SackleyPrimary Care Clinical Sciences, University of Birmingham. Speaking to the RESULT Study and PPS Component.August 31st EUROPEAN CONFERENCE ON POLIO – Page 10to September 2nd 2011 in Copenhagen, Denmark.

APRIL 2011

The Polio Survivors Network Newsletter – Volume 7, Issue 4

n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

PSN AGM Saturday 18th June 2011

Venue:- The Pinsent Mason Suite 2, The MAC Birmingham, Canon Hill Park, Birmingham B12 9QH

AGM 1.00 pm Speakers 2.00 pm

Verite Reily Collins, Polio Survivor, Travel & Health Author

STOP

PRESS

Professor

Catherine Sackley

Speaker

18th June

Page 2

Showground, Peterboroughwww.mobility roadshow.co.uk

New Members and Donations received.

Contents

Page 2 Contents, New members and Donations

Page 3 Editorial & Trustee Meeting Dates.

Page 4 Message from the Chair, Sandra Paget

Page 5 Annual General Meeting.

Page 6/9 Post-Polio Health Care Considerations For Families & Friends

Chapter III and Outline.

Page 10 European Polio Conference.

Cøpenhagen, Denmark. August 31st / September 2nd 2011

New Northern Ireland holiday getaway for disabled is unveiled.

Page 11 Polio world Poster Competition, WE‘RE STILL HERE. See back page for 2010 Posters.

Changing Toilets Info.

Page 12 God‘s Pharmacy is Amazing

Page 13 Janet Corr.

Page 14/17 Making more effort to put over out points. Verité Reily Collins. Sandra Paget Chair Comments.

Page 18 Polio Survivors sharing info.

Page 19 Contact Information.

Back Page Val Scrivener‘s Photo Cards on sale to support PSN. Why not order a Pack or Two to swell our funds?

Some entries from the 2010 Polio world Poster

Page 10

European PPS Conference

Polio World 2011 Poster Competition

Have you been and looked at a Changing Place Toilet?

NAIDEX

GLASGOW

14/15 Sep 2011

LONDON EXCEL

19/20 Oct 2011

www.naidex.co.uk

MOBILITY ROADSHOW

June 30th to July 2nd 2011 East of England We welcome new member Donna Jean Kornerup

Thank you to the following for donations given towards our work. Nicholas Harvey, J Stevens, Val Scrivener, Ivor Hills, Christine Darlington, Lynn Hobday, Diana Nash, Olivia and Barry Branston, Dianah King, Hilary Boone, J Dobbie, Stuart Barnett, Norman Jones, Lesley Forsyth, Clare Colfer, Audrey Brown and Bob Price.

We also thank the family and friends of Life Member Janet Corr for their In Memoriam Donation of £900.00

Total since last newsletter is £ 1,178.50

We have no paid employees. We would like to recognise and thank the following for so generously donating their time. The Trustees, Dave Eate, and Bob Price

Donations & offers of time towards our work are always welcome.

£900.00

Donated in memory of Life Member Janet Corr Page 13

Editorial by Hilary Boone

Polio Survivors Network – Meeting information

Annual General Meeting is on Saturday 18th June 2011

At the MAC, Canon Hill Park, Birmingham, B12 9QH, from 1pm to 5pm.

www.macarts.co.uk/plan-your-visit/getting-here/

The next Trustees Meeting is being held in the Midlands in July 2011

If you have any matters for our attention at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

What a winter, not seen so much snow since the year I was born. OK, . I do not remember March 1947 but was told ‗Your mother had to walk to the end of the road in London to get on the ambulance‘ and some folks in the Wolds in Lincolnshire told me they were able to use the telegraph wires as hand rails the snow was that deep and it took six weeks before their town was reachable by road. It was a week before we could get someone to dig our drive out but even then we could not use our electric wheels as the pavements and car parks were not treated. When we got to our Dental appointment adjacent to a GP surgery we were horrified to see the car park was one sheet of ice an inch thick. Very difficult to get from car to door. We need to be better prepared for this winter.

Page 10. New Northern Ireland holiday getaway for disabled is unveiled. I am sure our members will have found other holiday places that are accessible. Why not write and tell us about them?

2011 Polio Poster Competition Information. Please let us know if you submit an entry.

Cuts in Council Spending could affect some of our members.

There is much on the news about which services Councils are going to cut. The BBC’s ‗Council Spending: Making it Clear‘ survey estimated Adult Social Care spending would fall by 4.7% to £3.4bn in the North in 2011/12 and rise by 2.7% to £3.33bn in the South.

Lincolnshire spent £140m on services such as home care and day centres in 2010/11 but this is being reduced to £130.6m in 2011/12, a fall of 7%. What is happening where you live?

Do you have Direct Provision or Direct Payments or a Personal Budget from your County‘s Social Services? Maybe you might need help in the future. The government define four levels of need, Low, Moderate, Substantial and Critical and each Council defines which of these levels they will support. [1]

If you need to apply for help to manage your life from Social Services the first step will be a Social Worker (SW) or Community Care Officer (CCO) should come and see you and determine your eligibility for one of the above levels. This will involve the completion of a questionnaire/form. To help you be prepared for what you are going to be asked you could ask for a copy before the meeting.

Until recently Lincolnshire County Council (LCC) have been supporting people eligible from moderate level upwards but now are consulting on their ‗proposal‘ that they will no longer support awarding Direct Payments/Direct Provision or Personal Budgets to those on moderate level. This affects 2,899 people in Lincolnshire. Some counties are already only supporting substantial and critical need, and some only critical.

Do you know what is happening where you live? Will local cuts affect you adversely.

Reference – [1] Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113154

Government information for Disabled People – http://www.direct.gov.uk/en/DisabledPeople/index.htm Click on Financial Support, third option – more about financial support.

Highlighted Item – Government responds to the consultation on Disability Living Allowance reform

Dear Members and Friends,

Our Annual General Meeting is almost here and we, at HQ, are working hard to make sure an interesting meeting takes place. This year we are in Birmingham at the Midland Arts Centre. Verité Reily Collins has kindly agreed to speak and we hope that a researcher from the RESULT Study will be able to come along as well. I know PSN members participated in this study and the Final Report will be available shortly.

We need a few more members to help manage PSN. Although, always welcome, this need not be as committee members. For example, we need someone to help source charities and Trusts that PSN is eligible to apply to for funds. If you are interested in research and patient information, you might like to help update our website information.

The time for these activities can be as much as you can spare, e.g. halfan-hour a day or a week , an hour a week, half a day a week, all day, everyday etc.- you get the idea I am sure. All that is needed is, You, a computer and a comfy chair and, perhaps, tea and biscuits.

The responses to our members’ survey are providing some useful information. For example, of those responding to the question asking whether you have other medical conditions, 70% replied ―yes‖ . Some of the conditions reported are common such as, cardiovascular disease, diabetes, asthma and high blood pressure. Conditions you might expect to find in the general population but what might not be expected in the general population is post polio syndrome as well. This is an important issue in view of advice given for lifestyle changes for these conditions such as increase activity levels, reduce weight, go for a brisk walk for 30 mins 5 times a week. And with the knowledge of Verité’s, Hilary and Richard’s experiences we have to work better during the next year to educate and inform clinicians and service providers.

The survey also asked about your ―experiences‖ and these will provide the beginnings of a databank (anonymous) for us to refer to. We need to add to this continually. If you have any health experiences you would like to add please send them to me. Particularly, if you are invited for a health screening test. Your experiences are important because You are important.

On my notice board I have a postcard sent to me about 10 years ago. On the front in multi-coloured lettering is the an observation by Margaret Mead, who was an American anthropologist:

―Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.‘

I believe that do you? Polio Survivors may not be able to change the whole world but the bits that affect you will change when you make the change happen.

Looking forward to seeing you at the AGM! Sandra Paget Chairperson

sandra.paget@poliosurvivorsnetwork.org.uk

Tel: 01494 729373 Mob: 0777 294 0905

Message from the Chair

Life you know is rather like opening a tin of sardines. We are all looking for the key.

Alan Bennett, Playwright and Actor.

Any idiot can rise to a crisis, it is day to day life that wears you down.

Anton Chekov.

SATURDAY JUNE 18TH 2011

Pinsent Mason Suite 2,

The MAC Birmingham, [Midlands Arts Centre] Canon Hill Park,

Birmingham B12 9QH 1.p.m. To 5 p.m.

Bridges Café Bar

Offer a tempting selection including daily specials, breakfast: hot and cold sandwiches,

pastries, delicious cakes, main meals and jacket potatoes.

9am- 11pm (Hot Food available 9am – 8.30pm, snacks available until 11pm)

Arrive early and have a snack or lunch in the Cafe Bar, time to chat with others. Room opens at 1.00 p.m. AGM commences at 1.20 p.m.

Followed by Speakers Verité Reily Collins and Professor Catherine Sackley [See AGM Block on Front Page]

Tea Break and Raffle, and Q&A session

Hotel info near the MAC – http://www.skiddle.com/hotels/Birmingham/near/Mac/ent-e5419/

MAC is located in

Cannon Hill Park, Birmingham,

opposite the

County Cricket Ground on Edgbaston Road, off Pershore Road (A441) and Bristol Road. (A38). Buses

1, 35, 45, 47, 62 and 63.

Post-Polio Health Care Considerations For Families & Friends

Joan L. Headley, MS – Post-Polio Health International, St. Louis, Missouri

Frederick M. Maynard, MD – Physical Medicine and Rehabilitation, Marquette, Michigan

With

Stephanie T. Machell, PsyD – International Rehabilitation Center for Polio, Framingham, Massachusetts Holly H. Wise, PT, PhD, Associate Professor, Division of Physical Therapy,

College of Health Professions, Medical University of South Carolina, Charleston, South Carolina

PUBLISHED BY Post-Polio Health International www.post-polio.org

[EXCERPTED CHAPTER – more details about this document at end of Chapter]

III Late Effects of Polio: The Psychosocial

Is your family member struggling with finding out that he or she has PPS? Does he or she appear to be in denial about what seems to you to be obvious changes in his or her functioning? Many polio survivors have difficulties adjusting to new disabilities. Some people with PPS find that they are now reliving their childhood experiences with polio and that can be traumatic and even terrifying.

Because of the relatively small number of polio survivors, many physicians see very few, if any, and know very little about PPS. Some still believe that the condition is only in their patients’ heads. People with PPS often depend on their own resources to help them cope with this condition, because there is a lack of proper medical and psychological advice.

Fortunately, PPS continues to gain attention in the medical community. A growing number of health care professionals understand PPS and can provide appropriate medical and psychological help. In addition, there are PPS support groups, newsletters and educational networks, such as Post-Polio Health International, that provide up-to-date information about PPS while offering individuals the knowledge that they are not alone in their struggle.

A. Polio: The Experience

Many polio survivors have never shared their experiences with anyone, even their children. You may not have known that your parent even had polio until he or she began to experience the late effects. Why would your family member never have talked about something that seems so important?

The polio experience was a difficult one. Polio carried a stigma similar to HIV/AIDS in that others were afraid to associate with children with polio and their households. It was common for polio survivors discharged from the hospital or rehabilitation to be discouraged from talking about what they had experienced. If they were able to pass as non-disabled, polio soon faded from their awareness. Many didn’t feel that polio had really affected them very much at all until they developed PPS.

However, it did affect them. Acute polio was an extremely painful disease. Along with the pain, the patient would have a high fever and become unable to move parts or all of his or her body. He or she may have developed difficulty in breathing, and even been placed in an iron lung. Children and adults who were hospitalized and contagious were kept in isolation from family, and even when rehabilitating allowed few visitors.

Professionals thought young children did not need an explanation of what was happening to them. Young polio survivors were confused and afraid, sometimes believing they had done something bad to make their parents leave them. There were few mental health professionals on polio wards to help patients deal with their emotions, and those who did do such work didn’t acknowledge the psychological effects of the illness.

The experience, of course, affected children in many ways. For some, especially those who had

polio before the age of 4, it became hard to trust and connect with others. Some became mistrustful of doctors and medical treatment. Certain sights, sounds or smells may bring back the polio experience years afterwards.

When it was time to go through rehabilitation, polio survivors were encouraged to work as hard as they could, often pushing themselves past the point of exhaustion to regain as much mobility as possible. They learned to do whatever they could to function in a society that would make no accommodations for their disabilities. Wherever possible they were encouraged to give up braces and crutches as soon as they were able. Essentially, the message was that if they worked hard enough they could be successful at whatever they wanted to accomplish.

Polio survivors, especially the youngest ones, often returned to the hospital for surgeries for many years afterwards. Some children spent every summer in the hospital having “corrective” surgeries that often did little to improve their functioning. Many came to dread summer. Some felt they were in constant need of “correction” and that they were never good enough as they were.

