Bryce Perry’s grandmother passed away just before his 40th birthday. She was 83-years-old, and had been diagnosed with Parkinson’s 10 years earlier. Through her experience, he knew the disease well. When a noticeable tremor appeared in his hand six months later his mind quickly went to Parkinson’s. Could this be? he remembers thinking, before briefly pushing off the thought and hoping it would go away.
After two years, the tremor and some other challenges could no longer be ignored. He booked an appointment with his family doctor to discuss things. In that first appointment he discussed his symptoms with his family doctor and began a battery of referrals to investigate other issues. After ruling out carpel tunnel, a more common challenge for young men in the workforce, and going for an MRI, a catscan, and a variety of other tests he was finally referred to a neurologist.
“At this point, it still wasn’t really bothering me. It was just a twitch, but after all that unknown I just wanted to know what it was,” he recalled as he prepared for a meeting with his neurologist. Given his familiarity with Parkinson’s, Bryce went back to that first thought when the tremor appeared and suggested at that appointment that it could be Parkinson’s.
After a discussion about how Michael J. Fox’s diagnosis had every young man with a similar ailment thinking it was Parkinson’s disease and ruling out heredity as a factor, Bryce left the appointment without a diagnosis. “I think he thought it was just in my mind,” he said when thinking back to the discussion.
After that meeting, maybe Bryce did too. It took some time and the appearance of new symptoms (waking in the middle of the night with a restless leg and feeling like he was three times his age when trying to get out of bed in the morning) for him to finally return to his family doctor to discuss things again. Having lost his confidence in understanding what his body was going through, Bryce was shaken and almost didn’t pursue a diagnosis. After a referral, this time to a Movement Disorder Specialist based in Winnipeg, he spent 10 minutes with a new doctor before being told he had Parkinson’s.
Immediately, Bryce felt what he terms a weird mix of relief and validation before the all-too-common, okay… so now what does this mean.
He began treatment right away but admitted that it took more than five years to adjust to his diagnosis and shake off the feeling that his future was going to be limited. That feeling was tough for a professional motivational speaker and a glass-half-full kind of guy. Eventually, he realized that after five years while his symptoms had progressed, he was managing. At that time, Bryce “snapped out of it”. He began speaking again, reached out to his network, and started sharing his journey with Parkinson’s.
In 2018 he hosted a golf tournament in support of Parkinson Canada and planned for his closing speech to be all about his grandmother’s experience, unsure that he wanted to reveal his own connection. He had a speech prepared that went out the window when he was in front of the room.
“I ditched it. I decided in that moment that I wanted to make this my coming out moment. I didn’t want to hide it anymore. I said, this is what Parkinson’s means to me… because I have Parkinson’s And it felt great. There were 300 people there and every one of them came to speak to me and thank me for my courage, share their connection to Parkinson’s, and otherwise show support. Looking back, I wish I’d done it sooner.”
While not everyone has a positive coming out, Bryce is like many who in that moment realized that what he’d been afraid of wasn’t his reality and that a community of support quickly opened up that heled him focus on living well with Parkinson’s. Now, he’s back on the speaking tour and launched a new YouTube channel called Doing Life Today. The channel features general messages of positivity and several Parkinson specific pieces, including a stirring story about the day he was diagnosed. Talking about his experience helps Bryce put his Parkinson’s in perspective and hopes it helps others as well. The struggle in receiving a diagnosis and the long period of darkness he endured after diagnosis are things that he hopes will change for others by talking openly about them.
Bryce’s story is not uncommon. The reality is that the common stigma that Parkinson’s is an older person’s disease can impact healthcare professionals as well. That’s why we’ve focused the conversation this month on improving diagnostic options and reducing wait times for access to qualified specialists across the country.