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Post Polio Matters Volume 11 Issue 10
POST POLIO MATTERS
August 2025 www.poliosurvivorsnetwork.org.uk
Polio Survivors Network Newsletter — Volume 11 Issue 10 of 12 [Edition 130]
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network
In this edition, we invite you to reflect on both continuity and change, as we share stories that highlight the collective strength and journey of our network. From thoughtful exchanges at this year’s AGM to the arrival of a new Trustee whose experience brings valuable perspective and enthusiasm, we continue to grow in purpose and connection.
We’re proud to include a vivid account of one Trustee’s presentation to a distinguished group of Chartered Physiotherapists, bringing survivor experience into professional discourse and deepening mutual understanding. These moments of shared learning reinforce our commitment to awareness, advocacy and informed care.
You’ll also find features that span art, history and community—from the groundbreaking Design and Disability exhibition at the V&A to the poignant closure of SPPN in Scotland and the enduring legacy of blues icon Brownie McGhee. Each story resonates with the themes of creativity, compassion and determination that define this community.
As always, your contributions—letters, articles, and reflections—infuse these pages with warmth and authenticity. We hope this issue inspires meaningful conversation and renewed connection. We send you our very best wishes and want to say “thank you for being part of our network”.
| Donations and Charity Incentives Paid(since last newsletter) | |
| PayPal Giving fund | 0.25 |
| Donation S&P T | 20.00 |
| Donation DB | 12.50 |
| Total | £32.75 |
Message from our Chair 3 – 4
Zsuzsi’s AGILE Presentation ‘Post Polio Syndrome’ 5 – 6
Verite’s Views 7 – 9
Toni writes / From our readers 11
Scottish Post Polio Network News 12 – 13
Far Fetched – Vic Baxter 14
Professor Mike 15
Brownie McGhee – Triumph Over Adversity 16 – 18
The legacy of Jonas Salk and Albert Sabin 19 – 21
Newsletter Library / Researching vaccines 22
Introducing Our Recently Appointed Trustee – Ben 10
BPF Competitions / Useful resources 23
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This publication is provided free thanks to the generous donations of our lovely members.
We are very grateful!
Managment committee / Contact details / Donation info Back page
Reflections on the Year
This year, PSN has continued to support our members with practical information, lived experience, responding to enquires, and advocacy relating to the long-term effects of polio and Post-Polio Syndrome (PPS). Our goal remains to help members live well with the evolving impact of having had polio—often decades ago.
A particularly significant and sad moment, personally and for the Charity in 2024 was the passing of our founder, Hilary Boone. Hilary’s work in the late 1990s laid the groundwork for national recognition of PPS as a serious neurological condition in the face of much denial and ignorance about this now well accepted, though still sadly often an overlooked condition and an important co-morbidity to be assessed in holistic care. Her courage and determination continued to challenge medical orthodoxy and empowered countless survivors, not just in the UK but globally. We hope to continue her legacy in the coming years as best we can.
As the population of polio survivors in the UK becomes smaller and older, it is more important than ever that our voices are heard and that we work with other groups and professionals wherever possible, whilst emphasising the unique aspects of PPS. Increasingly, we find ourselves treated by services and professionals unfamiliar with polio’s long-term effects, or unaware of how PPS may interact with ageing, other health conditions, and disability. Indeed, there will be few if any medical professionals in the west who have seen or treated an acute polio case or been involved in their ongoing care. PSN remains an organisation that specifically addressing these informational and education gaps in understanding. This can and does lead to polio survivors being treated according to generalised protocol and standards of care that provide sub optimal care and quality of life and in some cases lead to more serious outcomes.
Organisational Update
This past year we have worked hard to clarify our role, update our systems, and maintain our contact with members and the wider polio survivor community.
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2025 AGM Message From Our Chair
Simon presented the following piece at our recent Annual General Meeting (AGM) reflecting on January to December 2024.
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I want to extend particular thanks to Toni Dunlop our brilliant administrator. She has continued to streamline our records, oversee and rationalise the website and database, and managed both routine enquiries and compliance. Her work has been central to PSN’s functioning and stability.
I’d also like to thank our trustees—Verite Reilly-Collins, Zsuzsi Snarey, for their time, input and consistent support, especially while managing their own health challenges. Their contributions have kept PSN running despite the challenges with care and commitment. I would also like to thank Ben Beck for offering to become a trustee, we look forward to him joining us.
Thanks to legacy gifts and donations, we have been able to keep membership free. However, I need to flag that this may need to be reviewed in the next year or two, as reserves are not unlimited. We remain mindful of the wider economic context and welcome any support, ideas, or fundraising suggestions.
Looking Ahead
Aside from our website and database, our newsletter remains our main tool for communication to members, offering advice, updates, and shared experience. We always welcome contributions from members and encourage you to write, however briefly, about your experiences. Whilst email digital copies remain the majority of our output, we remain committed to offering a print versions for members who may prefer them.
Finally, like all small charities PSN needs you, our members’ involvement. We exist for you. Being on the committee isn’t onerous—we meet virtually only a few times a year online and support one another. However, fresh energy and new ideas and perspectives are vital to keep an organisation relevant and well managed. Please do consider getting involved at any level you feel able. Thank you again for your continued support.
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Zsuzsi’s AGILE Presentation ‘Post Polio Syndrome’
Zsuzsanna Snarey, Trustee of the Polio Survivors Network (PSN), delivered a thoughtful and personal presentation at the Adding LIfe to Years conference held in May 2025 by AGILE. Zsuzsi offered a rich overview of Post Polio Syndrome (PPS) and her lived experience.
Rooted in both medical understanding and personal narrative, her talk framed PPS as the long tail of polio epidemics from the mid-20th century—a legacy that still shapes the lives of many, even as polio itself fades from public consciousness.
She began by outlining the biological impact of the polio virus, which attacks the anterior horn cells of the spinal cord, resulting in the death of some motor neurons. Recovery occurs when surviving neurons compensate by sprouting new terminal axons and re-innervating orphaned muscle fibres. However, over time, these overworked systems succumb to fatigue, age, or illness, marking the onset of PPS.
Zsuzsanna’s own timeline of living with polio provided an intimate framework for understanding the condition. Diagnosed at age eight in 1949, she experienced partial paralysis and went on to recover much of her mobility during early adulthood. By 2005, however, she began experiencing significant deterioration attributed to PPS. Her journey from walking with one stick to using two sticks, callipers, a chair lift, and a mobility scooter illustrates the progressive nature of the syndrome.
A key section of the presentation focused on physiotherapy for PPS patients, highlighting the importance of listening to individuals and adapting approaches based on their unique needs. Zsuzsanna challenged traditional models that promote the “no pain, no gain” mindset, arguing that such attitudes can be harmful for polio survivors. Instead, she advocated for targeted exercise—particularly focusing on unaffected muscle groups and incorporating cardiovascular activity to maintain general health—without exacerbating weakness or pain.
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She also offered a detailed chronology of her physiotherapy experiences, beginning with childhood sessions led by her mother and a visiting physiotherapist in Hungary. At age 14, she underwent foot surgeries which led to further rehabilitation, followed by sporadic support in her adult years until a breast cancer diagnosis in 2005 prompted renewed attention to physical therapy. Her PPS diagnosis in 2007 led to more structured interventions, including referrals to neuro-physiotherapy services and hydrotherapy sessions in Margate. Since moving to Nottingham in 2018, she has utilised a blend of NHS and private services, including an exercise programme at Stapleford Care Centre and the OneStep app, reflecting a proactive and informed approach to her care.
Throughout the presentation, Zsuzsi emphasised education and support as central to PSN’s mission. She acknowledged the role of organisations such as the British Polio Fellowship in offering resources, but stressed the importance of providing extensive and accessible information to empower survivors and medical professionals alike.
Zsuzsi’s presentation resonated with authenticity, offering a rare glimpse into how personal experience can inform advocacy, care, and understanding. It served not only as an educational tool but as a deeply human call for recognition, compassion, and continued dialogue in the treatment of PPS.
AGILE is a Professional Network of the Chartered Society of Physiotherapy and is for therapists working with older people – whether qualified physiotherapists, assistants, students or associate members of an allied profession.
Website https://agile.csp.org.uk
Remember to avoid overexertion during daily activities and to focus
on regular, gentle movement
Zsuzsi used the “One Step” app for prescribed exercises and to motivate herself to stay active
The next blockbuster exhibition at London’s Victoria & Albert Museum is Design and Disability , set to run until 15 February 2026. If previous exhibitions here are anything to go by, it will be well worth a visit.
Good news is that disabled visitors can purchase a free ticket – plus have a free ticket for companion/carer/wheelchair pusher. Also, there is free entrance for anyone on Universal Credit.
Design and Disability will showcase the radical contributions of Disabled, Deaf and neurodivergent people to contemporary design and culture from 1940s to now.
The V & A is the most disabled-user friendly museum I know. With Blue Badge parking for 12 cars by the Exhibition Road entrance, leading to a step-free entrance with an automatic-opening door and free wheelchairs available if wanted, they have really got what we need sussed.
The website has more on https://www.vam.ac.uk/exhibitions/design-anddisability
More displays will show how Disabled people have designed for every aspect of life through their own experience and expertise, as well as trace the political and social history of design and disability. Through examples of disability-first practices showcasing the work of Disabled people and their collaborators, the exhibition will demonstrate how design can be made more equitable and accessible, and aim towards design justice.
Natalie Kane, Curator of Design and Disability says: “This exhibition shows how Disabled people are the experts in our own lives, and have made invaluable contributions to our designed world.”
Hungry/Thirsty?
Afterwards, a large area in the museum is devoted to “a very nice café with a
Museum attached.” This has a wonderful array of what might be called Fast
Verite’s Views-Can the V&A Encourage Better NHS Design?
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170 objects will be on display across three
sections –Visibility, Tools and Living –
spanning design, art, architecture, fashion,
and photography. One example of the
thought-provoking exhibits is the Squeeze
Chaise Longue (Illustrated here), a recliner
developed by artist Wendy Jacob, that
embraces the sitter between two mohair
arms, providing comforting sensory
feedback for those who appreciate deep pressure stimulation. Wendy was inspired to create the work with autistic animal scientist and agriculturalist Temple Grandin, inventor of the ‘Hug Machine’, on the design. The luxurious form of the chaise longue subverts conventional pared-back medical aesthetics.
Food, with lots of different main courses, tasty sandwiches, and a patisserie section to drool over. Like a canteen, you pick up a tray and fill it–but the food is far tastier. I enjoyed being wheeled around the different food stations choosing what I wanted to eat. You can eat inside in the opulent William Morris designed room, or outdoors in the Courtyard. Plenty of space for wheelchairs, and the staff are very helpful.
Design and Disability Exhibition
Design and Disability begins with a welcome and rest space for visitors to orient themselves and address any access needs. A tactile map, audio description, and BSL welcome will be available to visitors, as well as both large print, sensory map and plain English guides.
The exhibition’s first section, Visibility, will explore how Disabled makers visualise and express their own identities across fashion, photography, demonstrations, graphic design and zine culture. Highlights include the hyper -visual ensemble by designer and activist Sky Cubacub, including their genderaffirming, adaptive garment Rebirth Garments Binder, which matches the Dragon Scale Head Dress that functions as a wearable weighted blanket; a handsewn Notting Hill Carnival Costume, inspired by Sandro Botticelli’s The Birth of Venus by Maya Scarlette, a fashion designer with ectrodactyly.
Portrait photography in this section will include Marvel Harris’ ‘First Swim after Rebirth’, a joyous self-portrait taken following gender-affirming surgery. As an autistic person who has dealt with issues of self-acceptance, well-being and gender identity, it celebrates Disabled joy. The second section, Tools, will explore the creativity of Disabled people in adapting and subverting designed objects to suit a greater diversity of access needs. This section challenges the way society views Disabled people as passive users of design, instead focusing on their inventing, breaking, adapting, and ‘hacking’ the designed world for themselves. Projects in this section consider how Disabled communities create design networks and work together collaboratively or individually to make new things.
On display will be the Touchstream keyboard by Wayne Westerman and Fingerworks (2005), a technology which revolutionised the tech industry and
was later used in the iPhone 1. Designed to help with his severe hand pain, the
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touchpad replaces a traditional keyboard, utilizing sensors to track movements like pinching, swiping and scrolling.
The finale of this section is a specially designed decompression zone for selfregulation, reflection, and rest. The area will include comfortable seats, a collection of objects designed by occupational therapists – many of them disabled themselves – to adapt existing designs, books and objects. Design, art, architecture, fashion, and photography will show how Disabled people have designed for every aspect of life through their own experience and expertise, as well as trace the political and social history of design and disability.
Who should visit?
Top of my list would be EVERY architect that bids for NHS work. Starting with the Architects who designed the Royal Marsden theatres after their recent fire. Showing the BBC TV new crew around, I winced when a Sister, showing off the special lighting, used her finger to switch on. They obviously haven’t been abroad, where finger-tip switches are taboo; it’s all done by elbows – they are cleaner.
Oxford’s giant John Radcliffe Hospital is another where the architects and designers need educating. Recently a new set of signs were put in place – and taken down almost immediately (what did that cost?) Someone had had the “trendy” idea to paint lettering in grey on a white background. Not very sensible if you have poor vision.
But the Radcliffe classic must be the isolation room I was given when a hospital infection made me blind. My folded up clothes kept on being swept onto the floor, as I didn’t have anywhere to hang them. I fumbled along the corridor to see Sister, who told me “I don’t talk to patients”. Eventually I made so much fuss (I kept on tripping over clothes fallen on the floor) that Sister stomped down to my room. Told me I had a cupboard – then found the cupboard had been installed facing the wall! I could hear her bad-tempered attempts at wrenching it around, then ”Oh” as she looked in and discovered there were no hooks or rails – it was bare.
Every time I have to use a loo there, I curse. The John Radcliffe loos must be the most unfriendly ones around.
Good design
Just down the road is Bicester Community Hospital, with very disabled-friendly loos. With plenty of room for wheelchairs, more than adequate sturdy grab handles, which are painted bright red – not only easy to grab but give a cheerful note. If Bicester can get it right, others should copy. Let’s hope the
V&A can encourage better hospital design!
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then was duly put forward for election as a trustee at the AGM.
I was – and still am – a bit diffident about this. Although I’m a survivor myself, having contracted polio at the age of two in 1953, I’ve never really had any involvement in polio-specific organisations. My parents subscribed me to the BPF when it was still the Infantile Paralysis Fellowship, but as a child I hated seeing the bulletins, and was appalled when I found a photo of myself in one issue. At some point – I can’t now remember when – I pulled out of the BPF, but rejoined sometime in the 80s, and happily took out a life membership. When life membership was abolished, I felt badly let down, and chose not to rejoin. My new involvement with PSN is the only direct involvement I’ve had since that time. Meanwhile, of course, I have experienced the increasing incursions of PPS.
I do have experience, however, of active work around disability issues. I spent the last 25 years of my working life at Southwark Council, in London, where I became active in UNISON, and for some years was chair of Southwark UNISON disabled staff selforganised group, where I was regularly involved in issues around reasonable adjustments and disability discrimination. For me personally my biggest issue as a disabled person was blue badge parking, of which there was never nearly enough to meet the needs of our mobility-impaired members.
I have also got plenty of experience in the voluntary sector. I was very active as a tenant rep in my local area, and got so involved in housing issues that I subsequently moved into housing as my job, while at the same time co-founding a tenant management organisation in New Cross, which has now been managing over 150 homes, on behalf of Lewisham Council, for over 30 years, and of which I’m currently chair. In the 90s, too, I was chair of the Deptford Tenants & Residents Forum.
I have also been chair of a primary school board of governors, member of the management committee of the North Lewisham law centre, secretary of a wrestling club (my son was the wrestler, not me!), volunteer at Huntley Film Archive, and chair of Voluntary Action Lewisham. I am currently chair of the Quaker Family History Society. I graduated from Thames Polytechnic in 1973, then – much later – gained a master’s in the history of photography, from what is now the London College of Communication. This is probably already more than you wanted to know, but in the unlikely event you want to know more you could always visit my website, https://benbeck.co.uk.
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I have known about what initially was the Lincolnshire PostPolio Network (working name now Polio Survivors Network) for some years, having discovered for myself the value of their collection of research articles on the subject of polio and PPS.
When I learned, earlier this year, that this essential organisation now had only three trustees I immediately realised how great the need was for more people to put themselves forward. I made some initial enquiries, was invited to have a Zoom conversation with Simon, our Chair,
Introducing Our Recently Appointed Trustee – Ben
We offer a warm welcome Ben as a trustee for
Polio Survivors Network. We look forward to working together.
If you are inspired to think about becoming a trustee please get in touch for an informal chat.
It was lovely to see some of you at our Annual General Meeting last month. You are such a lovely bunch (please come up with suggestions for what a collective of Polio Survivors should be called). The AGM honored Hilary’s legacy and discussed the organisation’s ongoing mission to support polio survivors, particularly as they age, with emphasis on raising awareness among healthcare professionals about post-polio syndrome.
The meeting covered operational updates including financial reports, trustee appointments. We are so pleased to welcome Ben Beck our new trustee.
We have always said we would review our free membership and financial position when nearing £10,000 and that time is approaching. At our AGM this was mentioned with discussion on suggestions for raising funds, possibly asking for donations of hardware or stamps and the pros and cons of reintroducing a small membership fee. All in the room were in favour of such suggestions and we will be discussing all opportunities over the coming months. Again, please let us know your thoughts.
The group shared personal experiences and challenges faced by polio survivors, particularly in accessing appropriate medical care and benefits, while highlighting the importance of tailored physiotherapy and patient advocacy.
As always please get in touch with any thoughts you wish to share. Take care, Toni x
psnadmin@poliosurvivorsnetwork.org.uk
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From Our Readers …
Toni Writes …
Excellent newsletter! Thank you so much! I am in America, but had my polio in the UKJW
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SPPN to Close its Doors? PSN’s sister organisation is considering its future
by George Reid, SPPN’s Interim Chair Every silver lining has a cloud.
Few know better than polio survivors the impact of the polio vaccine. We’ve witnessed the overwhelming eradication of the scourge of polio in just about every developed country, reinforced by the highly effective vaccine programmes of governments and agencies worldwide, as well as by key organisations such as Rotary International.
So we in Scotland can hardly complain that the residual impact of polio here is now confined – though with some important exceptions – to an ageing and declining cohort. It must have always been known, and accepted, that charities such as SPPN would have a fixed lifespan, however long that might turn out to be.
And now, frankly, time and circumstances have caught up with us. Like other polio charities throughout the world, SPPN has been struggling for some years in a number of ways. We’re finding it very difficult to fill Trustee vacancies and indeed to find a permanent Chair. Membership has fallen greatly. As a formerly very active campaigning organisation, we often feel that we’re now no more than treading water.
So SPPN’s Trustees, with a very heavy heart, have reached the reluctant decision to recommend to members that the charity should be dissolved after 25 years of supporting and speaking up for polio survivors in Scotland. In that time, SPPN has been an important part of a ‘united front’ – alongside sister organisations such as PSN and BPF – in lobbying the respective governments and health services within the UK on behalf of survivors. SPPN looks back with huge pride and satisfaction on a rich history of activity and achievement. A history of compassion, dedication, and an unwavering commitment to improving lives.
So what does the future hold? It would have been far more difficult to close the doors of SPPN had it not been for our very positive relationship with PSN, which dates back to the founding of both organisations. In our own consultations with SPPN members (who overwhelmingly understand the reasons for dissolution) we have already been actively encouraging members to join and play an active part in PSN. In turn, PSN has been extremely understanding of SPPN’s difficulties, and indeed has told us that it may well look kindly on options to extend its own future reach to north of the border. We hope to build on this very positive relationship as we jointly look to look at ways
of providing future advice and support within PSN on Scottish issues.
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It’s hard to fully stave off regret when an active, campaigning charity finally runs out of steam in the way which it was always envisaged SPPN would. But those of us who intend to remain active campaigners in Scotland, even after SPPN ceases to exist, are determined to channel our enthusiasm within PSN, and to provide our friends in PSN with whatever structural and representative support they feel is helpful for the future.
And we hope to bring as many of our members as possible into PSN’s world.
Editor: We’re saddened by the closure of SPPN and deeply understand the challenges that led to this, as we face many of the same pressures. We offer a warm welcome to any SPPN members joining PSN and we’re here to support you however we can. We share the gratitude expressed above and encourage anyone to share their story, also anyone interested in becoming our Scotland Representative or exploring a trustee role we urge to get in touch. Your voice and energy could make a real difference.
Becoming A Hate Object In A Blizzard At Schiphol
While not as hairy as some of the other tales, this one was no less disruptive. My two ambi-lift handlers, a pragmatic, middle aged male and a vivacious, younger blonde woman, both Dutch, collected me from the terminal routinely and proceeded through a light blizzard towards the aircraft.
En route they explained that we would use a “stair-walker” for reasons unknown. These things have the appearance of a sack barrow with the wheels replaced by four prongs on the same axle. Once ensconced and duly strapped into the contraption it was activated and fairly zoomed up half a dozen of the steps then jerked to an abrupt halt, in-front of a couple of hundred passengers queuing to board – in a blizzard. In an instant I felt the heat of hundreds of eyes scowling at me. To the great credit of my handler, she very calmly explained that I was safely locked in position and she would summon a fresh battery from her colleague.
It turned out he was already on the case and they exchanged batteries on the apron. Once plugged in we were away again at a rate of knots and I was soon welcomed aboard. The five minutes or so while the situation was remedied did of course seem like a lot longer and my heart went out to those stuck at the foot of the steps in pretty inclement conditions.
Our member, Vic Baxter has written a series of articles entitled “Far Fetched” on the topic of “Dodgy Wheelchair Transfers” in faraway airports.
Please enjoy the third one entitled…
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Far Fetched by Vic Baxter
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I am an international polio lecturer on Zoom. I am a Professor of Microbiology at Touro University in New York. I am also a polio survivor. I knew Hillary Boone (founder of Polio Survivors Network) well.
I have a list of Polio Topics I love to present. I present all over the US, and I have presented to Beijing, Australia, and Canada. Below is the list.
Polio PowerPoint Presentations
Polio Then and Now
Bulbar Polio and the History of the Iron Lung Diseases, Syndromes, and Pesticides, that Mimic Polio Roosevelt: Guillain-Barre Syndrome or Polio? The Polio Vaccine & the Cutter Lab Incident (USA only) How Did We Get Polio?
Did Ice Cream Cause Polio? ( 10 min presentation)
COVID Epidemic vs the Polio Epidemics Using Comedy to Deal With Disability IVIG for PPS? Your Decision
Professor Mike
Michael Kossove is Professor Emeritus and an Adjunct Professor of Microbiology at Touro University’s School of Health Sciences. He is a polio researcher, international polio lecturer, and polio survivor. He can be reached by email to professormike2@aol.com.
We hope some of you reach out to Professor Mike directly but if you would like us
to organise a presentation of any of the above topics simply contact us (see back page) and we can make the necessary Zoom arrangements.
In need of funding for braces or custom-made shoes?
Apply for a grant from the Siegfried Memorial Fund by submitting a short application along with an estimate from an orthotist or custom shoe maker.
https://post-polio.org/siegfried-fund/
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Brownie McGhee-Triumph Over Adversity
by Moz Copestake
The Coronavirus vaccine controversy spread into music recently when Neil Young and Joni Mitchell took steps to remove their music from Spotify, calling on the company to “take action against the mass-misinformation events which continue to occur on its platform” after it hosted a podcast by Joe Rogan in which he interviewed an alleged spreader of misinformation about the Coronavirus, the discredited scientist Robert Malone.
Mitchell and Young, like me, overcame childhood polio in the pandemic of the 1940s and ‘50s, as did a number of musicians of our generation; Judy Collins, David Sanborn and, from this side of the Atlantic, Donovan, Steve Harley and most famously, the late Ian Dury. The vaccine introduced in the fifties largely eliminated the disease, certainly in the developed world. It’s little surprise then that these celebrities champion vaccination.
However, my focus is on a musician born a generation earlier. Walter Brown “Brownie” McGhee (November 30, 1915 – February 16, 1996) contracted his polio aged four in 1920. Different times, different culture. He was born in Knoxville, Tennessee, in the segregated Deep South and only fifty years after a bitter civil war to end slavery. Born to George Duffield and Zella McGhee (née Henley), who had married in Monroe, Tennessee in 1910, by the time the family moved to Kingsport in around 1921 his mother was no longer with them. George was a proficient guitarist and singer who accompanied his brother-in law, John Evans, on fiddle at local dances. It was John who built Brownie his first instrument, a five-string banjo, from a marshmallow box and a plank, which was given to him at the age of seven to help him recover, polio having badly crippled his right leg.
Recorded by the University of Washington in the late 1960s, Brownie said “Being from a broken home, don’t know what caused my mother and father to separate. Never bothered me any. I used to be a junk boy in my day. Don’t get the wrong impression. I used to pick up paper and garbage, iron and old tyres. Things like that.” Brownie had two older sisters, Ella and Verdia, who taught him to play piano and, more famously, a younger brother, Granville, who became known as “Stick” McGhee, because he was invariably seen steering Brownie around in a crude wooden cart using a pole. Stick was also a musician and wrote and recorded ‘Drinkin’ Wine Spo-Dee-O-Dee’ which got to number two in the American R&B charts in 1949 along with two cover versions that also charted that year. Jerry Lee Lewis took it into the Billboard Hot 100 in 1973 and it has subsequently been recorded by Johnny Burnette, Mike Bloomfield and Richard Thompson amongst others. Brownie would usually include the song in his sets.
In that University of Washington interview he went on to say, “I had a little one room shack, the sun shined in through the cracks, it rained in on me too.” Life was tough, but he made a fist of it as he says in his song ‘Don’t Pity Me’. The first song he learnt on his home made banjo was Jim Jackson’s ‘Kansas City Blues’, a tune he would often perform after he achieved fame and one which was also the basis for many other songs he would write. He liberated himself from the cart and managed to get around with crutches and sticks but, not being able to join in fully with other children, he spent time with the guitar, banjo and piano, gradually honing his style and ability. His father didn’t approve too much of strumming and encouraged a finger-picking style which served Brownie well over the next fifty years. He stayed on his father’s farm in Kingsport during the 1930s, helping with the farm work and singing with a local gospel band, The Golden Voices. Then he moved on to play with The Rabbit Foot Minstrels until, in 1937, he had an operation on his foot that enabled him to walk without crutches, although still with a noticeable limp. “I just wanted to pick up my guitar and start walking. And that’s just what I did.”
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His operation was funded by the American ‘March of Dimes’ programme, started by President Roosevelt that year, himself badly paralysed by polio. It was a foundation initiated to support polio victims and their families, with research into treatments and a possible vaccine. There is an interesting video on YouTube of Howard Keel singing ‘You’ll Never Walk Alone’ in 1952 (a song written in 1944 for the musical Carousel) for the March of Dimes Campaign which illustrates just how virulent polio then was.
Here I need to introduce Saunders Terrell, (born October 24, 1911, Greensboro, Georgia, died March 11, 1986, New York). Born into a farming family and blinded by an accident aged sixteen, he was an innovative and accomplished harmonica player, taught by his proficient musical father, Ruben. In the 1930s he moved to Durham where he played the tobacco warehouses along with The Reverend Gary Davis and Blind Boy Fuller. Sonny was invited to appear in the Carnegie Hall Spirituals To Swing concerts at New York’s Carnegie Hall in 1938 and 1939 just before he met Brownie and they both started recording with Blind Boy Fuller. He was inducted into The Hall Of Fame in 1986, the year he died.
Soon after his surgery Brownie and Sonny got together and played for the legendary Paul Robeson. Okeh Records’ scout J. B. Long, who’d already steered Blind Boy Fuller to Okeh, recorded Brownie as a solo artist in 1940 and, following the death of Blind Boy Fuller the following year, soon paired him up with Sonny Terry to record ‘Workingman’s Blues’. Brownie wrote ‘The Death Of Blind Boy Fuller’ to commemorate their late collaborator. The partnership with Sonny proved fruitful so Brownie relocated to New York in 1942 to room with Sonny and Huddle Ledbetter, better known as Leadbelly to you and me.
Soon after this, their friend, the Reverend Gary Davis also moved there to join them in the tight knit blues folk community, which included Woodie Guthrie, Big Bill Broonzy (with whom he recorded ‘Key To The Highway’ and the influential Pete Seeger. However, it was Sonny & Brownie who went on to have a successful recording and touring career together. They made over a dozen albums between 1950 and 1975, putting them in the perfect place to take advantage of the sixties blues and folk revival. Brownie also released some solo albums, about half the number recorded with Sonny, but it is hard to be precise due to collaborations, compilations and dubious releases. He also opened The Home Of The Blues Music School in 1942 where he taught for eight years. They were regarded as folk artists but also played as a jump blues band (a forerunner to rock and roll) in bands with Champion Jack Dupree and Big Chief Ellis under various guises such as the Jook House Rockers or the Buckhouse Five.
He began writing his own songs including ‘Sportin’ Life’ about the last letter he received from his mother. “My sister went and told her what kind of life I was living and she sent me a message that said, ‘I want you to change your ways.” During the war he performed with Sonny & Woody for The Office Of War Information radio shows which were often broadcast by the BBC to forces in the field. In 1947 he did hid first movie soundtrack for The Roosevelt Story, acknowledging his respect for another polio survivor and his role in the surgery which allowed him to walk again. In 1948 he had a big R&B hit with ‘My Fault’ on the Savoy label with Hal ‘Cornbred’ Singer accompanying him on tenor sax. There were many 78rpm singles released in the early years but it wasn’t until the start of the fifties that he got to release albums, both with Sonny and a solo artist. Many early releases were on the Folkways label and were initially mainly compilations of the forties recordings.
Why not search Brownie McGhee’s music on YouTube
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There were collaborations with Lightning Hopkins, Big Joe Williams and Earl Hooker. Brownie (often with Sonny) also pursued work in the theatre and films in the late fifties, appearing on Broadway in Tennessee Williams’ Cat On A Hot Tin Roof and Finian’s Rainbow and did a number of film soundtracks including for Face In A Crowd. Sonny & Brownie toured with Harry Belafonte and they also accepted a few invitations to tour Britain where there was some interest being shown in black American blues.
In the sixties the duo appeared on Pete Seeger’s Rainbow Quest TV show and there are excellent YouTube clips of them playing and being interviewed, one including the revelation that Sonny played his harmonica upside down. This is a ‘cross note’ technique for the diatonic harmonica to allow it to be played in a key other than that for which it was designed. Then, in the sixties, came the blues revival boom in Britain which wholeheartedly embraced the music of Sonny & Brownie, along with so many others. They, of course, embraced it right back. It was a time when they made many concert tours in Europe and appeared on the BBC and other European stations. Into the seventies and festival appearances here included The Lincoln Folk Festival in 1971. Rob Wheeler, a friend of mine, remembers “It was an amazing line up for a small festival, I can recall these two great blues men quite well, stomping and hollering and [playing] truly great harmonica, that’s what stood out for me. Great characters, having fun playing the blues for a bunch of English hippies in a rural Lincolnshire field!”
Not that Brownie and Sonny’s four decade relationship was without problems. They would frequently argue and fall out, occasionally on stage and, at times, arriving and leaving venues separately, having an amnesty purely for their time on stage. In 1974 they were given their own one off In Concert show by the BBC. Playing well-honed songs, they performed ‘Ride ‘n’ Roll’, ‘Livin’ With The Blues’, ‘Conversation With A River’, ‘Rock Island’, ‘Walk On’ and more. With lots of easy banter and reminiscences, the underlying tensions were skilfully contained, for a while at least. Soon after they had a big falling out whereby Sonny would appear with another guitarist and then Brownie would do a solo set.
Also in the seventies Brownie (occasionally with Sonny) made a number of TV series and film appearances, playing as the archetypal old blues performer. Many of these clips are great performances in their own right. In 1982 they were both awarded National Heritage Fellowships by The National Endowment for the Arts in the U.S. Ten years after Sonny’s death Brownie died of stomach cancer on February 16th, 1996 in Oakland California, not long after one of his last concert appearances at the Chicago Blues Festival the previous June. He was an inspiration to many, especially those afflicted by polio and other debilitating conditions. I like to think that some of the musicians listed at the beginning of this piece took some inspiration from him but I have no evidence (yet) to support that idea. He overcame considerable childhood hardship to become one of the great ambassadors for the blues in this country and I always enjoy it when a band says “We’d like to do a Brownie McGee number next”. His relationship with Sonny Terry may have been tempestuous but together they left an indelible mark on the second half of the last century and their music stands up today with many YouTube videos enabling us to witness their charisma.
