Post-polio syndrome 2019 By Martin Hill

Dear family and friends:

I have some difficult news to share with you.

You may recall that as a young child I was caught up in 1950’s polio epidemic. My type was “bulbar polio”- affecting the throat, confirmed by a ‘spinal tap’. My parents had been warned to be prepared for my death – against all odds I recovered.

Upon leaving hospital, I remember lots of swimming therapy at the YMCA in downtown Montreal and loads of facial exercises.

This did not stop me from being a paperboy for the Montreal Gazette, being up a 5am to complete delivery before school with collection n reporting duties and like most boys earned money by shovelling snow, house & window cleaning; buying a lawnmower to offer lawn care services.

During the 1980’s, our mother who was a very accomplished RN had advised me about a health scare affecting polio survivors. With a doctor’s (Bhatia) referral in hand I visited a hospital in London England specialising in post polio syndrome. My history was reviewed in detail. Feeling that there was nothing to worry about and continued on.

Over the years I have been very active in numerous sports and activities. Hockey, baseball, football, lacrosse, tennis, squash, sailing, white-water canoeing n camping, boating (power), swimming, scuba diving, motorcycling, cycling, downhill skiing; golf n caddying and even English horseback riding.

Another interest was wood working – building tables, bookshelves, our dinning room table (medieval style) and gardening and reading.

And then lots of varied travel – international UK, Canada & USA, India, Egypt, China – Hong Kong, Thailand, Cambodia, France, Switzerland, Spain, Ibiza, Poland, Cook Is, Australian New Zealand , Bermuda, Cayman Is, Cozumel, Bonaire & Curacao, St. Vincent, Cancun, Granada, St. Lucia, Cuba, Dominican Republic, Italy n Vatican City, Jamaica, (Andaman Sea).

Community giving activities included coaching (hockey), Canadian Hosteling Association (Board of Directors), United Way – committees (pension, finance, Executive and Board of Directors), later business development; Motorcycle Ride for Dad – fund raising (Prostate cancer), St Joe’s  Eucharistic Ministry. Jury duty – twice.

Believing personally that polio was ancient history, I have been alarmed about the decline in my physical abilities the past few years and the impact of Post Polio Syndrome.

Some symptoms include:

  • original- leg muscle stiffness difficulties basic skating n stopping.
  • muscle & joint issues – stiffness in my legs and overall reduced flexibility.
  • major swallowing issues – breathing. general fatigue & exhaustion sometimes with little activity.
  • major sleep issues.
  • deceased tolerance to cold hot temperatures.

Many of these changes can be common to many of us as we age.

They seem to be more acute with Polio Survivors who have a common history of pushing to way to hard – burning the candle at both ends – in my case, often also in the middle.   There  seems  to   be some other correlation relating to the quickness of polio recovery and the onset of post-polio syndrome.

So what is the current status

I am in the process of trying to get direction, diagnosis and help.

I visited March of Dimes office (Centrepointe), thinking that they had programs – it provides mostly employment services.

I have seen Dr. Arora our family doctor & has referred me to Neurologist.

Part of the dilemma is that most doctors are not current. She told me to expect this to take considerable time before they contact me: arrange next steps -appointment, testing, results, etc. You get the point. Also, a throat specialist needs to be found – I have a consultation soon. Meanwhile, I have called the 800 number for polio Canada for help – see what happens – so far not much has happened. I have made contact with a Post Polio Group in Ottawa, they have ceased due Covid 19.

An update

in May fortunately I found a Post Polio Support group (March of Dimes) that meets Wednesdays via Zoom. They have been a major inspiration – Bojan, Eddie, Mona and the many women who are amazing survivors. I did get to see Dr Dora Trojan (who is a world specialist) in Montreal this past August and she was able to confirm my condition- this was made only possible by the direct intervention of Tatiana (Dr) Robert Dufour who had a professional relationship with Dr Trojan.

Please know that this is not something hide from you, just writing has been hard (tech has been very difficult). I have had an amazing life with many wonderful friends and family- Agnes (my wife) my 5 children Elizabeth, Alexandra, Christopher, Marek and Nicole and two grandchildren Mikayla Aryana.

I do hope to write more, but time will see.

Next part I hope cover my academic, business life More to come, hopefully.

De Martin Hill