I’m living with Parkinson’s. I’m 59 years young, and I never saw it coming. Not that long ago, I was a registered nurse. I was working in home care at a local health agency. I truly loved my job. I loved being able to support others in their time of need. I was living a full life, happily balancing work and family, and even starting to plan for a retirement chock-full of travel—and time enough to finally improve my knitting! Then came my Parkinson’s diagnosis.
I’d been getting slower at work, and was regularly working extended days at my own expense just to get through all of my tasks. My slowness was becoming a true impediment. I even started delegating tasks that required finer motor skills, like taking blood and doing injections and wound care.
Then I noticed occasional tremors in my left hand. Soon, I was dragging my left leg and the tremors were constant. My balance was affected too. My family doctor, colleagues and I all suspected Parkinson’s. That diagnosis was confirmed in 2016.
When my neurologist told me, I started to cry. I was so thankful for the box of tissues on her desk. I cried for all the things I would never do. I mourned the loss of my life as an active nurse and the happy retirement I was planning for myself.
I was able to access Parkinson Canada’s information and referral services. At a time when I was filled with uncertainty and fear, Parkinson Canada connected me with resources that helped me cope with my diagnosis and plan for my new life.
Like many others, I was in shock when I got my diagnosis. There were some very dark days that followed. The darkest was the day I could no longer provide direct care to my patients.
I felt that my deficits were making work harder, so I voluntarily underwent an assessment by an occupational therapist. But, when I shared the results with my employer, I was put on long-term disability.
My world came crashing down—again.
In that moment I couldn’t even begin to imagine what the future would hold.
What I was truly hoping for was that my workplace could be adapted for me. (See Parkinson Canada’s information sheet called Progression of Parkinson’s Disease and a new resource, At Ease. *)
I fell into oblivion. I tried to maintain connections with my former workplace, a few select nurses, but it’s hard when they’re busy working and you’re not.
I’ve become a volunteer for Parkinson Canada. In fact, I volunteer a lot. And it’s been just another source of support for me!
Volunteering helps me continue being of service in my community. I use my nursing background working with support groups, teaching ’Parkinson’s Disease 101’ sessions for newly diagnosed patients and their care partners, and ’Parkinson’s Disease 201’ sessions for nursing students and other health professionals to demystify Parkinson’s for them.
I never imagined I’d have Parkinson’s, but the fact is, I’m really not so special.
Right now, more than 25 Canadians are diagnosed every single day—and in the next ten years or so, it’s predicted that number will double. That means Parkinson’s is likely to affect each of us one way or another—every Canadian family will know someone with this disease.
That’s why research is so vitally important right now.
Through the Parkinson Canada Research Program, Canada’s best and brightest scientists can develop new medications and treatments that will improve the quality of life for people like me living with Parkinson’s.
And I’m certain that one day, research will unlock the key to cure this disease.
One day.
Hélène Deutsch, M.Sc., a clinical nurse herself living with Parkinson’s disease.
* Parkinson Canada has a new resource, designed for people with invisible disabilities, their employers and the transit commissions that transport them. To view the booklet ‘At Ease: A guide to improving accessibility in the workplace and on route for people with invisible disabilities’ online and to order your free copy, visit www.parkinson.ca/resources/educational-publications.
We are here to help—no matter what.
Be part of the solution—contact your nearest Parkinson Canada office today to find out more about volunteering, donating, and attending local events, support groups and conferences. Questions? Call us at 1 800 565 3000.