Jim's Story

I currently live in Bowmanville, Ontario east of Toronto. My background is Professional Civil Engineering as a Consultant. I am officially retired as of 2020.

My disabling stroke took place in 2010 at the young age of 55.

I received excellent treatment, care and initial physiotherapy while at St. Michaels Hospital, Toronto.  Due to bleeding around the brain a portion of my skull was removed and placed in a hospital freezer. Three months later my missing skull was reinstated.

In June, 2010 I was transferred to the Toronto Rehabilitation Institute (TRI). On the second day I was assessed and given my discharge date of six weeks later. This is when I realized that stroke treatment is all about timed limited services and if you do not recover, too bad for you.

Once home I received outpatient physiotherapy through my local healthcare system. Again, this came with a time limit which amounted to 12 one-hour sessions. On the 12th day I asked my social worker to stay longer in the outpatient program as I still could not bathe or dress myself. To this day I still cannot bathe or dress myself. I need a PSW every morning which is funded by my local healthcare system.

My social worker responded with, “YOU’RE DONE, GO HOME AND FIGURE IT OUT FOR YOURSELF”. I was not impressed with the harshness of the message.

I wrote to Ontario Health Minister Deb Mathews in the Fall of 2010 explaining my situation and requesting more publicly funded stroke treatment. Just before my 56th birthday I received a lovely response letter from Ontario’s Health Minister. I was informed that it is only survivors who are 19 and younger and those 65 and older who qualify for more publicly funded stroke treatment in Ontario. Because of my age of 55 I did not qualify for more treatment. This was the first time in my life I experienced alleged discrimination.

I attended a private clinic in Toronto with a Lokomat where I was suspended from the ceiling in a harness and robotics were attached to my feet while walking on a moving treadmill. I attended for two months as the costs were quite high for a person not working. Each session was approximately $200.00 with limited private insurance coverage.

Between 2010 and 2020 I spent approximately $20,000.00 per year, out of pocket to purchase private and expensive stroke recovery programs and not covered by any insurance, public or private. I have a saying, “RRSPs should be for retirement and not for funding healthcare”. If it was not for retirement savings, I would never have afforded my very limited recovery to date. Many Canadians, especially our young ones do not have easily accessible retirement funds to deal with a stroke.

In the Spring of 2016, I took the Wynne government and Ontario Health Ministry before the Human Rights Tribunal Ontario with a complaint of age discrimination.  I cannot discuss the outcome as I selected Mediation and was forced to sign a non-disclosure agreement. Since 2010 I have signed three non-disclosure agreements related to my stroke experience.

Since 2015 I have been trying to convince Ontario to eliminate age discrimination in stroke treatment with some recent success. In 2016 I helped the Official Opposition to develop bill 9, “Improving Post-stroke Physiotherapy for All Act2016” and pass it into new healthcare law. Unfortunately, the Wynne government refused to implement bill 9 as intended. Ontario is now in the early stages of developing a new Post-stroke Rehabilitation Program for survivors of all ages an d it will not be introduced until 2032 or beyond.

My physical recovery has been limited but fortunately my cognitive function was not significantly impacted and I try to help other stroke survivors with their new experience, giving a new sense of purpose.

I have left side paralysis and no function of my left arm/hand. Walking throughout my house is possible with a quad cane. I have an electric wheelchair for outings.

My limited research shows that Quebec has some of the best provincial post-Stroke recovery/rehab programs. They do not appear to have age restrictions for young adult stroke survivors seeking further recovery. In my experienced opinion a national stroke recovery policy or Initiative is needed to ensure consistency of post-stroke services across Canada. We should not be forced to move to other Provinces for publicly funded healthcare. The Canada Health Act clearly states that the Provinces and Territories shall not impede healthcare delivery with financial or other barriers. Arbitrary Barriers in Post-stroke treatment/recovery must be removed.

Potential and sometimes limited stroke recovery is possible if you work at it every day. Now 14 years later I feel that my limited recovery has peeked.

The best suggestion I can give to new stroke survivors is to find a private neurological physiotherapist. And don’t be shy about setting up a “GO-FUND-ME” account to pay for this medical service. This will help to raise attention to the poor job our public healthcare system is doing in helping stroke survivors of all ages.