Polio survivors often became stubbornly independent because of these experiences. They learned to be self-reliant. They exercised and exercised out of a belief that doing so would allow them to preserve their abilities. For many, PPS has felt like a betrayal, because what was helpful then has turned out to be harmful now.

More …

Emotional Bridges to Wellness (Post-Polio Health, 2001) A Guide for Exploring Polio Memories (Post-Polio Health, 2002)

Improving Quality of Life: Healing Polio Memories (Post-Polio Health, 2002)

B. Models of Disability/Identity Issues

After polio, survivors learned to cope with their disabilities. Researchers identified three coping styles that polio survivors used during the initial rehabilitation. Men and women with mild disabilities who could give up their braces and crutches could “pass” as nondisabled. Persons who couldn’t do this played down their use of crutches or braces and magnified physical or personal strengths, thereby “minimizing” the more obvious effects of the disease. Persons who used wheelchairs or ventilators faced the architectural and attitudinal barriers of the times. They couldn’t pass nor minimize, and so fully “identified” with their disability. Many identifiers became leaders of the independent living movement that resulted in changes in society, including the passage of the Americans with Disabilities Act (ADA).

How your family member deals with PPS depends on how they coped with their original polio. Identifiers don’t question who they are now even though they are distressed by new disability. The changes brought on by PPS distresses mostly minimizers and passers. They may experience a sense of being a different person now, and may have to deal with what it means to be a person with a disability. For some, counselling or psychotherapy can help with these concerns.

C. Coping with Stress and Physical Changes

Is your family member having trouble coping with PPS? Individuals who are coping well focus on what they can do, rather than on what they cannot do, and play an active role in their lives, rather than respond as passive victims. They participate in areas of life seen as worthwhile and meaningful. They may have problems, but they are not overwhelmed by them.

People who are coping well appreciate their accomplishments and do not deprecate them because they do not meet some “normal” standard. They participate in valued activities and enjoy doing so. When they have problems, they solve them by making changes in their physical and social enviroments, such as eliminating architectural barriers in their homes and making new friends. They do not wait for a “cure” to fix everything.

To cope well with increased limitations, polio survivors may need to make important realistic value changes. They cannot deny their disability. Persons who successfully cope with their disability enhance their ability to change and to maintain relationships.

The late effects of polio can be complex and distressing as it may arouse painful memories that may interfere with the need to make major lifestyle changes. However, survivors often realize that changes, at their own pace, are manageable. They can use their coping skills to adjust.

Working hard to meet goals and surmount adversity are characteristics of the “polio tradition.” Your family member has coped with many difficult life experiences. With support, he or she can cope with these new challenges.

D. Relationships: Families and Friends

As family members become more disabled, they may become more isolated from you, other family members and friends. They may be less able to attend functions or engage in activities. Others in your social circles may not now how to deal with a person with a disability. If your parent has cognitive changes, this makes communication harder. Polio survivors’ independence can also pose challenges for those around them.

Everyone needs support from family and friends. If you can help loved ones keep their relationships, and even find new ones, you will help them to have the best possible quality of life. Offer to help them find ways of getting together with friends and family, such as using senior or paratransit services, or provide rides yourself. Encourage them to have friends or family over. On the other hand, help your family member use other means of connecting, such as the telephone or computer. Aged parents might enjoy getting out to the local senior center. There are many activities for all interests and usually transportation. Support groups for PPS or other issues might help them feel less isolated.

Every relationship is unique, but for any relationship to succeed, both individuals will need to cope with any disability. This requires a realistic acceptance of the disability with an emphasis on what one can do, rather than one what one cannot do.

Caring for an aging parent or spouse can strain a relationship. Here are some suggestions on how to keep a relationship healthy.

 Accept yourself and your family member. He or she is probably not going to change at

this time of life.

 Be actively concerned with each other’s growth and happiness.

 Commit to the relationship and to the other person.

 Communicate clearly with each other.

 Deal with feelings.

 Provide freedom and time away from each other.

 Be realistic about demands on each other.

 Be flexible and adaptive in confronting new challenges.

 Be prepared to accept new roles.

If you are having difficulty with a family member or your role as caregiver, or if these ideas bring up new issues, seek professional help. Support groups for caregivers are available and can help family feel less isolated. [End of Chapter]

[Editors Note – This 40 page document has a Flowchart.

Visit www.post-polio.org/edu/healthcare to view the information about your loved one‘s postpolio care considerations by using the flowchart and answering the questions ―yes‖ or ―no‖ then reading the sections that apply to your polio survivor‘s needs.]

MEMBERS NOT ON THE INTERNET can purchase copies of the 40 page document at $10 each [£6.25] plus postage and packing (figure unknown at the moment). If you would like a copy then please get in touch BY THE END OF MAY 2011 when we will place the order. To give you a little more information I have included the Outline.

OUTLINE

I. II.

Considerations for Hospitalized Polio SurvivorsLate Effects of Polio: The Medical

A. Polio: The Disease

B. New Symptoms after Stability

C. Post-Polio Syndrome

D. Aging with Polio

E. Maintaining Health and Wellness

III. Late Effects of Polio: The Psychosocial

A. Polio: The Experience

B. Models of Disability/Identity Issues

C. Coping with Stress and Physical Changes

D. Relationships: Families and Friends

IV. Management/Treatment Ideas

A. Pain

B. Weakness

C. Fatigue

D. Breathing and Swallowing Problems

E. Depression and Anxiety

F. Trauma

V. VI.

Evaluation of Options within the FamilyProfessional Assistance

A. Family Physician

B. Health Care Specialists

C. Coordination of Care

VII.	Plan for the Future – Don‘t Reinvent the Wheel!
http://www.post-polio.org/edu/healthcare/PostPolioHealthCareAll.pdf
© 2011	Printed with permission from Post-Polio Health International.

PHONE, PEN AND EMAIL PALS – Chat and Share Life and Times with your Peers..

We have suggested this quite a few times in the past but it has never really taken off. We have members who now live in Residential Homes, alone and/or find it increasingly more difficult to get out and about and not everyone has or wants a computer.

Some members who have computers are subscribed to our Members Email Discussion List where much gets discussed. [contact membership@poliosurvivorsnetwork.org.uk] We have had information and questions/discussions on polio, post polio, numbers of survivors, other allied conditions, different pieces of equipment, news articles, incapacity and disability benefits etc and personal good news items. We know how beneficial this can be, so why not help those who do not have computers. Whilst I know our lives are pretty full trying to manage our own PPS lives, can you spare a half hour now and then to chat or write to another member or carer to carer?

Post Polio Syndrome – a challenge of today European Conference, Copenhagen, Denmark, August 31st to September 2nd, 2011European Polio Union [EPU} and the Danish Society of Polio and Accident Victims [PTU]AIMAfter the large polio epidemics in the last century around 700,000 people in Europe are now suffering from polio sequelae. Many survivors have a decreasing functional level because of paralysis, fatigue and pain, and this is a big challenge for polio survivors and the professionals, who are treating them.The European Polio Union wishes with this conference: To give medical and social professionals a possibility to exchange new research resultsand to debate relevant topics on a professional level To give polio survivors a possibility to achieve and exchange new knowledge onassessment, treatment and copingRegistration fee includes participation of the sessions and catering during the conference & free admission for the Welcome reception. Conference Dinner must be paid separately.

BBC Northern Ireland News Item April 21st 2011 New Northern Ireland holiday getaway for disabled is unveiledFrom the Strangford Bay Lodge Website www.strangfordbaylodge.comAs summer approaches, getting away will be just a distant dream for some families as they can be put off leaving home in case their destination can‘t meet the needs of their family. Because if you have a member of the family with a disability, getting away is not as easy as it sounds. But that‘s about to change with the opening of Strangford Bay Lodge. ―Looking after a loved one can be hard and if anyone deserves a holiday or a short break, it‘s the thousands of selfless carers who look after their loved ones full-time, and wouldn‘t have it any other way.” Laura Dunlop.Paul Toner‘s vision is simple: ―I want to create a place where able and disabled people can come together, with no distinguishable differences made for either visitor. There‘s no big blue and white toilet marked ‗disabled‘ here; everybody uses the same luxurious wet rooms. The space and the surroundings are to be a place where you can come and relax, get away from it all knowing all your bathroom and accommodation requirements will be met discreetly.‖Included is N.I. Sixth Changing Place Toilet and the first privately owned one adjacent to the Breakfast Room. Strangford Bay Lodge, Abbacy Road, Ardkeen, Portaferry, Newtownards,BT22 1HHPhone: (028) 4272 8350 Email: strangfordbaylodge@hotmail.co.uk

 To achieve awareness on post-polio issues in the health sector and social services

Congress language will be English. Online registration.www.polioconference.com

REGISTRATION FEE

Before April 1st 2011 After April 1st 2011

Professionals 3000DKK / 400 Euro 3500 DKK / 470 Euro

Polio Survivors 1465 DKK / 195 Euro [£165.09] 1950 DKK / 260 Euro [£220.13]

VENUE CONFERENCE SECRETARIAT

Hotel Crowne Plaza Copenhagen Towers Merete Bertelsen

Ørestads Boulevard 114—188 PTU, Fjeldhammervej 8

DK 2300 København S, Denmark 2610 Rødovre, Denmark

+45 88 77 66 55 +45 3673 9044

www.cpcopenhagentowers.dk [rooms from £104 a night] mbe@ptu.dk

WE’RE STILL HERE

2011 POLIO-WORLD POSTER COMPETITION

Organiser Micki Minner.

You are invited to send us photographs to show your individual history of Polio.

We are looking for three photos: the first showing Polio,

the second depicting Living with Polio and the third Adapting to Post-polio.

We will use the photographs to create an awareness of Post-polio and to show the world that WE‘RE STILL HERE!.

To participate,

send your submission to Mickiminner@msn.com

Three photos and with a description of 50 words of less.

Please put Polio-World in the subject line, your description in the email and attach your photographs.

You can design the whole poster yourself if you wish.

Have a look at the back page to see some examples of last years Posters. Deadline is September 1st 2011.

[Editors Note:- Last years winner was on the front cover of Post Polio Matters December Issue. Any member without a computer who would like to join in, post the information to our main address and we will forward it for you.]

CHANGING PLACES – http://www.changing-places.org/

Each Changing Place Toilet provides:- The right equipment

– a height adjustable adult-sized changing bench

– a tracking hoist system, or mobile hoist if this is not possible.

Enough space

– adequate space in the changing area for the disabled person and up to two carers

– a centrally placed toilet with room either side for the carers

– a screen or curtain to allow the disabled person and carer some privacy.

A safe and clean environment

– wide tear off paper roll to cover the bench

– a large waste bin for disposable pads

– a non-slip floor.

Editor‘s Note:- To date there are 200 in England, with 8 in Lincolnshire, 3 in Lincoln City.

56 in Scotland, 13 in Wales and 6 in Northern Ireland.

A sliced Carrot looks like the human eye. The pupil, iris and radiating lines look just like the human eye… And YES, science now shows carrots greatly enhance blood flow to and function of the eyes.

A Tomato has four chambers and is red. The heart has four chambers and is red. All of the research shows tomatoes are loaded with lycopine and are indeed pure heart and blood food.

Grapes hang in a cluster that has the shape of the heart. Each grape looks like a blood cell and all of the research today shows grapes are also profound heart and blood vitalizing food.

A Walnut looks like a little brain, a left and right hemisphere, upper cerebrums and lower cerebellums. Even the wrinkles or folds on the nut are just like the neo-cortex. We now know walnuts help develop more than three (3) dozen neurontransmitters for brain function.

Kidney Beans actually heal and help maintain kidney function and yes, they look exactly like the human kidneys.

Celery, Bok Choy, Rhubarb and many more look just like bones. These foods specifically target bone strength. Bones are 23% sodium and these foods are 23% sodium. If you don’t have enough sodium in your diet, the body pulls it from the bones, thus making them weak. These foods replenish the skeletal needs of the body.

Avocados, Eggplant and Pears target the health and function of the womb and cervix of the female – they look just like these organs. Today’s research shows that when a woman eats one avocado a week, it balances hormones, sheds unwanted birth weight, and prevents cervical cancers. And how profound is this? It takes exactly nine (9) months to grow an avocado from blossom to ripened fruit. There are over 14,000 photolytic chemical constituents of nutrition in each one of these foods. Modern science has only studied and named about 141 of them.

Figs are full of seeds and hang in twos when they grow. Figs increase the mobility of male sperm and increase the numbers of Sperm as well to overcome male sterility.

