Skip to content

My Story with Polio

Now 72, retired film and video producer Barry McMahon was diagnosed with acute paralytic polio in 1951 when he was 3 years old. His respiratory muscles and the muscles in his arms and legs were affected, but he did not need an iron lung. He spent months in isolation in the hospital, followed by several months of recovery and rehabilitation. His first sign of recovery was the mobility gained in his left toe.

Barry still has weakness in his arms and legs, especially on his right side. He learned to walk without a walking aid, but needed a knee-ankle brace to support his right leg; he used it for 8 years. He underwent arthrodesis and tendon transfers in his right ankle to support his right foot and ankle for a safe gait. This weakness never improved, but he learned to live with it. He has been able to work, raise a family and complete various projects.

In the 1980s, Barry had a nasty fall and fractured his femur. In 1990, he began using an electric wheelchair to avoid falls and to cope with his declining muscular endurance.

In 1996, without having experienced any trauma or specific illness, Barry suddenly developed increased fatigue, decreased muscle endurance and began to experience increased weakness and generalized, intractable pain.

Given his history of polio and the lack of other identifiable causes, a physiatrist diagnosed him with post-polio syndrome. Also in 1996, as his symptoms persisted, Barry applied for long-term disability benefits. Despite his difficulties, he continued to volunteer with community charities. Several factors make Barry's PPS symptoms difficult to manage. One challenge is finding health care professionals who are knowledgeable about the long-term effects of polio and how to treat it so that he doesn't develop new symptoms. The most difficult symptom to manage is pain. Barry's pain is multifactorial; it is constant, generalized and varies in intensity with activity, which is common with post-polio syndrome.

Given his history of polio and the lack of other identifiable causes, a physiatrist diagnosed him with post-polio syndrome. Also in 1996, as his symptoms persisted, Barry applied for long-term disability benefits. Despite his difficulties, he continued to volunteer with community charities. Several factors make Barry's PPS symptoms difficult to manage. One challenge is finding health care professionals who are knowledgeable about the long-term effects of polio and how to treat it so that he doesn't develop new symptoms. The most difficult symptom to manage is pain. Barry's pain is multifactorial; it is constant, generalized and varies in intensity with activity, which is common with post-polio syndrome.

The patient's point of view (reference page 16) There are an estimated 31,000 polio survivors in Canada, and less than half of us would show symptoms of post-polio syndrome. We are not a large cohort, so we face the unknown in health care.

I have used several assistive devices (they are always evolving), and my home is universally accessible, but the interventions I have benefited from the most are the help of my soul mate, my daughters, and the attendants sent to me by my community center.

Apart from a few small studies in the last few decades, there has been little clinical research on post-polio syndrome. I assume this is due to the fact that our cohort is small, that every year they die, and that the pharmaceutical industry is not interested.

In general, polio survivors are very independent people; we are usually quite capable of navigating our way through health issues. Those of us with significant mobility limitations appreciate telemedicine, which is gaining popularity (in part due to the pandemic), especially in the winter.

I feel closer to my health care team and hope this trend continues. That said, in-person appointments are of course still necessary for physical exams and surgeries. There are several elements of my post-polio syndrome that remain mysterious. How do I know if my other symptoms (cold intolerance, medication sensitivity, swallowing problems, weight gain and edema) are part of post-polio syndrome or if they are due to other underlying causes?

What are the effects of post-polio syndrome on the normal aging process? I have always believed that the goal is to maintain a balance between physical health, mental health and spiritual health. When this balance is achieved, my resilience increases in the face of constantly changing pressures.

A close friend's point of view

Barry and I met 4 years ago; we had lost our spouses 4 and 3 years before.

I knew what polio was: when I was a child, the schools in Newfoundland had closed during the 1959 epidemic.

My first job, in 1968, was at a children's rehabilitation center in St. Louis.

In the early days of the program, patients at St. John's Hospital were learning to cope with the effects of polio contracted nine years earlier.

I had never heard of post-polio syndrome until I met Barry. Barry is extremely independent. I was impressed that even confined to an electric wheelchair, he was able to drive, scuba dive, cook to perfection, babysit 5 of his grandchildren after school and live independently with minimal assistance from attendants to groom and dress in the morning. Barry never complains of pain, but when asked, he confirms that it is always present in varying degrees. He also has muscle spasms and cramps, sensitivity to cold and swelling in his lower extremities.

