At 46, being diagnosed with Young Onset Parkinson’s Disease was not on my radar, but then again, who would expect that? When most people think of Parkinson’s, they don’t picture someone active and healthy in their 40s. I had to let go of many preconceptions and face the reality of this degenerative and progressive disease.
April is Parkinson’s Awareness Month, and I want to share my story to help broaden readers understanding of what Parkinson’s can look like, because it’s not always what you picture.
When you finally get a diagnosis after years of unexplained symptoms, there’s relief in having answers and in knowing it’s not something worse. Still, a PD diagnosis is a lot to take in. I’d had a tremor in my left arm and sometimes my leg for about two years. I also had digestive issues, frozen shoulder, and lower back pain — symptoms I chalked up to perimenopause. But perimenopause hadn’t even started for me yet, it all turned out to be Parkinson’s.
At first, I didn’t want my community, my work, or even many friends to know. I worried people would pity me or treat me differently, yet I was the same person I was the day before. What was changing most was I was grieving a future I had imagined — travelling and hiking through my 60s and 70s. Trying to keep this life-changing diagnosis hidden felt like blowing up a balloon inside a loosely stitched shirt. The seams were starting to pop.
Being vulnerable and open about what’s happening to me isn’t easy, but I’ve realized that it’s the first step to living fully and raising awareness. Parkinson’s doesn’t look the same for everyone. There are over 40 possible symptoms, and people with PD can be as young as in their 20s, 30s, 40s, 50s and beyond.
One of the first things my neurologist said to me was, “People don’t die from Parkinson’s — they die with it, and they die from the same things most people who live a full life die from.”
Yes, there are complications to be aware of, but most people with PD live long and full lives.
The internet can be overwhelming, but it also led me to a community of amazing people with PD who do everything from marathon running to CrossFit competitions, hiking mountains and travelling to new places. The common thread? Regular physical activity, especially moderate to intense exercise, is proven to help slow the progression of symptoms.
The image of Parkinson’s shouldn’t be limited to someone hunched over with a cane, shuffling and shaking. That’s not what Parkinson’s looks like for everyone. Many people with PD are walking, running, cycling, doing yoga or chair yoga, lifting weights, or just finding ways that work for them to keep moving. It’s a community built on resilience and grit.
I’ve seesawed between wanting to hide under the covers and wanting to shout out loud, to remind myself and others how foolish it is to assume we have endless time. The cliché is true: all we have is today. So, appreciate what your body and mind can do and use them.
When I stepped into the PD community, I saw people pushing back against this disease with strength and determination. They inspire me now, every day. It’s with that courage that I share my story with you.
Thanks to the local PD community, I’m now part of a group hosting West Kootenay Parkinson’s Awareness Day on Friday, April 11 at the Salmo Youth and Community Centre. There’ll be activities, trivia, info booths, and lunch (please preregister for lunch at the Salmo Community Resource Society). There’s also a local support group meeting monthly at the Colander in Trail (third Tuesday), plus online groups through the Parkinson’s Society of BC.
Let’s come together to learn more and raise awareness. Hope to see you there.
