Featuring Ron LaCombe, stroke patient advocate and ONDRI PCAC member
“We’re going to prevent the next stroke and see about getting you better.”
Those words, uttered by Dr. Richard Swartz, are still fresh in Ron LaCombe’s mind, 10 years after suffering a stroke. His journey landed him at Sunnybrook Health Science Centre in Toronto, where Dr. Swartz was the on-call stroke neurologist – one he still calls ‘my doctor,’ today.
Lead up to the big event
Ron’s own father had suffered a stroke 20 years prior, which started his health decline. Ron was determined to learn from this experience.
He is not a guy to complain. He had put up with many symptoms over time – severe headaches, numbness, slurred speech, and vision issues – but just got on with his life, not wanting to create a fuss.
It was only when things reached a boiling point, and Ron found himself in a doctor’s office, that he was told he had suffered a stroke, which was likely preceded by dozens of mini strokes in the weeks prior.
“After watching my dad suffer the effects of stroke, I was prepared for the worst, but determined to do what I could to thrive, if possible,” said Ron. “My journey led me to realize that things had improved so much since my dad’s stroke; that research had led to earlier diagnosis, better treatments, it was all very inspiring,” he continued.
Life after stroke
Ron’s own research – along with a suggestion by his doctor – led him to get out of his comfort zone, and go out and meet others like himself, with an eye to share and help.
He started volunteering with March of Dimes Canada’s ‘Peers Fostering Hope’ program, where he imparted advice and hope; along with participating on the board of the Toronto Stroke Network, as a patient advisor. He also signed up to participate in research, to learn more and help future generations.
Beyond the stroke world to ONDRI
Ron first heard about ONDRI through Dr. Swartz, who is co-lead of the cross-disease research initiative. ONDRI is studying stroke, along with four neurodegenerative diseases*, all of which can lead to dementia symptoms.
Post stroke, many people experience cognitive impairment; in fact, the effects of stroke are known to unmask symptoms that may be caused by other diseases, which can be present at the same time.
Ron decided to participate in the HANDD-ONT study, ONDRI’s home- and community-based study. This was a positive experience, where Ron enjoyed reviewing his personalized health and activity report with ONDRI study coordinators, along with learning more about the research goals and objectives and providing his feedback on the experience.
This extensive interaction with the research team led to Ron being invited to join ONDRI’s Patient & Community Advisory Committee (PCAC), where he provides insights from the lived experience, interacts with others and learns more about the ongoing research and broader activities.
He wrote the book about living with stroke
In 2021 Ron published a book called “Not Your Dad’s Stroke,” as a way to help others going through what he went through and provide hope. He also stays up to date on new research developments and therapeutic approaches by reading as much as he can. Ron maintains a blog to share his experience and knowledge and offer support for patients and families: www.strokerecoverysupport.com.
“I am proud to call Ron a member of our ONDRI community,” said Dr. Swartz. “He has done so much good work as a guide and advocate in the stroke world. Having that lived experience of stroke among our other PCAC committee members really helps us focus on what’s important, doing all we can to improve people’s lives, while continuing the scientific discovery work,” he continued.