My Polio Story - Vicki McKenna
I contracted polio as a seven-month-old baby. Obviously, I remember nothing of the onset of the disease but I know from what my mother told me that I was ill for several days with ‘flu like symptoms-a high fever and stiff back and neck. None of the symptoms seemed to warrant immediate hospitalisation. No one thought of polio at first and it was only when my mother noticed that my right leg seemed “floppy” that I was whisked off for a lumbar puncture at the hospital and it was discovered that I had contracted polio.
Although I was left with a weakened right leg and needed to wear a full-length caliper and a built up shoe, I could have forgotten that I ever had polio and indeed never considered myself “disabled.” As a child I climbed trees (breaking many a caliper!), swam like a fish and generally kept up with and often pushed myself ahead of my peers. Although I spent some time away from my friends in hospital having operations on my leg, I can honestly say that I never considered myself different from them in any way.
My life progressed fairly smoothly after my recovery from polio. I was a fairly wild teenager and a bit of a hippy – almost forgetting my slower right leg as I hitched hiked round Europe for two months after my years at university. I married, had two children, divorced, remarried, trained to be an acupuncturist and crammed a lot into my life, I had no time to waste! Then, in my late thirties as a busy mother of four and a practicing acupuncturist, I started to experience some strange and worrying symptoms. My “good” leg started to feel weak, I was finding myself exhausted particularly after any form of exercise and experiencing aches and pains in muscles and joints. All of these symptoms were new to me and I responded to them with both fear and anger. I remember telling a friend “I can’t be burdened with this problem, I have a household to take care of and work to get on with !”
Working full time as an acupuncturist with four young children I was on a merry go round that got faster and faster until it spun out of control. My poor old body was not prepared to keep up the hectic pace I had set it and with the symptoms of what I came to know as Post Polio Syndrome becoming too strident to be ignored, I finally had to let go of pushing on, and give myself a break. So, I started to explore what PPS was all about and took time out to write a book about it. “A Balanced Way of Living; Practical and Holistic strategies for Coping with PPS” was published in 1999. Based on what I learned from my years practicing the art of acupuncture, it focuses on ways to handle the symptoms of these late effects of polio. In the book I wrote . . .
“My perceptions of life and illness have been altered by my experience of PPS and also by my study of Chinese medicine and its philosophy of Daoism which is the background to the practice of acupuncture. This philosophy is full of down to earth wisdom which offers us a new perspective on life and these truths can teach us to value our health and well being. They have helped me enormously to cope with and understand PPS. Daoism flowered in China thousands of years ago and holds that there is a vital force that permeates all life. This energy is known as ‘Chi’ and when it flows within us steadily and calmly then we are in good health. When Chi is blocked or is deficient due to physical or emotional factors such as viruses or pent-up emotional states, then there will be disharmony and imbalance - in other words disease.
In the view of Chinese medicine symptoms of disease are not to be suppressed or covered up as they are so often in Western medicine. Instead, illness and its signs and symptoms are seen as an opportunity to encourage and restore the flow of Chi energy so that healing takes place and harmony is restored. Interestingly, in Chinese character writing the same symbol is used for the word ‘crisis’ as for ‘opportunity’. Thus, the Chinese view is that whatever creates a disturbance in the flow of life, whatever stressors create crisis, will also serve as an opportunity for fresh growth. This attitude helped me to perceive my life in a new light as I began to see the symptoms of PPS not as a crisis to be averted or suppressed but as an opportunity for me to restore health and balance to my life. We polio survivors have pushed ourselves hard in response to trauma, always feeling that we need to achieve and prove ourselves. We now need to learn to respond to life’s often difficult events in a different way. We can do this by altering our perception and remembering that fundamentally we do have a choice - we can see PPS as a crisis that we have to struggle with or as an opportunity to take control and learn new attitudes and skills that will help us to take better care of ourselves and so feel more at ease in our lives.”
In writing the “science” part of the book I was greatly helped by the technological revolution that had recently given us the internet and brought me to the wonderful Dr. Richard L. Bruno, PhD (Dick as I came to know him). Thanks to him I was able to gather much information about these late effects of polio. Also, thanks to the internet, I came upon Hilary Ann Boone (Hallam as she was then) who had set up the Lincolnshire Post-Polio Network (known as the Link Pin). Hilary put me in touch with other polio survivors who I then contacted and recorded their stories for my book. In this way I began to realise that there were many of us out there and that we needed to get ourselves organised!
One of the Scottish polio survivor’s I connected with was Agnes Walker from Edinburgh. Agnes had a wealth of experience when it came to practical organisational skills and so that was how the two of us and a few other survivors whose stories were recorded in my book, set up the Scottish Post Polio Network (SPPN). We started to meet to share experiences as polio survivors with PPS and also to have a laugh, a chat and light refreshment at a very cosy pub just outside Stirling.
