Story of Jim McEwen’s stroke experience:
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.
In March, 2010 I was driving home from a meeting in Hamilton, Ont. and I noticed white lightning crossing my eyes. I placed a hand over one eye and noticed I had no eyesight in the other eye. One eye felt like it was going to explode. I pulled over and used my OnStar system to call for an ambulance. With the GPS system the ambulance attendants easily found me. I told the attendants of my symptoms and that I was likely experiencing a stroke. At this stage I was able to walk from my car to the ambulance. Unfortunately, the ambulance attendants took me to a hospital without a stroke protocol meaning there was no Neurologists on staff and they did not have the clot busting drug. While in the ambulance my eyesight returned. I waited for an hour before a doctor visited me in the hospital ER. While in Emergency I fell to the floor and suffered a significant event. They gave me a CT scan and said they found bleeding around the brain. They ordered another ambulance to take me to St. Michaels hospital in Toronto where they have neurologists and stroke protocols. While in St. Michaels they gave me another CT scan and concluded I had experienced a stroke from a dissection of the carotid artery. By this time, it was too late to give me the clot busting drug. After questioning by the Neurologist, he surmised of the likely cause of my stroke. I cannot discuss the likely reasons for the damaged carotid artery due to legal constraints.
I received excellent treatment, care and initial physiotherapy while at St. Michaels. 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.
After a month in hospital, I transferred to the EW Bickle Rehab Centre, Toronto for low tolerance physiotherapy.
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.
I received excellent physiotherapy at TRI. My goal was to walk with a quad cane so I could walk my daughter down the aisle in September at her wedding. This goal was met. The TRI kept me for one extra week to allow for modifications at my house.
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 believe that discharge protocols have improved significantly since 2010 at this outpatient facility in Whitby, Ontario.
My stroke took place at the young age of 55. I was basically forced into early retirement at 55 and lost the best earning years of my career, ultimately impacting CPP in retirement.
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 the 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.
My doctor recommended a private physiotherapy clinic to secure neurological physiotherapy. I am no longer attending this clinic as their staff turnover is too high. I now attend the Whitby Abilities Centre with a private trainer to use their equipment.
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. Again, 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 Act 2016” 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.
In 2023 I was appointed to the Durham Region Accessibility Advisory Committee and Durham Transit Advisory Committee (volunteer positions) where I feel I can be of assistance with my professional background and newly gained experience in accessibility.
My 11 grandchildren help me to remain positive as I try to be the best grandfather for them. I have a very special relationship with my grandchildren.
A Grade 12 student from Oshawa, Ont. has written a Paper about my stroke experience and journey.
My physical recovery has been limited but fortunately my cognitive function was not 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 Alberta and New Brunswick has one of the best provincial post-Stroke recovery 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.
After 12 years I feel very comfortable with myself and life. I am very fortunate to have a loving wife who has totally accepted our situation. Prior to the pandemic we were spending two winter months in Florida in a rental unit of a senior’s community. Travelling after a stroke is still possible with good prior planning. After my stroke we have flown to Calgary on two separate occasions for family weddings and no issues. Hopefully our travelling will return after the pandemic has passed.
Potential and sometimes limited stroke recovery is possible if you work at it every day. Now 13 years later I feel that my 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.
Also consider attending the Whitby Abilities Centre at 1 Jim Flaherty Street, Whitby, Ontario where they have Programs to help recovering stroke patients.
I am the Executive Secretary of the Stroke Survivors Advocacy Group of Canada and continue to advocate for fair and equitable post-stroke recovery services funded by our provincial healthcare systems.
Jim McEwen, B.Eng. retired Civil Engineer, 68-year-old stroke survivor
tel: 905 419 8889 (PM & EVENINGS ONLY)