Sweet Potatoes look like the pancreas and actually balance the glycemic index of diabetics.

Olives assist the health and function of the ovaries.

Oranges, Grapefruits, and other Citrus fruits look just like the mammary glands of the female and actually assist the health of the breasts and the movement of lymph in and

Onions look like the body’s cells. Today’s research shows onions help clear waste materials from all of the body cells. They even produce tears which wash the epithelial layers of the eyes. A working companion, Garlic, also helps eliminate waste materials and dangerous free radicals from the body.

[Editors Note:- I thought this was interesting and added it to the newsletter then thought I better check it out on the Internet in case this is a Hoax and found ‗Health through God‘s Pharmacy‘ by Maria Treben which has been on the top of the German Best Sellers List for years selling several million copies. Published by Ennsthaler October 1993.

God’s Pharmacy is Amazing.

[It’s been said that God first separated the salt water from the fresh, made dry land, planted a garden, made animals and fish… all before making a human. God made and provided what we’d need before we were born. These foods are best and more powerful when eaten raw. God left us a great clue as to what foods help what part of our body! The Manataka American Indian Council website but Gods Pharmacy is Amazing is on many websites]

Janet Corr, a Life Member, passed away a few weeks ago at the age of 61. Husband Trevor and son Paul travelled to Lincoln to hand over a donation in her memory. On behalf of all our members we thank their family and friends who donated the fantastic sum of £900 towards our work.

I asked them to tell me about Janet.

Her most loved fact was that her birth certificate stated that she was born in the ‗Cock and Pheasant Pub‘ in Bollington in Cheshire.

Janet caught polio when she was six months old but like many other polio survivors got on with her life. She left school and worked as a machinist and then joined ICI as a packer on an assembly line. When they came to her with a Green Card ‗Registered Disabled‘ she told them in no uncertain terms that she did not need or want that!

She met and married Trevor and continued to work for another 13 years till son Paul was born. It was not long before she started looking for other ways of adding a few pennies to the pot. She loved children and became a child minder taking on two sets of twins amongst others. When Paul was a little older she decided to look for other work. On top of looking after her family, she worked as a cleaner in the morning, then dinner lady at lunchtime, more cleaning in the afternoon and took in ironing to do in the evenings! The children at school loved her and she was soon also helping with sewing and making cakes. She was always on the Go.

About 12 years ago Trevor noticed that the number of tasks she could manage each day got less and less, although she never mentioned it.

Two years later he decided it was time to discuss this and she eventually agreed that maybe it was time to visit the doctors for advice because after all ‗I am only 50‘. After an assessment she was awarded High Rate DLA Mobility and found out that PPS existed. She joined our organisation and Trevor said she enjoyed getting the newsletter and all the information we provided which helped her manage her life.

The family had always caravanned with the Caravan Club, organising many rallies. Six years ago they decided to buy a new caravan and travel the country all year round. Trevor remembers one rally in Lancashire where a lady, known for always complaining regardless of where her pitch was fixed, started to complain yet again. Janet sorted it out and came back and frustratingly said ‗I am fed up with all this, I have a good mind to go home…… oh I can‘t because this is our home‘ and laughed.

Paul told me that at a Christmas Rally his mum made a Santa Sack covered with presents, wired it open with coat hangers for him to wear and he won the Fancy Dress competition.

Janet was loving her ‗travelling the country life‘ when a few weeks ago she started to have more headaches and breathing problems was admitted to hospital but sadly passed. Trevor told me, I have lost my best friend, a great cook and organiser. In fact I called her my ‗Tour Operator‘.

Why is it that writers write but fingers don’t fing,

Grocers don’t groce and hammers don’t ham? I

If the plural of tooth is teeth, why isn’t the plural of booth, beeth? One goose, 2 geese. So one moose, 2 meese?

One index, 2 indices?

Doesn’t it seem crazy that you can make amends but not one amend? If you have a bunch of odds and ends and get rid of all but one of them, what do you call it?

MAKING ONE MORE EFFORT TO PUT OVER OUR POINTS

By Verité Reily Collins

Lying on the floor of Chelsea and Westminster Hospital, I thought ―Oh Bxxxxxx – why won‘t they listen to patients?‖ I was frozen (hospital heating wasn‘t working) my feet had lost all feeling, and when I got up to go to the loo, I crashed into drip stand, chairs and assorted NHS furniture.

Five years ago I started to try and get this hospital to listen to simple things that we need: warmth, sensible handling, and padding in right places when we have to lie down – in other words, what we are always being promised ‗we care about patient comfort‘.

Huh! I had been to see the nurse in charge of their Medical Day Unit (MDU) in advance of a fullday infusion. Tried to explain simple things that I would like – a comfortable chair to sit in: ―we don‘t have cushions – bring your own‖ (so much for hygiene). But never thought to say we need warmth. Silly me.

It was a warm early-summer day, but inside the MDU the air-conditioning had broken down five days ago, and was blasting cold air so that even nurses were complaining. I was supplied with three blankets, but new NHS ones are made of slimy cotton, cold to touch, and so heavy they cut off my circulation. When I stood up my feet had no feeling and I crashed on top of drip stand and chairs.

I was picked up, asked if I felt OK, and like an idiot said yes. So was left alone. Shortly after I had a headache, felt woozy and had a dry mouth, so tried to attract attention of nurse – who eventually gave me a cursory glance. Began to feel worried, so asked what could be done, and was crossly told a doctor would be called. Hallelujah!

After doctor had come and given me a thorough examination (luckily no lasting damage as I‘d only hit my thick head!), I took matters into my own hands, phoned down to Estates and Maintenance and told them to get a move on. Then phoned Supplies and got them to send up a heater – and started to warm up. But why Sister in charge of unit hadn‘t thought of keeping a polio patient warm before this all happened, heavens knows. Falling on top of medical equipment is never a good idea. And if the same thing happens to you, it is no use expecting nurses to phone Maintenance – they don‘t have time; you as a patient phoning them is a novelty, so they do something.

The end of the story is that when I asked for a glass of water nurse said to me ―you have had enough attention today‖.

The week before the Government had said it will be consulting with patients as to what we want for NHS – and my local hospital was chosen to start the ball rolling. The government has found that it is earning ‗brownie points‘ for putting on these meetings, so, desperate for popularity, are organising more.

How can we change things?

Well what we did. We dutifully answered the invitation to turn up at Chelsea and Westminster Hospital to meet ‘a Minister’, then endured ten minutes of political speech from Nick Clegg – who turned out to be ‘The Minister‘. He had bought along Paul Burstow (Care Minister) and Prof. Steve Field, a GP.

For anyone who is organising any more of these ‘consultations’, some observations might be useful.

 Make sure questions you are asking concern what is in the Health Bill. This covers a wide

remit, but it helps if you phrase it within ‗Health Bill‘ proposals.

 Don’t involve Governors. They are the great Gods of their hospital and won’t see anything

wrong with it.

 So – ONLY patients – and no more than a dozen. There were over 30 in the room; many

people had come miles and didn’t get a word in.

 And no-one to be allowed a second question until everyone has had a go – one

participant tried to hog the whole meeting.

Afterwards another patient said it would be much more helpful if we had been invited to listen to a half-hour explanation of what the Bill is about, and then when the Minister arrives, we could get straight in to questions. And – there should have been some form of follow-up – many patients have good ideas about where money could be saved, but weren’t given a chance to suggest them.

The Governors got in their plug for the ‘excellent care offered by the hospital, etc’, (to indignant snorts from patients near me), but patients were concerned with what they see is already happening:

 losing nurses and front line staff

 what was going to happen with GPs holding the purse strings – already tests and

operations are being ‘held over’ in Chelsea and Kensington, and the 2-week wait for

cancer patients has been changed to ‘first appointment only’.

 What is happening re ‗care packages‘

Remember, there are more people who survived the effects of the polio virus than most people realise. It could be about 120,000 but there are no official figures so no-one can challenge you. [See Chair‘s comment at end of article, page 16]

Getting a question in

I managed to ask Paul Burstow (Care Minister) why hospitals were being fined for placing patients in a mixed ward, with the fine going to the PCT – so making this just a paper-shuffling exercise. Why didn’t the patient get the money? They had had to put up with the indignity.

Surprised looks all round. No-one had an answer. I was promised someone would look into this. Realising that no record was being kept, I made sure I got hold of a business card from one of the Dept. of Health officials, emailed a copy of my question, and full marks – this afternoon an email popped into my inbox asking me where Mr. Burstow could send his reply.

But you MUST follow up your question. With this ‘informal’ meeting you won’t be guaranteed a reply unless you chase it up yourself.

Worries

Concerns were expressed at units being closed down, and Frontline staff were already being made redundant. That was of great concern to those patients acting as carers to disabled relatives, who needed continuity of care. Burstow did explain the new system of grants and support for the disabled, but sadly there wasn’t time to go in to this.

As the meeting went on it was obvious that GP commissioning was a major concern. Patients had already been told they couldn’t have ‘normal’ procedures; drugs that ‘suited’ them were to be changed for something cheaper, etc.

In future

I looked up Prof. Steve Field, and discovered he was representing NHS Future Forum. This supposedly represents views of staff, patients, GPs, etc. helping to shape the future NHS.

Does it surprise you that amongst the FORTY-FIVE members of this forum, there is only ONE patient representative? So much for consulting with patients. But if you would like to tell them what you think, you can contact them on

http://healthandcare.dh.gov.uk/listening-exercise-how-to-get-involved/

But be warned. The website is cleverly designed, and trying to find how to navigate it is difficult!

Hopefully the Dept. of Health team will take on board that we don’t need ‘protecting’ from reporters covering the event (in fact we were delighted to say what we felt), but we DO need a calm sensible forum where we can put to Ministers just what WE want from the NHS.

And if the idea was for Ministers to learn and take on board what we had to tell them (as Clegg emphasised) I wonder why there was no recording ? I asked for one afterwards and was told this was not being done. Strange.

It’s OUR money that funds NHS – we should have a say and be listened to.

How can YOU be involved?

There is still time to find out if there is an event near you, and apply to go. http://www.regionalvoices.net/2011/04/nhs-future-forum-listening-events-programmehosted-by-regional-voices/

If not, contact your MP and ask them to arrange for a Minister to come to your hospital or patient group

And go armed. Get two or three other invitees together to decide on YOUR most pressing question that needs answering, then work out how you can ask about this subject, but phrasing it differently each time so the Minister doesn’t say they have already answered.

If they are going to ‘use’ patients for a face-saving exercise – it’s up to us to play them at their own game.

Good luck. Verité Reily Collins <verite@greenbee.net>

Editor: www.after-cancer.com; www.healthspanews.com Member Chartered Institute Journalists; the Sports’ Journalists’ Association., & the Association. Guild Health Writers

Sandra Paget, Chair, Comments. [1—Experiences and 2 Polio Numbers] 1. Experiences.

The experiences described above by Verité, and Hilary, Richard & Maureen [on page 18] raise an important issue and one that is often overlooked :- What happens to people when being treated for something other than their neurological condition, including health screening? Quality Requirement (QR 11) of the National Service Framework for Long Term Neurological Conditions (NSF-LTNC) which was published in 2005 with a ten year implementation period covers this aspect of health experience.

QR11 addresses the provision of care in other settings, for example, during treatment for nonneurological health problems. Good planning can ensure that the management of the neurological condition and the person‘s self care are not compromised.[1]

Towards the end of last a year a Systematic Review: Access to Health Care for disabled people by Dr Jeremy Gibson, Royal Derby Hospital and Dr Rory O’Connor, Leeds Institute of Molecular Medicine was published in the Journal of Social Care and Neurodisability. Sixty studies were reviewed, many of which were in the USA, no randomised controlled trials were identified. The review suggests that disabled people are restricted in accessing health care and report less satisfaction with their medical care.[2]

More awareness, more education of clinicians and more research is urgently needed.

Page 17

If you would like an electronic copy of the NSF-LTNC we can send you one on request.

References.

1. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_4105361

2. Systematic Review: Access to Health Care for disabled people, Gibson, J. and O’Connor R.,

2. Polio Numbers.

Trying to give an exact figure of how many polio survivors there are living in the UK who are experiencing PPS seems difficult. The Health Protection Agency (HPA) has published all notifications of cases of polio in the UK between 1912 – 20081. The information given by NHS Choices2 is that Post Polio Syndrome (PPS) affects approximately 20% – 66% of people who have had polio with symptoms developing between 10 and 40 years after the initial illness. Symptoms can take an average of 30 years to develop.

Taking the total HPA notifications between 1920 – 1998, the year of the last notifications given, of 65,658 and using the NHS Choices’ figure that PPS affects approximately 20% – 66% of polio survivors there may be 13,131 – 43,334 people experiencing PPS today.