This article was first published in Issue 247, July 2022 of Blues In Britain and we have been given permisison to reprint
Moz Copestake is a survivor who contracted polio in 1953. Now in retirement, he accepted a volunteer role as a presenter at Radio Dacorum community internet radio www.radiodacorum.org.uk
In the early 1950s, polio ran rife throughout the world, afflicting many thousands of children and killing a high proportion. It was also known as Infantile Paralysis. Doctor Jonas Salk was developing his ‘killed virus’ polio vaccine, testing first on animals, before moving on to limited scale trials on humans including, in 1953, on his own children – a great leap of faith. The following year extensive vaccination of around one million was carried out. The results were conclusive. Here was an effective protection against the disease. In April 1955 it was officially recognised as safe and immediately adopted by the World Health Organisation as an Essential Medicine. Inoculations began almost immediately, due to the alarming rise in cases, meaning that the disease was largely eliminated in the developed world from the mid fifties.
The project had been largely organised and funded by “The March of Dimes”, a non-profit foundation started in 1938 by American President Franklin D. Roosevelt, himself a victim of polio when aged 39 (although some historians now dispute this diagnosis), and his wife Eleanor. The name was coined as a play on “The March of Time” as a catchier title than the original “National Foundation for Infantile Paralysis”. There is a memorable YouTube of a short Howard Keel Newsreel, in support of the Foundation, singing “You’ll Never Walk Alone” from a rather grim polio ward in 1952. It gives some idea of the ages and conditions of patients of the day. https://www.youtube.com/watch? v=wvHQ5nDWOUI
At the same time, an alternative vaccine was being researched by Doctor Albert Sabin, based on a different technology – a live strain of the virus which did not cause paralysis but did create antibodies. This was not funded by The March of Dimes. Its clinical testing lagged a little behind the Salk vaccine. There are three types of polio virus, known as PV-1, PV-2 & PV-3. The ‘killed virus vaccine was effective against all three strains but a separate vaccine had to be developed for each of the three variants and these were proven individually throughout 1961 and 1962. They were then combined into a single dose vaccine. This had two big advantages – it was cheaper and was administered orally on a sugar cube, which most of us will be familiar with, rather than by injection.
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The legacy of Jonas Salk and Albert Sabin–names you may not be familiar with
by Moz Copestake
Despite these two giant steps forward, polio persisted in inflicting its longlasting symptoms throughout many poorer countries and those without a good health infrastructure. There were significant outbreaks in Spain and the Caribbean in the late fifties and early sixties. It continued to be rampant at times in South East Asia and Africa into the new millenium, despite the cost of the oral vaccine being well under one pound per dose. Some cultures and governments remained anti vaccine due to ignorance, superstition and cost considerations. Two of the strains, PV-2 and PV-3 have now been wholly eliminated, last recorded cases being reported in 1999 and 2012 respectively and declared eradicated in 2015 and 2019. This only leaves PV-1 at large in the modern world from the original virus strains, huge progress. However, a new strain has mutated, known as circulating vaccine-derived poliovirus, from the live virus used in vaccines. While this is not infectious in vaccinated populations, it does create infection in vulnerable populations, so that, there were more cases of the mutant reported in 2017 than of the original wild virus.
In India, the disease was finally eliminated in 2013, following a massive immunisation programme for its huge population. Zero cases were reported that year, not that the disease can ever be wholly eliminated, especially in unprotected populations, as the virus is quite resilient in sewage and untreated watercourses. Nigeria achieved a similar status in 2016. Herd immunity though, a concept we became familiar with during Covid, has reduced numbers exponentially. As of last year the ‘wild’ disease only remains endemic in Afghanistan and Pakistan, reporting less than 50 cases altogether – down from a high of almost 200 in 2019 – although the mutant variant also circulates in these areas.
Oral vaccinations today have become a routine part of childhood with parents protecting their families, barely aware of the suffering the virus once spread among the global population, with epidemics emerging in a constant ebb and flow throughout the world in the first half of the last century and earlier, affecting millions. While it often killed, attacking the nervous and respiratory systems after being ingested, usually through contaminated water, the survivors were left with severely wasted limbs or breathing difficulties which could confine them to an iron lung for long periods, or even the rest of their lives.
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It is frustrating to see the actions of antivaxxers discrediting vaccination, raising fears in the population and risking a new pandemic. They cannot realise what’s at stake and the misery that it will cause if polio again runs rampant in the world.
As the name ‘Infantile Paralysis’ infers, this is largely a disease affecting the very young, before their immune system has developed itself, although it can affect anyone. As the young are still growing, the muscle and skeletal development is impaired from the date of infection, preventing normal growth or usage, leaving victims with shorter arms and/or legs with restricted mobility. Unlike many diseases, these are not conditions which improve over time, rather they weaken so that sufferers invariably are diagnosed with Post Polio Syndrome (PPS) as they get older. As the disease has largely disappeared in the last half century, this manifests itself in the now aging population, at least those surviving.
It is impossible to understand the difficulties that polio victims have faced in their lives unless you are one of them, they are many and various with the old cliché ‘Everyone’s journey is different’ being wholly applicable here. The Welfare State was in its infancy in Britain halfway through the last century. Those afflicted had to make their way in the world with little help, although the newly formed National Health Service was a boon, and many of them made a good fist of it, leading relatively normal lives. I can say that with some authority as I contracted polio in 1953 as a one-year-old. It has been tough at times but I am confident we had it much easier in this country than many of my contemporaries abroad. That said, PPS is ratchetting up the difficulties scale in mobility, scoliosis, fatigue and discomfort.
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Newsletter Library on Polio Survivors Network Website
Our back catalogue of newsletters is available on our website www.poliosurvivorsnetwork.org.uk
Click ‘Newsletters’ from the menu
Researching vaccines that made me and friends ill in the past
by Barbara Taverner
Repeat flu vaccines may have led to death of my friend? She was with us one minute, running Devon IBS groups in Exmouth hospital, tripped over a flag stone, broke her wrist, then flu vaccine, flu, gone within weeks, a perfectly healthy woman. I and both my sons have likely been damaged with vaccines from the 1960’s to 1975. Hep B vaccine 1978 caused M.S? Even the plague of Justinian 541-542 demonstrated symptoms of M.E and excessive sleeping and so on. Florence Nightingale caught flu – possibly a mild form of bubonic plague, she then only physically nursed for two years as became bed bound were she amongst other things invent the Pie chart, that is an interesting story.
l was so ill with rigours as a nurse at Royal Free in 1958. All our hospital beds were full so l was sent home. And 1963 and again 1968 ill with flu viruses and in 1975 after flu vaccine. I had polio vaccines 1955/56 as a nurse and 1961 as a midwife. Had severe tracheitis 1956 and nurses going down like flies with strep throats and being barrier nursed in a twelve bedded dormitory. That’s where a doctor later thought l had had polio, whilst nursing children in iron lungs with polio, eventually flu March 1971 and l never recovered mutation of coxsackie b3 and b4 with flaccid paralysis.
As for polio vaccine 1955 some 250 cases of polio caused by some patches of polio vaccine. There was no system in place to be compensated by vaccine harm to some people.
Interesting study here https://www.ncbi.nlm.nih.gov/books/NBK221112/
| International Ventilator Users Networkwww.ventnews.orgDisabled Motoring UKwww.dmukdiscounts.co.ukPain UKwww.painuk.orgNational Voiceswww.nationalvoices.org.ukNeurological Alliancewww.neural.org.ukRare Disease UKwww.raredisease.org.ukEnd Polio Now – Rotary Internationalwww.endpolio.orgEuropean Polio Unionwww.europeanpolio.eu | British Polio Fellowshiphttps://britishpolio.org.ukPost-Polio Health Internationalwww.post-polio.orgPA Polio Survivors Networkhttps://polionetwork.orgPolio Quebecwww.polioquebec.org/eng/Polio Survivors of Marinwww.facebook.com/groups/163909760771171Atlanta Post-Polio Associationwww.atlantapostpolio.comOhio Polio Networkwww.ohiopolionetwork.orgPolio Australiawww.poliohealth.org.au |
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Useful Resources
Chair Simon Parritt simon.parritt@poliosurvivorsnetwork.org.uk
Trustee Zsuzsanna Snarey zsuzsanna.snarey@poliosurvivorsnetwork.org.uk
Trustee Verité Reily-Collins verite.reilycollins@poliosurvivorsnetwork.org.uk
Trustee Ben Beck ben.beck@poliosurvivorsnetwork.org.uk
Admin & Enquiries Toni Dunlop psnadmin@poliosurvivorsnetwork.org.uk 07480 110334
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Management Committee
Post Polio Matters Volume 11 Issue 10 Read More »
Post Polio Matters Volume 11 Issue 9
POST POLIO MATTERS
May 2025 www.poliosurvivorsnetwork.org.uk
Polio Survivors Network Newsletter — Volume 11 Issue 9 of 12 [Edition 129]
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network
The polio vaccine marked a critical milestone, turning a time of fear into a new era of hope. The journey isn’t over – it extends beyond vaccination.
Polio survivors embody resilience, transforming challenges into extraordinary triumphs.
Their lived experiences not only inspire but also hold profound lessons for the future of healthcare.
Inspiring Resilience, Advancing Healthcare
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Annual General Meeting Invitation 3
Message From Our Chair 4
Zsuzsi’s Thoughts on Experiences with the Occupational Therapist 7
Toni Writes / From Our Readers 10
From Our Readers / A New Way to Donate 11
Talk to Us, Big Polio Survivor Survey 12
Far Fetched by Vic Baxter 13
Childhood illnesses by Moz Copestake / Polio in Music 15
Finding a Physiotherapist with experience of Post-Polio Syndrome 17
The Lighter Side 18
A Few Things From Verite 9
An Interview with Emily 19
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This publication is provided free thanks to the generous donations of our lovely members. We are very grateful!
VLP & Breakthrough in Next-Generation Polio Vaccines 21
James Carmichael Book / Useful Resources Managment committee / Contact details / Donation info
23 Back page
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We are delighted to invite you to our 2025 Annual General Meeting (AGM) which will be held online on
Friday, 25 July at 2:00 p.m. (BST)
This is a wonderful opportunity to come together, reflect on our achievements and discuss the future for Polio Survivors Network
Please save the date.
We are also calling on you to consider if you could contribute as a trustee? These roles are vital in guiding our future and ensuring we achieve our goals. Whether you are passionate about polio survivor advocacy, fundraising or bring valuable personal experience, your voice could make a meaningful impact.
For details on how to join the meeting please email psnadmin@poliosurvivorsnetwork.org.uk
Together, we can make a difference
vaccine or seek any profit from it to maximize its global distribution. This year is the 30th anniversary of his death.
This year is also the 70 anniversary since I contracted polio age 5 in January 1956 in Putney, Southwest London after only one term at school. I didn’t return for 2 years. I was totally paralysed, my breathing, swallowing and all limbs were affected. Sadly, living in the UK meant there had been no mass vaccination, as it was resisted for over 2 years until public opinion overwhelmed government policy, but in this time many of us caught polio unnecessarily. There was a combination of reasons for the UK’s resistance including, political, national and medical pride, economic and that old chestnut, fear of the vaccine. th
It was particularly hard for my mother who had always feared I would get polio and had desperately tried to get us vaccinated following the US vaccination programs in 1955. My father tried to obtain the vaccine as his work involved travel to the US, and when visiting my aunt who was living is the US having married an American GI. Her family and my cousins had been vaccinated a year earlier, but all efforts came to nothing, and my mother’s premonition came to be and I caught polio. Polio panic amongst parents was frequent at each outbreak at that time, and unusually and unfortunately for me, I contracted the worst strain during the Christmas holidays with only a few local cases reported.
IT WASN’T ALL BAD
Unlike many, I recall almost everything, from that first incredible headache and fever to my admission and then emergency transfer the Western Fever Hospital in Fulham. I was put in the iron lung and had a naso-gastric tube inserted. Though I must have been scared, my memory from the ambulance transfer to the Iron Lung and the naso-gastric feeding wasn’t all negative. I remember the doctors and nurses explaining everything to me, what was going to happen and when, why and how – presumably in a 5-year-old vocabulary but, non-the-less, I felt safe and knew in my head I just had to do what they said as every muscle seemed to be painful at the slightest touch. I think this was key to my positive experience of the iron lung, which I called my Spaceship, and probably helped me avoid having a tracheostomy tube fitted. The tube feeding was ok as I could at least taste some things like the raw egg
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Message From Our Chair
TWO 70 YEAR ANNIVERSARIES
This year is the 70 anniversary of Jonas Salk’s polio vaccine being announced as safe and a mass vaccination programme being instigated in the USA. He had already vaccinated his own children in 1953, and in 1954 he tested the vaccine on about one million children, known as the polio pioneers. He chose to not patent the th
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and milk mix or imagined I could, and looked forward to it as the yellow liquid was poured in above me. Imagine giving raw egg and milk today as a feed to a 5-year-old in intensive care.
Each morning events were heralded by a large speaker hanging in the middle of the ward booming out the tune for Housewives Choice at 8.55 am, a tune that still brings back memories, again though not traumatic. My physio would arrive through the ward’s doors for my daily visit or rather struggle which though painful she was always a caring, kind and communicative experience. As I improved, they would open the iron lung each day, at first for a few minutes and then slowly increasing the time, until after a week, I made it to the rocking bed.
IT’S HOW – NOT JUST WHAT
Apart from sharing with you just a little snippet of my journey that so many of you will also have had. I wanted to reflect on how my experience of the HOW, not just the WHAT, of the nursing and medical treatment shaped my experienced in my journey to who I am now as polio survivor, 70 years on. I reflect on how deeply these early experiences have affected many of us and our relationships with, not just our own bodies and identities, but also our expectations, trust and relationships with others especially medics and health professionals and our experiences as we age with PPS.
I was very lucky, as those who looked after me for the first few critical months were not just kind to a small 5-year-old on the edge of life and, or, total paralysis, but they were always honest and communicative involving me in everything in a way that I could understand by communicating and explaining. There are of course drawbacks to having had to be ‘a little adult’ back then as it in many ways it robs you of innocence, separates you form your peers and of having many aspects of childhood, but in critical times, choices are limited.
AGEING AS A POLIO SURVIVOR
So today as most of us face the normal conditions that that come with age, they are complicated, if not caused by our PPS. But what we expect and how we feel about our medical and PPS care is surely deeply influenced by our early life experiences. I find it hard to find myself facing a system that rarely has the time or perhaps even inclination to see that the HOW is as important in treatment and care delivery as the WHAT. After over 35 years as a psychologist, I am even more acutely aware and convinced of the importance of this. Whilst I am a huge fan of the benefits of health technology and its potential to deliver better outcomes, I fear we are failing to address the fact that we are essentially whole human beings, not just a collection of different body parts and
processes that can be distributed to their own designated speciality, department or consultant teams. As Polio Survivors surely, we have learnt that this isn’t the right emphasis, just as poliomyelitis wasn’t just a motor neuron issue causing some paralysis to be overcome but a global lifelong whole person experience impacting in individual ways physically, emotionally psychologically and socially.
CHALLENGING NOT DIFFICULT
I suspect that this is why some of us can be so seen as so challenging to current system and medical and social professionals, even if this is often portrayed as being difficult patients or people. I fear that in the current climate there is not enough emphasis on the time and space given to that critical element, the clinician/patient relationship. Even the so-called ‘care’ that so many of us increasingly need to live our lives has been reduced, devalued and formulated into ADLs (Activities of Daily Living) and PIP descriptors as timed tasks like washing dressing and feeding, reducing them to tasks being done FOR not WITH us. This is not good enough.
DO WE STILL HAVE A UNIQUE VOICE?
We could still I feel have a unique voice as survivors of that global epidemic they forgot, when COVID inevitably knocked on our door 5 years ago, demonstrating how much we fail to learn from the past, and our past. We have much to offer if only to demonstrate what good holistic healthcare is, or should be, and how we are all whole human beings and require to be treated in order to thrive, and not as economic units, a human resource, or passive recipients of care or treatment episodes. Ultimately this is not about money and funding, it is about a philosophy and how that impacts training and policy.
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It is a sorry state of affairs when polio survivors around the world must give up hours of their time to research their medical condiiton.
Hilary Boone
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Zsuzsi’s Thoughts on Experiences with the Occupational Therapist
For some time now I have been experiencing difficulties in standing up from a chair and I have to lean on the seat with my right arm while supporting my body with the left arm on something like the table or the back of another chair. This is not too difficult in our ensuite bathroom where there is a towel rail opposite the toilet but there is only a washbasin in the downstairs toilet to hang on to.
I contacted my GP who referred me to the occupational therapist who came out to see how he could help me. I was hoping for a rail on the wall, like there is in public disabled toilets but I was told that it could only be fitted on a solid brick wall.
The occupational therapist decided that my “hairdresser stool” on castors was much too dangerous and advised a raised seat with a back and arms. This works very well but it is not mobile and so it doesn’t really help when I am cooking and have to move between the hob, the sink and the fridge. He also advised a raised toilet seat with arm rests, and these arrived from the Red Cross on loan. He came out a week later to see how I was getting on with these mobility aids. He also left a catalogue for Independent Living with an extensive range of mobility and disability aids.
The raised seat for the kitchen works very well and I can use it to practice standing up and sitting down but not for cooking and food preparation. The raised toilet seat was easier to get up from, but I was not able to lean on the side arms because they were too high for me. So, it was taken away and replaced with just a surround of the toilet with arms to help me get up. It was not stable enough and I was not able to use it, so that was taken away as well. I sent away for a grab rail and a locator to find the wooden struts inside the wall where the grab rail could be fitted, and my husband and I worked out the best place to fix the grab rail to. He did a great job. It works very well and because I don’t exert a great force on it. I am sure that it will last longer than I do.
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I must say that the occupational therapist did try his best to help me, and it was useful to be able try out these products without having to purchase them. They come on permanent loan.
I am also very cautious about using my rolling stool without a back or armrests hoping that it will not be the cause of an accident, but without it I would not be able to carry on all the things which I need to do. It can be lowered and raised as well as move around, so I can get things from the vegetable box which is at the bottom of the fridge and also wash the floor.
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At first I welcomed the announcement of NHS England’s demise – until I heard it was being taken over by the Department of Health. So nothing changes! Wes Streeting (Minister of Health) seems to have got the bit between his teeth, sweeping Whitehall clean of the old mess – but I can’t see anything changing for the better.
Streeting speaks of giving local leaders the tools they need to deliver on the government’s three shifts for the NHS this move is intended to “liberate” NHS staff and local NHS leaders, “setting them free from over-centralisation” – well I have just seen pigs flying past the window!
When will Whitehall and its politicians realise we don’t need them and all their impractical ‘initiatives’ creating paperwork and confusion. What we need is Clinicians in charge, who will provide what WE need – not airy fairy “innovations”.
As Chris Naylor of The King’s Fund says if “The government wants a ‘neighbourhood health service’. The first step is to agree what that means”.
Instead, the bureaucrats will make more cuts, to pay for the “new” initiatives that the civil servants come up with. This will mean more crazy ideas to fill forms, meanwhile the PBP (poor blxxdy patient) i.e. US, will suffer even more. Unless we PBPs take matters into our own hands!
Do YOU know what services are needed? If so, now is the time to demand these with Whitehall in turmoil. But if patients know what is needed locally, could it be worthwhile to demand this now. Anyone who already had set out a plan for NHS services could find that the Department of Health will look favourably on funding for setting it up. Anything that will make them look good in the eyes of the voters! So if you know a service is needed locally, from a Falls Prevention Clinic, Early Diagnosis Unit, Pain Clinic, etc go get support from:
Your MP
Your GP and / or their surgery Patient Participation Groups (PPGs) Charities
Put in your demands, pronto. If you don’t ask, you don’t get. GO TO IT AND MAY THE BEST PATIENT-FOCUSSED PLANS WIN!
A Few Things From Verite
NOW IS THE TIME TO FIX THE NHS
Flies on the walls of Whitehall must have buzzing ears with all the gossip flying around. Now that Amanda Pritchard (late CEO of NHS England) has resigned and then the shock announcement that NHS England was being dissolved, things must be topsy-turvey along the corridors.
Whether your expertise lies in finance, fundraising, being a great listener or lived experience there is value in what you bring to the table.
Being a trustee isn’t just about giving back; it’s also about joining a group of passionate and inspiring people, full of stories like these I found in the archives…
One involves a parrot that, after some enthusiastic polio-awareness training by its owner, started squawking, “Wear your braces!” to visitors – a surprising but memorable ambassador for the cause. Another favourite is the tale of the “runaway wheelchair” at a PSN event. An adventurous attendee discovered a slope and some unexpected speed, turning a simple demonstration into a hilarious story that’s been shared for years!
Something to think about. We would love to welcome you, whether as a trustee or in any way as a supporter of our work.
Take care, Toni x
psnadmin@poliosurvivorsnetwork.org.uk
Have you ever considered taking on a role that supports a fantastic cause and makes a real difference in people’s lives? Polio Survivors Network is looking for new trustees and it might be something for you to think about.
As a trustee, you’d play a part in helping PSN continue its great work—guiding the organization, sharing ideas, and using your unique skills to make a positive impact.
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From Our Readers …
Toni Writes …
Thank you, it’s always interesting to hear what others are up to. Best wishes for 2025 – KS
Thank you for your fine newsletter, I shared it with a few of our USA newsletter editors – DS Thank you for the excellent newsletter – PK
Wear Your BRaces!
Congratulations on the new Newsletter format. I do like it – fresh, bouncy and the cartoons lighten it up – VR-C
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From Our Readers (continued)
Thank you for accepting me as a member, I have just found your recent newsletter and am so impressed with it, thank you for all the hard work that I know goes into it – SJ
Can you help? Could you write to your local MP?
Our member Marianne has asked for support in the campaign to reform CHC. She is hopeful that if enough people get behind the campaign demand can be made for a much needed overhaul to the current system and this would benefit a huge number of people.
https://reformcontinuinghealthcare7.wordpress.com/
Editor: A paper copy of this template is included in the posted newsletters
A new way to donate
Polio Survivors Network has teamed up with Visufund to provide an interactive donation experience. Donations from £2 mean a digital flower to help us reach our target of £50 and make our vase of forget-me-nots look much prettier.
Polio Survivors Network Annual Report 2024 is available now by request.
Email: psnadmin@poliosurvivorsnetwork.org.uk or use the contact details listed on the back cover.
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As well as being a fantastic resource for support for British polio survivors, the British Polio Fellowship have recently launched their ‘Big Survey for Polio Survivors’. Can we ask that you please support them by providing your comments.
To complete the survey online go to: https://www.surveymonkey.com/r/BigSurvey2025 To download a paper copy to print at home:
https://www.britishpolio.org.uk/post/bpf-launches-survey-to-gather-viewsfrom-polio-survivors To request a printed copy in the post: Call British Polio Fellowship on 0800 043 1935 (Mon – Fri 10am – 3pm)
0800 043 1935 (Mon to Fri 10am – 3pm)
info@britishpolio.org.uk
Our member, Vic Baxter has written a series of articles entitled “Far Fetched” on the topic of “Dodgy Wheelchair Transfers” in faraway airports.
Please enjoy the second one entitled…
Immigration Captain Detains Baku Airport Managing Director
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Far Fetched – Vic Baxter
Baku airport can be a sleepy location on a Sunday afternoon. Although obtaining a visa on arrival can be expensive for the unprepared, at $100 for visa photos and when an “escalated” weekend visa price is brought to bear. I therefore elected to spend eight hours “in transit” rather than “land myself”, as I was en route to Kazakhstan, with no need of a visa for Azerbaijan.
The lovely lass propelling my wheelchair took fright at this, explaining that the airside elevator to the upper level had been out of service for several months, meaning that I would have to use the one that was “land side”, thereby necessitating a visa.
I had no reason to disbelieve her but decided to dig my heels in and proceed to transit by whatever means necessary.
As happens in Former Soviet Union countries this required escalation to the next level. A rather surly looking supervisor therefore showed up and remonstrated in a perfect blend of Azerbaijani and Russian, raising his voice more and more as he vented his frustration at my decision.
I listened him into the ground and asked if we could escalate further in our quest for a solution.
Several levels later the Managing Director of the airport appeared in all his glory, complete with hand made shoes and a golf club badge on his blazer that showed membership of the recently completed $50 million golf course commissioned by The President himself.
He had one more try to get me to climb the fifty stairs to the transit lounge, stating that he’d viewed me on CCTV doing so a year or two before. I stuck to my guns stating that my condition had deteriorated since then, which it had.
At this juncture he pointed out that the Immigration Department had departed for the day and so he would personally smuggle me “into the country” in order to use the “land side” lift to the next level, and from there
My eight hours in the Transit Lounge passed and he appeared again as the only person with enough clout to conduct the process in reverse, and off we went.
On this occasion the timing was not so good. Around two dozen fearsome Immigration Officers had arrived in their formidable outfits with high fronted peak caps and jackboots abounding. My “very senior” wheelchair pusher froze, then started to tip toe towards the runway as we had the commandant with his back to us while briefing his team. At this point I couldn’t resist saluting the group from my wheelchair, which gave the game away as some were smiling while others instinctively saluted back. At this point my accomplice intuitively broke into a run. Well, I think you can imagine the chaos that ensued, at least until the identity of my wheelchair pusher was established.
I was boarded with no further ado and had the privilege of being waved off by the airport CEO and the Head of Immigration.
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Our PSN library features more than 450 articles!
into the Transit Lounge; but that if we were caught we could get two years in prison.
I responded that “at least we would be together for our stint in chokie”. He grimaced and off we went through the deserted immigration turnstiles.
I have already written about my brush with polio and, as it happened when I was an infant, I have no memories of it. I do have vague memories of being in bed in hospital when there was a sort of play time when children would jump out of bed to play with a selection of toys. The quickest got the best. I couldn’t get out of bed and waited for someone to lift me down. One day, one kind lady who had spotted my plight lifted me down before playtime began and got me to my toy of choice (a sit in car I think). It was a moment of joy, as was my first day home when I was sat in the garden on a roller and had my photograph taken – sadly a picture now lost but my mother had for many years.
I was unlucky insofar as the polio vaccine was rapidly introduced in 1954, the year after I contracted the disease. I am delighted that so many people in the developed world have been saved from the disease by this vaccine, where it has all but been wholly eradicated, but disgusted that such a cheap and cost effective preventative medicine has not been universally rolled out to the world meaning it continues to inflict so much misery on so many. Shame on you all.
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Childhood illnesses by Moz Copestake
For the next six years I would return to Birmingham Orthopaedic Hospital on Broad Street regularly to have a plaster cast fitted. This was ostensibly to prevent my foot and leg deforming as I grew but I don’t have any great confidence that it worked. I would go into the treatment room where my foot and lower leg would be put into a stockinette and then plaster bandages wrapped around up to my knee. The bandages came on green spools which were soaked in water to soften the plaster. I then had to wait for the plaster to set and then the doctor would return and saw a split down the middle an electric with circular saw. The edges would
be folded back and trimmed so that I could get my leg out and I was given the cast to take home. I would get four or five spools each visit and look forward to being given the empty spools which became makeshift toys back at home. I ended up with quite a collection. Each night, as I went to bed, this cast would be tightly strapped onto my leg with bandages to correct my foot as I grew. It was uncomfortable and I didn’t like having to wear it.
I also had to wear an iron calliper in the day which would locate into a slot in my orthopaedic boot while the other end was strapped around my knee – also to keep my foot in place as I grew. Another uncomfortable and not hugely successful imposition. I rather rebelled against both the plaster and the calliper and my parents agreed that neither were doing much good so, at around eight, both were abandoned and I started wearing ordinary shoes.
Other than that I had things like chickenpox, a time of isolation up in my
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bedroom. I could look out of the window, wistfully watching the other children playing outside in the street. My dad had recently bought a set of Arthur Mee Encyclopaedia and I read all of the Aesop’s fables and Brer Rabbit stories, a lot of Greek mythology. I think I was about ten.
Of course I had the inevitable coughs and colds and would be medicated with Owbridges cough syrup and Zambuk menthol rub. My mother used to make her own medicine from an onion stood in strawberry vinegar mixed with onion and fresh lemon juice. There were quite a lot of medications I remember for various bumps and scrapes, largely for the invocative smells like Germolene and Vaseline. I also had precautionary medicines like Cod Liver Oil & Malt or Rosehip syrup.
Other childhood diseases I caught as an adult in my late twenties– both German measles and mumps. I had both at the same time as my daughter and it was, strangely, a great bonding time. We kept as separate as we could from my wife and son, and did artwork together or played board games. I did a collage of a ballerina practicing in a mirror which I subsequently framed and it hangs on our wall, albeit rather badly faded now.
In April Moz Copestake was involved in two polio related events under the umbrella “Polio in Music”. On Saturday 12th April he made an audio visual presentation to The North London Branch at their monthly meeting in Potters Bar and then, on the following Friday (Good Friday – 18th), a show on Radio Dacorum along with guest Dr. Simon Shaw. who was instrumental in formulating The Optimal Clinical Pathway for polio survivors.
Moz is a survivor who contracted polio in 1953. Now in retirement, he accepted a volunteer role as a presenter at Radio Dacorum community radio www.radiodacorum.org.uk . It’s internet radio so you can pick it up via this link anywhere in the country … anywhere in the world. He also had a brush with throat cancer in 2018 but, after surgery & radiotherapy, he was given the ‘all clear’ two years ago.
Polio in Music
Finding a Physiotherapist with experience of Post-Polio Syndrome
Hello, I am a private physiotherapist specialising in older adult community therapy and neurological conditions. I have been treating one of the members and Trustees of the Polio Survivors Network – Vertie Reilly-Collins. She tells me how difficult it is for polio survivors to find a Physiotherapist with knowledge and experience to help them and thinks many readers might find the information below helpful.
If you would like to request an assessment or to contact me to see if I can help you, my details are:
Helen Graham
Mobile no: 07768 687359
Email: helenphysio.oxford@outlook.com Website: www.helengrahamphysiotherapy.co.uk You might be interested in the recent blog on the website about strength training and the importance of protein for people with post-polio syndrome. I work in and around Oxford (and also soon in Gower, Wales). If you don’t live in these areas but want a private physiotherapist who has experience with polio survivors, you can go to the Physio2U Directory on the Chartered Society of Physiotherapy website. If you put in your post code it will list all the private physiotherapists in your area and tell you what they specialise in. Because post-polio syndrome is unfortunately a ‘niche’ area, you’re unlikely to find this listed as a specialism, but if you search under ‘Neurology’ hopefully you will find a suitable therapist there. Good luck!
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He says “I have always enjoyed my music and have a show ‘Moz the Hippy’ on Friday afternoons. It’s not all late sixties Summer of Love songs but that’s where my roots are.” You may be surprised by some of the musicians who contracted polio, before the vaccine was rolled out in the mid-fifties, although it was slower and later in many parts of the world than here in the UK. Everyone will know of Ian Drury, who we sadly lost at the turn of the millennium, but there are several more big names, some of whom are still active today.
Turn on, tune in, chill out – Music of peace and love. The radio show will be available after airing on this website www.mixcloud.com/radiodacorum/ for anyone who misses it.
You know you’re getting older when your back goes out more than you do.
At your age, you need glasses… not for your eyesight, but for the wine!
Now that I’ve gotten older, everything’s finally starting to click for me. My knees, my back, my neck …
What goes up but never comes down? Your age.
Age isn’t about how many candles are on the cake; it’s about how much you can eat without worrying about your waistline!
“OAP discounts”: finally getting paid back for all those years you paid full price
At a certain age, you start referring to naps as “power recharges”—and no one argues with you.
An old woman is sitting at a bar when an older gentleman sits down beside her. “So,” he says, “do I come here often?”
You don’t need an app to track your steps because every creak in your knees keeps count for you.
These are not grey hairs, they are wisdom highlights.
You’re not getting old; you’re becoming a classic.
Age is an issue of mind over matter. If you don’t mind getting older, then it really doesn’t matter.
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As we gracefully – or perhaps clumsily – age, we begin to notice the peculiarities of life with a more humorous lens. Wrinkles are no longer mere lines on our faces but rather a roadmap of laughter and adventures. We find ourselves relating more to the tortoise than the hare, embracing the slow and steady pace of life with a wink and a nod. And while our youthful days may be behind, there’s a certain charm in the freedom that comes with age; the ability to wear socks with sandals without a hint of irony and to declare 9 p.m. as a perfectly reasonable bedtime.
So, here’s to embracing the lighter side…
Still here, still standing, still unstoppable
The Lighter Side
A member wanted to remind all of this older but very interesting video from Polio Australia. Produced and uploaded by Mary-ann Liethof, now with Polio Australia – representing polio survivors throughout Australia.
