Workshop participants heard personal stroke stories, hopes for research

John and Briah

John MacDonald spent his 42nd birthday in a Halifax hospital after having a major stroke — 10 months after his father died of a stroke in a room just four doors down the hall. “It was really horrific. I thought I was a healthy person. I thought stroke was an old person’s illness,” he told SPiN participants. “That wasn’t me.”

When he regained consciousness, John said his “obituary had been written. The burial plot was ready to go. But I came through.” He spent the next three months in hospital, relearning how to move, speak and eat, and a full year as an outpatient at the local rehabilitation hospital, where he received physiotherapy and occupational therapy four times a week. 

As part of the SPiN workshop for stroke recovery research trainees, stroke survivors John MacDonald, a Halifax marketing manager, and Sobhan Chowdhury, an Armed Forces engineer from Deep River, ON, shared their stories to provide perspective and to demonstrate the importance of research. Two things were made very clear. Stroke can happen to anyone, regardless of age, and recovery is possible — but it requires a team and lots of support from family, friends and employers.

John was in a wheelchair with “a home to pay for and a child to feed” when he began his year-long recovery journey. “My goal was to get back to work.” He’s thankful to his medical team, to his great boss, and for a gradual return-to-work plan that helped him regain his life.  “Right now I feel like I’m healthy. I go to the gym all the time. I do a lot of cycling.” But he knows that stroke is unpredictable.

Sobhan Chowdhury, 54, a professional engineer with the Canadian Armed Forces, also had a family history of stroke. Both parents and a brother died of stroke. When symptoms first appeared in April 2020, he rushed to the hospital in his small town of Deep River, ON, to seek treatment. “I had to convince the doctor there was something wrong” and there were delays in getting transferred to the nearest stroke centre almost an hour away. Sobhan said the emergency team tried unsuccessfully that night to connect through video conference with a stroke neurologist in a larger centre and he was “left in a hospital bed without any treatment. The stroke continued to do damage.”

The result was a long recovery during the outset of the Covid-19 pandemic, six weeks in in-patient rehabilitation, six weeks in community rehabilitation and a return home to his small town with “limited rehabilitation opportunities.” His family — wife Maria and children Imran, 16, Ibrahim, 15, and Tasneem, 9 — snapped into action after receiving advice from the PTs and OTs who were overseeing his care. “It was the beginning of the pandemic. Our town had only one physiotherapist.” His sons watched YouTube videos to learn exercises and they helped him with stretching every day for the next few months. His young daughter helped him around the house and made equipment for his therapy. Sobhan’s sister Khadiza came twice a day to do an hour of therapy with him.

Sobhan gets emotional when he describes the gratitude he feels for his loved-ones. “I realized that one of the most important parts of the rehabilitation journey is the support of family.” In January 2021, Sobhan moved to Toronto to continue his rehabilitation at Sunnybrook, where he has participated in CPSR’s FLOW Trial, the HIIT program, MyndMove therapy at the Rocket Clinic and lower-extremity rehabilitation.

For SPiN participants, these moving moving and insightful stories put real faces on the disease of stroke.