In a paper published online in July 2010 it was suggested that 15% – 85% of polio survivors may go on to develop PPS3. Using these percentages and based on the HPA notifications between 1920 – 1998 there may be between 9,848 – 55,809 people experiencing PPS today.

Some of the potential PPS population are fairly young. For example those who caught polio in the 1959 epidemic, aged 1 are, today 53 years of age. Our youngest member is about 13 years of age. At the same time our oldest members are over 80. And we have within our membership 7 U.K. members who caught polio abroad, who may not be included in the HPA notifications. It is also possible that there are polio survivors among the UK’s ethnic communities that are not included in the HPA notifications because they were not living here when they caught polio but may go on to develop PPS.

References: all available online, Ref. 3 is an Open Access free to download document. 1.http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/Polio/EpidemiologicalData/ 2. http://www.nhs.uk/conditions/Polio-and-post-polio-syndrome-/Pages/Introduction.aspx

3. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909497/

Sandra Paget, Chair.

Polio Survivors – your experiences are valuable.

Please send info for this page by email or letter. We know that may be difficult for a few members who are welcome to ring. Deadline for next issue is June 15th.

1. Richard was rushed into hospital with a suspected intestine blockage one evening in mid February and despite all our documents, knowledge and experience the five days were a nightmare. Ensure you have ready any medical equipment and spares you might need, copies of your What you Need to Know about Me form completed, any medical reports that contain any valuable information about your conditions, copies of your prescriptions, a few days supply of the actual tablets, and phone numbers of your health professionals and any support group/help that you might need. I expected some lack of knowledge about Polio, PPS, Bi-level ventilators and masks but not almost NIL. Richard also has Parkinsons and there was a similar lack of knowledge except when the Neurologist was on the ward on two fifteen minute occasions. One doctor arrived round the curtain saying to me ‗I have come to see your father… Because to him a Parkinsons patient is usually an elderly person. He was a bit taken aback when I said I was his wife and he is younger than me.

If your physical limitations before or with the current reason for your admission are such that you need help throughout the day, e.g. not being able to move very much and operate the call system, your voice level going so low you cannot call for help, etc. then it is advisable to have someone with you at all times to remove that added stress level. I stayed with Richard the whole time and was able to provide valuable information to the constantly changing of staff, twice preventing the wrong treatment, and help him with needs as they occurred throughout the day and night. It was exhausting, and I did not think to ring the Parkinsons Support Group till he was improving on the fourth day. The relief of talking to someone who understood what we were going through and was able to offer some help was great. We now have that number added on our WYKTN form and on our mobile phone. I do not regret one minute of helping Richard but those five days took their toll and lowered my available energy levels. If you have family or support workers who know you well enough to take some shifts then it would be a good idea to go through all this with them now just in case.

2. Maureen, a member rang and told me that she had recently gone for a blood test at a hospital and the nurse taking the sample had told her to move her arm. She explained that she could not as she had polio. The response was ‗Why on earth did you not get the vaccine‘. She explained she caught polio in 1947 and the vaccine came out in 1955!!

3. Zsuzsanna:- I often slide down to the bottom of the bed because my left ankle has been

fixed and if I try to sleep on my stomach it is uncomfortable so I stick my foot off the end. As I am only 5ft something (depending which leg I stand on!) my husband often says to me ‘What are doing half way down the bed!’

Robin replies:- I have a foam mattress and to stop sliding down I put a thick folded

bolster under the mattress to make a sort of traffic bump under the upper thighs. I have a foam wedge at the head of the bed so I sleep propped up. I also have a monkey pole and a pair of metal loops standing up either side of the bed about level with the bump. These I have covered in pillowcases and folded pillows, mostly to stop me rolling out of bed if I turn the wrong way at the edge of the wedge. All seems to work well.

Wendy replied:- before we had the electric beds I also had a problem with sliding down the bed and the OT provided me with a foot plate and I put two thick pieces of foam on it. I still slid down a bit as I am only 5’2″ but in the least not out of the bed and it was soft on my feet. At the time I thought of having a monkey pole but after trying one, it was not for me.

MEMBERS. We need more items for page/s like this.

Management Committee [Trustees]

Chair – Sandra Paget – sandra.paget@poliosurvivorsnetwork.org.uk Vice Chair – James [Jim] Pullin – jim.pullin@poliosurvivorsnetwork.org.uk Secretary – Glenna Tomlin – glenna.tomlin@poliosurvivorsnetwork.org.uk

Treasurer – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Committee Members

Gillian Bryan – Gilltcs@aol.com [Co-opted to the Committee]

Operations Team

Membership Secretary – Hilary Boone – membership@poliosurvivorsnetwork.org.uk Phone and Email Enquiries – Hilary Boone – info@poliosurvivorsnetwork.org.uk – Administrative Support – Gillian Bryan – gillian.bryan@poliosurvivorsnetwork.org.uk Website Administration – Dave Eate – webadmin@poliosurvivorsnetwork.org.uk

[Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors

Friend/Supporter. If you would like to support the Polio Survivors Network you can do so by making a yearly donation of your choice.

You will receive a yearly update of our activities and be invited to our AGM.

Membership Fees

Individual – £ 12.50 per year

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo. Associate Membership – £ 10.00 per year

Yearly fees can be paid by Standing Order.

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet.

Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us.

Donations

Donations, small or large, towards our work will always be gratefully received.

Val Scrivener is supporting us by making photo greetings cards for you to purchase

 Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

The Gift Aid scheme. Charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer. Between 6 April 2008 and 5 April 2011, the government will also give UK charities an extra 3% of all eligible donations. 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%).

NEW

© Polio Survivors Network – Volume 7, Issue 4 – April 2011	Page 20
P.O. Box 954, Lincoln, LN5 5ER, U.K.  01522 888601because WE’RE STILL HERE!Website – www.poliosurvivorsnetwork.org.ukEmail – info@poliosurvivorsnetwork.org.ukRegistered Charity No. 1064177
THREE ENTRIES FROM THE 2010 POLIO WORLD PPS POSTER COMPETION – WE’RE STILL HERE.https://picasaweb.google.com/110818555619380325259/PostPolio#
© PHOTO CARDS by MEMBER VAL SCRIVENER Sold in aid of POLIO SURVIVORS NETWORKPack of 5 – £3.95 inc. P & P.Order by writing to PSN Emailing johnval.scrivener412@btinternet.comOr ringing Val Direct on 01234 346 397

Charlie Minner passed over on the evening of 12th May 2011. Our thoughts go to his wife, Polio Survivor, Micki Minner Polio World‘s 2011 Polio Poster Competition Organiser.

Help tell Our Story by entering Information – page 11.

Post Polio Matters Volume 7 Issue 4 Read More »

Post Polio Matters Volume 7 Issue 3

JANUARY 2011

The Polio Survivors Network Newsletter – Volume 7, Issue 3

n.b. Volumes 1 to 6 published under the name LincPIN.

www.poliosurvivorsnetwork.org.uk

Printed by Elpeeko Ltd., Lincoln 01522 512111

It does exist!

World Health Organisation Code for

POST-POLIO SYNDROME is

G 14

and

SUPPORTING PHI’S YEARLY CAMPAIGN

The Late Effects of Polio

encompasses anything happening after having POLIO that is affecting how the polio survivor is managing.

Post Polio Newsletter Dec 2010 Vol. 21 No. 4 Post Polio Network

of Western Australia

www.upnaway.com/ ~poliowa

This issue is dedicated to the memory of Polio Survivor and former Trustee

Jean Tapper

April 12th 1929 ~ January 8th 2011

PSN AGM Saturday 18th June 2011

Venue:- The Pinsent Mason Suite 2, The MAC Birmingham, Canon Hill Park, Birmingham B12 9QH 1.p.m. To 5 p.m.

The Polio vaccine was developed by Jonas Salk,

and announced to the world by Salk on April 12th 1955.

Jean‘s 26th birthday.

I am only one, but still I am one

I cannot do everything,

but still I can do something, And because I cannot do everything I will not refuse to do something I can do

EUROPEAN CONFERENCE ON POLIO – Page 10

Poliovirus, which is found in three similar forms, is designed to attack a given person only once. It makes its offspring and then is off to the next person. In most cases, poliovirus causes a simple flu-like disease as it attacks cells in the digestive system. This infection is rapidly cleared up by the immune system. But in about 1 in 100 cases, the virus spreads to the nerve cells that control muscle motion, causing paralysis–poliomyelitis– as the nerve cells are infected.

Page 2

Showground, Peterboroughwww.mobility roadshow.co.uk

New Members and Donations received.

Contents

Page 2 Contents, New members and Donations

Page 3 Editorial & Trustee Meeting Dates.

Page 4 Message from the Chair, Sandra Paget

Page 5 Annual General Meeting.

Page 6 – 10 2 articles by Life Member Edward Bollenbach,

Professor Emeritus in Biology

1. Where is the research that will matter.

2. Biomedical Research Is Accelerating. Why Don’t We See An Acceleration of Cures?

Page 10 European Polio Conference.

Cøpenhagen, Denmark, August 31st to September 2nd 2011

Page 11 Beware uncaring doctors if you need an anaesthetic

by Life Member Verité Reilly-Collins, Travel and Health Writer.

Page 13 Summary of Anesthesia Issues for the Post-Polio Patient

Selma H. Calmes, Chairman and Professor, (retired) Dept. of Anesthesiology, UCLA, California. Selma is a Polio Survivor.

Page 14 – 17 Postpolio Syndrome and Anesthesia by David A. Lambert, M.D., et al Anesthesiology 2005; 103:638

Page 18 Polio Survivors Sharing Info.

[Send bits for this page for next issue by March 15th 2011]

Page 19 Details about our organization.

Back Page Photo Cards by Member Val Scrivener to raise funds for Polio Survivors Network.

This issue of Post Polio MattersAGM Research European Polio Conference Anaesthesia Sharing Info

Hydrate for Health Sponsor Post Polio Matters

NAIDEX NEC BIRMINGHAM April 5, 6, 7 2011. Disability Equipment.

www.naidex.co.uk

MOBILITY ROADSHOW

June 30th to July 2nd 2011 East of England We welcome new members Janet Whitworth & Helen Brown

Thank you to the following for donations given towards our work. Rose Fenton, Peter Button, Val Scrivener, Pat Stokes-Smith Berenice Bowles, Joanne Curtis, Margaret Lamb, Nicholas Harvey,

J. Tavener, Steve Clynch, Tony Fuller, Winifred Hyam, B. Smith,

Vic Gabriel, Yvonne Grosse, Vivien Holland, Hilary Boone,

Richard Boone, Janet Whitworth and Bob Price Donation from Cadbury of £500

Anonymous donation of £100. Total since last newsletter is £965.90

We have no paid employees. We would like to recognise and thank the following for so generously donating their time. The Trustees, Dave Eate, Chris Salter, Barry & Olivia Branston, Bob Price and Anne Bennett.

Donations & offers of time towards our work are always welcome.

Editorial by Hilary Boone

Polio Survivors Network – Meeting information

The next Trustees Meeting is being held in Birmingham on

Saturday 7th May, 2011

Annual General Meeting is on Saturday 18th June 2011

At the MAC, Canon Hill Park, Birmingham, B12 9QH, from 1pm to 5pm.

www.macarts.co.uk/plan-your-visit/getting-here/

If you have any matters for our attention at our meetings please get in touch via info@poliosurvivorsnetwork.org.uk

or Tel: 01522 888601 or write to us at Polio Survivors Network PO Box 954, Lincoln LN5 5ER

Firstly I must apologise for the delay in providing this issue due to my laptop going in for repair for 12 days and having to take time out to deal with problems thrown at us by the complicated procedures Lincolnshire Social Services have in place for Personal Budgets. It is more than 8 months now since we started the assessment procedure and still we have unresolved issues to deal with. It has been a total nightmare but we are now into the fifth week of employing two support workers and at last we can see the tunnel!

Secondly, I am sorry to have to let you know the sad news of the passing of two or our members. Frank Knights who lived in the south of England and Jean Tapper from Lincolnshire. Jean was a Trustee of the Lincolnshire Post Polio Network in our early years. The poem was one she oft quoted and was read out at her funeral. I remember her as a very strong willed, determined, polio survivor and Lynn Hobday and I heard at her funeral that she had served on many Village committees and recently received a local award for her volunteering. About ten years ago I remember her telling me how disappointed she was that she could no longer call the numbers at Bingo because her voice was now too soft and she ran out of breath. Two months later she rang me to say, ‗I now have a new gizmo that brings my whispers up to normal voice level so am back to calling the Bingo‘. Did you notice the wheelchair she used in the late 90‘s had the large wheels at the front, one small wheel at the back with a cane seat? [see picture front page]

Sponsorship. Do you know any company or other organisation who would sponsor our newsletters by paying £50 for a year‘s mention? [4 issues] Hydrate for Health are our first sponsor. Two more members have let me know they have purchased one of these and how much easier it is to have a drink at night.