Dr Stephen de Graaff – Post Polio Syndrome Part 1
https://www.youtube.com/watch?v=_Vl6WyVZLO0
Dr Stephen de Graaff – Post Polio Syndrome Part 2
https://www.youtube.com/watch?v=ezcLmrWfdXw
When did you start drawing, at what age?
I have always been in to art and right from being little I would make things out of boxes then progressed to drawing landscapes or objects. I held back my talent at school as I thought other people were so much better than me which left me feeling shy about my own skills. Around age 15 I started to really explore what I could do and experiment with different materials.
How did you get started?
I mainly started with simple cartoons either of animals or people. Over time I tested myself to see what I could achieve and even now am still surprising myself with my art with what I can do.
What is your favourite thing about being an artist and photographer?
I love being able to express my thoughts, feelings or emotions through art as I don’t always feel like I can find the right words. When I am drawing or painting for fun I can get so lost in what am doing that five hours later am still doing my art! I find it helps me to unwind, release anxiety and it is great therapy. I would say it is similar with my photography too – I love to be outside and exploring nature or the city. I particularly love zooming in on one object like a flower or a animal and examine its details and design, I feel it draws me closer to God and develops in me an appreciation of his love and wisdom in design.
Do you have a favourite piece you’ve created for the newsletter?
Each piece of my work has aspects that I particularly like but my favourite drawing is the girl looking into the ocean it relays two different views – wanting to explore but feeling too anxious to take a step or being peaceful and taking a moment to just stop and observe the waves as they come and go.
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An Interview with … Emily
We thought it would be a good idea to spend a few moments with Emily who is the artist behind many of the drawings, cartoons and photographs features in our newsletters. Let’s ask her a few questions …
I would say any of my photographs of animals are my favourite pieces but I especially like my little robin on a branch and also the squirrel eating a seed.
How do you hope your drawings impact the readers of the newsletter?
I hope through my drawings it allows those who need it, the ability to express how they’re feeling when trying to find the right words are too difficult or hard to explain giving them a sense of relief having something to relate too but also for others to understand how those suffering are feeling and the hardship they go through daily. But also so a sense of calm peace and joy to see the animals
What advice would you give to other artists looking to create impactful art for similar social/charity causes?
Find something that inspires you or your passionate about and allow the creative juices flow whatever way that might be. Art or photography does not need to mean something to people as long as it means something to yourself and is an expression of your own thoughts, feelings or emotions or is just simply something you like it makes you happy. There is never a wrong way to do art and there are not such thing as a bad photo as long as you’re happy with it that is all that matters.
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We would like to share with you research from the University of Leeds on next-generation polio vaccines using virus-like particles (VLPs). It seems that VLP-based vaccines are possibly safer, more affordable and have the potential to sustain polio eradication globally.
Below is a detailed overview of the advancements made by researchers, including Professors David Rowlands and Nicola Stonehouse. The study highlights collaborations with various institutions, such as the University of Oxford and others, funded by the World Health Organization (WHO).
Breakthrough in the next generation of polio vaccines
A more affordable, lower-risk polio vaccine is on the horizon. The research was led by the University of Leeds. They have taken a major step towards producing a more affordable and lower-risk polio vaccine using virus-like particles (VLPs). These particles mimic the outer protein shell of the poliovirus but are empty inside. This means there is no risk of infection, but the VLP still causes the immune system to respond. A research project is led by Professor David Rowlands, Emeritus Professor of Molecular Virology at the University of Leeds. He has tested the effectiveness of using different yeast, insect, mammalian and plant cells as expression systems to generate VLPs.
Thanks to research like this, we are already working with commercial partners to produce the next generation of polio vaccines.
VLPs produced in both yeast and insect cells can perform equally or better than the current inactivated polio vaccine (IPV), which creates an immune system response by using a killed version of the poliovirus. Professor Nicola Stonehouse is Chair in Molecular Biology at the University of Leeds School of Molecular and Cellular Biology and one of the senior authors on the paper. She said: “Any vaccine is only as effective as the number of children that it reaches. The key is to make vaccines universally accessible, as all children have a right to be protected from diseases such as polio, no matter where they live. Ultimately, VLPs would significantly contribute to vaccine fairness”. They are already working with commercial partners to produce the next generation of polio vaccines. Although they don’t yet know when these will be widely available, they are getting much closer to a polio-free future.
Currently, the inactivated Polio Virus (IPV) is relatively expensive to produce because it requires high levels of bio-containment to minimise the risk of leaks of live poliovirus, which could result in outbreaks. VLPs are non-infectious and would not need to be handled under such stringent bio-safety conditions. Oral polio vaccine (OPV), which contains live but weakened vaccine-virus, is also used in vaccination against polio.
Future polio vaccines
However, once all remaining strains of wild poliovirus have been successfully eradicated, OPV use will need to stop to eliminate a small risk
of circulating variant poliovirus that can be associated with its use. In populations where large numbers of people are unvaccinated and sewage disposal is poor, such strains can cause an outbreak through contact with faeces, often via contaminated water. When this happens for long enough the changes that make the live OPV safe, can revert back to be like wild poliovirus and can cause an outbreak.
At this time, the Inactivated Polio Virus (IPV) will be the only polio vaccine available to populations, but expensive manufacturing procedures make it unaffordable for lower-income countries. Non-infectious VLPs are easier to produce than current IPVs and the research has shown they are more temperature stable, thanks to genetic alteration of the outer shell. As they are non-infectious, this means they will be less expensive to produce, helping to improve equitable access to vaccination. It is very exciting to see this research being taken forward by industrial partners as a safer vaccine production strategy as we move towards a polio-free world.
The virus-like particles are not the only relatively recent breakthrough for polio vaccines. In 2020 a new version of OPV, called nOPV2 (novel oral polio vaccine type 2) was licensed for manufacture in Indonesia and has now been tested and made available for use world-wide. There are three types of polio virus, called 1, 2 and 3. Types 2 and 3 no longer exists as a wild virus, they were eradicated in 2015 and 2019 respectively.
However, within the OPV type 2 turns out to be the least stable of the three weakened viruses. Due to the remarkable success of the polio eradication effort, polio paralysis cases from circulating vaccine-derived polio virus (cVDPV), where weakened vaccine-derived virus has reverted to wild type, now outnumber global cases due to wild polio virus. While there were only 12 flaccid paralysis cases in 2023 caused by wild poliovirus, there were 524 linked to vaccine-derived polio. This is worrying for the polio eradication effort!
In response to cVDPV2 cases, scientists working for the Healthcare products Regulatory Agency (MHRA), including Professor Andrew Macadam who also worked with Leeds researchers on the VLP vaccine discussed above, helped American researchers to develop nOPV2. This vaccine will help to contain cVDPV2 outbreaks, while itself being 80% less likely to cause more cases compared to the original Sabin OPV, as it’s engineered to be much more stable.
As vaccination rates and sanitation broke down there was one case of cVDPV2 paralysis in Gaza recently and nOPV2 was successfully used there to contain the outbreak.
“This research shows that a critical new polio vaccine solution is on the horizon”
Dr Martin Eisenhawer, World Health Organisation
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| International Ventilator Users Networkwww.ventnews.orgDisabled Motoring UKwww.dmukdiscounts.co.ukPain UKwww.painuk.orgNational Voiceswww.nationalvoices.org.ukNeurological Alliancewww.neural.org.ukRare Disease UKwww.raredisease.org.ukEnd Polio Now – Rotary Internationalwww.endpolio.orgEuropean Polio Unionwww.europeanpolio.eu | British Polio Fellowshiphttps://britishpolio.org.ukPost-Polio Health Internationalwww.post-polio.orgPA Polio Survivors Networkhttps://polionetwork.orgPolio Quebecwww.polioquebec.org/eng/Polio Survivors of Marinwww.facebook.com/groups/163909760771171Atlanta Post-Polio Associationwww.atlantapostpolio.comOhio Polio Networkwww.ohiopolionetwork.orgPolio Australiawww.poliohealth.org.au |
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Useful Resources
We’re reaching out with an exciting opportunity to be part of a significant project that will honour the resilience and history of polio survivors in Britain.
James M. Carmichael, President of Kirkintilloch Rotary Club, is compiling a book that chronicles personal accounts from polio survivors and documents the campaign to eradicate the disease. This book aims to raise awareness and proceeds for the End Polio Now campaign. We invite you to share your stories or the experiences of your loved ones affected by polio. Your contributions will ensure that the memories and lessons of this public health battle are preserved and appreciated by future generations. Your stories are invaluable in preserving the history and raising awareness.
How to Participate:
Share your story or that of a loved one affected by polio.
Spread the word to others who might want to contribute.
All contributions will be fully consented before publication. We are sure that this book will be a meaningful and impactful resource.
Email your experience to us at psnadmin@poliosurvivorsnetwork.org.uk and we will get it to James.
Thank you for your support
Chair – Simon Parritt simon.parritt@poliosurvivorsnetwork.org.uk
Trustee – Zsuzsanna Snarey zsuzsanna.snarey@poliosurvivorsnetwork.org.uk
Trustee – Verité Reily-Collins verite.reilycollins@poliosurvivorsnetwork.org.uk
Trustee Vacancies – please contact Toni for more information
Operations Team
Admin & Enquiries – Toni Dunlop psnadmin@poliosurvivorsnetwork.org.uk 07480 110334
Flat 1, 356 Martin Way, Raynes Park, London, SW20 9BS
Please contact us if you would like to help with our work
With grateful thanks to a generous legacy from Ms A Brown we are able to keep membership FREE whilst our funds
remain above £10,000.00
UK Members receive newsletter by post and/or email (overseas members newsletters by email only)
All donations, small or large, towards our work are gratefully received Donate by PayPal to treasurer@poliosurvivorsnetwork.org.uk
Or by PayPal donate as below Or by bank transfer as below
Articles in this publication may be reprinted in full with acknowledgement of this Newsletter name, volume, issue and date. Exceptions are where written by an external author/newsletter when permission must be gained from the original author/s
.
This publication is provided 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.
Management Committee
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Post Polio Matters Volume 11 Issue 9 Read More »
Post Polio Matters Volume 11 Issue 8
POST POLIO MATTERS
January 2025 www.poliosurvivorsnetwork.org.uk
Polio survivors have overcome significant childhood illness, transforming their experiences into valuable insights. As they age, many face the additional challenge of post-polio syndrome, which brings renewed health issues. Despite this, they continue to support those in similar situations, including individuals with long COVID and advocate for greater recognition from the medical community.
Despite their resilience and the insights they offer, their voices are often overlooked.
Learning from the Past, Pushing to the Future
Polio Survivors Network Newsletter — Volume 11 Issue 8 of 12 [Edition 128]
Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network
The PSN library now features over 450 articles!
Polio survivors are working tirelessly to ensure their experiences contribute to improve care and in preparation for the future.
Their journey from overcoming childhood adversity to becoming vital pillars of a supportive network is a testament to their enduring spirit. They strive to ensure a better understanding and recognition within the healthcare system, helping to build a world that learns from their past to create a better tomorrow.
| Donations and Charity Incentives Paid(since last newsletter) | |
| 20.00 | |
| 9.66 | |
| 12.50 | |
| 441.91 | |
| 50.00 | |
| 20.00 | |
| Total | £554.07 |
| Donations raised at RB’s funeral via MuchLoved | 386.69 |
| Donation VS | |
| PayPal Giving Fund | |
| Donation E&J P | |
| Donations raised at HB’s funeral via MuchLoved (1st payment) | |
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| Donation EJ |
Message from our Chair 3
Zsuzsi’s Thoughts 4
Verite Reily-Collins Wonders 5
| Toni writes / From our readers | 7 |
| From our readers / Can you help? / Rare Patient Voice | 8 |
| Rest in peace Dr Richard Bruno / Videos from the PPSAG | 9 |
| Highlights from the Neuro Key Autumn Newsletter | 10 |
| Far fetched / 1930s bathchair halts jumbo at Atyrau airport | 11 |
| 1930s Bathchair Halts Jumbo at Atyrau Airport | 12 |
| From Carol at PA Polio Network (PPSN) / MHRA press release | 13 |
A Few More Thoughts from Verite 6
Resilience in the Face of Adversity 14
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This publication is provided free thanks to the generous donations of our lovely members. We are very grateful!
| Videos by the Polio Network Victoria / Useful resources | 15 |
| Managment committee / Contact details / Donation info | Back page |
For many years, Hilary was the force behind our newsletters. Her dedication to producing and editing these was nothing short of remarkable. During the challenging times of COVID-19, Hilary went above and beyond, printing the newsletters herself and increasing their frequency to meet the heightened needs of our members.
However, life has its way of introducing new rhythms. Over the years, the demands and pressures of daily life have grown. Many of our members are dealing with the late effects of polio and as we age, these effects become more pronounced. Increased medical appointments, the need for personal care and the natural decline in energy levels are just a few of the factors impacted our ability to maintain the same level of newsletter production.
Advancements in digital communication have changed the way we share information. Social media, email updates and our website provide quick and more immediate ways to connect. Fellow polio support charities across the world are also sharing their latest information in this way.
It is with a thoughtful heart that I share our decision to produce newsletters less frequently. We plan to produce newsletters when we have a full newsletter to share, this will vary depending on the number and types of articles/experiences shared with us. This adjustment will allow us to better manage the realities of our daily lives and ensure that when we do connect with you through our newsletter, it is in a meaningful way.
While we may not be in your letter box or inbox as often, we are here to support and to share experience. Our online presence and resources are always available and we encourage you to reach out and share your stories.
Thank you for your understanding and ongoing support. Together, we can continue to help one another, even if our newsletters come to you at a slightly different intervals.
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Message From Our Chair
As we enter a new year, it’s a fitting time to reflect on our journey and the road ahead. It has always been my privilege to share updates, insights and personal reflections through our newsletters. These pieces of communication have been a cornerstone of our community, weaving together the stories and experiences of those living with the late effects of polio.
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Zsuzsi’s Thoughts on Ways to Increase your Bone Density
People who had polio are often not able to run, walk for long distances, jump or do other bone strengthening exercises and are more at risk for fractures due to osteoporosis. Bone is an active living structure. Bone is constantly being turned over. The inside of our bones is constantly being broken down and rebuilt by specialist bone cells, osteoblasts and osteoclasts. Osteoblasts form new bones and add growth to existing bone tissue. Osteoclasts dissolve old, damaged bone tissue so it can be replaced with new healthier cells created by osteoblasts. As long as this process is in balance, our bones should stay healthy and strong. But, if the process becomes out of balance, our bodies start to break down more bone than we build. This can cause the bones to become weaker and more likely to break easily. This happens with polio survivors as we age.
To keep bones strong, you need to keep in mind the following:
If possible, do weight bearing exercise. Try walking as much as possible, a weighted vest helps.
1.
Strength training. Muscles pull on the bones and that encourages the bone building. Try doing squats, lunges, leg press, overhead press every day if possible.
2.
A balanced diet is important, with plenty of protein, calcium, vitamin D, some nuts, zinc, magnesium, collagen, green vegetables, eggs. Calcium supplements with vitamin D such as Adcal.
3.
4. Avoiding alcohol, stopping smoking, avoiding caffeine.
Bisphosphonates (Alendronate, Zoledronate) and also denosumab and romosozumab increase bone density. They work by slowing down the breakdown of the bone cells, but there are risks of side effects. There has been a very small incidence of atypical, or unusual fractures of the femur while on this treatment for many years. Some research has shown if 1,000 5.
Bones need to be loaded. The saying we all know is: “If you don’t use it, you lose it.” This applies to bones as well as muscles. Maximum bone density is achieved at age of 25 for women, age 30 for men. After that the bones start to lose their mass very gradually. Astronauts lose 1-2% of bone a month because of the lack of gravity.
A recent video showing the Princess of Wales playing with her family, set alarm bells jangling. This video was out-ofcharacter and posed questions such as: were the Royal family
being “used” to divert attention away from Darzi’s report damning NHS cancer care? A report highlighting how cancer care in the UK lags behind what is offered to patients in other countries etc! Read more here:
https://aftercancers.com/can-we-learn-from-royals-cancer-treatment/
Verite Reily-Collins Wonders … Can we learn from Royal’s Cancer Treatment?
people were taking drug treatments, less than 1 person would have an atypical thigh bone fracture. For this reason, a “drug holiday” is recommended from bisphosphonates after about 5 years to prevent this happening. If you have been offered drug treatment to benefit your bones, the benefits will outweigh any possible risks. It’s important to take your drug treatment correctly. Make sure you read – and understand – the leaflet that comes with your treatment.
6. HRT has been shown to increase bone mass in post-menopausal women. It is not now recommended because of the link with breast cancer. Men can also have deficiency in testosterone. 1 in 7 men have osteoporosis.
To measure bone density a kind of X-ray, called a DEXA scan is used. You lie fully clothed on a table, having removed metal fastenings, while the scanning arm moves over your body. An X-ray detector measures how much X-ray has passed through different parts of your body. It is then compared to those of a young adult, (known as a T-score), a healthy adult of your age, (known as a Zscore). The difference is calculated as a standard deviation score. Between -1 and -2.5 is mildly reduced bone mineral density or osteopenia. Below -2.5 means it is osteoporosis. But someone with low bone density may never break a bone while another with average bone density could break several. Other factors play a part such as age, sex and type of fall.
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Lord Darzi’s report spurs me to New Year’s Resolution! 80% of us can suffer side effects from treatment, so Lord Darzi’s recently published report on the NHS vindicates those of us who fight to get help with side effects; especially if we are ignored or treated like whistleblowers when we try.
It can be a constant fight for treatment; so with Darzi confirming the UK lags behind Europe for cancer care, it’s up to us to fight for what we need. My New Year’s Resolution is to help others get better care. Look at my website for information about products used in European hospitals to help deal with side effects of cancer drugs on our skin.
As an ex-Beauty Editor, this interests me. I developed skin problems from drug side effects, and Darzi’s report confirmed I was right to be concerned. Countries, such as France, Australia, USA, Japan – even Iceland – have worked with hospitals, researchers, charities etc. developing skincare products specifically for us.
Now these are available in the UK, I can offer some via my website. I can’t promise miracles, but they certainly helped me. I’ve looked for the cheapest prices, and Boots the Chemists seemed the best. You can order these skin care products here, and I keep an eye out for special offers.
https://aftercancers.com/dont-you-love-the-feeling-when-you-are-right/
Verite Reily-Collins
PSN Trustee, Health Journalist Owner of www.aftercancers.com veritegreenbee@gmail.com
A Few More Thoughts from Verite
I couldn’t agree more with the quote to the right from Hilary’s article ‘Polio Survivors Throw Doubt on Study’! Something clearly is amiss. Time and time again I receive queries, emails and phone calls from members or families of polio survivors who simply can’t find a consultant with experience, knowledge or sometimes even an interest in polio or what it means to be a survivor.
We need your help – have you had a positive experience with a consultant from anywhere in the UK even if this was a few years ago. We are hoping to compile a list of helpful contacts as recommended by our members. We know that not all healthcare professionals will be the right fit for each polio survivor but it’s a start. Please drop me a line with anyone you have had a good appointment with so that we can reach out to them to see if we can signpost our members their way. We hope we can find a handful to start with. Also if you have had the good fortune with a sympathetic GP please let us know about your experience, we want to help share the positive news too.
Is it just me or did 2024 simply fly by? There were so many more things I was planning to do but didn’t get to. I managed to book a short winter break to Budapest though so at least that broke up the dark nights a bit. You must have been to some interesting places in your time. Maybe drop me a line with a picture or a few words indicating your favourite trips and I can create a collage for the next newsletter?
Take care, Toni x
psnadmin@poliosurvivorsnetwork.org.uk
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From Our Readers …
IT IS A SORRY STATE OF AFFAIRS
WHEN POLIO SURVIVORS AROUND
THE WORLD MUST GIVE UP HOURS
OF THEIR TIME TO RESEARCH
THEIR MEDICAL CONDITION
Hilary Boone
Toni Writes …
Thank you very much for your kind invitation to PSN, and the emails containing newsletters. I have been struggling with new health issues this year. I hope to find some answers and methods of coping with them. Thank you, NS
Just received the newsletter and I want to congratulate you on a most interesting and well put together copy! The pictures of Hilary on the cover are great! Thank you for all your hard work! ZS
Well done – you have done a fantastic job getting all this information together in such a short time. You really did Hilary proud. VR
Can You Help Your Fellow Polio Survivor?
I retired from work 20 years ago due to me not being able to carry of full scope of my job due to pain, disability suffering breathing problems as well. I am under medical care & now that arthritis & a few other things have been excluded it would seem that Post Polio is the problem, it has been noted in my notes throughout. I take pain relief by mouth every day, not sufficient relief. So far I’ve had 2 injections into my back, when working it’s good but there are weeks when I am in a great deal of pain & disability, next back injection is next month! I get the feeling that they will not carry on with this. Anyway this month I happened to be sitting next to to CBD liquid & I took 1 drop under my tongue early evening & slept well feeling less pain & disability next day. I’ve carried on with this for a week now & have felt much better!! Question: Do you know of other people using CBD oil in the same way for same reason & results? Please help me out! Thank you – AJ
Please email psnadmin@poliosurvivorsnetwork.org.uk and we will send to AJ
A long time member recently sent in a copy of a poem she was given when she was a nurse. It was originally written by Scottish Nurse Phyllis McCormack back in 1966. The poem is written from the perspective of an elderly patient in a nursing home, reflecting on her life. The word “crabbit” is Scots for “badtempered” or “grumpy” (in Lincolnshire we would say “mardy”).
https://vts.wm.hee.nhs.uk/Portals/5/Presentations/Full%20Day/Crabbit%20Old
%20Woman.pdf
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From Our Readers (continued)
Can you help Rare Patient Voice? CLICK HERE for more information
We were sad to learn that Dr Richard Bruno, age 69, of Hackensack, New Jersey passed away on Monday 14 October 2024. His work on Post Polio Syndrome was second to none. Many of our members found his book The Polio Paradox especially helpful. Read Dr Bruno’s full biography on the PA Polio Network’s website https://polionetwork.org/bruno
Videos from the Post-Polio Syndrome Advocacy Group
The Post-Polio Syndrome Advocacy Group has recorded many informative sessions which we would love to share with you. They are posted to the PPSAG Facebook page and also on their YouTube channel.
https://www.facebook.com/groups/postpoliosyndromeadvocacygroup/
https://www.youtube.com/@kenmasson4712/videos
Rest In Peace Dr Richard Bruno
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With great sadness, Neuro Key had news of the loss of two much valued friends this summer, both to cancer.
When the Lincolnshire Neurological Alliance (LNA) closed, Hilary
Boone nominated Neuro Key for residue funds. Jo Cole and Hilary had been long time colleagues and worked collaboratively with the lead for the Greater Manchester Neurological Alliance (GMNA) to raise issues at national level. Now, Lincolnshire still do not have a Clinical Neurologist and Greater Manchester are to close neurology services to save money.
Hilary was a significant advocate for recognition of post-polio. Jo Cole was invited to write a tribute for the Post-polio network bulletin and the network have become neuro key Members.
Neuro Key Chairman, David Mudd and Jo Cole attended the funeral of David Harling, husband of Trustee Chris Harling and a stalwart supporter of Neuro Key to keep events going or pick up, deliver or advise on what ever was needed. Both dearly missed.
Demand for our expertise of 33 neurological conditions continues to increase and Neuro Key have been highlighting issues to regional and national networks. Neuro Key have revised the digital fundraising platform Give As You Live and set up a Just Giving page to raise funds for our advocacy service. As the leading cause of disability and the most marginalised of NHS client groups, we harness lived experience to champion a route past the almost daily barriers that people living with and caregivers of someone with a neurological condition, injury, disability or neurodiversity must overcome.
We hope you can join us in campaigning for inclusion of the neurological community to improve service delivery and support in 2025.
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Highlights from the Neuro Key Autumn Newsletter
Neuro Key Newtown Community Resource Centre
123 Durham Road, Stockton-on-Tees, TS19 0DE
Email admin@neurokey.co.uk
Phone 01642 641825
Website www.neurokey.co.uk X @na_tvdny Facebook NeuroTVDNY
Our member, Vic Baxter, grew up in Kenya, as his parents met there at the end of the war and stayed for thirty-five years. His father having served in India and his mother in Egypt. He was educated at the Prince of Wales School in Nairobi, moving to Loughborough in 1970, to embark on a career in engineering with Brush Electric, building turbo generators for nontourist destinations.
Several career moves followed, embracing maintenance, operations, HR, HSE, internationalisation and localisation, with multinationals, governments and his own company, Business Workout Ltd. Highlights include:
– Six years with Hawker Siddeley in heavy engineering.
– Two years with Vickers Oceanics operating mini submarines.
– A year with Wharton Williams designing diving systems.
– Twelve years with Shell in UK, USA, The Netherlands and Scandinavia.
– Assignments with Scottish, UK, Azerbaijan and Kenya governments.
– Freelancing in over dozen countries spanning the four corners of Africa, the
Americas, the Caspian, both ends of UK, parts of Europe and The Middle East, on
behalf of most of the oil majors.
Vic is currently back in Aberdeen, having returned from an assignment in Riyadh with SABIC, an ARAMCO company, delivering elements of Saudi Arabia’s Vision 2030, aimed at increasing Local Content and decreasing dependence on oil.
Vic has two offspring by his late wife, Dr Linda Sutherland, who keep him in order.
Vic has written a series of articles entitled “Far Fetched” on the topic of “Dodgy Wheelchair Transfers” in faraway airports. Please enjoy the first one entitled…
1930s Bathchair Halts Jumbo At Atyrau Airport
It had been a good journey. Aberdeen to a holdover in Amsterdam where I stayed at The Golden Tulip Hotel with Phil Hindmarsh. He had become a part of the establishment there as an oil worker on rotation. We got our customary Grolsch at the hotel bar then headed for Harlem where Piet and his wife ran a steak bar of huge repute. The group was primarily Shell folk, some of whom I had met in previous lives, who had been seconded to NAM. Palpable camaraderie ensued until our cab arrived to take us back to the Tulip.
At dawn next morning my airport limo arrived and I was wafted to Schiphol Airport in a trice. Seating onboard was adequate for the five hour jaunt to Atyrau in Kazakhstan and away we went.
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Far Fetched – Vic Baxter
KLM were often given a remote stand while Air Astana, the Kazakh national airline, were afforded a pontoon with a ramp directly into the terminal. So as I emerged from the KLM Jumbo I could see thick snow on the runway that would put the challenge into my reaching the terminal unscathed.
Waiting for me at the bottom of the stairs was something akin to a 1940s bath chair. Cream coloured with wheels all of three inches diameter. I eased myself into it and the attendant kindly introduced himself as Serik. He turned the chair towards the airport building, the snow crunching under foot as he did so, the chair wheels creakily aligning themselves with the direction of travel, hardly rotating, giving a sledge-like feel to the whole experience.
No sooner had we set off than the skies opened with a blizzard of large snowflakes falling heavily around us and across our pathway, accumulating eerily quickly as we pressed on.
Without warning the front wheels jammed bringing us to a standstill in an instant. Serik groaned and attempted to continued with locked wheels, momentarily emulating the full sledge experience, but quickly realising this would not work.
Then, to our right we saw a pair of fearsome lights peeping through the blizzard, which turned out to be an Air Astana flight heading towards a pontoon. This was fine until we realised we were between the aircraft and the pontoon.
Those of you familiar with the TV series entitled “Little Britain” will be able to envisage what happened next – Serik imagined a miracle had happened when I leapt up from the bath chair and headed for the airport on foot, emulating Bambi on ice nevertheless. Explaining to Serik once indoors that my issue was distance +/- the odd “sprint” in between.
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I “met” Hilary in early 2015. We chatted multiple times and had what we thought was a marvelous idea – International Pen Pals – that would include everyone, especially those survivors who were not online. Together we would create the lists for those interested and do the “matching” up so that US survivors would be able to “meet” and communicate one on one with those of you in the UK and beyond. We even created a logo image!
It didn’t take off and neither one of us could figure out why it wasn’t the best idea ever.
From Carol at PA Polio Network (PPSN)
The Medicines & Healthcare products Regulatory Agency (MHRA) has partnered with Imperial College London, to train up multiple World Health Organisation (WHO) polio laboratories around the world on a rapid detection method for polio that can halve detection times – supporting the global effort to eradicate polio and helping save lives.
Read more here:
https://www.gov.uk/government/news/world-polio-day-mhra-trainsworldwide-laboratories-in-early-detection-of-polio-using-breakthroughadvanced-technology
Medicines & Healthcare products Regulatory Agency (MHRA) trains worldwide laboratories in early detection of polio using breakthrough advanced technology
Does it sometimes feel like no one is listening? Let us know your experiences (positive and negative) of the responses you have had from GPs, Consultants, Physios, etc when seeking help as a polio survivor. We are hoping to collate a list of sympathetic services that we can signpost our members to.
Page 14
Life can indeed present some formidable challenges, particularly for those who have faced the trials of polio. The narratives of these individuals serve as a powerful reminder of the strength of the human spirit and the remarkable resilience we can all embody in difficult times. Each person’s path is unique, shaped by their individual struggles and triumphs. For polio survivors, navigating physical obstacles and societal perceptions has granted them a distinctive perspective on life.
Embracing one’s journey involves viewing every setback as an opportunity for growth. Polio survivors encounter difficulties on a daily basis, yet they exhibit extraordinary determination to adapt and progress. Their experiences impart the lesson that resilience isn’t merely about surviving hard times; it’s about transforming those moments into stepping stones for personal development. Each challenge they confront reinforces the notion that true strength resides within and the resolve to persevere can lead to remarkable achievements.
Consider life as a pathway with bumps and breakthroughs. For many, the highs signify victories—be it overcoming a physical limitation, achieving a personal milestone, or standing up for what is just. Conversely, the lows encompass the struggles, the doubts and the perseverance required to bounce back. It is this rich tapestry of challenges and successes that renders the narrative of resilience so profound.
Staying motivated can provide a tremendous uplift, particularly for those who have faced adversity. It revolves around cultivating a mindset steeped in positivity and determination. For polio survivors, motivation may stem from personal aspirations, the desire to inspire others, or advocating for enhanced accessibility and inclusivity. By surrounding themselves with supportive communities, they harness collective strength and encouragement, demonstrating that we are never alone in our struggles.
Each day presents a fresh opportunity to celebrate what you’ve accomplished, regardless of how trivial it may seem. Acknowledging these victories fosters confidence and momentum. Visualising your goals can help delineate a clear path to success, aligning everyday actions with grander dreams. For polio survivors, every achievement—whether it’s taking a step or championing change—becomes a testament to their resilience and commitment.
Ultimately, the journey of a polio survivor embodies remarkable strength and inspiration. It illustrates that life is more about the experiences we gather and the growth we realise along the way than merely reaching a destination. Every step taken, every challenge faced, and every victory celebrated contributes to the richness of their powerful story. So, embrace your own journey with courage, knowing that you possess the strength to overcome challenges and
forge a life brimming with purpose and passion.
Resilience in the Face of Adversity: The Journey of Polio Survivors
| International Ventilator Users Networkwww.ventnews.orgDisabled Motoring UKwww.dmukdiscounts.co.ukPain UKwww.painuk.orgNational Voiceswww.nationalvoices.org.ukNeurological Alliancewww.neural.org.ukRare Disease UKwww.raredisease.org.ukEnd Polio Now – Rotary Internationalwww.endpolio.orgEuropean Polio Unionwww.europeanpolio.eu | British Polio Fellowshiphttps://britishpolio.org.ukPost-Polio Health Internationalwww.post-polio.orgPA Polio Survivors Networkhttps://polionetwork.orgPolio Quebecwww.polioquebec.org/eng/Polio Survivors of Marinwww.facebook.com/groups/163909760771171Atlanta Post-Polio Associationwww.atlantapostpolio.comNebraska Polio Survivors Associationwww.nepolioorg.ipage.comPolio Australiawww.poliohealth.org.au |
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Videos by the Polio Network Victoria
Useful Resources
Polio Network Victoria has a series of videos on their YouTube channel worth a look:
https://www.youtube.com/@PolioNetworkVictoriaTV/videos
Chair – Simon Parritt simon.parritt@poliosurvivorsnetwork.org.uk
Trustee – Zsuzsanna Snarey zsuzsanna.snarey@poliosurvivorsnetwork.org.uk
Trustee – Verité Reily-Collins verite.reilycollins@poliosurvivorsnetwork.org.uk
Trustee Vacancies – please contact Toni for more information
Operations Team
Admin & Enquiries – Toni Dunlop psnadmin@poliosurvivorsnetwork.org.uk 07480 110334
Flat 1, 356 Martin Way, Raynes Park, London, SW20 9BS
Please contact us if you would like to help with our work
With grateful thanks to a generous legacy from Ms A Brown we are able to keep membership FREE whilst our funds
remain above £10,000.00
UK Members receive newsletter by post and/or email (overseas members newsletters by email only)
All donations, small or large, towards our work are gratefully received Donate by PayPal to treasurer@poliosurvivorsnetwork.org.uk
Or by PayPal donate as below Or by bank transfer as below
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
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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.
