Parkinson’s is the fastest growing neurological disease in the world. No matter at what age a person is diagnosed, receiving the news that you have Parkinson’s is frightening and life-changing. The average wait time to see a specialist for diagnosis of Parkinson’s in Canada is 11 months and in some regions the wait is 2+ years. Here is the story of uncertainly and discovery of one of the 100,000 Canadians living with Parkinson’s today. No two people experience Parkinson’s the same way and early and accurate diagnosis are critical for effective treatment and to maintain quality of life.
Roberta Wilson-Garrett first noticed a tingling in one arm and thought little of it. The tingling didn’t get better and in fact, got worse and became a tremor. Her family doctor referred her to a neurologist. She waited six stressful months to see him, not knowing what was wrong and whether or not she could be helped.
“It’s certainly not because physicians don’t want to see people but the problem is we just don’t have enough physicians and this is particularly problematic in Parkinson’s because the condition gets more and more complex and more difficult to treat as time goes on,” says Dr. Silke Cresswell-Appel, Associate Professor for Medicine/Neurology at the University of British Columbia (UBC) and a member of Parkinson Canada’s Scientific Advisory Council.
Roberta spent hours on the internet trying to find answers on her own. At her appointment, the neurologist told her not to worry—it wasn’t Parkinson’s.
Shortly after, Roberta developed a tremor in her jaw and started having trouble swallowing. She went into panic mode, desperate for answers—and a diagnosis. Her new neurologist diagnosed her with Parkinson’s and so began her treatment. She also attended a full-day Parkinson Canada workshop, where she learned about getting a referral to a Movement Disorders Clinic—something she didn’t know existed.
“After everything I’d been through, I had no real expectations. As it turned out, reaching out to Parkinson Canada and attending the workshop was the best thing I could have done,” says Roberta. “Thankfully I have a support system now. I’m actually very lucky. I know that there are other Canadians who don’t have access to such a clinic because of where they live in the country.”
Parkinson Canada continues to fund promising research, and to advocate to reduce wait times for a diagnosis, and to provide the latest evidence-based resources for the Parkinson community.
Parkinson Canada sponsored a comprehensive new Canadian Guideline for Parkinson Disease, 2nd Edition, which provides practical guidance for physicians, allied health professionals, people with Parkinson’s and families on Parkinson’s disease management.
“In addition to specialist physicians, we need more nurses, and speech, occupational and physical therapists with training in this area, as well as appropriate palliative care for Parkinson patients,” says Dr. David Grimes, lead author of the Guideline and Division Head, Neurology, The Ottawa Hospital, University of Ottawa Brain and Mind Research Institute.
We are here to help—No Matter What
Call us today at 1 800 565 3000 or email info@parkinson.ca.