Membership. Members paying yearly can pay by Standing Order or by cheque. To save costs on printing and postage your renewal date appears on the address label of the newsletter and will be updated when payment received. Please send sae if you require a receipt. A renewal form will be included with the last newsletter of your current years membership. Life Members. We included another Contact Information Update Sheet with the last issue but only two more members returned them, 5 in total. It really would help us if you would write, ring or email me to ensure that our records are up to date.

Medical words used in articles. If you are unable to look up the definition of any term used and the article is relevant to issues you are experiencing then please get in touch and we will provide you with the definition. I will compile a list of the most used terms for the next newsletter.

‘The Late Effects of Polio encompasses anything happening after having POLIO that is affecting how the polio survivor is managing‘ I saw this definition also printed on our front page in the Post Polio Network of Western Australia‘s Post Polio Newsletter, December 2010, V.21 No. 4. Do you think that this statement covers the symptoms and problems you raise that you are told are not Post Polio Syndrome?

Photo Cards by Member Val Scrivener [See back page] has added some more photos to the cards she is making and selling supporting our Network. Choose any five photos to make up packs of 5 and maybe you could sell a pack or two to your family and friends and help towards the costs of our work.

Medical Terms in articles. Some articles have a few medical terms that may make it difficult for you to understand all of the article. These are provided in case you have related issues so that you may share information with health professionals who may not be aware of the information.

I am hoping you all got through the snow on snow winter, enjoyed Christmas, New Year, Burn’s Night, remembered all those old acquaintances, Chinese New Year of the Rabbit and, by the time you read this, Valentines’ Day!

Since our last Newsletter we have a new Co-opted Committee Member, Gillian Bryan, who has attended her first Trustees’ Meeting and she brings with her a life-time’s experience and knowledge of business administration – her skills are much welcomed and much needed by our Polio Survivors Network.

We had a good response by members to our survey and the full report will be available at the AGM which, this year, will be held at the Midland Arts Centre in Birmingham. Early information indicates that of those who returned questionnaires Polio Survivors achieve quite a few years lived beyond three score years and ten! Well done PSN people.

The consultation for Reform of Disability Living Allowance (DLA) ends on the 14th February, 2011. Information about this has been posted on the Members Email List, including the petition to recall the Consultation and calling for the Minister for Disabled People, Maria Miller, to be sacked. We only really have two channels of communication with which to raise issues with you; Post Polio Matters and the Members’ Email List. We do not have more resources to raise issues with you at the moment. The DLA Consultation began after the last newsletter and ends as this one goes out. We will obtain a copy of the Report of the Consultation and, if an opportunity arises, respond to it. We will do our utmost to keep you informed.

PSN is a member of Rare Disease UK and Rare Disease Day is on 28th February with events happening in England, Wales, Scotland and Northern Ireland.

For more information contact RDUK at www.raredisease.org.uk or The Secretariat, Rare Disease UK,

Unit 4D, Leroy House, 436 Essex Road, N1 3QP, UK.  

Email :- info@raredisease.org.uk

PSN has contributed to the RDUK’s draft strategy for Rare Diseases and as soon as this is published we will let you all know. Well, we’re on our way to Spring and, fingers crossed, sunny days ahead. Oh and as well as the 1st March being my wedding anniversary it is also St. David’s Day so to our Welsh Members:

Happy St. David‘s Day ….. DYDD DEWI SANT HAPUS IAWN

Sandra

sandra.paget@poliosurvivorsnetwork.org.uk

Tel: 01494 729373 Mob: 0777 294 0905

Message from the Chair

“To catch the reader’s attention, place an interesting sentence or quote from the story here.”PSN SurveyGood response

Rare Disease UK [RDUK]020 7704 3141Fax020 7359 1447

Member Gillian Bryan Co-opted to PSN Committee

Cadbury donates £500 towards our work.

SATURDAY JUNE 18TH 2011

Pinsent Mason Suite 2,

The MAC Birmingham, [Midlands Arts Centre] Canon Hill Park,

Birmingham B12 9QH 1.p.m. To 5 p.m.

Bridges Café Bar

Offer a tempting selection including daily specials, breakfast: hot and cold sandwiches,

pastries, delicious cakes, main meals and jacket potatoes.

9am- 11pm (Hot Food available 9am – 8.30pm, snacks available until 11pm)

Arrive early and have a snack or lunch in the Cafe Bar Room opens at 1.00 p.m. AGM commences at 1.10 p.m.

Followed by Speaker, Tea Break and Raffle, Speaker and Q&A session To ensure the room chosen will accommodate all attendees

If you think you might come please return the enclosed slip. THANKYOU More information in the next newsletter

MAC is located in

Cannon Hill Park, Birmingham,

opposite the

County Cricket Ground on Edgbaston Road, off Pershore Road (A441) and Bristol Road. (A38). Buses

1, 35, 45, 47, 62 and 63.

Two articles by Member Edward Bollenbach, Professor Emeritus in Biology. Article 1. Where Is The Research That Will Matter?

I have been wondering if we will have the time to see breakthroughs in research that will benefit polio survivors. It seems like there is nothing new to read. Does that mean we are adrift with nothing of value in the pipeline for us?

We know the cause of the damage we now suffer. Clearly, it is a loss of nerve contact with muscles. This came about because when we recovered from acute polio compensation from the damage came in the form of new growing connections between surviving nerve and muscle. This was called “Compensation”. The loss of nerve muscle connections was compensated for by live fiber sprouting from surviving nerves. Now we have decompensated. Those connections are gone and more are going and the muscle targets are in big trouble or have atrophied.

Most people with old polio lament that there is a dearth of meaningful research in the direct area of post-polio syndrome to address this loss, and many believe that such targeted research is our only hope for future advances to improve our lives. I have a different take on this and feel that we may be lucky enough to enjoy new functionality in our future. History has shown that new understanding of specific medical problems, more often than not, comes from research targeted toward other problems, sometimes in areas not even related to the disease which is helped, but nonetheless apply and are beneficial even thought this was unforeseen in the original research.

Historically, one of the most famous instances of a new application from research which benefits something else unforeseen arose from an experiment by Louis Pasteur. In the last years of the 19th century everyone was trying to find the cause of various diseases in animals and man by isolating bacteria and proving that the isolate caused a particular disease. Robert Koch in Germany first isolated the anthrax bacterium and showed that when it was inoculated into healthy cattle they developed anthrax. A big problem in France at this time was chicken cholera, which could spread through chicken farms and decimate populations of chickens in these facilities.

Pasteur decided he would isolate the bacterium that caused chicken cholera by drawing blood and feces and separating bacterial isolates into single cultures of bacteria. Then, he would test each type by inoculating healthy chickens. He meticulously used Robert Koch’s earlier published procedures for doing this and in a short time he came up with a candidate bacterium. Alone in his basement Pasteur would inoculate healthy chickens with his pure bacterial type and the chickens would develop cholera. He felt he had nailed down this problem and called other microbiologists and veterinarians to view his accomplishment. But he used older growths of his pure candidate bacterium and some of his chickens did not get sick. He went home and thought about it and decided he needed to use newer fresh bacterial growths to cause the disease. He called for another demonstration, the story goes, and this time he used all new growths of his candidate bacterium for chicken cholera. But another problem occurred. The problem this time was that some of the chickens he inoculated with his new growths he had also earlier inoculated with his old growths. Guess what happened? Some chickens didn’t get sick and the one’s that didn’t were the ones inoculated earlier with old cultures. Pasteur didn’t know why this happened at first but he soon found that the chickens that didn’t get sick were previously inoculated with the old cultures. He had accidentally vaccinated them against a disease where he had isolated and grown the cause, and this step forward allowed for an explosion of vaccines that protect us today from a host of diseases from influenza to polio. Right now there are over 300 new vaccines pending to protect against things like Alzheimer’s and certain cancers as well as other problems. This was an enormous advance in bio medicine but what started it was Pasteur looking for something else entirely: the cause of chicken cholera.

Some of you may have heard of Moore’s law. It states that the number of transistors that can be placed in an integrated circuit has doubled every two years for the last half century. We don’t know when this will stop although we are approaching limits. The rate of new knowledge

generated in biomedicine is even faster than that for computers . This is due in part to improvements in computer technology (Moore’s Law) but it is also due to other scientific factors relating to increases in knowledge which feed even faster increases in meaningful research and technological applications.

The rate of progress we now see in bio medicine, as well as in computer science, have resulted in an exponential increase in biomedical research to the point that I see new things every day that may help us. Just think of Pasteur’s fumbling around giving us decades more in life expectancy just by isolating disease bacteria and accidentally weakening them to produce vaccines. Then think about how many experiments are occurring today with our increased knowledge and how many of them can surprise us with real help as our research knowledge doubles in less than two years, faster than it does with Moore’s law for computers.

Let me make this more concrete. In the 1970’s gene sequencing was expensive and very slow. I remember sitting in a Genetics seminar at Cold Spring Harbor on Long Island, with my graduate school mentors, listening to scientists talk about a project to sequence and decode the human genome. That is, to find every letter in the code of life that makes us human. Many thought this would be an expensive and inordinately long process. But the speed at which sequencing genes increased, and the expense of doing it decreased over the years so rapidly that this rate of biomedical progress in genetics is today astounding.

Back when the human genome research project began, when geneticists were trying to unmask our entire human genetic map the cost was about 3 billion dollars. Today it is about $5000. In the next few years it will be under $1000 and we will be able to map our individual genes. This is astonishing and illustrates what is true in many areas of biomedicine today. We may even be able to replace defective genes soon.

According to a lecture in 2004 on the ―Pace of Biotechnology‖ by Michio Kachu http:// www.physicspost.com/science-article-197.html , the rate at which we can now sequence genes doubles and decreases in cost by more than a half every year. Here are some of Kachu’s other predictions: Soon we will be able to grow organs like the liver and pancreas in a lab. Producing a pancreas may cure diabetes. Replacing defective genes may cure diabetes too as well as many other genetic diseases. We expect advances in cloning, aging research, and neurology that will astound and surprise us in the next few years. Much of it will be applicable to the polio problems we now face. Neurons are now being produced from a person’s own cells and we will be able to use them in spinal cord damage and brain damage. This will make possible the replacement of neurons where there is a deficit. These predictions point to the fact that we are at a time when miraculous cures for all kinds of disorders are at our doorstep.

Here are some recent advances in the science news:

A study of the blue green algae spirulina was shown, when used as a supplement, to delay motor neuron degeneration in ALS. This study was published in ―The Open Tissue Engineering and Regenerative Medicine Journal‖ (3:36-41). At Stanford University, a study of zebra-fish showed that the number of synapses (nerve connections to muscle) varied between night and day. This article appeared in the October 2010 issue of the journal Neuron. It is clear, within the article, that chemical instigators can be isolated that will spur neuronal growth. A UC Irvine study is the first to demonstrate that human neural stem cells can restore mobility in cases of chronic spinal cord injury, suggesting the prospect of treating a much broader population of patients than traumatically injured spinal patients. (www.medicalnewstoday.com/articles/198573.php)

Microtubules within motor neurons generate the end fibers we have lost due to polio. In ―Current Biology, 09 December 2010‖ a new biochemical named kinesin was discovered which can allow scientists to direct the growth of microtubules through damaged tissue to target muscles. This could result in directed growth of arrays of microtubules with the proper ends facing muscle surfaces to allow contact and connection to weakened or newly grown muscles.

In the Journal of Neuroscience, September 29, 2010 an article titled: ―New Drug Treatment Triggers Sodium Ions To Regrow Nerves And Muscle; Could Extend Treatment Window For Acute Injuries‖ has obvious applications to old polio, since both muscle and nerve would need to be regrown. In another article entitled ‗Stem Cells to Treat Muscular Dystrophies – Where are we?‘ Neuromuscular Disorders ,Volume 21, Issue 1 , January 2011, Pages 4 -12, as current as can be, the authors review criteria for using stem cells to replace damaged muscle in muscular dystrophy, but there is no reason why these techniques and therapeutic recommendations could not be used in old polio. And remember the fight over using embryonic stem cells? In the past year it has become possible to routinely coax human skin cells and transform them into neurons and other cell types. This makes the embryonic stem cell ethics moot.

The examples and discussion above is a prelude to some of the advances I see, that were targeted for different purposes within bio medicine, and in which important applications are likely to emerge for people with old polio.