Management Committee
Post Polio Matters Volume 11 Issue 8 Read More »
Post Polio Matters Volume 11 Issue 7
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 1
Polio Survivors Network Newsletter
October 2024 — Volume 11 Issue 7 of 12 [127]
| Lincolnshire Post-Polio Library100+ articles | Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network |
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 2
This publication is provided free thanks to the generous donations of our lovely members
Thank you so much!
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.
| Page 2 | Contents, Donation acknowledgements |
| Page 3 – 5 | Hilary Boone Eulogy |
| Page 6 – 7 | From Our Chair |
| Page 8 | Zsuzsi’s Thoughts |
| Page 9 – 10 | From Verite |
| Page 11 | Toni Writes |
| Page 12 – 16 | Polio Survivors Throw Doubt on Study – Hilary Boone |
| Page 17 | Tribute to Hilary Boone from Jo Cole and Deb Troops at Neurokey |
| Page 18 | Neurokey Self-Management Programme |
| Page 19 | Overview of why it’s hard to get a diagnosis |
| Page 20 | WHO – First phase of polio campaign concludes successfully in Gaza |
| Page 21 | Using Fitbit for Weight Management in Post Polio |
| Page 22 | Ohio Polio Network – What Is Post-Polio Syndrome? |
| Page 23 | Management Committee, Contact Details, Donation Details, Useful Articles |
| Back Page | Winter Fuel Allowance Petition, Links to financial help with energy bills |
| Donations and Charity Incentives Paid(since last newsletter) | |
| Donation MC | 20.00 |
| PayPal Giving Fund | 10.00 |
| Donation DM | 12.50 |
| Donation HY | 20.00 |
| Donation RB | 20.00 |
| Donation EM | 210.00 |
| Total | £292.50 |
PayPal donate link:
https://bit.ly/2KzyAyE
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 3
Polio Survivors Network were very sad to announce that our founder and tireless advocate, Hilary Boone, passed away on 15 July 2024. We know many of you joined the funeral service in-person and also using the online streaming service. Many condolences were received and sent to her family and friends. We also received many kind donations in lieu of flowers as requested by the family.
We thought it only appropriate and proper to dedicate a good portion of this newsletter to the memory of Hilary, a fighter for polio survivors everywhere. Please find following the eulogy which sums up Hilary’s fascinating life despite the obstacles she faced.
Eulogy – Hilary Ann Boone / Gowa Meendegaw (Dancing Owl)
Hilary was born on 16th March 1947, in Hammersmith. In 1952 the UK General Post Office offered her father Hal, a job in Benghazi, Libya to organize the rebuilding of the telephone system. Hal flew out to Benghazi, and weeks later his wife Mabel, Hilary and her younger brother Robert went out via boat on HM Troopship Dilwara.
The yellow quarantine flag was flying because Hilary and her brother Robert had caught whooping cough and then a few months later Hilary caught polio and was paralysed from the waist down after playing with a girl at the beach. Hilary was taken to the army hospital in Benghazi, her mother Mabel was told she was only allowed to talk to her from the doorway. Once Hilary was out of isolation her parents asked if swimming would help with her recovery. An army truck took Hilary to the Mediterranean ocean to swim every day. Hilary quickly learned to swim underwater, and her father Hal would walk alongside and hold her up whilst she got her breath back.
In December 1953, Hal’s work was finished, and it was time for the family to return to England. Hal wanted to make an adventure out of this so he decided rather than going home by boat he had a car shipped out to Benghazi and they would take a ferry across the Mediterranean and then drive home through Italy, Switzerland and France, with a final ferry from Calais to Dover.
While packing up the belongings Hilary’s mother Mabel slipped a disc from carrying Hilary. The only treatment was to plaster cast her from her neck to her hips, it made it very difficult for her to sit in the car. On the day the ferry was due, they were waiting at the docks in Benghazi, but the captain radioed that the sea was too rough and that he was going to sail to Tripoli 600 miles down the coast. If they could reach him in 4 days’ time, they could take the ferry to Salerno and then drive home through Europe as planned. The drive to Tripoli was certainly an adventure, getting stuck in the sand, haggling to buy fuel for the car, finding places to eat and even harder somewhere to sleep.
A few years later Hal was offered a job in Jordan for a year and the family visited for a few months in the summer. They visited Aqaba but the best hotel was closed because the King of Jordan was staying, as Hal was a government official the family were allowed to stay in a suite. The only other guest was an Arab actor, they had dinner with him, he was very friendly. Hal was concerned that Arabs found white women attractive and told Hilary to stay away from him. The actor was Omar Sharif, when the film came out and he became very famous Hilary jokingly said she was disappointed as she could have been seduced by one of the most famous men in the world.
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 4
Years later when the family had moved back to the UK Hilary could walk but she fell often, she had an operation to cross her tendons that enabled her to walk more easily. Hilary went on to pass her orange belt in Judo; she was a good swimmer and passed life-saving awards to distinction in the pool and open water.
Hilary’s first job was as a secretary for George Wimpey, a construction company, however this was not an exciting career choice. In 1969, she passed the medical for the Police as fit and went to RAF Dishforth to start her 13-week training. On the second day she was given the timetable for the week, Friday was cross-country running. Hilary asked to see the Sergeant and explained that she could not do this. She told the Sergeant she could run enough to get around playing tennis and netball but after having polio as a child she could not run any distance.
She thought her days as a policewoman were numbered, it was decided that as she had higher qualifications in Judo and Lifesaving, she was given the weekly chance to try and complete the rest of the training. A list went up for the 40-mile Lyke Wake Walk across the North York Moors. Hilary put her name up and later saw that it was crossed off, so she put it back up again, but again it was crossed off. She complained to the Sergeant and was told as she could not run it, it had been decided that she would not be able to do this. She asked if the others had been asked if they had walked that distance before and the answer was no.
The Sergeant allowed her to attempt the walk, but her car had to be driven by someone else and had to be part of the back-up team. It was decided they would support her for the first 9 miles and then her car would be available to take her back to the training school. Her car did take someone back to the training school, it was not Hilary. Nearing the end, she had to crawl up a hill on her hands and knees, it took her 18 hours, but she did it.
She completed 4 years as a policewoman at Heathrow Airport, including 2 years in CID before marrying a colleague and moving to Lincolnshire.
In 1973 she gave birth to Michael and in 1976 Alison. Hilary continued her love of swimming and taught disabled children and adults, volunteered as a lifeguard at Chapel St. Leonards and worked as a lifeguard/swimming teacher in many pools across Lincoln.
In 1987, Hilary fell, and she struggled to recover from this point on. From 1989 to 1994 Hilary was an Occupational Therapy Aid, working at Ancaster Day Centre and then in West Lindsay running craft groups for the elderly and disabled. She continued with her education learning British Sign Language and Adult Teaching Certifications.
Finally in 1995, she was diagnosed with Post Polio Syndrome, from this day on she tirelessly searched for information.
She met Peter Jay from the British Polio Fellowship, and they organised a meeting at a local hospital, 52 people turned up and the Lincolnshire Polio Group was reformed after 20 years. Hilary met Helena Edwards from the Leicestershire Polio Network, she said she would share all their work if Hilary started a group in Lincolnshire. The first newsletter for the Lincolnshire Post-Polio Network was published in September 1996. In 1998, she became a founding member of the Lincolnshire Neurological Alliance.
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 5
Hilary did not stop researching from that day onwards, she gave many presentations, her first at the International Polio Network Conference in 2000. Her presentation at the 2nd European Polio Conference in 2014 was featured in the Journal of Rehabilitation. She put together and edited nearly all the 126 newsletters for Polio Survivors Network and has met many of the world’s top Post Polio Specialists.
Hilary met Richard online in 1997, and in real life on 20th May 2000, in the first week he took her to a State Shoot. They had to drive down a road made of sand and then turned towards the edge of palm trees. They parked the truck, and Hilary got the electric scooters out of the truck and off they went towards a few signs. One pointed to a Hawk & Knife Throw, Hilary thought she didn’t want to watch them throwing knives at birds. Hawk of course was Tomahawk. Then there were folks in costume of the pioneer times both cowboys and native Americans. They met so many lovely folks and nearly everyone asked Richard if he was going to get to the Rendezvous in January.
Richard took Hilary to a Rendezvous at Charley Knights place – the last before Alafia River Rendezvous bought some land at Homeland, FL. There were tents and tipis and folks living just like in the films she had watched on TV. She had not wanted to feel out of place as Richard had loads of outfits, so she had gone into a Goodwill store and purchased a curtain and made a long skirt and luckily found a white blouse that was near enough. Going round and talking to the folks was so interesting and she told Richard that she would love to do more of this, thus began her love of reenacting.
They attended the Final Ceremony a week later and standing in a circle with three Native American chiefs performing the ceremonies and the ‘cowboy’ elders sitting on chairs in the circle. They all went through the circle taking a pinch of tobacco from a pouch and sprinkling that on the fire saying their prayers as they were taken up to heaven, so moving. Then they passed a talking stick round the circle, and everyone was invited to say something if they wanted to. Hilary took the stick and her voice broke, it was such an emotional experience, the most uplifting spiritual experience she had ever had. They also went to Singing River, Fort Foster and a local event in Emerson Point Park where they lived.
In March 2008, Hilary and Richard settled permanently in Lincoln, where they enjoyed the British Westerners Association events, were members of the Reepham Shooting Centre and volunteering at Lincoln University for over a decade.
Read more tributes to Hilary (or add your own) here: https://hilaryboone.muchloved.com/
Donations in lieu of flowers can be made here: https://hilary-boone.muchloved.com/
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 6
MESSAGE FROM OUR CHAIR Thoughts our founder Hilary’s passing
Life is never made unbearable by circumstances, but only by lack of meaning and purpose. – Victor Frankl
Most of us enter this world, healthy, active and full of potential. In addition, if we are fortunate, we are a welcome addition to our parent, family and society who wonder at the amazing and unique creature that has arrived, as a new human being. A kind of miracle, whether you are a person of faith or not.
Wherever, and in whoever’s arms we land in, for that short period we exist on earth, we are thrust into a life with all its vibrant, beautiful and exciting possibilities and yet, also tossed into an uncertain lottery of who, where and what we are and what we may become. So much of this is random, out of our control and our particular fate, often as very young children, was to be exposed to and infected, the polio virus.
It’s not that we have a short time to live, but that we waste a lot of it.’ Seneca
What Seneca said so many centuries ago is certainly not true of Hilary. As I write this and reflect on Hilary, my friend and fellow traveller of many years, I think how much she was shaped, not just by birth or chance alone, of which we have no control, but how she grasped it and made meaning out of her experience and time on earth.
‘After your death you will be what you were before your birth.’
Arthur Schopenhauer
Short as that is, in-between, in life, we are given the privilege and struggle of self-consciousness. We don’t absolutely know, but it’s worth contemplating that perhaps we are the only beings in the vastness of space and time that can be conscious in this way. So, Hilary was someone who grasped her life with both hands and used her experience of it, be that good or bad, happy or sad, pain or pleasure, exciting or, yes even boring and frustrating to make meaning out of it and used it to make a difference to others.
I first met Hilary in the mid 1990’s and though we had very different experiences of polio, we were both maybe guilty of that trait that we polio survivors are accused of. Being bolshy and always questioning the received narrative, especially that handed down by ‘the polio experts’. We had both reached a time in our lives when polio was obviously not a thing of the past and had become very relevant again to our current day to day life, work and increasing heath challenges.
Silence isn’t always golden
The disappointing thing was that few if any of the medics or polio organisations were interested in the realities of post-polio as we all experienced it. At worst the official narrative was that it was just normal aging or psychological stress reactions. Indeed, I was told at 25 that my physical issues were that I had reached adulthood and had not come to terms with my disability (or handicap as they put it) and prescribed a tricyclic anti-depressant, which I didn’t take. Hilary, having been in the police force and a lifeguard was impacted later in life and began to doubt this narrative and fought to establish the truth of polio survivors lived experience.
My point is that Hilary and I came from two different experiences of polio, I was in an iron lung, couldn’t swallow or move above my neck and recovered well, but with extensive muscle loss, and never fully returned to the kind of physical life I might have had, or my peers went on to have. Hilary, like many PSN
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members, recovered enough and managed to do compensate enough to live her life up to a point where polio wasn’t a defining issue day to day, until one day that changed and it resurfaced, with a vengeance.
There is only one good, knowledge, and one evil, ignorance – Socrates
So we were different, in many ways. And, I bow to Hilary’s perseverance, tenacity, stubbornness and energy in the face of so much uncertainty and push back. Sometimes she could seem a bit single minded and even dictating but I admired that in her as that was what made a difference, both in her life and of course her late husband Richard’s. But this was what fuelled her to set up the Lincolnshire post-polio network which then became the charity The Polio Survivors Network (PSN) at a time when so many others just wouldn’t listen.
I also want to say that whilst a big part of Hilary was a campaigning element, she was to me and many others as a kind, warm-hearted and generous person, always there to help and advise, if she could. There is more to achieve and contribute to polio survivors’ healthcare and not just the lives of polio survivors but others with neurological conditions such as ME and now Post COVID. However, Hilary played a huge part in changing the narrative and closed mindedness of the medical attitude to polio.
Sometimes the smaller less visible advocates and campaigners can be forgotten. Hilary was one of those who made a difference to many people’s lives, helped people across the world and though maybe she may not have fully appreciated it, changed those she helped and met in a positive way. I am sure many, will remember her with affection and appreciation and I for one will and do miss her just being here. But as the Artist Edvard Munch wrote : From my rotting body, flowers shall grow and I am in them, and that is eternity.” I am sure that her existence and time she spent on earth has indeed grown many flowers that have seeded and made a difference into the future.
Simon Parritt
C.Psychol, AFBPsS, MSc, BSc (Hon), BA Chartered Psychologist
HCPC Registered Counselling Psychologist
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WARNING
I have been writing about the movable stool called a hairdresser’s stool in past copies of this magazine. I use it for cleaning the floor, cooking and carrying large dishes where both hands are needed.
My balance is quite bad so that I always need to hold on to something stable with one hand. But while recommending the stool, I have forgotten to warn about the danger of sitting down on it until my able friend visited and tried to sit down on it. The stool slipped away from her, and she nearly sat on the floor. I have forgotten that it also happened to me once when I first had it and since then I always hold on to the seat with one hand as I sit down on it. I should have warned you of this danger. I also have to be careful when I stand up, making sure that I hold on to a chair or table with both hands.
Zsuzsanna Snarey — Trustee
Zsuzsi’s Thoughts…
I was deeply saddened to learn about the death of Hilary, the founding member of the Post Polio Survivors Network. Her dedication, knowledge, and contributions have made a lasting impact on the lives of many and her legacy will be remembered with great respect and gratitude. I have met Hilary on many occasions and found her sense of humour and perseverance infectious. She is greatly missed. I send my sincere condolences to Alison and Michael hoping that you will find consolation in the cherished memories you shared and in the knowledge that Hilary’s work has made a profound difference in the lives of so many.
I found the Polio Survivors Network while living in Kent and trying to get a diagnosis for my failing strength and ability to walk. I first met Hilary at one of the Annual General Meetings in Lincoln. One of our daughters lives in Nottingham and we also visited Hilary and Richard in their bungalow. When we moved to Nottingham I offered my services and for a short time, I was secretary. Later I became a trustee and Hilary encouraged me to attend the Annual General Meeting of the European Polio Union held in Budapest where I was born and where I caught polio. I will miss her contributions to the monthly newsletter, and find it difficult to imagine how we can carry on without her. May she rest in peace with her beloved Richard.
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From Verite
PSN Trustee, Health Journalist and owner of www.aftercancers.com
Keir Starmer announces “Ballooning NHS waiting times and delays getting vital treatment in A&E and cancer care is harming health and costing lives, according to Lord Darzi’s governmentcommissioned report.
It is doubtful if anything sensible will come out of this report; as implementing it will mean dismantling the multiple empires built up by the ‘new’ Admin staff that today rule the NHS, in place of Matron.
Long gone are these sensible people who ran hospitals; today there are costly levels of selfperpetuating bureaucracy that has dug itself into an impregnable position.
Today’s reality in hospital
I had been sick, so rang the bell for a nurse. As one came through the door she screamed “You’ve made a mess all over the floor”.
Yes Sunshine – that’s what nursing is all about – when there were Matrons they would have told you in their induction speech what to expect. But there is no matron today to lend wise counsel and years of wisdom to nurse training.
Instead, nurses are taught to rely on computers and smartphones, and Matron’s personal pride in running an efficient hospital has gone out the window. Pride in a job well done doesn’t have a monetary value, so today’s highly-paid CEOs who replaced Matron don’t have the same ethos.
Dumbing down nurse training
Today Matron has been replaced by highly-paid Administrators; long on theory but short on practical experience; They know all about saving money, but little about what patients really need. As I found out recently, nurses are trained how to take your blood pressure, but not how to interpret readings. Seems this has been cut out – probably to save time. and/or money.
This machine issued to trainees costs over £1,000 – replacing the small cuff machine costing a tenth. Trainees are experts at trundling these around, but seem incapable of interpreting what results show;. One trainee had no idea why I was worried when my reading shot up dangerously.
And a fresh horror is appearing; Community Hospitals. These sound friendly, but basically, the NHS has looked at the number of elderly patients” bed-blocking” because they can’t go home, and come up with a plan that enables grannie-with-dementia to be discharged back into the community, drugged up to the eye-balls and wearing continence pads.
But if you are elderly, but have your wits about you enough not to want to exist in a drugged state, you can find it difficult to come off the drugs.
Reality today
My many long-term conditions, started when I caught polio aged 15,. These mean I have been an inpatient in 28 different hospitals. I’ve made friends with nurses in British, German, French, Italian, Austrian and Swiss hospitals, and skilled nursing helped me survive and thrive. But for the past few years I have found nurse training in the UK is being dumbed down, and we have to advocate for ourselves if we want proper care.
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Good nursing care is vital to recovery. but it needs well-trained nurses to carry it out. If trainees don’t receive proper training, things fall apart. Our new Labour government announces they aim to reduce long waits for treatment, but I think it won’t work unless current nurse training is tightened up.
Everyone mentions their ” wonderful doctor”, but without the nursing to back up prescribed treatment we would struggle to get better.
Nurses are so important
Lying in a hospital bed in my local town, I could observe the way nurse training has changed from when I was a victim of a polio pandemic, Then, nurses worked tirelessly and got us through the worst. But today, when I ask a nurse to do something, often their response is “I must protect myself”, rather than what they can do for me. Yes, safety training for staff is vitally important, but do patients need to be reminded of what should be an integral part of training? It made me feel guilty for asking.
I agree that nurses should be trained not to strain their backs, etc. But they are there to help patients, and we don’t need to know what they are doing to protect themselves.
Staff Training
Once, being cared for in a major teaching hospital was a big plus. Today, it’s the contrary. Recently, in Oxford’s John Radcliffe teaching Hospital, the trainee nurse taking my blood pressure told me it showed a reading of 170. This was way above my normal reading, but didn’t seem to concern her. Even though she could have checked in my notes and seen it is usually around the 120/130 mark. Finally, an Agency Nurse let the cat out of the bag; the sister in charge of drugs had forgotten to order my blood pressure tablets. If the trainee had done as she should, and informed a superior, this would have been sorted without fuss. But it seems nurse training is carried out at arm’s length – and trainees aren’t encouraged to bother superiors.
It wasn’t the first encounter I had had with the Sister-in-charge of drugs. On admission, I had told the nurse doing my check-in that I was allergic to preservatives in certain drugs. This was also noted on my printed hand-over form. Hospital Caterers had picked up on this and sent a dietician to talk over what I could eat, but the ‘drugs sister’ hadn’t bothered to read these notes, and ordered drugs for me that contained preservatives.
My face and body blew up in a painful rash and I am still being treated for this, one year later.
For the future
It is up to us, as patients, to monitor how we are nursed. If anything seems wrong it probably is, so it’s up to you to alert whoever is in charge. Don’t sit back and think “Nurse knows best”. So often today they are a trainee and don’t.
While Matron has been ousted by the new breed of Administrator/Accountants (on vast six-figure salaries), Matron on her sensible salary, with her common-sense approach to patient care, will never be allowed back into the system.
Britain has produced many innovations in medical care, from Jenner and Hunter, Lister and Fleming, to Florence Nightingale and her revolutionary nursing methods during the Crimean War. ]Today, American nurses celebrate Florence Nightingale Day, and when Daddy worked in Turkey I remember going with him to represent the British Community at the Annual Nurses Award Ceremony, held in Scutari Hospital where Nightingale had worked.
The ceremony was very moving, each nurse carried a little lamp commemorating “The Lady with the Lamp”, and it was obvious her legacy meant a lot.
Let’s hope that today’s nurses think of her legacy, and training improves to what would have been acceptable to Miss Nightingale.
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Toni Writes …
Thank you for all the messages of support and condolences which have been coming through, we have passed these on to Hilary’s family. Also a big thank you for the donations and stories that you have shared, it means so much.
I have spent time reading through articles and information Hilary had written over the years and came across this fantastic definition which I want to share:
Polio Survivors – a strong willed, determined, highly motivated, hard working group of people – want to live for as long as possible, doing as much as possible. We need a full and accurate base line assessment that takes into account the endurance of our weakening muscles. We need advice, and the understanding that it takes time to accept that we have to change our lifestyle. We need treatment where it is available, appropriate aids and equipment, and benefits so that we can financially cope in this world where anything ‘disabled’ has a high price label.
I can’t agree more! That is exactly what Polio Survivors Network aims to advocate for. We do need your help to do this more fully — we are currently working hard to compile a list of resources (organisations, health care professionals, companies, charities, etc) that we can signpost our members and enquirers to for help.
So, have you had good experiences with any particular consultant (NHS or private)? A physiotherapist (NHS or private)? A social worker? A chiropodist? Orthotist (NHS or private)? Did you meet someone wiling to listen about your post polio syndrome or someone willing to look up the late effects of polio in order to treat you more holistically? Did you have the slightly less common experience of being treated by someone who knew about polio and post polio syndrome? If so we would love to know their contact details so we can reach out to them.
Thank you in advance as I know many of you will be in touch.
Sending much love
Toni
From our readers:
I found it to be a very interesting newsletter – BF
Can you help our new member with their query?
I am interested in knowing if other polio victims have experienced, like me, delayed muscle inflammation. A month after straining, my muscles became inflamed. I live in Norway. I have been diagnosed with post polio syndrome and have lived a good life until a year ago I had a severe deterioration. I mean I was exposed to too much activity during a treatment in February 2023 and suffered a breakdown, inflammation of the muscles a month after this. That is what I would like to know, in a large group that you probably are, there may be others who have experienced something similar to me. Do you know of anything that can help with the inflammation that I have in my muscles? The experts here say I have an autoimmune response. Maybe IVIG treatment will help. I am in the Norwegian association of polio victims. – LF
| psnadmin@poliosurvivorsnetwork.org.uk | |
| Post | PO Box 954, Lincoln, LN5 5ER |
| Website | www.poliosurvivorsnetwork.org.uk |
| Phone | 07480 110334 |
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In August 2006, three press statements related to polio survivors caught attention:
1. “Survivors of childhood polio do well decades later as they age”
2. “Polio Survivors faring well” : This statement echoed the positive
outcomes observed in the study mentioned above.
3. “No polio effects in later life”
Hilary was not afraid to challenge the status quo — here is a reprinted copy of her article challenging polio studies.
Polio Survivors Throw Doubt on Study
Hilary Boone, Lincolnshire Post-Polio Network
“Survivors of childhood polio do well decades later as they age” [a] “Polio Survivors faring well” [b] ‘‘No polio effects’ in later life” [c]
The above three press statements were made in sequence during the last ten days of August 2006. The initial statement, on the 21st August 2006, was the announcement by the News bureau of the Mayo Clinic in Rochester, Minnesota, [a] of the research findings reported in an article in the Journal of the Peripheral Nervous System, ‘Electrophysiological findings in a cohort of old polio survivors’ by Eric J. Sorenson, Jasper R. Daube, and Anthony J. Windebank. Their research used a cohort of patients that they had been studying over the last 15 years. [1,2,3,3a,4,5] A cohort of 50, reduced over the 15 years to 38 ‘old polio survivors’. Within days the findings had been reported by other media and by the time it was on the BBC News – Health there were ‘No polio effects in later life’. [c]
Polio Survivors who are NOT doing well decades after recovery; who do have polio effects in later life; who have been presenting with well documented new symptoms – including considerable functional decline in actions of daily living – to recognised Post Polio Clinics and Specialists during the last 25 years are once again disappointed that this cohort continues to be used as representative of the polio population. In the authors’ own words in the 1996 article ‘…we believe that our findings can be extrapolated to the whole population of polio survivors in the United States.’[4]
McCarthy reviewed the 1996 article [4] in the Lancet in February 1996 [8] with the heading
Study throws doubt on post polio syndrome
Helena Edwards of the Leicestershire Post-Polio Network in her rebuttal stated, ‘We, in the UK, heard from people whose doctors were assuring them that PPS did not exist, and in some cases the doctors mentioned that their information came from an article they had read recently.’ [9]
We present the following issues that we believe need to be taken into account before conclusive statements can be made regarding findings from Sorenson et al’s research report. Authors who raise other issues with this research, and the way findings have been presented, are included in References at the end of this paper [d,e,f,g].
1. We believe the people in Sorenson et al’s study cannot be extrapolated to the ‘polio population’, because 90% of their cohort is towards one end of the scale, towards more severe deficits.
2. There are important facts from 10% [5 of 50 subjects] of their study group that appear to have been dismissed when in fact they appear to show what is happening at the other end of the scale, those of us presenting to PPS specialists and PPS Clinics; polio survivors who recovered well and now have new symptoms and considerable functional decline in activities of daily living.
3. Their use of numbers and phrases can easily be misinterpreted without the full facts from previous articles.
4. Sorenson et al make several statements of caution, regarding comparing studies with the normal population, then appear to proceed to ‘overcome’ or ‘ignore’ them in this article. Yet just eighteen months earlier they stated ‘the effects of normal aging in this cohort cannot be commented on.’ [5]
5. We question the validity and reliability of Manual Muscle Testing to grade muscles.
6. We question the reliability of a YES/NO questionnaire. Ask 50 Polio Survivors “Can you do x?” and the vast majority will say “Yes”. Ask the same number “How do you do x?” and you are likely to get a huge variety of answers.
7. The extent of recovery from paralytic polio experienced by many polio survivors is often not realised.
Issue 1
Quite simply, in the authors own words, from two of the articles, the cohort used is weighted towards people whose polio residuals were more visible
• ‘we selected those survivors from the original cohort [223] who currently reside in
Rochester and the surrounding area’ [2]
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• ‘we also randomly selected an equal number from those who were complaining of deterioration and those who were not.’ This intentionally biases the study toward those with difficulty… ‘At this time, 31 patients have completed the study.’ [2]
• ‘From the 247 survivors, we selected 50 subjects.’ [3 – Abstract]
• ‘Fifty survivors who lived closest to Rochester were selected for the study. This group was likely to stay in the area and be available for follow-up study.’’ [3]
• ‘58 subjects were called in order to recruit fifty’ [3]
• ‘Those evaluated showed a trend towards more severe deficits’ [3]
• ‘There may be a tendency for more handicapped residents to remain geographically closer to our clinic.’ [3]
• ‘These subjects were not seeking medical attention; they were invited to participate on the basis of their having had polio.’ [3]
Issue 2
Important facts in their study actually relate to the other end of the scale, of polio survivors who are experiencing new symptoms and functional decline, do not seem to have been given equal attention. Again using the authors own words. [3]
• ‘that 5 subjects who had made the greatest recovery were all experiencing new difficulties’
• ‘One of the two nearing retirement who had made an occupation change because of leg weakness was a surgeon. He had significant progressive leg weakness so that ambulation had deteriorated from requiring no aids to needing a cane and then a walker and finally a wheelchair for distances’
• ‘that nine limbs that were newly symptomatic that had not been paralyzed during the acute illness were in 4 subjects.
Three of the four had purely bulbar polio but now complained of limb symptoms.
The fourth had paralysis involving the legs and now complained of arm pain’
• ‘That in no case did they find new complaints in a limb that showed no electrophysical evidence of having been affected by the original disease.’
Issue 3
The use of numbers and phrases in their articles can easily be misinterpreted without reading all previous articles relating to the study. For instance the article that triggered the recent press releases, ‘Electrophysiological findings in a cohort of old polio survivors’, stated:-
• Fifty representative subjects were randomly chosen from 298 patients with a documented history of paralytic poliomyelitis residing in Olmsted County at the time of the infection. [6]
Compare that statement with the following quotes from the progression of articles from 1984 to 2005, referenced [1,2,3,4,5], relating to this study group. We accept that these quotes are taken in isolation and not the full context, but they do not appear to be consistent.
| 1984 | Patients were required to have had established residence in Rochester prior to diagnosis for inclusion in this study.’ ‘Of the 316, 201 had paralytic polio and 115 had nonparalytic polio.’ |
‘23 died in the acute phase of the illness…. 7 deaths in subsequent years.’
… ‘a questionnaire was circulated in April 1984 to all traceable patients who had had paralytic poliomyelitis.’ ‘Of 171 potential respondents… 23 people remain untraced at the time of presentation of this data’
‘Replies have been received from 128.., three persons were unwilling to participate.’ ‘Of the 125 remaining, 97 patients indicated stability and 28 indicated deterioration since their maximal recovery from polio.’
‘This questionnaire was supplemented by a detailed telephone interview for those who indicated deterioration since their maximal functional recovery from polio.’ [1]
| 1987 | ‘This group has subsequently been expanded to include all residents of Olmstead County, who had paralytic polio between 1935 and 1959. Two hundred eighty six subjects were identified, and 276 have been located for follow-up. |
‘Thirty people (10.5%) died in the acute phase of the illness, and 23 died in later years.’ ‘The remaining 233 formed the cohort for the follow-up. Two hundred twenty-three have been located’.
‘At this time, 31 patients have completed the study. Ten individuals reported no difficulties of any kind… Seventeen reported new, perceived, specific limb weakness.’ [2]
| 1991 | ‘We identified a cohort of 300 individuals who had paralytic polio between 1935 and 1955. All lived in Olmstead County, Minnesota.’ |
‘Two hundred ninety-three of the 300 cases were traced. Of the 300 subjects, 53 were known to have died’.
‘Fifty survivors who lived closest to Rochester were selected for the study. This group was likely to stay in the area and be available for follow-up study.’
‘58 subjects were called in order to recruit 50.’
In response to the questionnaire, 32 individuals complained of some new difficulty (Table 4)
Table 4 – No new symptoms 18. *Types of complaints reported by 32 of the subjects with paralytic polio. More subjects (21 of 33) complained of lower limb difficulty than upper limb problems (nine of thirty)
The cause of the symptoms is unclear but they are not attributable to age alone because the population is still relatively young (median age 49 years) [3]
1995 ‘Of the 300 cases, 298 identified for follow-up. 53 had died;’
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‘Detailed comparisons between 50 and the other 197 survivors to ensure that the cohort was representative.’
‘This group of subjects was then reconstructed after five years. All gave information about their present status, and 46 underwent again the complete battery of tests described above.’
‘The number of subjects reporting new symptoms of weakness, pain, or fatigue remained constant over the five year interval. Of 30 individuals who had symptoms at the first study point, 23 continued to have symptoms and 7 did not. Six individuals who did not have symptoms at the first time point did have symptoms after five years.’
‘..(Table 1), the distribution remained similar except that more patients were likely to be complaining of all three symptoms at the second evaluation.’ [3a]
1996 ‘Three hundred individuals met the criteria for paralytic poliomyelitis. 298 of whom were available for follow-up; (n.b. 53 had died) we chose a representative cohort of 50 individuals for prospective, sequential evaluations. They were chosen because they represented the whole cohort…’
‘Of the 50 patients, 46 completed the detailed 5 year study. Four patients declined to complete the tests but were contacted by telephone; all four reported that they were asymptomatic and did not want to participate in further detailed physiologic testing.’’ [4]
2005 ‘In 1987, we began a population-based cohort study of 50 subjects with a remote history of paralytic poliomyelitis.’
‘Fifty representative subjects were chosen from 298 patients who previously had well documented paralytic poliomyelitis, living in Olmstead County at the time of the infection.’ (n.b. 53 had died)
Of the original 50 subjects of the cohort, three subjects died during the 15 year follow up period. Nine of the remaining 47 refused further participation.’
