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CPSR research participants share wisdom with trainees

By sharing their stories with Canadian Partnership for Stroke Recovery trainees, four Vancouver stroke survivors —  Warren, Marco, May and Mark — wanted young researchers to meet the face of stroke – and to realize that it changes lives profoundly.

The four spoke during a lunchtime seminar the 2016 SPiN (Stroke Program in Neurorecovery) course recently and highlighted the fact that stroke can happen at any age and that research is crucial to improving recovery.

May Siew was a busy HR consultant when she experienced a stroke at age 45. “The paramedics didn’t think I had a stroke because I was so young,” she told CPSR trainees. “I was in denial the entire time. I just wanted to finish my very bad week at work.”

But she soon discovered “my entire identity and life changed because of that one event.”

After her stroke, May, who has a 10-year-old daughter and 14-year-old son, participated in the CPSR’s DOSE (Determining Optimal post-Stroke Exercise) Trial at GF Strong Rehabilitation Centre and began to rebuild her life. “DOSE got me up walking” and out of hospital. She says she also learned that, despite what she initially believed to be true, recovery doesn’t just happen in the first few months after stroke. “I could not move my arm until eight months after my stroke.”

CPSR researchers involved in the DOSE trial are calculating the dose of exercise to give stroke patients and the intensity required to achieve the best possible results. The 75-patient study involves two sites in Calgary, four sites in Vancouver and one site in Toronto. In each therapy session, patients are pushed to work as hard as possible.

Mark Nah, 49, recalled vividly his stroke on Friday the 13th of May 2016. He described a stressful work life and then waking one morning to poor balance and “shaky steering” when he got behind the wheel of his car. When he arrived at work, Mark said he sounded drunk. His colleagues left him alone. “I googled my symptoms and it said I had a stroke. We called 9-1-1.” By the time he got to hospital his symptoms were worsening and “the first few days were frightening.” A self-described “intense person” and “perfectionist”, Mark was anxious to start rehab and, as soon as he could, he volunteered for the DOSE trial. He learned “the more I do, the more I gain” and “as long as the patient has hope there is nothing they cannot do.” Mark has two sons, ages 12 and 16.

Marco Chorbajian, 69, a former tennis player and coach, said he wanted to die for the first few weeks after his stroke. “Then my five-year-old grandson came to see me in the hospital and he said ‘Grandpa, I love you’ and, after that, I said I would have to live for him. That was a changing moment for me.”

Warren Walker, 63, was 49 when he had a stroke. He blames an unhealthy diet and sedentary lifestyle. He emphasized the importance of good nutrition in stroke prevention.

And what other advice did these patients have for future research directions?

May and Mark called for more research into post-stroke pain, regaining use of the upper limbs, and identifying a biomarker for recovery. “That would be the golden ticket!”

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