As time went by, we formed a committee and thus the SPPN became a registered charity. From those very early days we decided not to be a “moan and groan” group. Although we met to share our frustrations with regards to living with PPS and also with regards to the lack of support from the medical world we decided at that first meeting that we were not there to have a griping session! Our commitment from the start was to campaign to raise awareness of PPS and to act as a source of advice for new and existing members, other polio survivors and their families. Furthermore, we were keen to campaign for a central “one stop shop”, a PPS clinic to provide treatments such as physio, counselling and orthotics for those of us experiencing PPS. The UK has only one clinic specialising in PPS, the Lane Fox Clinic. Located in the St Thomas’s Hospital in London, it is a vast distance away from us in Scotland.
In all of this we were very much supported and advised by the very helpful Dick Bruno, so it was natural to ask him to be the patron of the SPPN and we were delighted when he agreed and he continued as patron of the organisation until his death in 2024.
The founding of the SPPN was exciting stuff and I loved being part of it all. However eventually I decided I could no longer stay actively involved. Once again, I needed to “walk my talk” and stop taking on too much! With family and my acupuncture commitments I needed to let go of all that I had helped to initiate, and it was a wrench. But it had to be done, and fortunately the organisation was taken over by incredibly devoted people. In 2005 the SPPN took its campaign to the Scottish Parliament where it became well supported for many years by the marvelous member of the Scottish Parliament Margo MacDonald until her death. She tried hard to get better support for polio survivors in Scotland but the perception by those in power was and still is that we polio survivors are a dwindling group and therefore not worthy of financing that “one stop shop” in Scotland that we hoped for. Without public or private funding, the dream of a PPS clinic was over.
In 2010 my mobility decreased as I fell and broke my polio leg. Now I needed to use an elbow crutch to get around and I began to feel more “disabled” than I had before. Then in 2019 a bigger blow – the knee on my “good” leg gave up and I had to resort to using two elbow crutches. Fairly soon after, I realised that I needed to use a small fold up mobility scooter indoors as well as the large mobility scooter I had been using out of doors since 2005. My walking days were pretty much over. Never one to focus on what I can’t do, I made sure I got a car with a hoist for my big scooter so I can take my “legs” with me wherever I go, so long as I have remembered to fully charge the batteries!!
Sadly, a blow came in 2024 when we lost our dear Dr Bruno. He had been mentor and friend to so many of the polio community and of course was the patron of the SPPN. Quite frankly he can never be replaced. However, Dick has taught us all so much and thanks to the internet, and his Encyclopedia of Polio and PPS, we still have access to his great body of work concerning PPS. Then in 2025 a further sad occasion, the SPPN had to disband as a charitable organisation. There are fewer of us polio survivors and the members of the committee are now older and wanting understandably to retire from their posts. After a quarter of a century of dedicated hard work giving both people who have had polio and medical professionals the most up-to-date information about Post-Polio Syndrome the committee members past and present needed a well-deserved rest. However, many of us members of the SPPN continue to keep in touch with each other. We meet for lunch and catch up on how we are managing this very late stage of PPS. No one understands the challenges of the late effects of polio like others survivors of polio!
Vicki McKenna at Ben Nevis Mountain in Fort William, UK
At 74 years old I still see old patients for acupuncture and care for my six grandkids who are the light of my life. I spend time with my lovely four daughters and their families and meet friends for lunch. I try to “conserve to preserve” as Dick taught us but often overdo things! Luckily nowadays, as a Grandma I am allowed to nap freely! And although my dear and stalwart husband Steve and I finally let go of our camper van we still get away for the breaks we enjoy all over Scotland, England and Wales. Next year hope to revisit Ireland!
I am working on a second book – its only taken me 25 years to get round to it! This time it will be a personal account of my polio story rather than a self help book but I hope it might find resonance with others on their polio journey.
Polio and PPS have been challenges in my life but have never defined me. Instead, they have given me gifts I would never be without - the friendship of other polio survivors and of dear Dick Bruno and of course. Like so many polio survivors, I have had the opportunity to cultivate a rather dark sense of humour!
For an e copy of “A Balanced Way of Living; Practical and Holistic Strategies for Coping with PPS” please contact vickimckenna51@hotmail.co.uk (or) you can order it for a very minimal charge in Kindle format (in the US) from Amazon and (in the UK) from Amazon
Note: Spelling in the UK is often different than that of the US (particularly “s” vs “z”.) All photos courtesy of Vicki McKenna