In other words, it is not as depressing as is generally thought regarding biotechnological applications to old polio. If all the money allocated toward the research described above were allocated solely to polio I would be surprised if we found ourselves with as much application directly to old polio damage. We would run out of useful projects to try because our knowledge base would fall behind the amount of money we would have to spend. Many discoveries have proven to be accidental. The more research the more these serendipitous accidents will occur. It is the volume of biomedical research that matters, and the increasing pace of discoveries. The real question is how fast and safe is it going to be to do trials on humans and how expensive will these treatments be. And above all, will we just miss these rapidly developing bio-medically relevant applications because we were born just a tad too early. At the increasing rate of discovery and application it is not unrealistic to think positively.

As I was writing this a new paper appeared on my computer screen: The Breast cancer drug Taxol helps regeneration of neurons through scar tissue. http://www.medicalnewstoday.com/ articles/215049.php The pace just blows me away.

Article 2. Biomedical Research Is Accelerating. Why Don’t We See An Acceleration of Cures?

In the previous article I argued that the pace of biomedical research is so rapid that specific research on PPS might be too narrow and that we are likely to discover new treatments of value from the expansive research happening right now. And, the pace is accelerating at more than double the rate of discoveries every two years. So, the cry for more PPS centered research, especially in this time of austerity, may not be productive for us after all. If these arguments are sound most readers should breathe a sigh of relief that there will be new drugs and new medical devices and new procedures that can help us. If we take stem cell research, for example, experts in this field say that for the first time cures for diabetes, paralysis, and blindness are in sight. Two of the aforementioned maladies have a large impact on the health of those of us with PPS. So what is the problem? If all this is in sight why can’t we see them coming? I think our advocacy for research may be misplaced because the research, no matter how fast it proceeds, still entails waiting for 10 to 15 years to see marketing and application. This is too slow and , surprisingly, the pace of bringing treatments to market hasn’t changed much in a century according to ―Biomedical Research and Health Advances‖ by Moses and Martin in the January 10th 2011 edition of the ―New England Journal of Medicine‖(1). This is a big problem for us. What exactly is the problem and why can’t cures and treatments make it to the patient faster?

I want to concentrate on one of the problems we have in the United States (which has enjoyed a history of biomedical research and discovery that made it the world’s primary source of new drugs and treatments). Now, however, Europe, Israel, and Indonesia are on a pace that will outstrip the US in discovery and treatment if changes in the US are not made. Later, I will add

other problems we share in all countries that stifle the provision of new medicine to patients. One of the big problems here are patents on scientific research findings, shown in an article in Red Orbit news on January 10, 2011. (2)

Patents on intellectual property interfere directly with the way science works to correct itself and move on to more complete understanding. Earlier work must be available for scientists to test and improve upon. But patents by scientists, or the companies they work for, hoping to ―cash in big‖ restricts others, and sometimes even themselves, to use known information and build on successful precedent.

Bob Lanza worked for a biotech firm called Geron for several years coaxing stem cells to produce beta cells that produce insulin. He was using them to cure animals with diabetes. He currently works for Advanced Cell Technology (ACT) but since Geron holds patents on the intellectual property he amassed on stem cell treatment for diabetes, during his work for the company, he is unable to use the results of his life’s work because Geron holds the intellectual property rights to it and now he works not for Geron but for ACT. Unless he can secure that information he will be stymied in using his knowledge base to advance work toward curing diabetes in human beings. Geron is currently starting trials with stem cells on spinal cord injury and Advanced Cell technology is starting work on the blinding eye disease of macular degeneration with stem cell intervention. Both of those ongoing projects are likely to suffer setbacks because other entities hold intellectual property rights that may benefit these current programs. Even though both companies secure intellectual property rights and have to jump through hoops to get information to give them a better chance of success. Yet this practice continues.

We are at a point in scientific biomedical research where we have to find new ways about how intellectual property is patented and how improved sharing of information between the public sector, the private sector, and foundations can be done. If we don’t prioritize this, we, the patients, will be the ones who will suffer.

The New England Journal of Medicine suggests that patenting be deferred in return for ―new funding and greater latitude to conduct high risk research‖. The research entities would immediately put new discoveries into the public domain to be built upon by new research. This would also allow new laboratories to hire new talent as researchers will not fear that by changing companies they will lose their life’s work due to patents on intellectual property (1). This problem has been sidestepped in Europe and other countries conducting stem cell research. In Europe scientists are not allowed to file patents on scientific research because of a 2008 ruling which declared such patents would upset public order. Currently, the Hinxton Group, a joint US-British team that works to address these problems has recommended that two open databases be created. The first database would be for stem cell lines that are in use worldwide, the second would keep intellectual property rights so that scientists could openly access them. Right now, it is interesting to note that more research in these fields is occurring in private companies than governmental entities and this is going to continue through this austerity period. Government has a role in helping private companies change to better serve the public good.

There are several other problems that gum up the speed and delivery of medicine of high clinical value. Companies often do research and expound on discoveries through ―rose colored glasses‖ exaggerating the effectiveness or safety of a discovery. We need better information on the effectiveness of new drugs and new treatments so that comparative studies can be done, preferably by uninterested parties like private foundations or academic laboratories.

Teaching hospitals, which do clinical trials, should have those trials done by freestanding institutes or unconnected academic centers so that the trials will have more clinical value and be more easily shared with other researchers. Governments and Foundations should develop priority financing of new scientific approaches to problems and also for models of collaboration between entities in the creation of new biomedical knowledge.

The establishment of Biomedical Trusts that individuals or companies can donate to for high priority diseases, and get tax credits for doing so, could promote more open research. States and governments could issue bonds for such research. We must put the ―Care‖ back in healthcare at the discovery stage so that commercial issues do not slow progress by prioritizing profit interests above patient interests.

Biomedical Research produces new jobs, enhances trade between countries, and improves the Gross National Product of countries. However, as discussed above, it will take years, probably even decades to get our biomedical house in order so that effective discoveries can be expedited and provided to human beings who suffer from real diseases. When this aspect of the biomedical/commercial intellectual property rights/ social order can be effectively restructured, we will see good treatments get to market in a shorter period than the 10 to 15 years we have been stuck with for much too long. There is a lot of work ahead. Instead of advocating for specific research on specific diseases we should advocate to government and industry to work out better processes and procedures to get us where we want to be faster.

Sources

1. ―Biomedical Research and Health Advances‖ by Moses and Martin in the January 10th 2011 edition of the ―New England Journal of Medicine‖

2. www.redorbit.com/news/health/1984948/ us_patents_on_stem_cell_research_hindering_progress/index.html

Post Polio Syndrome – a challenge of today

European Conference, Copenhagen, Denmark, August 31st to September 2nd, 2011

European Polio Union [EPU} and the Danish Society of Polio and Accident Victims [PTU]

AIM

After the large polio epidemics in the last century around 700,000 people in Europe are now suffering from polio sequelae. Many survivors have a decreasing functional level because of paralysis, fatigue and pain, and this is a big challenge for polio survivors and the professionals, who are treating them.

The European Polio Union wishes with this conference:

 To give medical and social professionals a possibility to exchange new research results and

to debate relevant topics on a professional level

 To give polio survivors a possibility to achieve and exchange new knowledge on

assessment, treatment and coping

	To achieve awareness on post-polio issues in the health sector and social services
Congress language will be English. Online registration.www.polioconference.com
REGISTRATION FEE
Before April 1st 2011 3000DKK / 400 Euro 1465 DKK / 195 Euro [£165.09]	After April 1st 20113500 DKK / 470 Euro1950 DKK / 260 Euro [£220.13]
Professionals Polio Survivors

Registration fee includes participation of the sessions and catering during the conference & free admission for the Welcome reception. Conference Dinner must be paid separately.

VENUE	CONFERENCE SECRETARIAT
Hotel Crowne Plaza Copenhagen Towers Ørestads Boulevard 114—188 DK 2300 København S, Denmark +45 88 77 66 55 www.cpcopenhagentowers.dk [rooms from £104 a night]	Merete BertelsenPTU, Fjeldhammervej 82610 Rødovre, Denmark+45 3673 9044mbe@ptu.dk

BEWARE UNCARING DOCTORS IF YOU NEED AN ANAESTHETIC By Life Member Verité Reilly-Collins, Travel and Health Writer.

If anyone was a patient at the Royal National Orthopaedic, Stanmore, in the 1956, they might remember I was the 14 year old nuisance who was in the swimming pool all afternoon. J.I.P. James was my surgeon, and Sister used to freak out as I bantered with him. He would pull my plait as it hung through the bars of my bed – I often faced ‗wrong way‘ so I could see more of what was going on in the ward.

We would have long conversations, when all other patients treated him with awe. I seriously believe that this helped me walk out of the hospital, when I had been told ―you will never walk again‖. But a combination of my sheer blxxxdy mindedness and his interest in this appalling patient got me back on my feet.

So I left Stanmore, and got on with life. I couldn‘t swing from a trapeze any longer, nor climb trees, but apart from that I had few problems – until years later I developed breast cancer.

So it was back to hospital, where I learnt that many doctors don‘t know how to look after us. It‘s not funny – in fact it could be very dangerous.

So anyone reading this, you MUST tell your doctors and other health professionals that you had polio, especially if you have to have an anaesthetic. Not many British doctors have any idea how to treat us (is this familiar?), but having an anaesthetic is fraught with potential problems. Add post-polio to the equation, and I found out this is a recipe for potential disaster.

When I talked over my options with my cancer surgeon, I did mention that I had had polio, but didn‘t make a big fuss about this. I also told the anaesthetist – but as she was not the slightest bit interested, I assumed polio was no great problem. She was one of the team from the Royal Marsden; I thought they had a good reputation anyway, so she would know what to do.

Waking up after my op, there was no-one in the room with me. ―Bother‖ I thought, ―I didn‘t have the op‖, and started to get up off the trolley to find out what was happening. The trolley shot across the room, crashed into spare trolleys, and I was left hanging off the edge.

In burst a nurse, ―you are meant to be asleep‖ she shouted. No apology, it was me that apologised to them – fool that I was. Back upstairs, I felt awful. Convinced this was what cancer was all about, I tried to stay in for longer – but you know the health service: I was sent home and spent a week in bed, too weak to move.

Gradually things improved, and it wasn‘t until two years later I happened to read Dr. Spencer‘s paper on anaesthesia for polio patients, and I realised how badly I had been treated. Every problem I had had – from taking days to get warm again (in the middle of July) and stop shivering, to being unable to move from my bed – all were mentioned in the paper as problems if polio patients had the wrong anaesthesia.

So ever since I have tried to ensure that hospitals take note and treat me properly – not easy, in the NHS culture.

Next problem happened with an MRI scan. By this time I was wary, asked how long it would take, and was airily told, ―about 90 minutes‖. I asked what I would have to lie on, and was told the usual metal base. So I politely sent an email saying that I would need some form of pain relief to be able to lie that long on such an uncomfortable surface. The department confirmed they had received my email, so all was OK.

Until the day of the procedure, when a doctor swept in to tell me I didn‘t need pain relief. I said I did. She said I didn‘t, and we see-sawed back and forth for 20 minutes.

You know what we are like – at least what I am like – stubborn. Eventually doctor gives in, I am given something I assume is for pain relief, and we start the MRI scan.

Page 12

Mr. Hornby admitted to his wife that he was feeling much better since his operation, but couldn’t account for the enormous bump on the back of his head.”Oh, that,” chuckled Mrs. Hornby.”Just before your operation they suddenly ran out of ether!”A man is in a hospital bed completely wrapped up in a body cast. One of the nurses gave him a rectal thermometer and told him not to move she would be right back. When she returned the thermometer was in his mouth. She asked in amazement,”How did you get that in your mouth, you can’t even move?”He replied ‗I hiccoughed‘.

Ten minutes later the red hot pokers are blasting up my spine, and I tell them I am coming out. Doctor is furious, meets me as I crawl out, arms akimbo; ―I gave you something for claustrophobia‖ she told me!

After that, one would think my reputation would have spread around the hospital, and other technicians would be making sure I didn‘t muck up expensive procedures. I am told I have to have an angiogram – but no-one told me I would have to lie with my arm above my head for half an hour. Of course I can‘t raise it, so have to ask the doctor – who very bad tempered lifts it up and places it in some restraint.

Of course, you guessed it – this time they had to carry me upstairs to a bed and give me some very heavy pain relief. Then a wonderful surgeon, Mario Petrou, was given the task of telling me I had to have a seven hour heart operation. Poor man !

But – he bothered to get hold of the anaesthetist who contacted not only me before my op, but spoke to my polio doctor (Dr. Zilka at that time), and bothered to read the paper from the Polio Fellowship about what we needed. I woke up in Intensive Care feeling fantastic, and didn‘t have a twinge or a problem afterwards.