‘Thirty-one of the 38 subjects whom we followed for 15 years reported symptoms of progressive weakness during the study period. Only seven subjects remained asymptomatic.’ [5]
Issue 4
Sorenson et al make several statements of caution when comparing their study to others then appear to proceed to ‘overcome’ or ‘ignore’ them. E.g. Regarding the McComas study Sorenson states ‘Without such a control group, one cannot reliably compare the changes in the polio group with those in a normal aging population.’ [6]
The first paragraph of their Press Release on 21st August 2006 states:- ‘Survivors of Childhood Polio Do Well Decades Later As They Age’
ROCHESTER, Minn. Mayo Clinic researchers have found that years after experiencing childhood polio, most survivors do not experience declines greater than expected in their elderly counterparts, but rather experience only modest increased weakness which may be commensurate with normal aging.’ [a]
Compare that to the statement in their 15 year follow-up article published in March 2005, just eighteen months earlier.
‘How the changes identified in our polio cohort compare with those of a normal aging population remains unknown. We did not include a normal control group at the inception of the cohort. In the absence of a normal control population, the effects of normal aging in this cohort cannot be commented on.’[5]
Issue 5
Manual Muscle Testing – How valid and reliable is this as a form of grading muscles?
Professor W.J.W. Sharrard – a world renowned Polio Professor from the 1950’s, who wrote ‘Muscle recovery in Poliomyelitis’ [10], studied polio patients at autopsy and found that ‘muscle grades of 3 were given to individuals with 85% denervation of the muscles. In other words, profound muscle weakness must be evident before abnormal grades are given.’
The Mayo Clinic states that Manual Muscle Testing and Isometric testing across different joints were used to grade muscles. They have not used the normal MRC grading scale but used the following scale, which they state ‘has the advantage that numbers can be handled additively for additional analysis’ [2]
0 Normal strength
1 25% loss of strength
2 50% loss of strength
3 75% loss of strength
4 100% loss of strength
The issue with Manual Muscle Testing – most often performed as a single action – is that it will not tell the health professional how long the patient can sustain that action, repeat that action, or how they use that action in a pattern of movement. According to Westbrook in her rebuttal of the 5 year study [9] Windebank et al derived their “Neurological Disability Score” from the results of manual muscle testing, a method that is notorious for overestimating polio muscle strength.[11] Polio survivors developed many trick movements; use other muscles instead of or to assist weakened ones. Important evidence of reported new weakness and compensatory strategies can be missed unless people are observed performing actions of daily living over a period of time.
Polio Survivors, who have often taken months or even years before presenting new weakness to a health professional, report again and again that ‘They say I am strong, that I have nothing wrong with me. Then why can I no longer do the things I used to a few years ago?’ To ensure this is not misinterpreted as age loss; such comments are coming from individuals in their 40’s and 50’s. The following are two responses to the Lincolnshire Post-Polio Network in May 2002:
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“Regarding the MMT you are correct. If done only a single time, it can give an erroneous idea of the true muscle strength and endurance. In a way, the key word here is “endurance” which reflects muscle strength on multiple contractions. Many polios will have good strength on a single contraction only to get weaker on repeated contractions.” Lauro S. Halstead M.D. Director of Post-Polio Program, National Rehabilitation Hospital, Washington DC, USA.
“You have done a brilliant job of describing a real problem for polio survivors and professionals that is, the limitations of the Manual Muscle Testing (MMT) scheme (a British invention, circa 1950, by the way). I quite agree with your comments and observations”. Fred Maynard, M.D. Marquette, Michigan, USA – President Board of Directors, Post-Polio Health International.
Issue 6
Each participant completed a questionnaire of 337 items enquiring about limb and bulbar weakness, pain, fatigue and activities of daily living, in a YES/NO format.
There is an issue here that is well recognised and reported on in medical articles, [12] that polio survivors are strong willed, determined, highly capable people, who, regardless of level of disability/ability, do not need any help thank you. They are reluctant to admit that they are having new symptoms, new functional decline, and even when admitted and/or confirmed by testing, it can still be some time before they take the advice to pace and rest and use aids and equipment. Using a yes/no questionnaire does not necessarily allow polio survivors to convey to the health professional HOW they actually perform the action in question. ‘Independently and with ease’ for ‘I could/can manage a small flight of stairs (about 10 steps) might turn out to be going up backwards sitting on their bottom.
Sorenson et al recognised ‘that it had been difficult to ascertain whether limbs, apparently uninvolved by the original disease process, might become affected by progressive symptoms years later. This is because of the reliance of the memories of an illness that occurred 30 to 50 years earlier.’
The mean age at polio onset was variously reported as 9, 12 or 13 with the youngest age at one year or less. Not only is it difficult for affected individuals and family members to remember, it must also be taken into account that the youngest patients had limited language levels at the time of their polio.
Issue 7
The high levels of recovery from Paralytic Polio of some polio survivors, including some who were in iron lungs, is often not realised. Many have competed in professional or high level amateur sports, some have joined the police and armed forces, or had other highly physical jobs. The damage from their polio was not easily visible externally.
Following a presentation at St. Thomas Hospital in London by Dr. Windebank on the results of the first five years study [4], Hilary Boone asked “How many of the 50 did sport?” Dr. Windebank replied that “one man could manage three holes of golf.” When asked, ‘No swimmers, athletes, rugby referees, people in the police or armed forces?’ he emphatically replied, ‘these people had paralytic polio’. Hilary Boone replied, ‘so did the people I am talking about, including myself. They all had paralytic polio and some were even in iron lungs’. The seminar restarted and Dr. Windebank did not answer a follow-up letter.
Conclusion
We believe the above throws doubt on the methods used in this study and the conclusions the authors made and continue to make from this research. The cohort steered towards those
• who had more severe deficits following recovery, [Method and Results 1991 – 3]
• who geographically still lived near to the clinic, [Method and Results 1991 – 3]
• ‘These subjects were not seeking medical attention; they were invited to participate on the basis of their having had polio’ [Discussion 1991 – 3]
It is highly possible that this cohort is not representative of the 608 residents of Olmstead County who had acute polio between 1935 and 1960. The results of the 50, now 38, people in this study cannot be extrapolated to the polio population of the United States. Sorenson et al’s conclusions, based on a study of patients who have been chosen/selected, without a control group, believed by them to be representative of the ‘polio population’, can in fact be misleading.
Sorenson et al state, ‘There are no confirmatory tests to reliably distinguish between the effects of the old disease from new progressive difficulties. It is a clinical diagnosis following history taking, physical examination, and test results.’ [3] Therefore we believe it is essential that any study group mentioned in a polio/post polio medical article is more clearly defined to allow readers to make comparisons with their patients.
More and more polio survivors who recovered to the greatest degree from paralytic polio are now presenting to health professionals with new symptoms of weakness, pain, fatigue and considerable functional decline in actions of daily living. These are people who have often led active lives, have competed at amateur and professional sports, and who have had highly physically demanding jobs. They now find they have to:-
• Change their occupation and often medically retire early
• Return to using/start using aids and orthotics
• Go back to/start using canes, crutches, walkers, electric scooters and wheelchairs.
• Modify their homes and/or move to single story homes
• Be prescribed or purchase electrically operated chairs and beds
• Recommence using/start using respiratory aids
• Go from being very fit and active to being less able than their parents
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 16
In fact the results of this study can and should only be compared to those polio survivors who match the level of ability, disability, symptoms and lifestyle of the 50 participants, now 38.
This cohort has also been used in another article in Neurology in 2005. [7]
Where do we go from here?
Terminology: Are reported symptoms related to the late effects of polio, post polio syndrome, post polio sequelae, unstable polio, post-polio muscular atrophy, another medical condition; or a combination?
To be perfectly frank Polio Survivors already experiencing new and unexpected symptoms and functional decline do not care what label they are given so long as:-
• All our reported symptoms are accurately assessed and recorded.
• Other conditions are checked for as there are no diagnostic tests.
• We are given the medical and financial support to manage our lives.
The Mayo Clinic have been aware for ten years since publishing the results of the 5 year level of their study that other health professionals and post polio support groups do not entirely agree with all the statements made regarding their Olmstead County Polio research. It is regrettable that following such critique, they did not extend their study to include more polio survivors who had recovered like the surgeon and were now experiencing considerable new difficulties.
It is a sorry state of affairs when polio survivors around the world must give up hours of their time to research their medical condition. To have to continually question and research the results of testing that do not corroborate your reported symptoms because of the way it has been carried out or recorded is unjust. Struggling on year after year, often deteriorating through incorrect advice and treatment or lack of it, has to come to an end.
Polio Survivors – a strong willed, determined, highly motivated, hard working group of people – want to live for as long as possible, doing as much as possible. We need a full and accurate base line assessment that takes into account the endurance of our weakening muscles. We need advice, and the understanding that it takes time to accept that we have to change our lifestyle. We need treatment where it is available, appropriate aids and equipment, and benefits so that we can financially cope in this world where anything ‘disabled’ has a high price label.
References – available from PSN on request by email to admin@poliosurvivorsnetwork.org.uk
Also available from PSN is My Polio Life, a resource to help explain deterioration to healthcare professionals
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 17
Tribute to Hilary Boone from Jo Cole and Deb Troops
I first met Hilary at a national Neurological Alliance (NA) meeting. Attending with the Chairman, Ginger Butler and his wife Verona, we cofounded the Tees Valley Durham and North Yorkshire Neurological Alliance (TVDNY) the year before.
I was the newbie having joined the steering group as an accredited volunteer for the British Epilepsy Association, now Epilepsy Action. Hilary and I found ourselves quietly giggling at some quite patronising material considering our knowledge. We ate lunch together and arranged to stay in touch. That was 2006.
Our friendship grew, we exchanged information regularly, meeting at Regional Alliance and NA AGM meetings in London with telephone and emails in-between. When I collaborated with a chap from West Berkshire Alliance to create Northern and Southern Regional Alliance hubs to reduce the travelling for some more disabled people, Hilary was the first to endorse and engage as a Northern member. The Northern and Southern hubs shared agenda’s, were vocal, well-informed and inclusive, with the specific aim of driving actions to underpin the National Service Frameworks for Long Term Neurological Conditions.
Sadly, the NSF came to end in 2010, with a change of politics and suddenly Neurological Conditions were too expensive for the NHS. Hilary had a lot to say about that! We met Deb Troops, leading the Greater Manchester Neurological Alliance (GMNA) and the friendship grew. As 3 unpaid carers who called a spade a shovel, we understood first hand how people managed their life long conditions day-to-day, not just medical appointments once a year. Everything that Hilary, Debs and I were striving for in our individual organisations, came to the table. The Regional Alliance meetings faded away with a change of NA CEO, members felt powerless at the deteriorating services. Hilary wanted to make a difference, worked hard to keep momentum going. She was allocated a special place when we launched our Self-Management Tool and ‘Open Door’ series of resources at Teesside University in 2017. In turn, she introduced me to a New Zealand Researcher who piloted our Self-Management Tool with people managing post-polio and we received excellent feedback. The GMNA disbanded, TVDNY morphed into Neuro Key but conversations between Hilary, Debs and I continued to advocate to improve knowledge and understanding in services in Greater Manchester, Lincolnshire and Tees Valley. Acute Neurology Departments everywhere are in dire straits.
As with all unpaid carers, Hilary found the paper work soul destroying because it hid the reality of everyday life concentrating on process, not the impact on people. She often called to let off steam. She was a problem-solver extraordinaire, nothing was judged or assumed, sound reasoning and evidence underpinned everything. She knew fudged answers when she saw them and asked uncomfortable questions of senior NHS professionals that she already knew the answers to.
I had been trying to contact her for weeks, been a summer of chaos here with increased demand for our advocacy. I wanted to let her know about our latest research project in the hope she could use it at Lincoln University. As always with dear friends, when you eventually got to catch up it was joyful, except this time. I kept hearing, “wrong number” on her phone. I found the saddest of truths on the website, that Hilary had passed away. She was in hospital when we last spoke, promising to catch up. I had a few tears, how I wished I could have said goodbye. Debs and I have faith she is with us in our determination and endeavour to improve outcomes for people with neurological conditions, impairments or disabilities. She is about somewhere telling us to get on with it!
Debs and I send very best wishes to all she left behind.
Rest easy Hilary, it’s been a privilege to know you.
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 18
Self-management Programme
In October 2017, a senior lecturer, Dr Stephanie Kilinç from Teesside University and Jo Cole from TVDNY Neurological Alliance hosted an event to launch a self-management framework that was designed by people with lived experience of living with a long-term neurological condition. Taking a more biopsychosocial approach to recognise a whole person, not just a diagnosis, we enabled people to work with us to explore what meaning and purpose in life really meant to them. Publication of our co-authored paper, ‘Finding Meaning and Purpose: A Framework for the selfmanagement of Neurological Conditions’ (Kilinc, Erdem, Healey and Cole) in Disability and Rehabilitation Journal – May 2021 led to us developing a comprehensive long-term condition, self -management tool to underpin our work to promote pan-neuro conditions being included on the NHS long-term condition strategic agenda.
We launched the next phase of the project just before 2020 lockdown and discovered that the University Ethics committee had refused ethics on the ground that people with neurological conditions did not have capacity to consent. We were astounded and created peer support and training within 2 weeks to explain neurological did not mean lack of capacity. Ethics was approved but the day we were due to begin, lockdown was announced.
Undeterred, we went digital and at the end of lockdown, we created a steering group
of people who lived with life-long health disabilities as peer mentors to participants in the research project. They led the work, including naming the project and during one of the sessions, we purchased the domain name too. Thus, the MyLife Tool self-management programme was realised.
www.mylifetool.co.uk
The project diversified and a resource for Long Covid was created by people living with the impact of the pandemic and Creative life to explore some of the benefits of Creative arts in improving well-being.
TVDNY became Neuro Key in 2023 and in 2024, the team secured funding from the University to develop the work, recruiting four people who had been Peer mentors and research assistants in previous projects. The Peer Researchers Backpack arrived in August 2024.
One of the people commented,” I am no longer unemployed, I am a Peer Researcher”
We hope we contribute to a body of knowledge that recognises the real value of lived experience in research and hope it continues to grow.
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 19
“Sometimes the smallest things take up the most room in your heart.”
– Winne the Pooh
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 20
First phase of polio campaign concludes successfully in Gaza
Over 187 000 children under ten years of age were vaccinated with novel oral polio vaccine type 2 (nOPV2) in central Gaza during the first phase of a two-round polio vaccination campaign, conducted between 1–3 September 2024. Vaccination coverage in this phase exceeded the initial estimated target of 157 000 children due to population movement towards central Gaza, and expanded coverage in areas outside the humanitarian pause zone.
To ensure no child is missed in this area, polio vaccination will continue at four large health facilities in central Gaza over the next few days. Vaccine doses have been supplied to these sites to meet any additional needs.
“It has been extremely encouraging to see thousands of children being able to access polio vaccines, with the support of their resilient families and courageous health workers, despite the deplorable conditions they have braved over the last 11 months. All parties respected the humanitarian pause and we hope to see this positive momentum continue,” said Dr Richard Peeperkorn, WHO Representative for the occupied Palestinian territory.
The first phase of the campaign was conducted by 513 teams, consisting of over 2180 health and community outreach workers. Vaccination was provided at 143 fixed sites, including hospitals, medical points, primary care centres, camps where displaced people are living, key public gathering spaces such as temporary learning spaces, food and water distribution points, and transit routes leading from central towards northern and southern Gaza. Additionally, mobile teams visited tents and hard to-reach areas to ensure they reached families who were unable to visit fixed sites. The presence of a substantial number of children eligible for vaccination who were unable to reach vaccination sites due to insecurity, necessitated special missions to Al-Maghazi, Al-Bureij and Al-Mussader – areas just outside of the agreed zone for the humanitarian pause.
Preparations are underway to roll out the next phase of the campaign, which will be conducted in southern Gaza from 5–8 September 2024, targeting an estimated 340 000 children below ten years of age. Some 517 teams, including 384 mobile teams, will be deployed. Nearly 300 community outreach workers have already begun outreach to families in southern Gaza to raise awareness about the campaign, while 490 vaccine carriers, 90 cold storage boxes, and other supplies have been transferred to Khan Younis for distribution to vaccination sites.
The third and last phase of the polio vaccination campaign will be implemented in northern Gaza from 9– 11 September 2024, targeting around 150 000 children.
At least 90% vaccination coverage during each round of the campaign is needed to stop the outbreak, prevent the international spread of polio and reduce the risk of its re-emergence, given the severely disrupted health, water and sanitation systems in the Gaza Strip. Vaccination coverage will be monitored throughout the campaign, and, when necessary, vaccinations will be extended to meet coverage targets as part of flexible strategies to ensure every eligible child receives their vaccine dose.
The two-round campaign, being conducted by the Palestinian Ministry of Health (MOH), in collaboration with the World Health Organization (WHO) and United Nations Children Fund (UNICEF), the United Nations Relief and Works Agency for Palestine Refugees (UNRWA) and many partners, aims to provide two drops of nOPV2 to around 640 000 children during each round.
“The successful delivery of the first phase of the campaign in central Gaza is a culmination of immense coordination among various partners, including the Global Polio Eradication Initiative (GPEI) and donors, and underscores the importance of peace for the health and well-being of people in Gaza. We call on all parties to continue fulfilling their commitment to the humanitarian pauses as the second phase of the campaign begins tomorrow,” said Dr Peeperkorn.
https://www.who.int/news/item/04-09-2024-first-phase-of-polio-campaign-concludes-successfully-in-gaza Source: World Health Organisation, News Release, 4 September 2024
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 21
Using Fitbit for Weight Management in Post Polio
It’s very important that we all manage our weight to avoid extra stress on our bodies.
In order to measure our calories we need to assess our food and drink and record it. This sounds like a challenge, but it’s simple with digital scales and scanning the barcodes on food and drinks. Once an item is recorded, it can be recalled and reused. This is useful, because we tend to eat and drink the same 20% of things 80% of the time.
I use my Fitbit to show my daily calories in and out as you can see in the image from the week of the 8th to 14th July.
It’s also very important that we have and maintain a healthy balanced diet with good proportions of carbohydrates, good fats and proteins. If we record our food and drink we automatically get a breakdown of the macronutrients as seen in the next image. We can also drill down into the nutrients, vitamins and minerals, salt and sugar in that food each day.
Having a log of our food and drink also helps us have an overview of our diet and the foods that are healthy and not.
This overview may help us maintain and feed a healthy microbiome which is the collection of all microbes, such as bacteria, fungi, viruses, and their genes, that naturally live on our bodies and inside us. Microbes are so small that they require a microscope to see them, but they contribute in big ways to human health and wellness.
This is my public Fitbit profile: https://www.fitbit.com/user/25D85C
If you have a Fitbit, you can ‘friend’ me and see a bit more of my real time movement information, which may be a useful benchmark to a fellow, post polio survivor. However, it’s important to know we are all different individuals and your level of mobility may be very different from mine.
I have also set up an International Post-Polio Syndrome (PPS) Group on Fitbit. This group is ring fenced by invitation only, which I invite all PPS friends to join.
– Alan Lee PSN Member
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 22
Useful Resources
| • | International Ventilator Users Networkwww.ventnews.org |
• Disabled Motoring UK
www.dmukdiscounts.co.uk
• Pain UK
www.painuk.org
• National Voices
www.nationalvoices.org.uk
• Neurological Alliance
www.neural.org.uk
• Rare Disease UK
www.raredisease.org.uk
• End Polio Now – Rotary International
www.endpolio.org
• European Polio Union
www.europeanpolio.eu
| • | British Polio Fellowshiphttps://britishpolio.org.uk |
• Post-Polio Health International
www.post-polio.org
• PA Polio Survivors Network
https://polionetwork.org
• Polio Quebec
www.polioquebec.org/eng/
• Polio Survivors of Marin
www.facebook.com/groups/163909760771171
• Atlanta Post-Polio Association
www.atlantapostpolio.com
• Nebraska Polio Survivors Association
www.nepolioorg.ipage.com
• Polio Australia
www.poliohealth.org.au
What Is Post-Polio Syndrome?
Polio, or poliomyelitis, is an infectious viral disease that affects the nervous system. Between the late 1940s and early 1950s, polio crippled around 35,000 people each year in the United States alone, making it one of the most feared diseases of the twentieth century. In 1955, Jonas Salk introduced the polio vaccine, stopping the spread of the disease and eventually eradicating it from the United States.
Post-polio syndrome (PPS) is a condition that affects polio survivors years after recovery from an initial acute attack of the poliomyelitis virus. According to the National Institute of Neurological Disorders and Stroke, researchers estimate that the condition affects 25 to 50% of polio survivors.
What Are the Symptoms of Post-Polio Syndrome?
Symptoms can appear 10 to 40 years after the initial illness. The most common symptoms of PPS include slowly progressive muscle weakness, fatigue (both generalized and muscular) and a gradual decrease in the size of muscles (muscle atrophy). Pain (from joint degeneration and increasing skeletal deformities such as scoliosis) is common and may precede the weakness and muscle atrophy.
Post-polio syndrome is rarely life-threatening, but the symptoms can significantly interfere with an individual’s ability to function independently. Respiratory muscle weakness, for instance, can result in trouble with proper breathing, affecting daytime functions and sleep. Weakness in swallowing muscles can result in aspiration of food and liquids into the lungs and lead to pneumonia.
How Is Post-Polio Syndrome Diagnosed?
There are no laboratory tests specific for PPS, and symptoms vary greatly among individuals. Physicians diagnose PPS after completing a comprehensive medical history and physical examination, and by excluding other disorders that could explain the symptoms. While there is no diagnostic test for PPS, physicians may use certain tests to rule out other conditions. Among the most commonly used is electromyography (EMG), which measures the tiny electrical discharges produced in muscles. A thin-needle electrode is inserted into the muscles to be studied, and an instrument records electrical activity in the muscles at rest and during contraction.
How Is Post-Polio Syndrome Treated?
Although there are currently no effective pharmaceutical treatments that can stop deterioration or reverse the deficits caused by the syndrome itself, there are recommended management strategies, including:
• Physical, occupational, and occasionally, speech therapy
• Exercise, especially cardiopulmonary endurance training, under supervision of experienced health professionals
• Equipment to help with walking, breathing, and other important functions
• Lifestyle changes to avoid rapid muscle tiring, total body exhaustion, pain and fatigue
• Education, support groups and counselling for individuals and families.
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 23
Chair – Simon Parritt simon.parritt@poliosurvivorsnetwork.org.uk Trustee – Zsuzsanna Snarey zsuzsanna.snarey@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins verite.reilycollins@poliosurvivorsnetwork.org.uk
Trustee – Barbara Taverner barbara.taverner@poliosurvivorsnetwork.org.uk
Trustee/s – Vacancies please contact Toni for more information
Operations Team
Admin and Enquiries – Toni Dunlop psnadmin@poliosurvivorsnetwork.org.uk
Management Committee [Trustees]
With grateful thanks to the generous legacy from Ms A Brown, we are able to make
membership FREE whilst our funds remain above £10,000.00
Website www.poliosurvivorsnetwork.org.uk
Write to us at PO Box 954, Lincoln, LN5 5ER, UK Email psnadmin@poliosurvivorsnetwork.org.uk
Phone us on 07480 110334 and we will ring you back when we collect our messages
UK Members – receive newsletter by post and/or email (overseas members newsletters by email only)
All donations, small or large, towards our work are gratefully received
Donate by cheque to Polio Survivors Network by PayPal to treasurer@poliosurvivorsnetwork.org.uk
By PayPal donate link: https://bit.ly/2KzyAyE
The Gift Aid scheme. Charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer. This ‘transitional relief’ does not affect your personal tax position. You must pay tax at least equal to the amount reclaimed on your donations in the current tax year. If you pay tax at the higher rate, you can reclaim tax relief on your gross donation at 20% (i.e. the difference between the higher rate of tax at 40% and the basic rate at 20%).If you have not filled in a current Gift aid form please contact us and we will email/post you one. Thankyou.
Editors Note: Articles from Polio Survivors and Health Professionals welcomed
The most accepted articles by NHS professionals we have found are:
PatientPlus article POST-POLIO SYNDROME
Written by U.K. Doctors for Doctors
http://patient.info/doctor/post-polio-syndrome
NB Respiratory and Sleep Problems Section very informative. ——————————
GOOD ANAESTHETIC ARTICLE – English version used by many PPS Groups
POLIO PATIENTS AND SURGERY – Information for health staff.
Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims
http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf
Printed copies on our headed paper with permission are available.
© Polio Survivors Network – Volume 11, Issue 7 [127] October 2024 Page 24
…because WE’RE STILL HERE!
www.post-polio.org
Sign the petition here: https://tinyurl.com/msrvep3a
Are you a polio survivor facing challenges with fuel payments? We have collated some useful support options:
British Polio Foundation Offers guidance on accessing financial aid, including help with fuel costs. www.britishpolio.org.uk/heating-grant
Age UK Offers advice on energy efficiency, grants, and fuel payment schemes. www.ageuk.org.uk/information-advice/money-legal/debt-savings/energy/cost-ofliving-payments/
StepChange Support if you’re in debt with your energy bills www.stepchange.org/
Contact List of help available in each nation www.contact.org.uk/help-for-families/ information-advice-services/money-debt/help-with-household-bills/
Scope Provide a list of further places to apply for grants www.scope.org.uk/advice-andsupport/energy-bills-help
Ofgem Provide information on the Warm Home Discount www.ofgem.gov.uk/environmental -and-social-schemes/warm-home-discount-whd/warm-home-discount-whd-eligibility
Great advice from Money Saving Expert www.moneysavingexpert.com/utilities/how-toget-help-if-you-re-struggling-with-your-energy-bills-/
Remember, you are not alone, these organisations are here to help you
Post Polio Matters Volume 11 Issue 7 Read More »
Post Polio Matters Volume 11 Issue 6
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 1
Polio Survivors Network Newsletter
July 2024 — Volume 11 Issue 6 of 12 [126]
| Lincolnshire Post-Polio Library100+ articles | Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network |
Decoding Polio’s Legacy: Peel back the layers to understand polio’s lasting impact!
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 2
This publication is provided free thanks to the generous donations of our lovely members.
Thank you so much!
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.
| Page 2 | Contents, Donation acknowledgements |
| Page 3 | Zsuzsi’s Trip to Budapest |
| Page 4-6 | EPU Conference Budapest—Assessing the Scale of the Long-term Effects of Polio. The Twin Challenges of Measuring Risk and Effective Diagnosis. |
| Page 7 | Toni Writes |
| Page 8 | Can you help our new member? |
| Page 9 | Response to our new member, 2024 Polio Survivors Network Annual General Meeting, video explaining Post Polio Syndrome |
| Page 10 | Navigating Temperature Extremes |
| Page 11 | “New” Areas of Muscle Weakness |
| Page 12 | Decoding Polio’s Legacy: Peel back the layers to understand polio’s lasting |
| Page 13 | That Last Straw |
| Page 14 | How Polio and PPS Impact our Character, Personality and Emotional Experiences, Useful Resources |
| Page 15 | Management committee details, Articles most widely accepted by NHS |
| Back page | Polio Survivors and the Balloon of Unity |
| Donations and Charity Incentives Paid(since last newsletter) | |
| Donation HY | £20.00 |
| Donation ML | £50.00 |
| Donation JN & MN | £60.00 |
| Donation VS | £30.00 |
| Donation RH | £101.62 |
| Total | £261.62 |
PayPal donate link:
https://bit.ly/2KzyAyE
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 3
Zsuzsi’s Trip to Budapest
I arrived in Budapest, where I was born, for the European Polio Union Conference
| on | Wednesday the 22nd of May and settled into the Hotel on the side of the Danube opposite the beautiful Houses of Parliament which was built with inspiration from |
the British Houses of Parliament. Budapest is a city easy to explore by electric
buggy, on foot, or public transport. Some of the trams and most of the buses are accessible. The next day we met my cousin in a large indoor shopping centre and we shared a Hungarian specialty, a delicious “lángos”. It is a very filling deep-fried bread dough, similar to a pizza. It is a meal by itself!
On Friday evening we had dinner in the hotel and we met several people from all over Europe attending the Conference. There were 34 people at the meeting.
Unfortunately, I became ill during the night and after listening to the introductory speeches on Saturday morning I had to go back to bed. I managed to give my presentation in the afternoon but then I felt ill again. Luckily the secretary Stefan Grajcar emailed me the PowerPoint presentations and my husband attended the talks instead of me and he also stood in for the group photo. I was able to meet the main speaker Cathleen Davies before she left. She told me about her PhD research which will be published soon and will have a large impact on Post Polio Survivors everywhere.
On Sunday we happened to come across a group wearing 18th Century costumes walking across the Chain Bridge closed off to traffic for the day. It must have been a very hot day for them! This was the first bridge built across the Danube in 1849 by a Scottish engineer Adam Clark who first tried out the design on the Thames at Marlow. The parts were shipped out from England. The lion is the same design as that on Trafalgar Square. There are some new museums such as the House of Music where there was an exhibition of Divas from the Victoria and Albert Museum on its first stop going round the world and a permanent exhibition of the history of music which was so interesting that we spent all day there.
I had a wonderful time, and I am very thankful that I was able to represent the Polio Survivors Network.
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 4
Assessing the Scale of the Long-term Effects of Polio. The Twin Challenges of Measuring Risk and Effective Diagnosis.
The main talk at the European Polio Union’s (EPU) annual Conference in Budapest was given by the guest speaker Cathleen Davies of the UCL Institute of Epidemiology and Health.
She illustrated the importance of asking the right questions to interpret and use the answers by referring to the Hitchhikers Guide to the Galaxy in which the immense computer, Deep Thought, after working on the question for 7.5 million years, finally gives the answer to life, the universe and everything as 42. A huge disappointment because the questioners did not know what this meant. Deep Thought explained that only by understanding the question can we interpret and use the answer. We need to ask the right questions to move beyond the numbers if we are to understand the impact of polio on a global scale.
There is a difference between the Long-term Effects of Polio, the paralysis that follows the initial infection, the Late Effects of Polio (LEoP) such as pain, fatigue, muscle wasting, cardiovascular disease, and diabetes, which are the result of immobility, and Post Polio Syndrome (PPS) a neurological condition, believed to be the result of the branching of remaining motor neurons which become stressed over time.
A literature search for the number of polio survivors in the world will come across this number: 20 million Polio survivors globally. It is repeated in many academic papers and referenced again and again. Evidence was presented that suggests that this number has no hard basis.
What is a polio survivor? Approximately 70% of polio infections are asymptomatic. The virus can be found in nasopharyngeal secretions and stool for days or weeks and can be transmitted to others. Approximately 24% of infections consist of a minor, nonspecific illness, traditionally known as ‘abortive’ poliomyelitis, and characterized by a low fever, sore throat, and complete recovery within a week. Nonparalytic aseptic meningitis occurs in 1% to 5% of infections. The clinical presentation includes stiffness, pain, or abnormal sensation in the neck, back, or legs. Symptoms last up to 10 days followed by complete recovery. Less than 1% of all polio infections in children result in permanent flaccid paralysis. These clinical boundaries are rather artificial, severity of illness lies on a continuum. Neurological assessment of poorly children is challenging and inexact, so milder or temporary paralysis is easily missed. When we start to consider healthcare systems in more challenging environments, then the diagnosis, particularly for the 99% of those who are not left with obvious lasting paralysis becomes more difficult.
PPS is a diagnosis of exclusion based on history, symptomology, clinical observation, and exhaustive physical clinical tests. PPS has been observed in siblings of polio survivors, those with much milder or asymptomatic exposure may be at a significant risk. Twins research suggested a high prevalence of PPS symptoms in twins and siblings, with a suggestion that this would have an impact on public health policy. An impact that failed to materialise. Siblings may exhibit higher rates of PPS-like symptoms’ than their contemporaries because if they develop PPS symptoms, then the disease is on the list of possibilities for diagnosis while others who may have been asymptomatically exposed are simply overlooked. It would be reasonable to assume that unvaccinated siblings, living in the same household as a paralytic polio survivor had been exposed to the virus asymptomatically. This gives a population of asymptomatically exposed polio survivors from whom we could calculate a risk for PPS. This could be applied globally.
Whilst these may offer a clinical picture compatible with PPS, diagnosis remains at the discretion of the doctor. If polio survivors with a known history of paralytic polio struggle to get a diagnosis, those whose initial polio infection has been uncertain, ignored, or completely missed, stand even less chance of success. Studies have shown that up to 50% of anterior horn cells to a muscle could be lost whilst still retaining clinically normal strength. It is therefore quite possible to have sufficient polio damage to create a risk of PPS, without a history of clinical paralysis.
