“It was the best thing I ever did” is how Roberta describes attending a Parkinson Canada workshop shortly after she was diagnosed with Parkinson’s.
Like it is for many, Roberta’s journey to a diagnosis was not straightforward. Multiple trips to her GP, two different neurologists, waiting many months between appointments and a misdiagnosis, before she was finally told that she had Parkinson’s disease.
And having a diagnosis was only the beginning. There was so much uncertainty that followed. But she knew there was no going back. It was undeniable.
Within weeks after her diagnosis, Roberta attended a workshop hosted by Parkinson Canada. It was there that she learned about Movement Disorder Clinics. Roberta was able to take the information she gained at the workshop and talk to her neurologist. And for the past two years, Roberta has been seeing a movement disorder specialist every six months.
In those two years, Roberta became a Parkinson Canada volunteer Ambassador. A community of more than 200 people passionate about raising the voice of Parkinson’s in their communities. As an Ambassador, she meets with local members of parliament to discuss critical issues. She visits doctors’ offices and hospitals to distribute material that health care professionals can use to support people affected by Parkinson’s and help increase awareness about the realities of living with the disease.
Unfortunately, because of the COVID-19 pandemic, Roberta has had to adjust as she has been unable to carry out her Ambassador activities in person. Perhaps when awareness is needed most. As someone living with Parkinson’s, Roberta has experienced the effects that increased fear and uncertainty has on people living with the disease. Added stress is never good for people living with Parkinson’s.
She hasn’t felt safe going to the gym or pool, for much needed exercise. Her movement disorder appointment in the Spring took place over the phone, but she felt it just wasn’t as effective as attending in-person. Returning to work required a lot of thought and precaution to keep her safe and healthy.
Fortunately, Roberta has been able to “bubble” with some her grandchildren who live nearby. Two even lived with her briefly, as their parents are front line workers. She has been able to visit with the others virtually. Being a grandma is her greatest joy!
Like so many charitable organizations, COVID-19 has impacted Parkinson Canada’s ability to provide services and support for those in need. Ambassadors, like Roberta, are unable to be out in their communities. Support groups and workshops, like the one Roberta attended when she was first diagnosed, have had to be adapted to a virtual setting. However, this change has meant that for some, location and mobility are no longer barriers to accessing peer support. Learn more about how you can support Parkinson Canada sharing information for people newly diagnosed with Parkinson’s, support groups and other programs for people like Roberta, as well as the research that’s providing hope for better treatments and hopefully someday a cure.