So if you have to have an MRI Scan , Long CT scan, Long X-ray, Radiotherapy, Operation etc., make certain the team looking after you know you have polio, and if they don‘t know how to deal with your condition, get papers that tell them what they must do.

It is counter-productive to have pain. If you have had a difficult procedure the last thing you need is to have to put up with the red hot pokers playing tunes on your spine – or wherever they entertain you.

Make a fuss. Be a nuisance. YOU are the patient, and medical staff should make quite sure you are comfortable. They are always harping on about ‗dignity‘. Well, what‘s dignified about being in pain?

Abroad patients are often used as Advocates, and introduced to nurses on training courses. I have tried to get this organised in Britain, but as I was told at The Marsden, ―you are only a patient‖.

However, if anyone has the ear of an MP, or better still someone from the Dept. Of Health, try if you can get them to introduce a half hour talk about ―how to treat polio patients‖. It can only be to our advantage, and surprisingly enough I bet the nurses and doctors will learn a thing or two.

Prof. Guiloff is now ‗my‘ polio specialist and tells his students (bless him) ―never ask a polio patient IF they can get up stairs. Always ask them HOW they get up stairs – it might be shuffling on their bottom‖.

Verité Reily Collins <verite@greenbee.net>

Editor: www.after-cancer.com; www.healthspanews.com Member Chartered Institute Journalists; the Sports’ Journalists’ Association., and the Association. Guild Health Writers

Summary of Anesthesia Issues for the Post-Polio Patient

Selma H. Calmes, Chairman and Professor, (retired) Department of Anesthesiology, Olive ViewUCLA Medical Center, Sylmar, California. Selma is also a fellow Polio Survivor.

Polio results in widespread neural changes, not just destruction of the spinal cord anterior horn (motor nerve) cells, and these changes get worse as patients age. These anatomic changes affect many aspects of anesthesia care. No study of polio patients having anesthesia has been done. These recommendations are based on extensive review of the current literature and clinical experience with these patients. They may need to be adjusted for a particular patient.

1. Post-polio patients are nearly always very sensitive to sedative meds, and emergence can be prolonged. This is probably due to central neuronal changes, especially in the Reticular Activating System, from the original disease.

2. Non-depolarizing muscle relaxants cause a greater degree of block for a longer period of time in post-polio patients. The current recommendation is to start with half the usual dose of whatever you’re using, adding more as needed. This is because the poliovirus actually lived at the neuromuscular junctions during the original disease, and there are extensive anatomic changes there, even in seemingly normal muscles, which make for greater sensitivity to relaxants. Also, many patients have a significant decrease in total muscle mass. Neuromuscular monitoring intraop helps prevent overdose of muscle relaxants. Overdose has been a frequent problem.

3. Succinylcholine often causes severe, generalized muscle pain postop. It’s useful if this can be avoided, if possible.

4. Postop pain is often a significant issue. The anatomic changes from the original disease can affect pain pathways due to “spill-over” of the inflammatory response. Spinal cord “wind-up” of pain signals seems to occur. Proactive, multi-modal post-op pain control (local anesthesia at the incision plus PCA, etc.) helps.

5. The autonomic nervous system is often dysfunctional, again due to anatomic changes from the original disease (the inflammation and scarring in the anterior horn “spills over” to the intermediolateral column, where sympathetic nerves travel). This can cause gastro-esophageal reflux, tachyarrhythmias and, sometimes, difficulty maintaining BP when anesthetics are given.

6. Patients who use ventilators often have worsening of ventilatory function postop, and some patients who did not need ventilation have had to go onto a ventilator (including long-term use) postop. It’s useful to get at least a VC preop, and full pulmonary function studies may be helpful. One group that should all have preop PFTs is those who were in iron lungs. The marker for real difficulty is thought to be a VC <1.0 liter. Such a patient needs good pulmonary preparation preop and a plan for postop ventilatory support. Another ventilation risk is obstructive sleep apnea in the postop period. Many post-polios are turning out to have significant sleep apnea due to new weakness in their upper airway muscles as they age.

7. Laryngeal and swallowing problems due to muscle weakness are being recognized more often. Many patients have at least one paralyzed cord, and several cases of bilateral cord paralysis have occurred postop, after intubation or upper extremity blocks. ENT evaluation of the upper airway in suspicious patients would be useful.

8. Positioning can be difficult due to body asymmetry. Affected limbs are osteopenic and can be easily fractured during positioning for surgery. There seems to be greater risk for peripheral nerve damage (includes brachial plexus) during long cases, probably because nerves are not normal and also because peripheral nerves may be unprotected by the usual muscle mass or tendons.

For more info: Review “Postpolio Syndrome and Anesthesia” by David A. Lambert, MD; Elenis Giannouli, MD; & Brian J. Schmidt, MD, The University of Manitoba, Winnipeg, Canada, in the September 2005 issue of Anesthesiology (Vol. 103, No. 3, pp 638-644). This article reviews polio, postpolio syndrome and anesthetic considerations for this patient population. [See overleaf]

Postpolio Syndrome and Anesthesia

David A. Lambert, M.D.,* Eleni Giannouli, M.D.,† Brian J. Schmidt, M.D.‡ Anesthesiology 2005; 103:638–44

[Editors Note:- This article contains very important information to add to the previous two in this newsletter. This article is FREE to download at http://journals.lww.com/anesthesiology/ Fulltext/2005/09000/Postpolio_Syndrome_and_Anesthesia.29.aspx#

We do not have enough room in this newsletter for the whole article which covers Poliomyelitis: Acute Illness and Recovery and then moves onto Post Polio Syndrome. To supplement the previous articles we start our reproduction at the sub-heading Respiratory Function. We urge anyone reading this who does not have basic knowledge of Polio and Post-Polio Syndrome to read the full article.

N.B. Page 13, the third line under the heading Preoperative Assessment, marked with an * – absence of known polio damage to the upper body should not preclude a full respiratory assessment as more and more polio survivors are now reporting and having symptoms confirmed when tests ask for a few repeats of actions.]

Respiratory Dysfunction. One of the hallmarks of the treatment of acute poliomyelitis was the negative pressure ventilator, or iron lung. Respiratory failure secondary to polio, when present, was the major cause of morbidity and mortality. Respiratory symptoms occur in up to 40% of PPS patients. [37] Symptoms range from mildly decreased pulmonary function to frank respiratory failure and the need for assisted ventilation. Contributing to these symptoms are restrictive chest wall changes (scoliosis, kyphosis), altered chest wall strength (decreased maximum inspiratory/expiratory pressures), recurrent infections, and sleeprelated disordered breathing (SRDB).

Anesthesiologists are familiar with caring for patients with respiratory problems. However, patients with SRDB, including obstructive and central sleep apnea as well as hypoventilation syndromes, can be particularly challenging. Theoretically, PPS patients are at higher risk of SRDB because of previous damage to the reticular activating system, decreased strength and tone in upper airway musculature, and increased rates of obesity due to decreased mobility. whether PPS patients have an increased incidence of SRDB relative to healthy individuals is not clear. However, in one study of 155 Postpolio patients by Fischer, [38] the symptoms of frequent waking, snoring, and daytime fatigue were reported at least five times more often than in healthy controls. Daytime sleepiness, tiredness, morning headache, and restless leg symptoms were reported more often in PPS subjects than in healthy controls. [39] Another study retrospectively examined 35 subjects who fit the criteria for PPS and had symptoms of SRDB. [40] These investigators found three patterns of sleep disturbance: obstructive sleep apnea (n = 19), hypoventilation (n = 7), and a combination of both (n = 9). Interestingly, compared with non-PPS patients evaluated for obstructive sleep apnea by the same laboratory, PPS patients were of similar age (55 vs.56 yr) but weighed less (176% vs. 144% ideal body weight).

Laryngeal function was examined in nine subjects with PPS. [41] Subjects who reported severe swallowing problems were the same individuals who had impaired voice and laryngeal function, based on videostroboscopic evaluation, acoustical analysis, and, in three patients, laryngeal electromyography. Half of these patients were found to have unilateral vocal chord paralysis. These same patients gave a history of bulbar symptoms with their initial polio illness.

Cold Intolerance. Cold intolerance is not uncommonly reported in PPS patients. One 5-yr follow-up study of 68 PPS patients found that 65% of patients reported symptoms of cold intolerance. [24] Whether this is the result of altered perfusion to limbs secondary to vascular changes in atrophied muscles or from changes in vasoconstrictor tone due to damaged sympathetic pathways is not clear. [42] Treatment is symptomatic.

Dysphagia. [difficulties with swallowing] Dysphagia is reported by 10–20% of PPS patients. [43] Symptoms range from mild “sticking” of food in the esophagus to frequent choking and symptoms of

reflux disease. In one study, ultrasound and videofluoroscopy were used to evaluate swallowing function of 32 PPS patients. [44] Fourteen had symptoms of dysphagia, and 12 had a history of bulbar involvement. Interestingly, swallowing abnormalities were revealed in 31 patients, regardless of the presence or absence of dysphagia. These studies suggest that PPS patients, even if asymptomatic, may be at increased risk of both overt and silent aspiration. [40,41,43,44]

Anesthesia and Postpolio Syndrome

Only four case reports discuss anesthesia and PPS. [45–48] Two of these describe complications. The first report describes a 79-yr-old patient with unanticipated ventilator failure postoperatively, which, on investigation, was thought to be the result of undiagnosed PPS. [48] The second and most recent report is that of a 51-yr-old patient presenting for foot surgery related to her previous childhood polio illness. [46] The patient experienced acute cardiopulmonary arrest in her hospital room approximately 1 hour postoperatively and did not recover from the resulting cerebral injury. The arrest was presumed to be the result of oversedation secondary to opioid administration in the presence of possible obstructive sleep apnea. The other reports describe PPS patients who underwent anesthesia without incident (spinal anesthesia in one patient and anesthesia for electroconvulsive therapy in the other patient). [45,47]

Preoperative Assessment

Preanesthetic evaluation of a PPS patient should begin with an assessment of the history of the patient’s previous poliomyelitis illness. The patient’s age at the time of illness, severity (including the presence or absence of bulbar symptoms*), and amount of recovery are all helpful in anticipating the likelihood of developing PPS. Documenting the extent of residual deficits is important to understand the patient’s baseline function. If the patient reports symptoms suggesting PPS, one should consider referral to a specialist with experience with PPS patients, such as a neurologist, if this has not already been done. In some cases, the surgical service may be unaware of the fact that their patient has PPS. Communication of this information should enhance overall patient management.

Often, chronic pain syndromes are present in these patients. Evaluation of contractures or spinal deformities is important to establish a baseline and anticipate positioning issues that might arise intraoperatively. Although patients may already be taking oral opioid medications, many are “opioid naive.” Some patients may report excessive sedation with opioid or sedative hypnotic drugs, as prescribed for dental procedures, for example.

A detailed respiratory evaluation is very important in this patient population. Anesthesiologists may encounter PPS patients with no respiratory symptoms at all, or conversely, the PPS patient may have a mature tracheostomy site and may be dependent on overnight positive pressure ventilation. Any symptoms suggestive of decreased respiratory reserve should be thoroughly evaluated with a baseline chest radiograph and spirometry. Vital capacity of less than 50% of the predicted value, or 1,500 ml, warrants complete pulmonary function testing, including maximum inspiratory/expiratory pressures. Special attention should be made not to overlook a history consistent with sleep apnea or hypoventilation syndrome. This includes symptoms of morning headache, excessive daytime somnolence, and episodes of snoring or apnea during sleep. A positive history should prompt arterial blood gas sampling and consideration of referral to a respirologist and a formal sleep study. [49] Patients with SRDB syndromes are at higher risk of cardiac dysfunction, including cor pulmonale and pulmonary hypertension. Finally, preoperative evaluation should include an inquiry into symptoms of dysphagia and reflux disease.

Perioperative Considerations

An important consideration in the anesthetic management of patients with PPS is whether regional anesthesia is safe. Many anesthesiologists are hesitant to use regional anesthesia in patients with preexisting neuromuscular deficits, because of the concern of exacerbating existing disease or difficulty evaluating complications. There have been no reports of adverse effects due to regional anesthesia in PPS patients, [45] but this does not necessarily mean that regional techniques are without risk.