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 5
Criteria for Post Polio Syndrome as formulated by the ‘March of Dimes’:
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 neurologic examination, and
signs of denervation on electromyography
2. A period of partial or complete functional recovery after acute paralytic poliomyelitis, followed by an
interval of stable neurologic function, usually 15 years or more
3. Gradual or sudden onset of progressive and persistent new muscle weakness or abnormal muscle
fatigability, with or without generalised fatigue, muscle atrophy, or muscle and joint pain
4. Sudden onset symptoms may follow a period of inactivity, trauma, or surgery
5. Less common symptoms attributed to PPS include new problems with breathing or swallowing
6. Symptoms persist for at least a year
7. Exclusion of other neurologic, medical, and orthopaedic problems as causes of symptoms
Compare this with a set of criteria, proposed by Polio Survivors Network UK which suggests a much wider definition of primary illness, and a credible history of polio exposure whilst unvaccinated.
Diagnostic Criteria Proposed by Polio Survivors Network UK Based on Halstead 2000 :
1. A history of remote paralytic polio or findings on history, physical examination results, and laboratory
studies compatible with poliovirus damage of the central nervous system in earlier life
2. A period of recovery
3. A stable period of functioning, from 10 to 50+ years.
4. New symptoms with no other explanation
There is a dichotomy between the clinician and the patient experience, something that needs addressing. Diagnosis of PPS is very difficult, especially for those who have no previously diagnosed history of polio infection. Around twice as many polio survivors believe that they have PPS as are formally diagnosed. In a British Polio Fellowship survey, 83% of respondents believed that they had PPS, but only 32% believed that their GP knew anything about PPS.
In the formal March Of Dimes diagnostic criteria, confirmed initial polio infection is a requirement for diagnosis. So, some clinicians are going ‘off piste’ to identify previously overlooked exposure and link it to the symptoms seen in later life. If they can do it, so can others.
The self-help document provided by the Polio Survivors Network helps polio survivors illustrate their symptoms and prepare for healthcare appointments. A tick box exercise clarifies the experience of the disease. Some of these are:
• Physical fatigue
• Mental fatigue
• Poor concentration
• Loss of ability to do actions of daily living
• Symptoms not believed by health professionals
• Symptoms not believed by family member
• No diagnosis but continues to deteriorate
Babies born in 1988 would be just 36 years old today when most countries of the world were affected by polio. We have no idea how many of them might be potentially susceptible to PPS. Whilst the Late Effects
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 6
of Polio are not curable, an accurate diagnosis informs appropriate treatment, often consisting of the correct advice, extra health prevention precautions, avoiding unnecessary overtreatment, or just an empathetic understanding.
The vaccination rate required to protect a given population from polio is generally accepted to be 80-85% A quick check through WHO’s latest available figures shows around 50 countries failing to meet that target in 2022. Nigeria with a population of 220 million and a vaccination rate of 62% and Ukraine with a vaccination rate of 69% suspected to be falling further due to the ongoing conflict. Lower vaccination rates increase the risk of vaccine-derived polio infections among unvaccinated individuals. Live vaccines shed by individuals receiving the oral polio vaccine enter the water supply chain, potentially mutating back to their pathological form.
It is hoped that understanding the risk of developing Post Polio Syndrome and highlighting underdiagnosis amongst all categories of polio survivors will improve understanding of the potential prevalence of the Late Effects of Polio on a global scale and improve the patient journey to diagnosis.
cathleen.davies.19@ucl.ac.uk
The Brain & Spine Foundation provide creative groups and activities for those with neurological conditions.
Their aim is to create a safe and supportive space for people to try a creative activity, share ideas and gain inspiration.
Click this link for more information Creative Groups & Activities
or visit
https://www.brainandspine.org.uk/support-for-you/peer-support-groups/creative-groups/
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 7
Toni Writes …
What are you grateful for today? Do you express your gratitude enough? Something to consider perhaps. Recently we got a beautiful kitten and his sheer joy at life and the tiny things got me thinking about gratitude. It really is a universal language that transcends all barriers, including those posed by illness or disability. It is a powerful expression that can be conveyed through various means, even the smallest gestures can have a profound impact.
Gratitude is more than just saying “thank you.” It’s an emotion that reflects appreciation and acknowledgment of the positive aspects of life. Non-verbal communication is a powerful tool for expressing feelings without words. A smile, a nod, or a gentle touch can convey thanks in a way that words sometimes cannot. Acts of kindness are a direct way to demonstrate gratitude. Simply sharing your time, helping, a kind word, a small gift or just being there can speak volumes. When we show our thanks or gratitude, it creates a ripple effect and fosters a community where everyone feels valued and appreciated, regardless of their abilities.
Everyday interactions can provide opportunities to show gratitude. Whether it’s a nod of acknowledgment to a caregiver or a message of thanks to a friend, these small gestures build stronger relationships and a more supportive community. Studies have shown that expressing gratitude can have a positive impact on mental health. Finding ways to show gratitude can be a source of strength and resilience. By focusing on the small ways in which gratitude can be shown, we highlight the importance of every individual’s contribution to a kinder, more appreciative society.
Gratitude is not confined by one’s physical abilities. It is a sentiment that can be felt deeply and expressed in countless ways.
So, here’s a big thank you from me for your inspiring stories, top tips, kind support and expressions of appreciation. A real testament to the enduring spirit of gratitude that exists within every polio survivor, regardless of your challenges.
Take care
Toni x
From our readers: Many thanks for this. – AL
As an ex-journalist I am full of admiration over the latest Newsletter. You really have done an outstanding job. BIG pat on the back. – VRC
Hilary, I was really impressed with your detailed account in the Editorial, as well as Toni and Simon’s contributions. All the articles were interesting and useful. I will forward the optimal clinical pathway to my surgery. Congratulations on a great newsletter! – ZS
Thank you so much for your email and that newsletter. I found so much useful info on your website, I’m really glad I found your organisation. – SS
| psnadmin@poliosurvivorsnetwork.org.uk | |
| Post | PO Box 954, Lincoln, LN5 5ER |
| Website | www.poliosurvivorsnetwork.org.uk |
| Phone | 07480 110334 |
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 8
Can you help our new member?
Hello and greetings from the Netherlands. I came across your network recently, and really like your intention, to educate people on polio and PPS. I am a retired physician, doing some research on Post Polio Syndrome as far as solutions and helpful treatments, and would like to hear from your members what has been proven to support their condition best. I have 2 people in my circle of acquaintances who are successfully battling the condition. Thank you! – JL
Editor’s Comments: Please can you send any comments or experiences that you have had by email to us at psnadmin@poliosurvivorsnetwork.org.uk so we can then pass these on.
A New Member’s Thoughts
Hello, I contracted Polio in September 1949 at the age of 13 months whilst visiting my aunt in Southend, I was immediately put into an iron lung where I stayed for 5 months. When I came out, I could breathe for myself!!! but could only roll my head from side to side.
After a run in with sister on my ward my mother announced that she was taking me home. At this point the doctors and nurses remonstrated saying that was impossible, to which my mother replied well you’re not doing anything for me here I’ll exercise him myself. When asked why she was going to do this her simple reply was “because I’m his mother and that’s what mothers do”. My mother was a Taurus and didn’t stand for nonsense from anyone. The upshot was that in September 1953 I walked into school with callipers on both legs.
I was stubborn and had to do everything for myself. I got through school with 5 O Levels and then did an OND in Electrical and Mechanical Engineering. I then went Newcastle College of Art and Industrial Design and came out of College in June 71 right into a mini recession and design jobs like hens teeth so I found an advert in the local paper for jobs at The District Valuers Office a 5 minute walk from where we were living (I was married now). So, I started there in September 71 and ended up as Rating Surveyor. After three years and not being able to see any progression, I took the Civil Service exam and became an EO Examiner in the nicely named Enforcement Office chasing Tax arrears. This lasted until early 81 when were asked anyone was interested in going into IT. At Long last I had found my ideal home up until retired as a Senior Communications and Security specialist in 2008.
All this toing and froing had left me drained because I had always listened to the Use it or Lose it mantra that we now know was the worst advice possible. I’m now wheelchair bound due the arrogance of a pair of Surgeons dismissing my protestations that my knee was also damaged. At 102 weeks I was finally given an arthroscopy of my knee!!! The result show severe damage to the anterior cartilage of my knee which was causing all the pain. But even worse all I am being offered is full knee replacement (a no no due to osteoporosis) or knee fusion locking the leg in one position. As this leg is my prime mover it’s condemning me to using a chair for good.
Sorry for being so long winded but I’ve found writing this down quite cathartic. Thanks, GK
Editor’s Comments: Welcome to our network, we hope you find it helpful in many ways. I am sure your thoughts will resonate with our community. I wonder if others would like to share their experiences and experience how cathartic this can be, send them to psnadmin@poliosurvivorsnetwork.org.uk for inclusion in the next newsletter. Please see the next page for a response to your experience.
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 9
Response to new member GK
Your account has struck a chord with me as I also caught polio in September 1949, although I was in Budapest, Hungary and I was 8 years old. Luckily, I did not need an iron lung, but I was fortunate as there was none available at that time. I had an equally determined mother, as you did, who came to stay with me in the hospital until she could take me home a few weeks later and started a regime of exercises to get me walking. It took over a year. I am so grateful for her dedication and strength of will.
I started back in school in 1953 with one crutch and my mother’s arm. The school was up a steep hill. But she would not allow the doctors to put me in callipers. Eventually, I was walking with just one stick and like you, I managed to get a good education. I got a Chemistry degree and started working in research but had to give it up when I had my children and became a teacher.
PPS has also caught up with me and I find walking very hard even with two sticks. I also have callipers on both legs to support my knees. I would not have a knee fusion or knee replacement. I use an electric buggy outdoors and walk very little in the house.
So our stories are very similar. Thank you for sharing yours. Zsuzsanna Snarey
2024 Polio Survivors Network Annual General Meeting
We are holding our 2024 Polio Survivors Network Annual General Meeting on Monday 19 August online using Microsoft Teams at 1:30 p.m. – 3.30 p.m. (British Summer Time).
Join Us Virtually! Send your name and email address to us at psnadmin@poliosurvivorsnetwork.org.uk and we’ll make sure you get all the details to log in and participate in shaping our future.
Your Voice Matters! If you’re unable to join us, your vote still counts. Please complete this Voting Form by Friday 16 August to ensure your voice is heard and to help us meet our quorum.
Received your newsletter by post? You’ll find a printed form included for your convenience.
We look forward to seeing you there
PSN Management Committee
Want a clear explanation of Polio and Post Polio Syndrome to share with others?
Try this video from the Khan Academy Medicine (created by Ian Mannarino and hosted on YouTube)
https://www.youtube.com/watch?v=aBBTiPsYUVA
These videos do not provide medical advice and are for informational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any Khan Academy video.
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 10
Navigating Temperature Extremes
As the seasons shift and climate change wreaks havoc, so do the challenges faced by polio survivors. The delicate dance between heat and cold intolerance becomes a central theme in our lives.
Our Internal Thermostat
Imagine a tiny control centre nestled deep within your brain—the hypothalamus. This unassuming region plays a pivotal role in regulating body temperature. For most, it orchestrates a symphony of responses: when it’s cold, veins and arteries constrict to retain warmth; when it’s hot, they dilate to release excess heat. For polio survivors, this symphony faces disruptions.
Cold Feet and Purple Toes
Polio survivors often describe their feet as always being cold and often blue-tinged. The culprit? Damaged neurons that fail to signal blood vessels to constrict. As a result, warm blood flows near the skin surface, dissipating heat and leaving behind those infamous “polio feet.”
Heat Waves
It seems that polio survivors also struggle with heat intolerance. Our bodies rebel against rising temperatures, sweating intensifies, clothes cling and we are uncomfortable. The brain’s thermostat, once damaged by the poliovirus, also seems to struggle to orchestrate a response.
What can help?
We must learn to dress as if it were approximately 10°C (20°F) cooler than the actual temperature. We have learned that when we lose body temperature our symptoms are triggered—muscle pain, fatigue, and vulnerability. Another tip is to try wool or polypropylene items.
In the heat wearing cooler fabrics can help and some find personal cooling devices to be helpful. Plan ahead and try to avoid going from very hot to very cold environments more than you have to as this can be very tiring on the body.
For more information check out these links:
Dr. Richard L. Bruno (Polio Network):
Inability to Manage the Heat https://polionetwork.org/archive/f4cig6m3ttl3i4t5bw34d9xow0qzz6
A warming winter tale for everyone who hates the cold https://polionetwork.org/archive/md6xsgufinqrel0vuuo07gamus4too
Polio New Zealand:
Heat and Cold Intolerance
https://polio.org.nz/wp-content/uploads/2021/09/Thermoregulation.pdf
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 11
“New” Areas of Muscle Weakness
Question: When I had polio, my legs were completely paralyzed but my arms were not affected. When I recovered, I walked for many years with a very pronounced limp. I now have leg muscle weakness, use a long leg brace and a manual wheelchair. But I am beginning to experience pain and muscle weakness in my upper arms. Could I have weakness where I had never had polio weakness? Is it true that paralysis or even muscle weakness weren’t necessary for your whole body to be affected by PPS muscle weakness?
Dr. Bruno’s Response: Yes, that’s correct. Even if you weren’t paralyzed, Dr. David Bodian showed in 1949, with 158 human autopsies of polio “non-survivors”, that if you had muscle weakness anywhere, 90% of your muscles and their motor neurons were damaged, even if not killed, by the poliovirus. Add decades of physical overuse and, wham, PPS muscle weakness! The overuse causes wearing out of remaining poliovirus-damaged neurons and produces weakness of muscles thought to be unaffected by polio.
Late onset muscle weakness can show up anywhere, regardless of the degree of initial paralysis…or none. Even “non-paralytic” polio survivors could have had wide-spread motor neuron damage but not enough in any one muscle to cause weakness initially. But those remaining, poliovirus-damaged neurons still fail with overuse abuse over time.
This article can help explain: “Non-Paralytic” Polio Causing PPS
Written By Richard L. Bruno, HD, PhD
I used to be able to do cartwheels. Now I tip over putting on my underwear!
I hate it when I see an old person and then realize we went to high school together.
I told my wife she should embrace her mistakes. . . so she hugged me.
My wife says I only have 2 faults. I don’t listen and something else . .
I thought growing old would take longer.
Scientists say the universe is made up of protons, neutrons and electrons. They forgot to mention morons.
The adult version of “head, shoulders, knees and toes” is “wallet, glasses, keys and phone.”
Wi-fi went down for five minutes, so I had to talk to my family. They seem like nice people.
If you see me talking to myself, just move along. I’m self-employed; we’re having a staff meeting.
I came, I saw, I forgot what I was doing. Retraced my steps, got lost on the way back, now I have no idea what’s going on.
Credit to Second Time Around Publication of the Boca Area Post Polio Group
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 12
Decoding Polio’s Legacy: Peel back the layers to understand polio’s lasting impact!
Post-polio syndrome (PPS) emerges as a companion on our shared path as survivors, quietly whispering its presence decades after our initial battle with poliomyelitis. The trio of pain, fatigue, and weakness may knock at our door and occasionally sleep disturbances, breathing difficulties, and even muscle atrophy but we stand resilient. What we experience is often an unseen struggle. It is a new strength that defines us – the gradual emergence of endurance, a testament to our nevergive-up spirit.
PPS doesn’t arrive unannounced but instead seems to adhere to set criteria:
1. Polio: Our history echoes – motor neurons lost, resilience gained. Electromyography (EMG)
confirms our journey.
2. Stable Years: After recovery, we may tread a stable path for 15 years or more.
3. Symptoms: Gradual weakness, fatigue, and joint pain may now be our companions. Breathing
and swallowing may be experienced.
4. Exclusions: We rule out other medical culprits, seeking clarity that this is likely PPS
Bracing, AFOs, KAFOs, walking sticks (canes), customized shoes, weight management, wheelchairs, scooters, walking frames, adapted homes – they’re our tools. We learn to listen to our bodies, pacing ourselves. Assistive devices become our partners, and rest is our secret weapon.
PPS isn’t a foe to fight; it’s a companion to understand. We adapt, we learn, and we thrive. Our journey is uncharted, but our spirit remains undeterred.
Resilience in a Single Stroke
Much like the continuous line that forms this herd of giraffes, polio survivors show unwavering strength and interconnectedness. Our journey, marked by challenges and triumphs, echoes the unbroken spirit captured in that single stroke.
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 13
That Last Straw
by Millie Malone Lill Polio Perspective May 2024
Sometimes, we people pleasing polio survivors have a hard time admitting that we can’t do something. By “do something,” I don’t mean doing something adequately or well enough. Oh no. We have to do that something better than anyone else. Good enough is simply not good enough.
In our recovery period, most of us became used to using every motor neuron in our arsenal because that is what it took to do what our able bodied peers could do easily. This became our norm. At the time, no one realized that we did not grow entire new neurons to replace the damaged or killed ones that the polio virus took. Nope, but the damaged neurons did sprout little fingers to reach out to the muscles in an effort to mimic complete recovery. We were cured, or at least that was the popular belief.
Since we were now cured, there was no excuse not to do what everyone else did. That earlier try harder philosophy was now our mantra. You can do it, come on, you aren’t even trying! Stop that limping. No, you can’t be tired, look at your friend, he hasn’t even broken a sweat. Keep up, lazy person. This led to many of us becoming Type A personalities. We tried so hard to be normal that we left normal behind in the dust.
Looking back, we realize that many things really were harder for us. We weren’t exactly cured as we thought. Those little fingers that our hardworking neurons put forth were not complete neurons after all, just extensions of other neurons that were, themselves, somewhat damaged. After so many years of trying so hard, those little fingers finally died off. This led us back to the acute stage of polio. Some of our parts no longer worked as they had. It’s kind of like patching a hydraulic hose with duct tape. It works for awhile, but that tape is not a permanent fix. Under pressure, that duct tape will eventually lose its sticking power and will come off, leaving your hydraulic hose in the same condition that inspired you to put the duct tape on it in the first place. Unfortunately, duct tape isn’t going to work on damaged neurons.
After a lifetime of trying so hard, we have difficulty realizing that the duct tape is no longer doing its job. We have to slow down, we have to prioritize our activities to include things we find enjoyable and things we can’t avoid, things we would like to do and things we are beginning to realize we can no longer do. We can’t just stop doing. At the same time, we want to avoid that last straw, the one that limits our activities to just the bare necessities of life. Added to the overworking that damages our remaining neurons, we must realize that the aging process itself kills off a few.
Does this mean our lives must be spent just enduring rather than enjoying? Not necessarily. PPS is progressive, but it can be slowed down. Listen to your body. When it signals to you that you need to rest, rest. Divide the tasks you must do into small bites. Do a little, rest a little. It might be a plan, if you can afford it, to hire someone to do the heavy stuff. Investigate benefits your insurance plan might cover. Medicare often offers services you might qualify for. Most importantly, listen to when your body says its load of straw is complete. Time to rest. Later, once you have unloaded today’s load of straw, you can pick up that last single straw so much easier tomorrow.
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 14
Useful Resources
• International Ventilator Users Network
www.ventnews.org
• Disabled Motoring UK
www.dmukdiscounts.co.uk
• Pain UK
www.painuk.org
• National Voices
www.nationalvoices.org.uk
• Neurological Alliance
www.neural.org.uk
• Rare Disease UK
www.raredisease.org.uk
• End Polio Now – Rotary International
www.endpolio.org
• European Polio Union
www.europeanpolio.eu
• British Polio Fellowship
https://britishpolio.org.uk
• Post-Polio Health International
www.post-polio.org
• PA Polio Survivors Network
https://polionetwork.org
• Polio Quebec
www.polioquebec.org/eng/
• Polio Survivors of Marin
www.facebook.com/groups/163909760771171
• Atlanta Post-Polio Association
www.atlantapostpolio.com
• Nebraska Polio Survivors Association
www.nepolioorg.ipage.com
• Polio Australia
www.poliohealth.org.au
How Polio and PPS Impact our Character, Personality and Emotional Experiences
A video produced by Post-Polio Health International (PHI) video on how polio and PPS impacts polio survivors, presented by Hal Goldberg. This video is part of PHI’s 2024 Educational Series.
Watch here:
https://www.youtube.com/watch?v=1y2E6Be5JCU
PHI’s mission is to collect, preserve and make available research and knowledge to promote the well-being and independence of polio survivors, home ventilator users, their caregivers and families and to support the health professionals who treat them. For more information about the late effects of polio visit www.post-polio.org
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 15
Chair – Simon Parritt simon.parritt@poliosurvivorsnetwork.org.uk
Trustee – Zsuzsanna Snarey zsuzsanna.snarey@poliosurvivorsnetwork.org.uk
Treasurer, Newsletter Editor – Hilary Boone hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins verite.reilycollins@poliosurvivorsnetwork.org.uk
Trustee/s – Vacancies please contact Toni for more information
Operations Team
PSN Admin, Enquiries and Website – Toni Dunlop 07480 110334 psnadmin@poliosurvivorsnetwork.org.uk Printing – Imprint Colour Printers, Lincoln
Management Committee [Trustees]
With grateful thanks to the generous legacy from Ms A Brown, we are able to make
membership FREE whilst our funds remain above £10,000.00
Website www.poliosurvivorsnetwork.org.uk
Write to us at PO Box 954, Lincoln, LN5 5ER, UK Email psnadmin@poliosurvivorsnetwork.org.uk
Phone us on 07480 110334 and we will ring you back when we collect our messages
UK Members – receive newsletter by post and/or email (overseas members newsletters by email only)
All donations, small or large, towards our work are gratefully received
Donate by cheque to Polio Survivors Network by PayPal to treasurer@poliosurvivorsnetwork.org.uk
By PayPal donate link: https://bit.ly/2KzyAyE
The Gift Aid scheme. Charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer. This ‘transitional relief’ does not affect your personal tax position. You must pay tax at least equal to the amount reclaimed on your donations in the current tax year. If you pay tax at the higher rate, you can reclaim tax relief on your gross donation at 20% (i.e. the difference between the higher rate of tax at 40% and the basic rate at 20%).If you have not filled in a current Gift aid form please contact us and we will email/post you one. Thankyou.
Editors Note: Articles from Polio Survivors and Health Professionals welcomed
The most accepted articles by NHS professionals we have found are:
PatientPlus article POST-POLIO SYNDROME
Written by U.K. Doctors for Doctors
http://patient.info/doctor/post-polio-syndrome
NB Respiratory and Sleep Problems Section very informative. ——————————
GOOD ANAESTHETIC ARTICLE – English version used by many PPS Groups
POLIO PATIENTS AND SURGERY – Information for health staff.
Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims
http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf
Printed copies on our headed paper with permission are available.
© Polio Survivors Network – Volume 11, Issue 6 [126] July 2024 Page 16
| …because WE’RE STILL HERE!www.post-polio.org |
| Outside the EPU Conference in Budapest June |
Polio Survivors and the Balloon of Unity
In this whimsical scene, the elephant’s gentle grasp on the balloon depicts the shared experience and community among polio survivors. The rabbit gazes up at the same balloon expressing shared hope and the courage to journey together.
2024 –EPU Secretary Stefan Grajcar and his wife Gizka along with Els Symons from the Post Polio Group Vereniging Spierziekten Nederland (VSN) from the Netherlands
Just as giraffes have long necks to adapt to their environment, polio survivors adapt by using assistive devices to maintain mobility.
Post Polio Matters Volume 11 Issue 6 Read More »
Post Polio Matters Volume 11 Issue 5
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 1
Polio Survivors Network Newsletter
April 2024 — Volume 11 Issue 5 of 12 [125]
| Lincolnshire Post-Polio Library 100+ articles | Polio Survivors Network is the working name of registered charity 1064177, The Lincolnshire Post-Polio Network |
Our th edition of Post Polio Matters is a special milestone for us, as we celebrate the resilience and courage of polio survivors
We hope you find our 125th newsletter enjoyable and informative. We appreciate your loyal readership and valuable input. We are honoured to celebrate the resilience and achievements of polio survivors with you.
Blooming Resilience
– Celebrating and Honouring Polio Survivors
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 2
This publication is provided free thanks to your generous donations.
Thank you so much!
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.
| Page 2 | Contents, Donation acknowledgements |
| Page 3 – 4 | Editorial – Hilary Boone |
| Page 5 | How to overcome problems of getting weaker with PPS – by Zsuzsi Snarey |
| Page 6 | Message From Our Chair – Simon Parritt |
| Page 7 | A Cheeky Piece by Verite |
| Page 8 | Toni Writes |
| Page 9 | From our readers, For this issue, Di’s Polio Story, Update from Barbara |
| Page 10 | Would you like to share your polio survivor experience further? |
| Page 11 | Hello from Sylvie, The London Bus Driver’s Prayer, Thanks from Michael |
| Page 12 | Pain Relief, The Dog Won’t Share!, An Interview with Jeff |
| Page 13 | The Psychic Fairy Queen, Not a Poster Child … or a Spring Chicken |
| Page 14 – 16 | Optimistic Aly, Andrew’s PPS Symptom Advice |
| Page 17 | Influencing versus Defining |
| Page 18 – 19 | Michael’s Polio Story, Alan’s 11 years of Post Polio Personal Management Information & Benchmarking |
| Page 19 – 20 | My Polio by John Howden-Richards |
| Page 21 – 22 | Tom’s musings … |
| Page 23 – 24 | Optimal Clinical Pathway for Polio Survivors has now been launched by the British Polio Fellowship (BPF) |
| Page 25 – 29 | Living Well With Post-Polio As We Age, An Interesting Discussion |
| Page 30 | Worth A Watch, Useful Resources |
| Page 31 | Management Committee Information, Most accepted articles by professionals |
| Back page | Is Your Polio Story …., Help raise funds with our photocards |
| Donations and Charity Incentives Paid(since last newsletter) | |
| Cheque donation from DC | £50.00 |
| Donation via Making a Difference Cards – from B&S in memory of Patricia Thomas | £60.00 |
| Donation via Making a Difference Cards – from S&V in memory of Pat | £50.00 |
| Donation via PayPal – from RB | £20.00 |
| Donation via PayPal- from CR in memory of Emma’s mum | £20.00 |
| Donation via PayPal – from MW | £40.00 |
| Cheque donation from A&S – in memory of Pat Thomas | £500.00 |
| Total | £740.00 |
PayPal donate link:
https://bit.ly/2KzyAyE
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 3
Editorial by Hilary Boone
My story starts during WWII when my father served in the Royal Signals and spent some time in the Benghazi, Libya telephone exchange.
In 1952 the UK General Post Office were looking for someone to go out to Benghazi to organise the rebuilding of the telephone system. My father’s interview was late in the afternoon and he was bluntly asked, “why do you want this post?” He told them he was
fluent in Arabic and he had set the charges to destroy the equipment during a retreat. He got the job and within a few months along with my mother and younger brother we travelled on the SS Delwara landing in Tobruk where my father met us.
The yellow quarantine flag was flying because my brother and I had caught whooping cough and then a few months later I was paralysed waist down with waist down paralytic polio. I was taken to the Army Hospital in Benghazi and my mother told me that initially they were only allowed to talk to me from the doorway. My mother concerned about occasions I needed the toilet was met with the reply “Oh, I just have to call Orderly and they bring me a bedpan” When out of isolation my parents asked the doctors would swimming help me and it was not long before an Army truck took me to the Mediterranean for a swim each day. My father told me that I quickly learned to swim underwater and he would walk round after me to hold me up whilst I got my breath back. After a few weeks I was allowed home but with the Army truck picking me up daily for hospital physiotherapy. We came back to the UK. I could now walk but fell often. I had to have regular physiotherapy and so remember two of the exercises. The first has caused my feet to twinge. I had to sit on a chair with my foot in a bowl of water and underneath my foot was a metal plate covered in a cotton and I had to pull a lever to give my foot muscles electric shocks. The other was to stand at wall bars in a gym and do knee bending exercises in sets of ten. If I bent my left knee more than four inches my leg would collapse.
I passed to Orange belt in Judo. I was a good swimmer and took and passed life-saving awards to Distinction in the Pool and Open Water. I passed a medical for the Police as fit and went to RAF Dishforth to start my training. The second day we were given the timetable for the week and I was horrified to see Friday was cross country running so I asked to see my Class Sergeant and explained I would not be able to do this. Imagine his response… I told him I could ‘run’ enough to get round tennis and netball court and I could hit a ball in rounders so far that I could walk round. I had polio as a child and cannot run any distance. I thought my days as a Policewoman would be over before they started. However, I was examined and it was decided that as I already had higher qualifications in Judo and Life-Saving that were required I should be given a weekly chance to complete all the rest of the training. The 39 mile Lyke Wake Walk is across the North York Moors and a list went up for anyone wishing to take part. I put my name up and later saw it had been crossed off. I put it back on the list and again the next day it had been crossed off. I complained to my Sergeant and was told that as I could not run it had been decided that I would not be able to complete this. Now we see an example of where the Pig Headed I can do it don’t tell me I can’t polio survivor. I asked have the others been asked if they have walked that distance before and the answer was No. I was allowed to do this but my car driven by someone else had to be part of the back up team. They had decided that they would support me for the first nine miles and my car could take me back to Training School. Well my car did take someone back at the first rendezvous point but it was not me. Nearing the end I had to crawl up one hill near Fylingdales on my hands and knees and it took me 18 hours but I did it.
I completed four years as a Policewoman including two years in C.I.D. and marrying a colleague. He wanted to move nearer to his home in Yorkshire and we compromised on Lincolnshire.
We all have different levels of damage, different therapy, jobs and hobbies and can add other medical conditions that need considering. Most health professionals that I have seen have been surprised that my left leg is very weak from hip to knee but right leg knee to toes. I have more weakness on the left side of my body including swallowing muscles and one that moves my eyes side to side.
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 4
We are a nightmare for health professionals especially those that have not been taught much about polio by their Colleges of Medicine. Imagine you are one of these health professionals and you see your next patient has had polio for say 60 years. You think back to your training and Polio was a half hour lecture with Leprosy.
I spent seven years at my local hospital each time being given more physiotherapy exercises. I really tried hard but all I did was become less and less able. I found out years later my records are endorsed “malingerer.” I was given an MRI and told from the results ‘Glad you are better’ I replied “I was not better and in fact had continued to deteriorate over the last seven years, I had polio as a child could that have anything to do with this” “Oh,” said the locum orthopaedic consultant . “there is something called the Late Effects of Polio but I know nothing about it” I left his office and went directly to the Hospital Library who redirected me to the Health Information Service where I was given copies of the article in the Independent by Patricia Rock and another article by a GP….. both in our PSN Library. I took these articles to my own GP who soon commented I am sorry you have been saying the same thing for some years now. I did not know the condition existed.
It is now over 25 years and getting medical support has been varied but mostly with my providing medical quotes and articles. Although professionals that I see tend to raise a questioning eyebrow when I explain that my left leg is very weak from hip to knee, but my right leg it is knee to toes.
I developed My Polio Life (available on our website or by emailing admin@poliosurvivorsnetwork.org.uk for a copy) to help us list out issues with Actions of Daily Living then we can pick the action or two that most demonstrates our new weakness. There is not enough time to go through them all so pick relevant actions to the health professional you are seeing. A later tool produced is the Preparing for Your Appointment which we hope is helping our members. Again please request a copy to be sent.
I have exercised as much as each daily energy and allowed. The purchase of a Hot Tub for the garden cut out a lot of actions going to and from a swimming pool. Article in our library Julie silver? As a Senior Lifeguard in Pools and at the Coast for safety, it is essential that you have someone with you to help you where needed.
I started using an electric scooter on my 50th birthday which made a huge difference to the amount of places we were able to go and time spent there. In May 2022 I had my third fall where for the third time in the last few months my legs suddenly folded and I badly bruised my ankle. Thankfully it was not broken but our bungalow is small and no room to use a scooter in the house so I used my husbands spare Jazzy electric wheelchair. My GP ordered an electric chair for me 01.08.22 with rise because my legs are not strong enough to stand without using my arms and that is quite a strain on my shoulders. It took a year for the paperwork to be done and the order was placed on 02.08.23. It took many more months and letters copied to Adult Social Care before I was brought a Jazzy Salsa Mini2 with the rise facility. Helped enormously but two more weeks to get a single footplate for use in our small bungalow. The back is still not the correct one and is fitted at the wrong angle yet still I wait…. And my health and wellbeing continue to deteriorate because of these delays restricting what I could manage including trying to help my husband who was confined to his bed for seven weeks. I have been made aware that many others are also suffering due to long delays. I wonder how much money is being wasted on the time it takes for staff to respond each time you contact them plus the often earlier deterioration of the user whilst waiting.
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 5
How to overcome problems of getting weaker with Post Polio Syndrome.
I caught the polio virus in 1949 and was sent home after about 4 weeks in hospital. I was unable to walk at first, so my mother started to rehabilitate me with daily exercises. Later she found a physiotherapist who was trained in the method developed by Sister Kenny, an Australian nurse.
