Andra survived a major stroke in her early 50s. She continues her progress to full mobility, but she’s also keen to help others by taking part in research. She was excited to participate in a study using the KINARM, a game-changing robotic technology used in all three Kingston academic research hospitals to assess the neurological impact of a wide range of injuries and diseases. The reams of data produced by the KINARM are used to help researchers and clinicians better understand the effects of brain injuries such as stroke.
Can you tell us a bit about your family and your family’s health story?
I had my first stroke when I was 49. It was a mini-stroke (or TIA) and I lost the use of my left arm and hand for about a month. Two years and two months later, I had a major stroke. I was at home and I was feeling tired, nauseous, weak, and dizzy. I was stumbling and my left foot felt heavy, but light at the same time. I realized this was not normal. My daughter-drove me to hospital. While I was waiting in the ER, I didn’t have any of the classic stroke symptoms – my face wasn’t drooping, I didn’t have trouble speaking, I never really felt anything. But when I woke up the next day, I had lost all my mobility on my left side.
I was in Kingston Health Sciences Centre’s Kingston General Hospital for two weeks and then six weeks in rehab at Providence Care. After my TIA, my stroke doctor connected me with the KINARM. It’s a robotic system that assesses how brain injuries affect our ability to move and function. After my second stroke I started doing more testing with the KINARM group. I’d go every six months or so, and I’ve done it for the last couple of years.
The KINARM collects detailed data about how the stroke has affected me, and how I’m gradually recovering. This information is valuable to researchers because I’m younger than the average stroke patient. Everyone’s stroke is different, and everyone recovers differently, so I’m hoping the information that they’re getting from me will help them better understand stroke.
What does health research mean to you?
Research is how doctors are going to find new ways to prevent or treat strokes. When I was in hospital, I was a lot younger than the other stroke patients, but they were up and walking while I was staggering around like a toddler. I’m hoping that the KINARM can gather enough data from me to tell them why it takes a 50-year-old longer to recover than an 80-year-old. That’s what research is about – it can determine the hows and whys.
How can the patient voice support, improve or empower health research?
The more patients share their experiences, the more we can all learn. It’s about getting involved, because stroke patients get a lot more from people who have gone through it. I give talks at our hospitals and I use social media to share stories.
Why does health research matter to you and your family?
I’m thankful for the health care I received, because without it I wouldn’t be here today. It takes patients like me, and others, participating in research, providing feedback, it’s how we learn. It’s important to me to do what I can and give back, because that could help someone down the road. If my test results are helping in this research, I’m proud to be a part of it.
How does health research contribute to a healthier, wealthier, smarter Ontario?
Research is important and we can all do our part by taking a little bit of effort to help researchers find out the “whys”, like why do strokes happen to young people, and why does it take some of us longer to recover than others? How can we change this? You do that by getting involved.
Top photo by M. Manor, Kingston Health Sciences Centre; KINARM photo by Ethan Heming, BKIN Technologies
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Ontario research hospitals, including Kingston Health Sciences Centre, make our province healthier, wealthier and smarter. Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. Learn more about how hospital-based research makes Ontario healthier, wealthier and smarter.