Animal studies have determined specific intrathecal concentrations of local anesthetics that are lethal for

neurons. [50] It is not possible to know the number of healthy versus damaged motor neurons in an individual PPS patient. However, patients with PPS have fewer motor neurons than normal, at least some of which are likely to have residual dysfunction, or increased metabolic demand because they supply enlarged motor units (fig. 1C). These motor neurons may be more sensitive to drug effects. Therefore, theoretically, the toxic intrathecal concentration of a local anesthetic may be lower in PPS patients. However, to date, there are no direct experimental data to confirm or refute this concept. There is also no evidence as to whether there is an increased risk of adverse effects using peripheral nerve blocks or indwelling catheters in PPS patients.

Ultimately, the decision to use general or regional anesthesia should be made on an individual patient basis weighing the risks and benefits. If a spinal anesthetic is selected, a medication with a long history of safety, such as hyperbaric bupivacaine, should be used.

There are several considerations when administering general anesthesia to patients with PPS. Initially, it is important to ensure that the patient is comfortably positioned and that attention is given to limbs with contracture. Blankets or warming devices are particularly appropriate because of cold intolerance. Baseline twitch response to peripheral nerve stimulation should be measured before administering neuromuscular blockade, because this response might be abnormally small in some muscles. Traditionally in patients with neuromuscular disease, succinylcholine is used cautiously to avoid precipitating hyperkalemia. However, there are no specific data on the use of succinylcholine in patients with PPS. One study suggested that patients with a remote history of polio have increased sensitivity to nondepolarizing muscle blockers. [51] For this reason, selection of shorter-acting agents, such as rocuronium and mivacurium, along with careful titration of doses to desired effect, is important in patients with PPS. In some cases, completely avoiding neuromuscular blockade may be appropriate.

The fact that patients with PPS often have residual lesions involving the reticular activating system [4,25] may be of particular relevance to anesthesia. The reticular activating system is a theoretical site of action for most anesthetic agents, and patients with PPS may show altered sensitivity to anesthetic drugs. No data describing the dose–response characteristics of induction agents in patients with PPS exists, nor is it known whether there are differences in minimum alveolar concentration when patients with PPS are compared with the normal population. Considering possible altered sensitivity to induction drugs, maintenance agents, muscle relaxants, and opioids, caution in the selection of dose of virtually any medication administered for general anesthesia should be used in this patient group.

Emergence from anesthesia should be preceded by ensuring complete reversal of neuromuscular blockade. The risk of aspiration is greater in at least some PPS patients. As such, selected patients may benefit from prophylactic antiemetic medication. Careful suctioning of the hypopharynx before emergence is essential. Vital capacity “big breaths” before extubation may help to recruit a maximal number of alveoli. Doses of opioids should initially be low and carefully titrated to effect, and long-acting medications should be used cautiously. Other coanalgesics, such as nonsteroidal anti-inflammatory agents, should be used when possible.

Postoperative Management

As noted in the first paragraph of the Anesthesia and Postpolio Syndrome section, two reports have described postoperative complications, one resulting in death, in patients with PPS. [46,48] In these two cases, postoperative respiratory failure, associated with weakness, over-sedation, or both, was deemed contributory. Therefore, the most serious anesthesia-related risk for PPS patients may be in the postoperative period. Just as it is now recognized that more intensive postoperative monitoring may be needed for patients with a history of obstructive sleep apnea, it would be similarly appropriate to increase one’s vigilance during postoperative monitoring of patients with PPS. Ambulatory surgery in this population should be considered only in select patients. It would seem prudent to avoid “fast-tracking” the transfer from the operating room immediately to the ward in patients with PPS.

Finally, coughing should be encouraged. Incentive spirometry and humidification of inspired gases should be considered for PPS patients in the recovery room.

Conclusion

Survivors of the poliomyelitis epidemics are now more than ever presenting for a variety of surgical procedures requiring anesthesia. Some of these survivors have developed PPS. In reviewing the pathology of acute poliomyelitis and PPS itself, multiple considerations for anesthesia become apparent. These include compromised respiratory function, SRDB issues, chronic pain syndromes, aspiration risks, and cold intolerance. In addition, postpolio patients may display altered sensitivity to any of the medications commonly used for regional and general anesthesia. Once aware of these considerations, anesthesiologists are better prepared to provide safe care, not only to patients with PPS, but to any patient with a history of poliomyelitis.

References for the second half of this article are:-

4. Bodian D: Histopathological basis of clinical findings in poliomyelitis. Am J Med 1949; 6:563–78

24. Stanghelle JK, Festvag LV: Postpolio syndrome: A 5 year follow-up. Spinal Cord 1997; 35:503–8

25. Bruno RL, Cohen JM, Galski T, Frick NM: The Neuroanatomy of post-polio fatigue. Arch Phys Med Rehabil 1994; 75:498–504

26. Cashman NR, Masselli R, Wollman RL, Roos R, Simon R, Antel JP: Late

denervation in patients with antecedent paralytic poliomyelitis. N Eng J Med 1987; 317:7–12

36. Cohen SP, Mullings R, Abdi S: The pharmacological treatment of muscle pain.

ANESTHESIOLOGY 2004 101:495–526

37. Halstead LS, Rossi CD: New problems in old polio patients: Results of a survey of 539 polio survivors.

Orthopedics 1985; 8:845–50

38. Fischer DA: Sleep-disordered breathing as a late effect of poliomyelitis.

Birth Defects Orig Artic Ser 1987; 23:115–20

39. van Kralingen KW, Ivany B, van Keimpema AR, Venmans BJ, de Visser M, Postmus PE:

Sleep complaints in postpolio syndrome. Arch Phys Med Rehabil 1996; 77:609–11

40. Hsu AA, Staats BA: “Postpolio” sequelae and sleep related disordered breathing. Mayo Clin Proc 1988; 7:216–24

41. Driscoll BP, Gracco C, Coelho C, Goldstein J, Oshima K, Tierney E, Sasaki CT: Laryngeal function in postpolio patients. Laryngoscope 1995; 105:35–41

42. Smith E, Rosenblatt P, Limauro A: The role of the sympathetic nervous system in acute poliomyelitis.

J Pediatr 1949; 34:1–11

43. Buchholz DW, Jones B: Post-polio dysphagia: Alarm or caution. Orthopedics 1991; 14:1303–5

44. Sonies BC, Dalakas MC: Dysphagia in patients with the post-polio syndrome. N Engl J Med 1991; 324:1162–67

45. Higashizawa T, Sugiura J, Takasugi Y: Spinal anesthesia in a patient with hemiparesis after poliomyelitis.

Masui 2003; 52:1335–7

46. Magi E, Recine C, Klockenbusch B, Cascianini EA: A postoperative respiratory arrest in a post poliomyelitis patient. Anesthesia 2003; 58:84–105

47. Liu S, Modell JH: Anesthetic management for patients with post polio syndrome receiving electroconvulsive therapy. ANESTHESIOLOGY 2001; 95:799–801

48. Janda A: Postoperative respiratory insufficiency in patients after poliomyelitis. Anaesthetist 1979; 28:249

49. Bach JR: Evaluation and management of post-polio respiratory sequelae: Non-invasive options,

Post Polio Syndrome. Edited by Halstead LS,Grimby G.Philadelphia, Hanley and Belfus, 1995, pp 89–112

50. Hodgson PS, Neal JM, Pollock JE, Liu SS: The neurotoxicity of drugs given intrathecally (spinal).

Anesth Analg 1999; 88:797–809

51. Gyermek L: Increased potency of nondepolarizing muscle relaxants after poliomyelitis.

J Clin Pharmacol 1990; 30:170–3

More articles from the Lincolnshire Post-Polio Library, www.poliosurvivorsnetwork.org.uk/archive/library Joan M Walker, PhD, PT [also in leaflet format copies sent as part of your Info Pack]

 You are going to have surgery – A guide for Polio Survivors

 Polio Survivors as patients – Guide for Emergency Care and Surgical Health Workers

 What you should know about your medications – A guide for Polio Survivors [UK Version]

Richard L Bruno PhD

 The Knife is not so rough if… [Preventing complications in polio survivors undergoing surgery]

 Be true to your PPS and your teeth won‘t be false to you: preventing complications in polio survivors

undergoing dental procedures.

Polio Survivors sharing info.

Please send info for this page by email or letter. We know that may be difficult for a few members who are welcome to ring. Deadline for next issue is March 15th.

Do any other readers experience?

1. Able to sleep better during the day in recliner or bed if the tv is on [a program happy to drift

in and out of] but if someone turns tv off then wake up immediately.

2. A few polio survivors already said this happens to them as well. If we have really overdone

and crash out – usually with tv or music playing – then we drift into and out of various levels

of consciousness. We report a level that is ‗able to open eyes but not move muscles‘ – up to

40 minutes – and then we seem to sigh a big sigh and are able to move limbs. Do any other

readers experience this? Noted is that an unexpected noise will wake us up with a start.

Things that have helped.

1. Reducing ventilator mask leaks. Using a bi-level ventilator takes a bit of getting used to –

for user and anyone sleeping in the same room. The major issue we have had is mask

leaks which disrupt the level of sleep for both of us. Just over a month ago whilst searching

for a picture of the ventilator mask to put on information for new support workers we found

some cotton mask liners and they have worked for us. They are American, took seven days

to arrive. www.RemZzzs.com [n.b. This is a personal statement and not on behalf of PSN]

2. Pain in hip when sleeping. We now have physio at home twice a month and it is making a

difference. 5th visit I asked if she could help with bad pain in left hip that comes on at night.

She asked me to show her the position I sleep in – on my left side almost in recovery

position to be able to breathe at my best. Immediately she told me that the pain was caused

by my being over too far twisting my spine. She pulled me back straight, lying on side, and

put a small pillow between my thighs. No Hip pain now but knee pain started. Two weeks

later she advised another small pillow between calves and knee pain has gone. If I fall back

onto my back I cant breathe as well and wake up. To prevent this she suggested using two

pillows in this shape /\ but with the left hand pillow on top of the right at the top of the /\, to

stop me rolling all the way back. My head is on the right hand pillow \. That too has helped.

3. Talking to others in the same position. Coping with the stresses and strains of getting

medical and social care help now we have PPS can be tough. Not only for the user but for

the carer as well. Having a chat with another polio survivor or carer/family member of a polio

survivor can really help. Finding out that others are experiencing the same things and being

able to discuss possible ways of improving the situation helps. Strangely there is often much

laughter associated with these chats, and laughter really does help lighten the load.

Laughter IS the Best Medicine.

I was in the Mall in Lincoln last week and saw a new store with the name Tickle Fish. On investigation it was the strange new beauty treatment for feet where small fish called Garra Rufa nibble and suck at your feet to gently remove dead skin cells through natural exfoliation!

I came home, told my husband and said I was going to try this next time I was in town.

‗And How Much Is This Going To Cost?‘ was his next clipped word statement. I replied with a smile ‘that it was only £10 for 15 minutes‘.

He paused and then said ‗I suppose it is an ‗All You Can Eat Rate‘ for the fish‘.

Management Committee [Trustees]

Treasurer – Hilary Boone – hilary.boone@poliosurvivorsnetwork.org.uk Committee Members

Ian Hobday – ian.hobday@poliosurvivorsnetwork.org.uk

Gillian Bryan – Gilltcs@aol.com [Co-opted to the Committee]

Operations Team

Website Administration – Dave Eate – webadmin@poliosurvivorsnetwork.org.uk

[Please contact us if you would like to help with our work]

Management Committee [Trustees] and Operations Team

Membership

Full membership includes voting rights and is available to polio survivors, their partners, families and friends.

Associate membership, no voting rights, is available to patient organisations, health and social care professionals working in the interests of polio survivors

Friend/Supporter. If you would like to support the Polio Survivors Network you can do so by making a yearly donation of your choice.

You will receive a yearly update of our activities and be invited to our AGM.

Membership Fees

Individual – £ 12.50 per year

Life membership – £ 150.00 or pay by Standing Order £ 5.00 x 30 mo. Associate Membership – £ 10.00 per year

Yearly fees can be paid by Standing Order.

We welcome members living in other countries and details will be sent upon request. Please note the majority of information will be sent via the Internet.

Email:- membership@poliosurvivorsnetwork.org.uk

All Forms are available on our Website, by phoning our helpline or writing to us.

Donations

Donations, small or large, towards our work will always be gratefully received.

Val Scrivener is supporting us by making photo greetings cards for you to purchase

 Some members send us a few postage stamps

 Some members take their newsletter via the internet saving us printing and posting costs.

 Others add a donation amount to their yearly cheque, or Standing Order amount.

 UK Taxpayers can Gift Aid their subscription and donated amounts.

The Gift Aid scheme. Charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer. Between 6 April 2008 and 5 April 2011, the government will also give UK charities an extra 3% of all eligible donations. 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%).

NEW

© Polio Survivors Network – Volume 7, Issue 3 – January 2011	Page 20
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