I regained several muscles except for the left leg below the knee where the paralysis started. I was unable to walk for a year, and then I started walking with two crutches, then just one, and finally one stick. My endurance increased gradually, and I was able to attend school, university, and jobs in chemical laboratories. I studied Chemistry at university where I met my husband who was also studying chemistry. After graduating we married, and we had three daughters. I became a science teacher. Teaching was better suited to looking after children and I was able to stand all day, carry heavy books, teaching in science laboratories for 26 years.
Shortly before turning 60, I retired from teaching and trained as a chiropodist. My children had left home, and I was able to visit people in their homes pulling my heavy bag full of instruments and chiropody supplies on wheels which was meant for a suitcase. Luckily, I was also able to have a dedicated surgery in our home and see patients there. Gradually as I became weaker, I stopped visiting and became even busier with patients in the surgery. So much so that I would not even stand up from 9 to 12 and for several hours in the afternoon with patients following one another. I now realise that this was detrimental to my muscles. I also started studying for an Open University degree online which meant many hours sitting at the computer in the evenings. I now know that I should have been doing more activities to preserve my muscles instead of sitting for long hours. Having fallen down our wooden stairs three times I was forced to have a stairlift. The result of that is that now I am hardly able to climb the stairs. To try and remedy this I am now using a small stepping stool in the kitchen and holding onto the work surface with one hand and a sturdy chair with the other I try to step up every morning and evening. I started with just 5 repetitions and gradually increased it to 20. But I can only step up with my right leg. I am not persistent, so I tend to give up easily when I am tired in the evenings.
My balance is getting very bad, I need to hold onto a firm surface. Even when using two sticks I don’t like to be far from something to hold onto or lean against. To be able to carry heavy pans, serving dishes, or anything to go in the oven, I have a small stool on castors. This is also useful for getting things out of the fridge, putting clothes in the washing machine, and taking them out, cleaning the floor, vacuuming, and as an extra chair. It is important to be able to stand up from it safely, holding on to a kitchen chair and the table. A few times I have missed standing up, tried to sit back on the stool, and ended up on the floor! A very embarrassing situation.
My greatest problem at present is standing up. My husband fixed 4-inch raisers on the settee and on our bed which helps a great deal. I need to pull myself up with one hand while pushing up with the other. I also have to take care not to damage my shoulders when doing this.
The lesson from all this is: keep walking, use the stairs, and do exercises as long as possible to preserve muscles but do not to get overtired because that damages the nerves and muscles.
By Zsuzsanna Snarey
Both are available on Amazon.
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 6
MESSAGE FROM OUR CHAIR
The Long and Winding Road
Firstly, I want to welcome the new clinical pathway from the BPF (Please see page 22). I hope we all can get behind this and lobby wherever and whenever possible. We have always needed an holistic and informed polio service and whilst it is still a dream this a step on the way.
That said, implementation is everything and something that sits on a shelf does nothing and I have had plenty of experience of that. Realistically we have an NHS in crisis both in terms of demand, personnel, funding, and infrastructure. Change is something that will take a decade or more to fix, and only then if we all agreed how, and start tomorrow. The reality is that achieving this ideal will be, to quote a Beatles song ‘ A long and Winding Road’.
Physical and Emotional Pain
I want to focus on one area. That is pain, not just physical but emotional distress and the psychological. It has often occurred to me, both as a polio survivor for 68 years and as a psychologist for over 35, that this is an area where we often find ourselves met with ignorance and a lack of understanding in the face of our, often unusual history and particular life experiences over decades.
Pain is a huge subject area, both complex and highly individual and subjective. Yet we all experience pain throughout our lives from our first breath to our final breath. Indeed, it is part of everyday life. It’s normal, and its function is to alert us to threat and protect us from harm. But how we experience it varies and that is true whether it is an emotional trauma, physical injury, or illness or of all of them. It is the interaction that makes it so complex. Ultimately it has such an impact our quality of life, our ability to engage and be our true selves and who we want to be in the world.
From my early childhood polio rehab days to now as I age with PPS, like many of you I’m sure, I have had my fair share of pain, both physical and emotional. I’m not sure the physical pain was the most difficult. Pain that is short term, predictable and understandable is unpleasant, even difficult, but perhaps easier to deal with, than ongoing chronic pain and or emotional distress. Pain isn’t just a physical experience, though we may often perceive it to be. But its impact is mediated in the brain by fear, anxiety, memories, social interactions and more. It also differs from person to person; it differs within the same person differently at different times or at different stages of our life and circumstances. The pain when I was having my spinal fusion in the RNOH was often intense, but I was 17, informed and had a long-term relationship and faith in my surgeon. My cognitive view was that this was a gateway to a better future, and indeed less pain. Whether that was objectively true, or my assessment of the risks were over optimistic is by the way, but my psychological approach and belief and sense of control mitigated my fear and experience of the pain. That is a very different situation and situation when having pain at the other end of my life.
The Pain Cocktail
The pain, be it emotional or physical, that most of us meet in our lives is not well served by pharmacological treatments. Most medications or analgesics have unwelcome side effects, whether for mental or physical distress, and on their own often only provide partial help. This is especially true of what’s available for chronic pain. Pain is perhaps a kind of cocktail made up of the biological perception of pain in our bodies and the emotional and psychological distress that we experience living in the world and that is ‘our’ unique and individualised pain cocktail. As disabled people we surely have first-hand experience of what that means.
The Polio Rehab Legacy
My particular interest has always been focussed on how as lifelong disabled people our psychological, emotional and social integration needs are often marginalised, especially as we age. This was no more starkly exposed than during the pandemic and how ironic that is for us as the survivors of the polio pandemic. Part of our ‘cocktail’ is that back in the day, as polio patients we were indoctrinated into a medical model with an almost unswerving faith that doctors, medical professionals and the NHS were always right and if we pushed ourselves to the limit, we could overcome anything and even ‘pass’ as non-disabled and be part of the world ‘as if’ our physical impairments and psychological experiences hadn’t happened or were at least invisible or irrelevant to how were to be perceived and treated in the world.
For many of us it worked for years, if not decades. But now as we age with PPS and the usual other age-related conditions, we experience age-inappropriate loss of function, loss of income, social contact, and even appropriate healthcare. This just at a time when society is in flux and we need better access and holistic health care, not box ticking and generalised care. This is as true, if not more true, for the psychological side of living with PPS which can trigger us going down all possible rabbit holes hoping to find ‘The Answer’ to our physical impairment or pain.
Appropriate Psychological Support
My concern is that the type and availability of appropriately experienced psychologists and therapists trained in the real-life challenges of disabled people is sadly lacking. What is offered is often totally inappropriate for post-polio patients and polio survivors. The social context and real lived experience of those of us with a lifelong knowledge of polio and living in the world as disabled people doesn’t fit well into the simplistic reductionist psychological therapies and approaches on offer. Anyone who has encountered a telephone triage to ‘sign post you to an appropriate therapy service’ will know just how frustrating and often alienating and disheartening the experience can be.
Therapy for disabled and people with chronic conditions requires a broad experience of the medical and psychological world of disabled people. And it also requires a deep under the social context and a commitment to social justice for our clients and patients. When I see in the pathway – psychology – it is hard for me not to worry that the fundamental emotional, medical, and social issues that should be at the core of a psychological service for polio survivors is not appreciated. If we are subjecting PPS patients to the same reductionist and manualised approaches that are widespread, we will fail to meet the needs of PPS patients and others living and ageing with long term and chronic conditions.
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 7
A Cheeky Piece by Verite …
Statistics tell us 60% of the world is going to have an Election this year. But how many of us will turn up to vote?
Or are we so disillusioned with politicians we won’t bother?
When I think about it, and why I don’t want to turn out and vote, I remember the Suffragettes and how hard they worked to get women the vote. Men over a certain age got voting rights long before women in Britain, but courageous women thought this wrong.
After decades of strife and demonstrations, plus the horrors of prison, force-feeding and other measures to punish women who rebelled, finally in 1928 Women in England, Wales and Scotland received the vote on the same terms as men (over the age of 21, without property requirements) as a result of the Representation of the People Act 1928. Mind you, this was a long way after New Zealand, which had given women the vote in 1893.
This year, whom would I vote for?
I can’t help remembering Screamin’ Lord Sutch! He was a nightclub entertainer, who was clever enough to capitalize on the fact that if he registered as an election candidate, and paid a deposit of £500, becoming a candidate entitled him to the same amount of publicity as every other candidate. All he had to do was turn up in
front of the TV cameras in the run-up to any election, and election rules said he was entitled to this.
As a result, although I believe he always lost his deposit as he never polled the minimum percentage of votes, this was an incredibly cheap way of gaining
advertising. His popularity soared in nightclubs, and he gained a huge following. Mind you, I don’t know if this year one could identify some candidates – many would easily qualify to represent Sutch’s Monster Raving Loony Party.
You could make a difference
Friends and I have decided we are fed up, but going to do something about it, and have selected two subjects: NHS and fuel bills.
Looking carefully through all the election manifestos that will be coming through the letter box, before they go into the recycling bin, we will highlight any that mention either subject, then ask questions – either by email or by turning up at an election meeting.
Election year is the ideal time to highlight important issues – whatever the party!
Verite Reily-Collins
PSN Trustee, Health Journalist and owner of aftercancers.com
veritegreenbee@gmail.com
www.aftercancers.com
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 8
Toni Writes …
Well you all continue to amaze me … I sent out a brief email to ask for your help and we are overwhelmed by your response. We have received many replies offering to share your stories, insights, tips, resources, creative pieces and feedback with us and the rest of the polio survivor community. We even had to expand the number of pages we had allocated to member contributions which was a lovely problem to have!
We are truly grateful for your generosity and enthusiasm. Your contributions have made our special 125th edition newsletter more informative, inspiring, and engaging for all our readers. I’m sure you will find the following pages to be a very interesting read.
We are also excited to announce that we are planning to hold our annual general meeting in August this year. This is an important event where we will review our activities, achievements, and challenges of the past year and discuss our plans and opportunities for the future.
Since our members are very spread out in the UK and abroad, we have decided to make the meeting online, so that everyone can join easily and conveniently from their homes. We will use a video conferencing platform that is easy to access and use, and we will provide you with the instructions and support on how to join the meeting. However, we also understand that some of you may prefer to meet in person and socialise with other members. So we are also considering the possibility of organising a local viewing/hosting group in Lincoln, where you can watch the online meeting together and chat with each other. This will depend on the level of interest and availability of a suitable venue. If you are interested in attending the local group, please let us know by post, text message, phone or email as detailed below.
We appreciate that aging with polio can complicate travel and mobility, but we don’t want to miss the chance to see you all. We hope that you can join us for this meaningful event and we look forward to seeing you online or in person. Please save the date for the annual general meeting, which will be on Monday, August 19, 2024, from 1:30 pm to 3:30 pm. More details will follow nearer the date.
Thank you once again for your support and participation. You are the reason why we do what we do. You are the heart and soul of the Polio Survivors Network.
Take care
Toni x
Special note: You may have noticed we have received very generous donations recently and we would like to thank the family and friends of our long standing member Mrs Patricia Thomas who sadly passed away for donating in her memory. We send our love at this difficult time.
| psnadmin@poliosurvivorsnetwork.org.uk | |
| Post | PO Box 954, Lincoln, LN5 5ER |
| Website | www.poliosurvivorsnetwork.org.uk |
| Phone | 07480 110334 |
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 9
From our readers:
Thank you for the latest newsletter and especially for the beautiful illustration on the front page (PPM 124). It has such depth and stillness, a real invitation to reflective thinking which I am in need of in these days of PPS bringing me to an almost complete physical halt. I’ve learned not to dwell on it, but it’s always there. Thanks for your time and knowledge, everyone.- Kathy Saunders
Thank you for sending information concerning your work on behalf of polio survivors. This has been of help and interest to me and I hope that the enclosed donation will be useful to you in that work. – Douglas Challons
I just wanted to congratulate you on the last issue. The articles by Verite and Zsuzsanna I particularly enjoyed. Thanks to both of them. – Caroline GW
For this issue:
Di’s Polio Story
My polio story is without doubt very similar to many others. I contracted polio just before my fourth birthday in 1952 – I am now 75. I am definitely a half glass full person and I feel I owe that to polio. Some might find that a strange comment, but life has not always been easy and like many polio survivors has made me stronger, more determined, a type A achiever and defiant!
Like many others I had long stays in hospital, operations, callipers, bedtime splints and built up shoes. I was one of the lucky ones and made a good recovery and by eighteen had discarded all assistive aids. I married young, had two children, obtained a degree at 39 and went into teaching. In my late forties I was diagnosed at the Lane Fox Unit with post polio and for the last 27 years have been back in callipers. I was widowed at 58 but in my Motability car can still visit friends and family. Life has become more sedentary, but I can fill my time in with a variety of hobbies, mainly playing bridge, which seems to be keeping the grey cells working. However! It is being reliant on outside agencies where problems occur!
My blue badge blew out of my car six weeks ago, never to be seen again, when I opened my car door in a gale! I immediately went online to order a replacement, paid £10 and am still waiting. My walking is limited so not being able to park on double yellow lines has been a real nuisance. The same week the foot dropped off one of my callipers! That took five weeks to get repaired – luckily I have a spare one. Agencies who are meant to help disabled folk do not seem to understand the urgent necessity of our needs. Delays can cause great anxiety. The post polio clinic which I used to attend at a Liverpool hospital has closed. As polio survivors our physical needs are not understood and this in turn puts a great toll on our mental and emotional health. We are our own ambassadors and facilitators and that takes a lot of our energies and strength. I know I am very grateful to the volunteers who work tirelessly in producing Post Polio Matters and running the Polio Survivors Network. – Di Brennand
Update from Barbara…
Pretty ill with multiple things and inflammatory hands ad feet plus Covid. Probably can’t do and can’t walk on feet. – Barbara Taverner
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 10
Congratulations to James and would you like to share your polio survivor experience further?
Hi everyone, my name is James Magnus Carmichael. On the first of July I take over as Rotary Great Britain and Ireland Polio Specialist.
I contracted polio when I was two years old – and as it happens my father contracted polio when he was a boy. Both of us suffered paralysis of the left leg – but of course he contracted polio before there was a National Health Service, and before there were any effective treatments to aid recovery. As a result he suffered the full effects of polio. His left leg was considerably shorter than his right, he could only use the ball of his left foot – his heel was pulled up to the shin, and walking any distance was a considerable effort. By contrast, my leg was fine for many years – until I found that I was suffering from ‘post-polio syndrome’.
In my capacity as incoming Polio Specialist for Britain and Ireland I talk at different occasions and to different groups, and I like to emphasise that polio is not just a medical condition with associated physical problems, it is – and can be – a disease with implications for a person’s career and employment prospects, their social connections, and their mental well-being.
My father was always ‘defined’ by employers on the basis of his physical impairments. I hope these days in Britain we have moved past such prejudices but of course it is still the case in many countries that people who have suffered from polio are excluded from employment opportunities and often socially excluded and subject to prejudice.
At the moment I’m working on a book about polio in Britain and that involves interviewing polio survivors which has been a learning exercise for me. The oldest contributor is in her nineties, the youngest in his thirties. They are all different in important ways, but we do all have some things in common. They are all pretty phlegmatic about their situation, best summed up by one person who, having explained the extreme mobility problems he was experiencing, simply shrugged and said ‘what can you do? You just have to get on with things.’ And that really captured the attitudes of many of the people I’ve talked to.
I have found much to admire in the resilience, strength of character and determination of all those I’ve had the privilege to interview.
The process is ongoing – but I hope later this year to publish ‘Polio Stories’. I hope it will help raise awareness and remind everyone who reads it of the simple fact that there are thousands of people in Britain who are still living with the consequences of a polio infection.
All of the proceeds from sales of the book will go to the End Polio Now campaign. If any member of the Polio Survivors Network would like to contribute to the book – please drop me a line at
Jasmagnus@ntlworld.com
Regards
James M. Carmichael
Vice-President Kirkintilloch Rotary District 1320 South Scotland ENPC. Rotary GB&I EPN Specialist (nominee).
Editors Comment: It would be wonderful to see the experiences of as many polio survivors as possible collated into a book raising awareness.
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 11
Hello from Sylvie in Somerset
I have only had a scooter for just a few months. It enables me to go out for the day and on holidays rather than be a “prisoner” of PPS symptoms which would limit my pleasure in and ability to get out and about. My using the scooter also benefits my husband’s health as it means he doesn’t miss out on the long walks we can now enjoy together again. So all good and great fun to be out again. Below are three photos of me with my scooter, the last one being in Austria.
The London Bus Drivers Prayer by Ian Dury who contracted Polio, I think he fronted a band called the Blockheads? It has been around for a while but may still make a few members smile in these hard times.– Mick Harper
The London Bus Driver’s Prayer
by Ian Dury
Our Driver Who art in Hendon Holloway be Thy name Thy Kingston come Thy Wimbledon In Erith as it is in Hendon Give us this day our Berkhampstead And forgive us our Westminsters As we forgive those who Westminster against us Lead us not into Temple Station And deliver us from Ealing For thine is the Kingston The Purley and the Crawley For Iver and Iver Crouch End
Thanks from Michael
I would like to thank you for doing your bit to trying to help us in our journey through what can be a very stressful future. Kind regards, Michael H
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 12
Pain Relief
My two strategies for pain relief are :
1. Fortnightly visits to my osteopath to realign my spine
before it goes too far out of whack;
2. Ease Magnesium spray to relax tight aching muscles which helps me sleep better.
Since last summer I’ve been following a ketogenic diet which has helped me lose 20lbs weight and has given me so much more energy – that’s the most surprising thing because I’ve not had any post-polio symptoms since then. Before that I’d been having exhaustion on walking even a short distance but now am back to managing about 5,500 steps 3 times a week.
Hope that’s of some help to you. – Christine Macklen
The Dog Won’t Share!
I’m from Illinois. I’m 73. I had a good life, walked with a limp, but did ok.
I do have a suggestion for moving on the mattress, I use a silky kind of fur rug. It has a backing that makes it feel like a real leather I think it’s a bath mat. I put it under my hips and it’s much easier to move . Except when the dog won’t share! – Sue Waters
An Interview with Jeff from West Sussex
| | What adaptions have you found most useful?Wet room shower |
Your life experience
Polio at 4 years, recovered after being in iron lung, at 50 years started signs of post polio, now use wheel and mobility scooter
How do you cope with the complications of being a polio survivor/post polio syndrome?
My wife helps a lot, especially if I fall, plus she does most of the jobs I used to do, life is much more difficult now compared to 20-40 age range.
What would you like everyone to know about polio survivors? What lessons can be learned from your life?
I found with care I could lead a normal life and raise a family (until 50) as long as I didn’t overdo things physically.
Photos, drawings, anything that inspires you to stop and enjoy the moment. Videos or books you have found
helpful
Polio Survivors network has help, provided data I have used.
| | What works for you when it comes to pain relief?My main problem is knee joint pain, heat helps, albeit it intensifies with sleep. |
| | What would you like help/advice on?Any ideas on limiting damage caused by falls? |
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 13
The Psychic Fairy Queen
Having polio set the stage for an amazing life for me. I was told that it was unlikely that I would walk again and whilst still in isolation, I met spiritual beings who told me not to give up and that they would help me recover. It took a couple of years before I managed that, and these beings then took a back seat, appearing randomly throughout my life, until post-polio set in and they were back in force! Their message was always “TRUST and let go of fear, you will manage ok. Aged 41 I found myself unwittingly propelled into becoming a medium, then by my mid-fifties, as post-polio was taking hold, I discovered healing. Gradually my problems with walking etc eased as I learnt so much about the power of the mind and how to stay present and not have fear, and eventually trained in various healing modalities, going on to help others till I was 75. Now, aged 77, I have had a book published, with the intent of assisting people in their lives by learning from all I have experienced. It is available on Amazon.
Here is the back cover blurb of The Psychic Fairy Queen, and I sincerely hope other polio sufferers will benefit from reading my story. Very Best Wishes, Jan Murphy
In ‘The Psychic Fairy Queen’, join the extraordinary journey of Jan Murphy as she recounts her remarkable odyssey from fear and torment to fairies and trust, eventually becoming a beacon of hope and healing. At the tender age of ten, a devastating battle with polio left her paralysed, isolated, and seemingly hopeless. But within the confines of her hospital isolation room, she encountered ethereal spirits, setting the stage for a life-changing connection.
These spirits guided Jan through the darkest of times, opening a door to a world beyond the ordinary. As she grew, she realized her calling as a nurse, and later as a healer and Medium. Her path was illuminated by incredible and unbelievable experiences, from encounters with fairies to interactions with extra-terrestrial beings, and the destined meeting with her Twin Flame, her spiritual counterpart.
The Psychic Fairy Queen is a mesmerising true tale of bridging dimensions and helping countless people recover from life’s traumas and illnesses through the power of Trust and healing. Jan imparts the wisdom and skills of manifesting life’s desires while sharing the extraordinary stories of her own and others’ miracles. She felt passionate about writing this book so that others could also benefit from her knowledge and experience that there really is far more to life than we sometimes perceive and that by holding strong intent, absolutely anything is possible if you truly believe it is so. Jan’s motto has always been ‘LOVE CONQUERS ALL’……because it does. This is a book of resilience, transformation, and the boundless potential of the human spirit.
Not a Poster Child … or a Spring Chicken
Two books by Francine Falk-Allen based on her experience:
Not a Poster Child: Living Well with a Disability—A Memoir
and also
No Spring Chicken: Stories and Advice from a Wild Handicapper on Aging, and Disability
https://FrancineFalk-Allen.com
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Optimistic Aly
Hi everyone, optimistic Aly here.
After contracting polio when 6 or 7 years old, my post polio journey has not been easy, as I’m sure some readers have also experienced. It’s only in recent years the medical profession are learning about the long term affects of Polio.
I’m in my mid 70s now but was one of the 300 children back in the early 1950s who were chosen to trial the, now successful, Salk vaccine used today. The metal and leather callipered boots worn for 18 months were a small price to pay for my life. Anyway, once mastered, they enabled me to inflict substantial damage on anyone who took the Mickey as they had metal side rods, so not all was doom and gloom.
Other children trialling the Sabine and placebo inoculations did not fare so well at all. We lucky survivors will never forget them.
Two years ago, misfortune struck resulting in admission to DORSET COUNTY HOSPITAL and two major bowel surgeries in 10 months. The first nearly costing my life, when the obstruction burst hours before the scheduled operation. My internal muscle power diminished rapidly around this time which left much tiredness and general lethargy.
At a prior consultation, I explained to my wonderful NHS Surgeon my fears that were solely around Anaesthetics. I asked if I could meet the Anaesthetist first. Polio as we all know, affects our already weakening muscles. The heart and lungs are muscles, anaesthetics disable muscles. I wanted to be sure of what these guys knew about my polio beforehand.
I had an amazing hour with the Chief Anaesthetist and came out feeling super confident in my medical team. We also discussed my heart problems, hiatus hernia, aneurysm, scoliosis, diverticulitis, cervical neck bone collapse and arthritis…among other stuff ….and their correlation with polio. I was complimented on the fact I was still alive and in such good spirit. We both learned a lot about how ones mind can overcome a lot of pain and also that occasional feeling sorry for oneself.
After the first operation, hastier there, due to the obstruction bursting, confidence crept in on seeing that handsome anaesthetists face. It does help if they’re nice to look at! Feeling relatively I calm I was put out cold in 20 secs flat with my individual “specially prepared” anaesthetic. Trust your anaesthetist everyone. These guys KNOW what they are doing.
Recovery was good I’m told, but I do first recall crinkling sounds on coming round, after which I CLEARLY recall fleetingly looking at the handsome man (anaesthetist number 2) in the recovery room, at bottom of my bed. He was central to a clutch of about 5/6 uniforms calling for more rescue blankets. The crinkly space age silver stuff with warm water pockets all over them. As said above, I have other conditions and my B/P sadly went bit low. Its a family trait. Brilliantly upfront in any crisis, fall apart after…. as I laughed with the anaesthetist earlier. He listened and came prepared for just that in case.
Later next day on ward it was more comfortable playing with the bed zapper to lie in a Z shape on my back to prevent sliding. Turning gently later in the day, was doable but uncomfortable and slow. More of a slide for first 48hrs, due to 3 of the 7 of illnesses above. Nurses have slide sheets to turn people as well…. much easier as it turned out.
All the above aside, day to day I noticed how the post polio symptoms are getting more debilitating as age encroaches. Good days 200yds upright walking, other days 70 feet if lucky. Aging naturally compounds these existing mobility problems. Occasionally I get out of breath easily and use a stair lift to get up stairs some nights. Exercising any muscle nowadays also causes muscle fatigue quicker than it used to so my GP monitors lung capacity annually. I have crutches if I need them as they are useful to lean on when muscle fatigue hits.
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One other thing noticed of late is the occasional kind of excess saliva I can get in my mouth. Regardless of sitting or laying my brain doesn’t warn the swallow reflex quick enough. With not much warning it feels like something went down wrong way and coughing occurs. If I rapidly get upright swallowing hard between coughs helps clear it all. Does anyone else have problems with their swallowing muscles?
Anyway lovely to read each of your own stories. It makes us feel less lonely and dismissive of life knowing we share a common bond, I think. WE ARE ALL SURVIVORS in our own way. My own mantra is not to make a drama out of a crisis on a day to day basis, do your best for you and NOBODY else. Find something you CAN DO, rather than feel sorry for yourself and concentrate on what you CAN’T DO. We still have a life to LIVE, we just need a smidgen of adaptability don’t we?!
Love from Aly xx
Editors Comment – If you’d like to respond to Aly please email us and we can include it in the next issue.
Andrew’s PPS Symptom Advice
Hello from central London, where I live in an alms-house, which takes some of the pressure off life.
What helps? I saw an Australian post-polio video which categorised all the main areas of PPS symptoms. That helped me see which applied to me.
So it’s: 1. Fatigue 2. Poor sleeping 3. Limited sleeping positions 4. Dry throat when lying down (connected with swallowing I believe) 5. Muscle fatigue (limited to just midriff, from walking) 6. Hard to get warm when cold
1. Chronic Fatigue is my biggest problem by far. Lots of naps throughout the day help. Writing the day off if you feel tired in the morning, so as not to spend the day worrying about things not done. Avoid deadlines. Gently keep on reminding people about it, so that they understand that it’s not just ‘getting old’.
Accept that you can only do two to three things in a day, and that a big thing (like going out to dinner) may take 2 to 3 days to recover.
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I’ve found regular visits to a chiropractor, an osteopath (don’t tell one about the other) and an acupuncturist brings me back in to ‘normal’ for a bit every few weeks and stops long term skeletal problems. They’re all exceptionally good, which is important. They’ve given me a long list of
| supplements to take – which seem to make a difference. The stand-out | one is an 8 mushroom |
| blend (from Kiki Health, but there are others) which has wiped out | the arthritis in my good joints. |
I’ve also found a few gentle stretches in the morning stops you from feeling stiff later on. Similarly a few different arm waving exercises in bed when you wake up seems to keep limbs working better. Likewise trying to do something difficult with your bad hand – like putting the cutlery back in the cutlery drawer – seems to retrain both brain and hand, making them work better and feel more alive. Finally, a few quiet, Buddhist style breathing exercises in the morning make you breathe better for the rest of the day.
Weight gain seems to have been (finally) countered by a keto diet, which is giving me more energy as a bonus. I’m hoping it will move me away from the danger of diabetes, bring my blood pressure down so I can come off the pills, lower my cholesterol (I avoid taking statins). The number of naps remains the same, but I feel better in between. Red Rice extract (or the actual rice) keeps cholesterol down, apparently, so stops the doctor pressuring you into taking statins.
2. Poor sleeping seems to be helped a bit by reading in bed beforehand and not looking at my phone, a cool room and listening to the radio (on the phone or iPod touch – with a
separate Bluetooth speaker – which turns off after an hour). A glass of wine or brandy in the evening helps too, but I’m not sure I should make that a habit.
3. Limited sleeping positions (on either side); seems to be insoluble
4. Dry throat / tickly cough: small bottle of water by bedside and the ever reliable Ricolas.
5. Muscle fatigue is just in my midriff, when I walk too much. No cure.
6. Cold, hard to warm up. A good thick duvet or a warm shower speeds things up a bit. I’ve got a double bed with two single duvets of different weights. The light one is good for nighttime and the thicker one for naps, when you go back to bed feeling cold.
I hope that’s of some use. It was actually quite useful for me to write it down. One last thought: I’ve just today worked out how to categorise my fatigue levels:
A. Full of beans – very rare and usually leads to overdoing it
B. Normal – can get two or three things done in the day
C. Meh! – feel OK but no energy to do anything – worry that I’m not active
D. Tired – nothing gets done – can cook simple meals (reluctantly)
E. Fatigued – feel totally whacked – can’t really cope with anything.
As for mattresses, I’ve come to the conclusion that a foam mattress (mine’s a Simba) are a better bet than firm orthopaedic mattresses for side-sleeping. The trade off is between being more comfortable (with a straight spine and less strain on the neck) with the foam vs. being easier to move around and get out of bed with the orthopaedic one. I tried a high quality orthopaedic one for a couple of years, then gave it to my girlfriend, who loves it. She hates my foam mattress!
Best wishes, Andrew Probert
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We are so happy Shonagh shared this very powerful and moving poem expressing their personal polio journey. This survivor faced many challenges and struggles, but also learned and grew from them. It shows the resilience and courage of the poet, who refused to let polio define them and instead found their own identity and voice.
Influencing versus Defining
Do you dream in colour someone once said I’ve dreamt of all sorts, in this head.
That organism that robbed me long ago, of limbs that walk and move and flow, didn’t get my thoughts, imagination. Didn’t dull my hopes and bold ambition.
I’d like to say it enriched me some. And truth be told, it didn’t come
without some additional, alternative blessings. I learnt from very early on, to look, to listen,
then carry on, with close observance to the fact; that what was lost, wasn’t coming back.
Stoicism is said to be a wonderful thing. But whilst I could sew a perfect seam I never would be on the team.
And in my head, though I ran and danced with grace Reality of my forced debility I viewed full face, Physical accolades would not be mine.
It took some time, but I morphed and grew. My brain and tongue got me through.
I used them well but fought emotions, Rebellion and comparison caused commotions.
Solitary became the preferred existence, Not wanted was my Mums insistence.
I married and separated, more than once. I realised late I was far from a dunce.
I worked til exhausted for family and industry Promoting the social skills; brazenly, aggressively.
My study of people, behaviour, emotions, Carried me through when my own caused explosions.
It’s taken forever but it seems I’ve attained A peaceful era; behaviour most times constrained, That infection I shared with countless others, didn’t make us sisters, didn’t make us brothers.
It took me a lifetime to find the key, It definitely influenced but will never define me.
Shonagh M Terry, June 2018
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Michael’s Polio Story
I got polio while I was at a Butlins holiday camp (Skegness) in about 1946 (I think from the swimming pool). My parents only hope, so they were told, was a new drug that was being tested at Bart’s hospital in London (streptomycin). As the NHS didn’t exist then they had to pay for an ambulance to get me to London (maybe they got help from Butlins but I don’t know), anyway I ended up surviving but with callipers on both legs. The result was that I missed almost all my early education so my parents paid for me to go to a primary school in Balham. From there I went to a grammar school in Battersea.
I had an interest in motor cars and I got a job at Jack Barclays (the Rolls Royce dealers) from there a friend and I set up our own business repairing Rolls Royce’s and Bentley’s. Like many partnerships, we parted company, but I continued the business for many years. I sold the business about 12 years ago and in retirement assisted people with problems with their cars until about a year ago when Post Polio Syndrome (PPS) caught up with me.
My GP sent me to our local hospital, St Helier, where I was told that unbeknown to me I’d had 2 mini strokes and was advised to “get a walking stick”. I am now in the process of being given advice on how to move forward from the Lane Fox unit at St Thomas’ hospital so we wait and see.
The stories I’ve read about since joining you have made me think that basically you need to do as much as is comfortable with you. I hope my story is of interest to you. – Michael Hall
Alan’s Eleven Years of Post-Polio Personal Management Information and Benchmarking
At the age of seven, I contracted Polio and spent a year in Queen Mary’s Children’s Hospital, Carshalton, Surrey. Like most children, with a personal experience of polio, it leaves us all with a lot of challenges and limited abilities, which don’t improve over time, with wear, use, or age and need to be constantly assessed, monitored and addressed, by ourselves and medical professionals.
In 2013, at the age of 60, I retired from full-time work and purchased my first fitness tracker, a Fitbit, with the objective, to proactively monitor and benchmark my own health and activity level.