Barry copes with his limited mobility and fear of falls by following strict steps for getting up, getting in and out of his wheelchair, getting dressed and preparing meals. For the past 4 years, I have been able to convince him to wear compression stockings and use intermittent compression boots when sitting. These boots may have increased his dependence on others to put on and take off his stockings, but they have decreased his swelling and discomfort in his lower extremities. Massage therapy helped relieve his thigh muscle cramps until an occupational therapist designed lateral supports at the end of his wheelchair seat to correct adduction problems.

Barry continually analyzes his symptoms and proactively works to find the best possible solutions. Some of his difficulties have gradually disappeared. For the past 6 months, however, he has lost confidence in his ability to drive, as the reaction time in his dominant left leg and foot has slowed. Perhaps post-polio syndrome accentuates the normal slowing of reactions that we all experience as we age. I am doing my best to help Barry remain independent. Even though I am a retired health care professional, it took my personal involvement to realize that staff at airports, stores, hotels, etc., tend to approach me rather than Barry in his wheelchair.

I also notice that most people never think about accessibility issues until they or a loved one is personally affected. - Joan M. Fisher

The physiatrist's point of view

I met Barry in 2001, after his previous physiatrist retired. For decades he had been followed at a neuromuscular rehabilitation center for his post-polio syndrome. We focus our consultations at the clinic around several goals, including wheelchair comfort, safe transfers, energy conservation and pain management6. Barry shows up at all of his appointments ready to take stock and ask questions about the issues he has identified. This is usually quickly followed by a plan that he wants to discuss. For example, on one visit, Barry explained that after an episode of illness, he had been having difficulty with his transfers. I asked him about other functional issues and performed a focused neuro-musculoskeletal exam, after which we explored various options, such as installing a grab bar

Super-Pole to help him get in and out of bed. Barry initially said, "I don't think I'm there yet." And I respected his point of view. Eventually, he agreed to try some assistive devices. These improved his functioning and quality of life.

Pain management is an ongoing issue, especially as Barry ages. I've been looking to explore non-medical strategies. Over the years we have tried various modalities, stretching programs, hydrotherapy and massage therapy. We checked his electric wheelchair to ensure maximum comfort. Barry kept a log of his activities and made connections with his pain perception to try to identify contributing factors.

We also went over energy conservation and sprawl strategies. At one point, Barry wondered if he could try medical marijuana. A review of the literature, however, generated anecdotal advice of limited use for people with post-polio syndrome. I suggested that he work with a medical marijuana specialist, and we discussed specific parameters for measuring its effects. He is currently working on that.

Barry started diving with a specialized instructor for people with disabilities. With no medical contraindications, Barry literally dove right in. He noticed a reduction in his pain, especially on the days he was diving. We explored factors that might contribute to this phenomenon, such as having fun, enjoying a new and challenging activity, moving in a near weightless environment, and improving physical fitness.

Unfortunately, the COVID-19 pandemic has put this critical activity on pause.

Other challenges include access to funding for equipment and treatment. Services provided by specialized outpatient and community clinics are still at the mercy of provincial budget cuts. For example, there is a shortage of clinical psychologists to help outpatients who are struggling to cope with the acute, chronic and progressive phases of their disability. Often, Barry paid out of pocket for the devices and services he needed. The pandemic exacerbated these challenges, including longer wait times for critical home services, such as visiting attendants. - Sue Dojeiji

Family Physician's Perspective

I met Barry 10 years ago when he and his wife (now deceased) became my patients. He was already being treated in physiatry. I saw this as an opportunity to be involved as a resource person and a trained clinician. I was able to measure the impact of his post-polio syndrome. His array of symptoms - pain, weakness, fatigue and others - has become more complex with age, and resources and supports are limited.

Fortunately, and to his credit, Barry is strong-willed and has a holistic approach to his health; he also has a good social network and a dedicated health care team. We work together to find solutions; we have considered, tried and eliminated many. For example, at one point we considered using medical marijuana for his pain. I expressed my opinion to Barry about the available data (or lack thereof). I believe it was the quality of our patient-doctor relationship over the years that allowed us to explore even non-traditional approaches. I have met Barry's family. It is critical that I know how his family, friends and health care team are involved in his illness and care. I want to be prepared to work with them if there are problems. With Barry, they often have a front row seat to notice any deterioration or new needs. Barry is very close to his daughters and together they openly discuss everything about his well-being. His daughters have suggested tests; for example, they have already requested a test for celiac disease because one of them has it.

They talk to each other if there is a change in his general health and they have made sure that he appoints a proxy for his health care.

As Barry ages, I hope to continue to be one of his health advocates to ensure that he receives the care he needs and, most importantly, the appropriate community support and medical interventions. - Rene A. Leiva

By Barry McMahon

Source article:https://www.cmaj.ca/content/194/7/E266