Thirteen years ago, a stroke changed Ron Reddam’s life. A scientist, husband and father, Ron, then age 51, collapsed one late-July evening after a blood clot travelled to the right frontal lobe of his brain, leaving him paralyzed on the left side.

After his stroke, the Etobicoke, Ontario, man lost his job, his driver’s licence, and his independence. And, on top of his physical disability, he experienced a post-stroke condition called pseudobulbar affect, or emotional incontinence, a type of neurological disorder characterized by sudden, uncontrollable and inappropriate episodes or crying or laughing. 

“I searched for peer support groups,” Ron says. And, eventually he came across an excellent six-month cognitive therapy program, covered by his provincial health-care plan. When the program ended, Ron was again on his own, but not prepared to give up.

In the spring of 2024, he found a 10-week online CanStroke clinical trial called ICBT — Internet-delivered Cognitive Behavioural Therapy (CBT) for Persons with Stroke. He contacted one of the research leaders, Dr. Swati Mehta at Lawson Health Research Institute in London, ON, and “I asked to join as a refresher to what I learned earlier,” he says.

Ron was not new to the world of clinical trials. Because long-term health-care coverage for stroke rehabilitation is inaccessible for most people between ages 18 and 65, Ron uses his scientific sleuthing skills to identify clinical trials to improve his stroke recovery. Even years after a stroke, the benefits are huge: “Participants get the latest therapy free,” he says. Not only that, involvement in research helps others.

The study “was everything I expected,” says Ron. After taking part in iCBT, he joined the study team as a volunteer, providing the perspective of someone with lived experience, and suggesting adjustments for aphasia and neurodiversity. 

The ICBT study targets symptoms of depression and anxiety, feelings of loss and hopelessness. Through CBT, patients learn to recognize and challenge unhelpful thoughts and behaviours. Offering this service over the Internet provides the potential to reach people in rural and remote areas who may not otherwise have access to treatment.

“The application of this program can be expanded to other areas of health care as home and community care become the next level of health care,” Ron says.

He should know. After doing more than 100 studies, Ron won an international award for volunteering in research. “I constantly search for new studies to pass on to fellow stroke survivors in my groups. I search different organizations, hospitals, and universities for studies of interest to me and other survivors.”

In addition to his volunteer work with support groups and clinical trials, Ron has been a patient and family advisor at hospitals, research organizations, and health charities, and was involved in the formation of the Survivors Advocacy Group of Canada.

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Stroke crept up slowly on Shirley Binder, a retired Surrey, B.C., woman and part-time Avon representative. 

It began one evening with a numb left hand, which she attributed to too much time spent grasping her phone. The next morning, the numb hand was accompanied by a loose arm. Then, she had difficulty walking.

Shirley was in the process of calling B.C.’s telehealth service to ask about her symptoms when her son intervened and dialled 9-1-1. Because she was on blood thinners, Shirley was not a candidate for a clot-busting drug when she got to the hospital, but she underwent a myriad of tests to try to determine the cause of the stroke. 

Thankfully, within two weeks, Shirley’s symptoms waned as her brain recovered and she received therapy. The mobility in her hand, arm and leg gradually improved. She was discharged home on Christmas Eve and waited a couple of months to get further rehabilitation.

“I was just determined I would recover,” she says. To regain her strength, Shirley walked as much as she could and did the hand and foot exercises provided by hospital rehabilitation specialists. 

Last year, she heard about the Virtual – Physical Activity Seated Exercise (V-PASE) trial, led by Dr. Janice Eng at the University of British Columbia and conducted in a number of provinces across Canada. Shirley jumped at the chance to join, partly because she wanted to “be able to help the next person who has a stroke.”

V-PASE has the potential to improve balance, mobility, muscle strength, quality of life, and heart health. In addition, the study delivers online therapy to people who live in rural and remote communities and may not otherwise be able to access further stroke rehabilitation.

“It was excellent,” says Shirley, age 80. “The exercise program was fantastic. I got my heart rate up. I couldn’t believe it.” She participated three times a week by Zoom, working with a therapist who ran her through a series of seated exercises. She said she lost weight and felt better, both physically and mentally.

“I’d love to do it again,” she adds. “I found the people, especially Dr. Paul Mackie who ran the study, were great to work with and very accommodating. I hope more people who have experienced a stroke will be able to take part in a study like this.”

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Until, days before the planned departure, a stroke changed everything.

Signs of stroke began slowly. Her right leg felt unhinged. The 63-year-old Halifax woman went to the hospital and, although she felt no pain, received a diagnosis of sciatica, or nerve pain.

The next day, a Monday, she could barely walk. By Tuesday, she was back at the emergency department. Again, she returned home – no CT scan, no MRI, but with a plan to consult a neurologist.

The week dragged on. Sometimes she could put weight on her leg and sometimes she couldn’t. When she awoke on Sunday morning – a week to the day after her first hospital visit – she was nauseated and perspiring. She called 9-1-1.

“It was too late to get a clot-busting drug” to reverse the stroke symptoms at the hospital, but she was put on blood thinners. “Women are underdiagnosed, not listened to, and present differently,” she says.

Debbie moved from acute care to an inpatient stroke rehabilitation unit and stayed there until the end of October.

While in the inpatient rehab unit, Debbie was recruited to participate in CPSR’s FLOW trial  — the first national trial on the CanStroke Recovery Trials platform. It combines intensive rehabilitation therapy with the drug fluoxetine in an effort to enhance post-stroke recovery.

For Debbie, her participation meant an additional 12 weeks of therapy she would not have had otherwise.

“I’ve really enjoyed the FLOW,” Debbie says. “It’s hard and I’m exhausted when I’m done, but it’s good.”

For her, there is no question that extra therapy provided from her involvement in CanStroke Recovery Trials put her back on the road to recovery – and rekindling her camping plans.

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