Since 2013, I’ve had a number of different Fitbits and have maintained my records, which now show over 46 million steps, and a vast global distance, as well as lots of benchmarking information, that can be drilled down for details. These records include Fitbit’s smart automatic functions such as walking, sleep quality and quantity, activity levels and times, flights of stairs climbed, calories burnt, stress levels, swimming, cycling, heart monitoring, alerts and variability, breathing rates, skin temperature, this includes my personal readiness score (suggestions on when to rest and be active). Optional manual functions can be added, such as calories consumed in food, vs calories used, diet nutritional information, water consumed, and weight management.
Readiness is a Fitbit Premium feature.
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On the weight management side, I can manually add my weight or do it automatically. I choose to do it automatically, once a week, using Renpho Bluetooth scales which link into Fitbit. The Renpho scales and app, show, record and monitor 13 different weight management functions such as Body Mass Index (BMI), muscle mass, Basal Metabolic Rate (BMR) and Metabolic Age.
With the Renpho app, and a tape measure, I can also measure and monitor the circumference and length of body parts. I have found this very useful to monitor physical attributes on my appendages to see how they are maintaining and if any specific targeted exercise or change in dietary protein has made any change in size in those areas, such as calf muscles. There are also free mindfulness and workout routines, including gentle yoga, some of which are seated or focused on the upper or lower body.
There is also a Fitbit Premium service, which you can subscribe to. However, before you do, explore the free included ones, as they may be adequate. As a Fitbit premium user, I get Fitbit wellness and monthly health trends reports. I can choose to share this information and any information with people and medical professionals, when I’ve been concerned about aspects of my health.
I’ve also set up groups of fellow Fitbit users of family and friends and we can all decide how much information to share or keep private. This is my public Fitbit profile. https://www.fitbit.com/user/25D85C If you have a Fitbit, you can ‘friend’ me and see a bit more of my real time movement information, which may be a useful benchmark to a fellow, post polio survivor. However, it’s important to know we are all different individuals and your level of mobility may be very different from mine. I have also set up an International Post-Polio Syndrome (PPS) Group on Fitbit. This group is ring fenced by invitation only, which I will invite all PPS friends to join.
My Polio- by John Howden-Richards
As I find myself approaching my eightieth birthday (dob 6.6.1944), I continue to be intrigued by my friends and acquaintances who have reached a certain age, whereby they, themselves, are now experiencing some of the symptoms, which, I myself, have encountered during most of my life. I would not say that it is satisfying, in the least, but it does create an element of understanding and empathy towards me, which was often absent, hitherto. Naturally, I, too, am experiencing reduced mobility, arthritis, and pain. One Wednesday afternoon in June, 1953, my legs ached and I felt quite tired, as I struggled up the steep hill on the return two-mile walk from school. I went straight to bed, and was admitted to Taunton Isolation Hospital by the weekend, when polio was confirmed. All my toys were destroyed, but I was able to keep Ronnie, my mascot, following fumigation – he’s still with me! A month later, I was sent to the Bath and Wessex Orthopaedic Hospital, where I received physiotherapy, and learned to walk with the aid of two full-length calipers, aided by two sticks. For my present mobility aids, I use two sticks at home, a frame outside, and a scooter and/or a car to drive around the village, and further afield. After nearly a year in hospital, and two further years away from school (I was fortunate enough to have a private tutor), my parents decided to send me to boarding school, in order to mix with other youngsters, hence my arrival at Wellington School in Somerset. It was the right decision, which I never rued, and for which I am eternally grateful.
Although I was not able to participate in sporting activities, or the CCF, I took advantage of the gymnasium, where there was an enlightened P.E. master. Together with his support, and that of Jeffery Archer (who was a great gymnast and athlete), and the 1st XV rugby team (who allowed me to join in their circuit training, as far as possible), I developed strength in my upper body and an improved balance; this proved instrumental in my ability to deal, thereafter, with both the
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physical and mental challenges, as they presented themselves. I went on to attend a course at Aberdovey Outward Bound Sea School, a few years later, where I gained the Warden’s Award – rarely awarded for an outstanding performance (most of my friends don’t know this, but, I consider that it’s relevant to this article). Not a day passes, when I do not reflect on the attributes, which I derived from both these institutions. On leaving School, I became articled to a chartered accountant in Bridgwater, Somerset. Keen to obtain a professional qualification of some sort, this seemed to be the most appropriate for me, in providing job mobility and security. After articles, I went into industry and, then, courtesy of Tube Investments, attended Aston University as a post-graduate, where Lord Plowden (chairman of TI), had established what was to become Aston Business School. Unilever beckoned, and a move to Gloucester resulted in a couple of years, where I really enjoyed my role as sales accountant at Wall’s Ice Cream. However, in 1971, it was clear to me that we would be joining the Common Market (as it was known), which I trusted would provide a necessary stimulus to the UK economy. My decision was to find work on the Continent, before we joined, since I reckoned that this was the likely outcome. We brought forward our marriage, and I left Unilever and joined a British-based company in Düsseldorf, Germany, which was a disaster. Soon after arrival, I discovered, through rather minimal investigation, that the directors were on the fiddle, and that the enterprise was unviable (and, eventually wound up). On return to London, with no jobs, life took another turn, but with opportunities, too. I had always wanted to work in the City, and was fortunate to help rescue a secondary bank, successfully, for a couple of years, during the 1970’s recession. I then found myself on the market, yet again, but the 1974 oil crisis came to my aid, and I joined the DTI and the Arabs in assisting in the establishment of the Arab-British Chamber of Commerce. Five years on, I set up my own practice of chartered accountants & management consultants, with a slant upon managing companies, non-executive directorships, company secretarial roles, and the traditional audit and accountancy – the latter never having been my original aim!
However, my entrepreneurial instincts led me to want to build an organisation, which was not so dependent on my constant input. Together with a business partner, in 1993, I formed a company developing and marketing traffic technology (speed cameras). The product, itself was very successful, gaining Home Office approval, speedily (excuse the pun) but it was the early days for this technology, and securing development finance was not forthcoming during that recession, resulting in the business folding in 1995. At least, I tried to fulfil my ultimate ambition, and don’t regret the endeavour. I carried on with my practice, retiring in 2002. My Christian faith has been my metaphorical anchor, in my ability to cope with, and confront, the many difficulties and frustrations, which have – and continue – to cross my path: it gives me the strength and confidence to cope with the problems of old age, and the infirmities, which accompany one in later life; and it enables me to look forward, enthusiastically, to the future, whatever that has to hold. My hobbies and other interests range from vintage and classic cars (I had several Bristols et al), antiques, wine (I had a small wine business in the 1970’s-80’s), interior design, gardening, property refurbishment, classical music, cookery, current affairs. I enjoy good company, and sharing good food and wine; that’s what makes me happy! On reflection, in this momentous year, I consider that I have had my fair share of successes and failures, which must add up, in my view, to a life fulfilled. Without taking risks, you achieve nothing, which life can afford. As Churchill said: “success is moving from failure to failure without loss of enthusiasm”. I subscribe to that!
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Tom’s musings …
How many of us, too late in adulthood, have wished they had asked their parents, whilst they were around, to pass on to them the stories in more detail of their early childhood.
In my case about my time in an iron lung at two years old, about their fights with the local authority to get me an education at a “normal” school. The earliest recollection I can envisage is of my mother strapping on two full length callipers in getting me dressed for that school. The traumatic stuff for my parents as passed on to me, is only sketchy however my father being a forward thinking man at the time made a retrospective diary of the onset of my polio.
The onset of my polio hit me on the week before my second birthday. My early childhood memories are of being finally accepted into mainstream education after a week’s trial rather than going to a “special school” and of frequent visits to the orthopaedic surgeons to chart my development. And my time, age seven, of being in hospital to have surgery I think to stop me growing up stooped over. Like a right angle. Both my wasted thighs have retained the nine inch scars typical of the surgery of the day “.
On reflection, I’ve had a very full, almost normal life, despite two full callipers. I don’t feel I have Post Polio Syndrome and my trials now are in coping with the normal ageing process. Everyday stuff.
We hope that you have enjoyed the extended contributions of our members for this special edition of Post Polio Matters. To all who read this newsletter please know we believe that polio survivors are the epitome of Blooming Resilience (this special edition’s theme). Each day, polio survivors rise, embodying the essence of courage and determination. Their lives are a mosaic of battles fought and won, a series of obstacles transformed into stepping stones. Polio survivors have growth in the soil of hardship. Polio survivor stories are not just tales of survival, but of flourishing against the odds. They are the living proof that resilience is not merely about enduring; it’s about thriving with grace and dignity. Polio survivors teach us that even in the face of life’s harshest winds, the human spirit can bloom with unwavering strength.
Let us not only celebrate and honour the remarkable journey of polio survivors but also draw inspiration from it. They remind us that hope is an unstoppable force, and that true beauty lies in the courage to overcome adversity. Their legacy is one of triumph, a beacon that lights the path of resilience for all to follow.
Polio Survivors Network
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Optimal Clinical Pathway for Polio Survivors has now been launched by the British Polio Fellowship (BPF)
We are sure that many of you will be aware that the BPF launched its Optimal Clinical pathway for polio survivors on Wednesday 20 March. We are very proud of what they have accomplished with this and wish to extend our support.
Over 100 people joined the presentation and a recording of the event is available here:
https://vimeo.com/925777919/81e3c7c982?share=copy
A copy of the pathway and its associated 2-page summary is available on the BPF website:
https://www.britishpolio.org.uk/optimal-clinical-pathway
What is the pathway?
The BPF, with support from clinicians and polio survivors across all four nations, has developed the clinical pathway to outline what good treatment and care looks like for polio survivors. It maps out a person’s journey from first presentation (worsening or new symptoms) through to the GP and on to a specialist service or neurologist, who importantly will ensure nothing else is wrong. The hope is the pathway will make care and treatment for polio survivors much more effective and timelier.
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What can you do?
The pathway maps (page 7 – 9) need to be used locally, regionally, and nationally. To achieve this, they need them to reach clinicians and commissioners in Health Boards and Integrated Care Boards (ICBs), as well as general practitioners (GPs), clinical specialists, and therapists working locally and in neurological rehabilitation centres and specialist centres.
You can help by sharing the pathway with these individuals and bodies, or even better, if you have If you have contacts within Health Boards or Integrated Care Boards, introduce them to the BPF who is ready to take the lead from there.
Email the BPF info@britishpolio.org.uk Call the BPF 0800 043 1935
Visit the BPF website www.britishpolio.org.uk
Editor’s Comments: Looking at the pathway it is clear that in many of our
member’s local areas this not what is happening but we agree that it is what SHOULD happen for polio survivors.
Please can we encourage you to share this pathway with your local Health and Integrated Care boards or contact the BPF as advised above for assistance in reaching out to them. Please consider helping spread this message far and wide by remembering
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that your voice is powerful and can make a real difference in the lives of polio survivors. By reaching out to your local health officials, you can help ensure that this pathway has the best chance of being implemented effectively to improve care. As stated this pathway is designed to guide clinicians, commissioners and therapists, but they need to be in the right hands to have an impact.
Your initiative could be the catalyst for change, ensuring that polio survivors receive the care and support they deserve. Share the pathway, make connections, and be a part of this vital advocacy effort.
If you would like to share this pathway directly with your local healthcare professionals please consider using the following text:
Hello
I would like to draw your attention to the British Polio Fellowship’s (BPF) Optimal clinical pathway. Currently in our area (INSERT NAME OF YOUR AREA) it is not what is happening but I believe it is what SHOULD happen.
Please see the following link for a copy of the Optimal Clinical Pathway for Polio Survivors, along with its associated 2-page summary on the BPF website: https://www.britishpolio.org.uk/optimalclinical-pathway
Link to presentation of the pathway: https://vimeo.com/925777919/81e3c7c982?share=copy
I am proud to support this initiative from the British Polio Foundation. Please note the following information they have provided:
What is the pathway?
The BPF, with support from clinicians and polio survivors across all four nations, has developed the clinical pathway to outline what good treatment and care looks like for polio survivors. It maps out a person’s journey from first presentation (worsening or new symptoms) through to the GP and on to a specialist service or neurologist, who importantly will ensure nothing else is wrong. The hope is the pathway will make care and treatment for polio survivors much more effective and timelier.
The pathway needs to be used locally, regionally, and nationally. To achieve this, it needs to reach clinicians and commissioners in Health Boards and Integrated Care Boards (ICBs), as well as general practitioners (GPs), clinical specialists, and therapists working locally and in neurological rehabilitation centres and specialist centres.
Thank you for taking the time to consider this necessary improvement for the lives of those affected by the late effects of polio.
Kind regards
(INSERT NAME)
(INSERT CONTACT INFORMATION)
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LIVING WELL WITH POST-POLIO AS WE AGE
Nikki Wingerson, MSW, Ph.D., October 26, 2023
I. Introduction At the Ohio Polio Network 30th Anniversary and 2023 Conference, I was asked, as a mental health professional and member of the OPN Advisory Board, to write an article for OPN. I am an aging 77-yearold who has lived 38 years with Post-Polio Syndrome, so I decided to selectively explore evidence-based literature on both polio and aging to ultimately address living well with Post-Polio as we age. This article provides what I hope is relevant information for any reader about polio and its impacts; physiological changes that come with normal aging; challenges of aging with Post-Polio; suggested adaptations to aging and Post-Polio; and a few reflections derived from this exploration.
II. Poliomyelitis
Poliomyelitis is the virus that causes the disease called polio. The virus is capable of attacking nerves in the spinal cord or brain stem, paralyzing muscles related to breathing, speaking, swallowing, and moving one’s limbs. The virus attacks nerves with a shotgun scatter effect, such that the resulting physical symptoms manifest unevenly: One leg might be capable of climbing stairs, the other not. Vaccination against polio since 1955 has eradicated the disease in the United States and in virtually much of the world.
III. Late Effects of Polio and Post-Polio Syndrome: Definitions, Causation, Diagnosis
The Late Effects of Polio (LEoP) is the term for symptoms related to a person having had polio. These symptoms include fatigue; decreased muscle strength and endurance; pain; breathing or swallowing or speech problems; sleep problems; and physical symptoms, such as joint problems and scoliosis. [1]
The LEoP are not associated with re-infection by the polio virus, but rather, with a greater loss of motor neurons than is typical in the normal aging process. Loss of motor neurons leads to increased muscle weakness. Reduced muscle tissue leads to muscle fatigue and pain. Weakened limbs can lead to reduced weight-bearing activity and reduced bone density. Postural abnormalities resulting from polio can lead to pain, and/or sleep or breathing problems. Increased stress on joints can lead to arthritis and pain. [1]
Post-Polio Syndrome (PPS) is a sub-category of LEoP and is a diagnosable neurological condition for those who have had polio, with or without paralysis. PPS is diagnosed 1) when new pain and/or weakness occurs following recovery from the acute illness and 10+ years without new symptoms; 2) when these new symptoms continue for at least one year; and 3) when there is no other clinical explanation for the new symptoms. [1] Nerve Conduction Studies and EMG tests, which measure muscle electrical activity, are sometimes useful in identifying the bases for new symptoms. [6]
The symptoms of Post-Polio Syndrome typically appear 15 to 30 years after recovery from the acute illness. [9] PPS symptoms have been “associated with the degree of residual weakness immediately following [patient] polio infections.” [11] However, PPS symptoms usually are not as severe as those experienced following the acute illness. [6] Along with the symptoms of LEoP noted above, other reported symptoms of PPS include cold intolerance and restless leg syndrome. [9]
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The prevalence of PPS among polio survivors is estimated to be 25% – 40%, according to the CDC. [2] Risk factors for PPS include female sex, permanent disability caused by motor neuron damage, respiratory symptoms, muscle overuse and underuse, aging, and “immunologic mechanisms.” [9] The severity of, and degree of recovery from, symptoms caused by the acute illness determine the risk of developing PPS. [9] “As deficits at the end of the disease increase, the probability of experiencing post-polio symptoms increases.” [11]
There are three major theories for the cause of PPS. [8] The prevailing theory for the origin of PPS is based on the fact that recovery from polio involves the body creating new connections between surviving nerve cells and muscles, this to compensate for nerves damaged by the virus. [6] Over time, these compensatory nerve cells or extra nerve branches breakdown due to inflammation, injury, illness, one’s immune system, periods of inactivity, and normal aging. [6] This breakdown can occur anytime [11]
A second theory for the existence of PPS is the persistence of polio infection in the brain and spinal cord. [6] Several studies have shown the existence of polio virus genome fragments in the cerebrospinal fluid of PPS patients. [8]
A third theory for the cause of PPS is delayed immune response to the polio virus, leading to chronic inflammation and, thus, persistent symptoms of polio. [8] One study explicitly states that PPS symptoms were attributed to neuronal loss over time with inflammatory mechanisms, but “without any convincing evidence of viral reactivation.” [9]
IV. Normal Physiological Changes with Aging
With the increased experience of increased age comes wisdom. At the same time, normal aging also poses physiologic limitations apart from those experienced due to PPS. [5]
The Washington Post on October 15, 2023 included an online article by Judith Graham, “What’s normal for the body and brain as we age? An expert weighs in.” The information Graham provides is based on an evidence-based new book by Rosanne Leipzig, “Honest Aging: An Insider’s Guide to the Second Half of Life.” Leipzig is a physician and vice chair for education at the Brookdale Department of Geriatrics and Palliative Medicine at the Ichan School of Medicine at Mount Sinai in New York. Graham describes Leipzig’s book as “the most comprehensive examination of what to expect in later life I’ve come across in a dozen years covering aging.” [3]
In her article, Graham notes that explaining how we change with aging is difficult, because the aging process is gradual, decades-long, and influenced by one’s behaviors, as well as one’s economic and social circumstances, and the like. There are common and predictable physiological changes, but the sequence and timing of these changes vary from one person to the next. [3]
Graham delineates some of the age-related issues that Leipzig describes in her book. Importantly, she includes why these changes occur, not covered here due to space constraints. Older people often present with different symptoms than do younger people when they have the same illness, and they often react differently to the same medication. Indeed, due to physiologic changes with aging, older people often require lower doses of medications which they have taken for years. Older people more frequently experience cognitive changes related to medications and illness than do younger people. These cognitive changes are normal and not a sign of dementia. Also, due to physiologic changes with aging, older people experience less musculoskeletal flexibility; weakened tendons and ligaments; reduced joint range-ofmotion; reduced height; decreased muscle mass, strength, and energy; and reduced sense of hunger, thirst, taste, smell, and appetite. Older people require more energy for daily tasks and more protein for maintaining and building muscle. [3]
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 27
With aging, balance is compromised due to changes in the inner ear, the brain, and the vestibular system. Compromised balance, along with reduced bone density, leads to more frequent falls and fractures among the aging. Older people require more light to read, and more time to adjust to changes in available light. They experience difficulty in hearing, especially higher-frequency sounds and rapid speech. They find it more difficult to fall or stay asleep. Finally, people’s information-processing and reaction times slow with aging, while new learning, multitasking, and word-finding become more difficult. [3]
V. Aging with Post-Polio
In general, conditions which impact the aging population, including age-related chronic diseases, such as high blood pressure, diabetes, heart disease, COPD, and osteoporosis, may occur “more frequently, and at younger ages” among those who are physically disabled. [10] This is because health issues and barriers to maintaining health are often increased in the physically disabled population. Thus, those who are aging as well as physically disabled “need preventive services and at younger ages.” [10]
New symptoms in aging polio survivors might include pain at rest; cold intolerance; issues related to standing, walking, and climbing stairs, which increase both fall risk and accessibility issues. [4] PPS patients lament the lack of accessible public spaces, new lack of accessibility to friends’ homes, and the cost of purchasing assistive technology and services. [2] In one study, research participants were surprised at the nature of their fatigue, as it seemed unrelated to their physical effort. Some expressed surprise that they could no longer rely on parts of their body which they had previously relied upon. [4] All of these new symptoms and issues can lead to greater social isolation.
Psychological features might include reliving original polio trauma; recognition that former coping behaviors, such as “blending in,” no longer work; shame; lack of motivation; and fear of injury. [4] Fatigue due to PPS must be distinguished from fatigue due depression. Risk factors for depression include one’s previous illness experience, attitude towards disability, previous coping style, nature of physical changes, and degree of increased impairment, as well as the quality of one’s support. [12]
Interestingly, one study of aging post-polios found “modest increased weakness which may be commensurate with normal age.” These researchers found a discrepancy between patient experience with growing weakness and actual measurements of strength and neuronal loss, the measurements indicating “modest declines.” This discrepancy was considered likely due to “increased sensitivity due to their disease experiences… they lost so much strength at the time of their illness that any change is very noticeable to them.” [11]
VI. Adaptations to Aging and Post-Polio Syndrome
According to Graham, Rosanne Leipzig, in her evidence-based new book, recommends the following for adapting to age-related changes: Seek medical attention for sudden changes in functioning. Regularly ask your physician what each of your medications is for, and whether or not continued usage and dosages are currently appropriate. Engage in physical activity and in balance and resistance exercises. Stay wellhydrated – “Drink liquids even when you aren’t thirsty” – and eat sufficient protein. Have your eyes checked annually. Use hearing aids, if you find keeping up with conversation difficult. Two to 3 hours before bedtime, avoid exercise, alcohol, and heavy meals. Reduce multitasking and pace yourself. [3]
Post-Polio Syndrome management includes energy conservation; pacing of physical activities to avoid overuse; frequent rest periods; avoidance of stress; avoidance of cold temperatures; avoidance of pain with exercise; use of assistive devices; surgeries for joint repair; respiratory, occupational, and/or speech therapies; exercise physiology; podiatric care; dietetic consultation for weight management; use of mental health specialists and support groups to meet emotional needs; and planning ahead for one’s every move. [1] [2] [4]
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 28
The theory of PPS causation as an immune response to the polio virus leading to chronic inflammation proposes “treatment with immune modulators as means of combating the chronic inflammation.” [8] Management might include immunoglobulin to reduce “proinflammatory cytokines present in the cerebrospinal fluid of the spinal cord.” [9]
Aging is “often seen through the lens of the biomedical model of health, which focuses on preventing and curing medical problems causing disability.” Disability is often seen through the lens of the “social model of health, which focuses on building inclusive environments and eliminating systemic barriers.” [2] Both lenses are needed for clear vision towards patient quality of life. Living well with Post-Polio as we age requires an individualized, goal-oriented, comprehensive, interdisciplinary approach, with focus on empowerment and positive self-evaluation. [4]
VII. A Few Reflections
Undoubtedly, there is overlap in symptoms of PPS and aging. Either may aggravate the other. Both PPS and aging populations may experience an increased sense of vulnerability and difficulty accepting help. We aging Post-Polios must trust and honor what our bodies tell us about our need to make adaptations, regardless of how others perceive or judge our capabilities, or what tests might indicate about our strength.
Likewise, there is overlap in adaptations to PPS and aging. The good news is that those with PPS likely have already devised ways to adapt to changes in their physical function prior to experiencing the effects of advanced aging. In fact, they might consider themselves expert at adaptation.
As a polio survivor, I used to be able to conceal my left arm paralysis, the only polio residual I had for years. I was encouraged to find ways to do physically most everything that my peers could do. I was fortunate, for the most part, to be able to “blend in.” Then, at the age of 39, about 35 years after I had polio, I began having trouble climbing stairs. An orthopedic specialist described my legs as “misaligned,” in that polio had impacted muscular function in each leg differently. I had not known my legs were impacted at all.
I was informed that I had Post-Polio Syndrome. I gradually made adjustments. While I had to make adaptations that my non-polio peers did not have to make, I was exceedingly fortunate in having much remaining physical ability, adequate supports, and the financial means to hire help or buy equipment as needed.
Now I use a railing and climb stairs one at a time, since only one particular leg can lift me up each stair. I use a sling to support my limp arm. I’ve had to ask for assistance like never before. The difference for me now is that as I look around, I see that I have company among my aging non-polio friends in the use of assistive devices and asking for assistance. I “blend in,” but in a different way now. Aging has become a common leveler.
If age makes common bedfellows of us all, then I am in good company. Perhaps I can let go of past capacities with a bit more grace, if I view my increasing limitations from that perspective.
Living well with Post-Polio as we age requires that each of us find our own unique way to capitalize on our strengths and move forward, just as we always have. We need to take seriously suggested adaptations to PPS and aging, such as those noted above. That said, I rest my case and will adjourn for my regularly scheduled nap.
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 29
VIII. References
1 Better Health Channel, 2021, Victoria State Government Dept. of Health. Polio Australia. Retrieved October, 2023. https://www.betterhealth.vic.gov.au/health/conditionsandtreatments|polio-and-post-polio|syndrome
2 Duncan, Andrea and Batliwalla, Zinnia, “Growing old0er with post-polio syndrome: Social and quality-of-life implications,” NIH National Library of Medicine, National Center for Biotechnology Information. Retrieved October, 2023. Sage Open Med. 2018; 6: 2050312118793563 . Published online Sep 3.2018. doi: 10.1177/2050312118793563 PMCID: PMC6122244 | PMID: 30202523
3 Graham, Judith, “What’s normal for the body and brain as we age? An expert weighs in,” The Washington Post. Published online October 15, 2023. Retrieved October 15, 2023.
4 Hammarlund, Catherina Sjodahl, Lexell, Jan, and Brogardh, Christina, “Perceived consequences of aging with late effects of polio and strategies for managing daily life: a qualitative study,” BMC Geriatrics. 17, Article No. 179, 2017. Retrieved October, 2023. https://doi.org/10.1186/s12877-017-0563-8
5 Jensen, Mark P., Ph.D., Department of Rehabilitation Medicine, Hughes M. and Katherine G. Blake Endowed Professor in Health Psychology, University of Washington, Seattle, Washington, “Aging Well with Post-Polio Syndrome,” Post-Polio Health. Vol. 25, No. 1, Winter, 2009. Retrieved October, 2023.
6 LeWine, Howard E., MD, Reviewer as Chief Medical Editor, Harvard Health Publishing, “Post-Polio Syndrome,” Harvard Health. March 24, 2023. Retrieved October, 2023.
7 Li Hi Shing, Stacey, Chipika, R.H., Finegan, Eoin, Murray, Deirdre, Hardiman, Orla, and Bede, Peter, Computational Neuroimaging Group, Academic Unit of Neurology, Biomedical Sciences Institute, Trinity College Dublin, Dublin, Ireland, “Post-polio Syndrome: More Than Just a Lower Motor Neuron Disease,” Frontiers Neurol. 16 July 2019, Sec. Neurodegeneration Vol. 10, 2019. Retrieved October, 2023. 10:773. doi: 10.3389/ fneur.2019.0073. PMID: 31379723; PMCID: PMC6646725
8 Morolake, Amole and Khouzam-Skelton, Nadine, with Lobmann, Raif, Academic Editor, “Diagnosing Post-Polio Syndrome in the Elderly, a Case Report,” Geriatrics (Basel). Jun; 2 (2): 14, 2017. Published online 2017 Apr. 30. Retrieved October, 2023. doi:10.3390/geriatrics 20 200 14 PMCID: PMC 637 1137\PMID: 310 11024
https://doi.org/10.3390/geriatrics2020014.
9 Oiuwasanmi, Oiuwaseyi Jacob, McKenzie, Devaunna Adrene, Adewale, Idowu Oluwasegun, Aluka Christian O, Iyasse, James, Olunu, Esther, and Fakoya, Adegbenro Omotuyi, “Postpolio Syndrome: A Review of Lived Experiences of Patients,” Int J Appl Basic Med Res. 2019 July-Sep; 9 (3): 129-134. Retrieved October, 2023.
doi 10.4103/ijabmr.lJABMR 333 18 PMCID: PMC665 2271 | PMID: 31392174
An interesting discussion …
‘Championing For The Medical Rights Of People With Post-Polio Syndrome’ by Post Polio Syndrome Advocacy Group.
It is listed by Ken Masson on behalf of the Post Polio Syndrome Advocacy Group and is hosted on YouTube
https://youtu.be/47Wb0Vl9kvE?feature=shared
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 30
Worth a watch …
We want to share with you a link to a training video for a Doctor meeting with a post-polio syndrome patient. It is listed by MRCP Paces Haider Internal Medicine and hosted on YouTube
https://www.youtube.com/watch?v=Cpg5tf3ok2s
Useful Resources
• International Ventilator Users Network
www.ventnews.org
• Disabled Motoring UK
www.dmukdiscounts.co.uk
• Pain UK
www.painuk.org
• National Voices
www.nationalvoices.org.uk
• Neurological Alliance
www.neural.org.uk
• Rare Disease UK
www.raredisease.org.uk
• End Polio Now – Rotary International
www.endpolio.org
• European Polio Union
www.europeanpolio.eu
• Post-Polio Health International
www.post-polio.org
• PA Polio Survivors Network
www.papolionetwork.org
• Polio Quebec
www.polioquebec.org/eng/
• Polio Survivors of Marin
www.facebook.com/groups/163909760771171
• Atlanta Post-Polio Association
www.atlantapostpolio.com
• Nebraska Polio Survivors Association
www.nepolioorg.ipage.com
• Polio Australia
www.poliohealth.org.au
• Word-Wide Fellowship of Polio Warriors
www.poliowarriors.org
Here is a link to the 8th video in a series of ten videos discussing post-polio conditions, this video covers the health risks people face who have been exposed to polio, provides an overview of the four risks areas and presents ways to manage risks for those with history of polio exposure. It is listed by Polio Australia Inc who own the copyright and is hosted on YouTube https://www.youtube.com/watch?v=LKDfrCq6–E
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 31
Chair – Simon Parritt simon.parritt@poliosurvivorsnetwork.org.uk
Trustee – Zsuzsanna Snarey zsuzsanna.snarey@poliosurvivorsnetwork.org.uk
Treasurer, Newsletter Editor – Hilary Boone hilary.boone@poliosurvivorsnetwork.org.uk Trustee – Verité Reily-Collins verite.reilycollins@poliosurvivorsnetwork.org.uk
Trustee/s – Vacancies please contact Toni for more information
Operations Team
PSN Admin, Enquiries and Website – Toni Dunlop 07480 110334 psnadmin@poliosurvivorsnetwork.org.uk Printing – Imprint Colour Printers, Lincoln
Management Committee [Trustees]
With grateful thanks to the generous legacy from Ms A Brown, we are able to make
membership FREE whilst our funds remain above £10,000.00
Website www.poliosurvivorsnetwork.org.uk
Write to us at PO Box 954, Lincoln, LN5 5ER, UK Email psnadmin@poliosurvivorsnetwork.org.uk
Phone us on 07480 110334 and we will ring you back when we collect our messages
UK Members – receive newsletter by post and/or email (overseas members newsletters by email only)
All donations, small or large, towards our work are gratefully received
Donate by cheque to Polio Survivors Network by PayPal to treasurer@poliosurvivorsnetwork.org.uk
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The Gift Aid scheme. Charities can reclaim an extra 25% in tax on every eligible donation by a UK taxpayer. This ‘transitional relief’ does not affect your personal tax position. You must pay tax at least equal to the amount reclaimed on your donations in the current tax year. If you pay tax at the higher rate, you can reclaim tax relief on your gross donation at 20% (i.e. the difference between the higher rate of tax at 40% and the basic rate at 20%).If you have not filled in a current Gift aid form please contact us and we will email/post you one. Thankyou.
Editors Note: Articles from Polio Survivors and Health Professionals welcomed
The most accepted articles by NHS professionals we have found are:
PatientPlus article POST-POLIO SYNDROME
Written by U.K. Doctors for Doctors
http://patient.info/doctor/post-polio-syndrome
NB Respiratory and Sleep Problems Section very informative. ——————————
GOOD ANAESTHETIC ARTICLE – English version used by many PPS Groups
POLIO PATIENTS AND SURGERY – Information for health staff.
Lise Kay, MD, Surgeon PTU – Danish Society of Polio and Accident Victims
http://www.europeanpolio.eu/documents/13642_Polio_operation_eng_TRYK.pdf
Printed copies on our headed paper with permission are available.
© Polio Survivors Network – Volume 11, Issue 5 [125] April 2024 Page 32
| …because WE’RE STILL HERE!www.post-polio.org |
| We hope this special edition captures the diversity and uniqueness of each polio survivor, we all may well have different experiences and perspectives. We have all been affected and influenced by polio, but it does not define who we are. |
a symbol of resilience and journey. This artwork depicts a tree with half of its leaves transforming into flying birds. The dark, dense part of the tree represents the challenges and hardships faced because of polio. The birds, formed from the leaves, represent overcoming obstacles and moving towards recovery, freedom and possibilities.
Is your polio survivor story …
… or more like ….
a cat tangled in the lines of a notebook, symbolising the challenges and obstacles constantly faced. The cat’s calm expression represents a kind of acceptance but with the ongoing effort to work things out. It is also a metaphor for the creative and adaptive ways that we polio survivors cope with our condition and find our own solutions.
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