Sharing Parkinson’s diagnosis is next step in dealing with disease
On the day before my 36th birthday I sat in my car in a nondescript medical plaza parking lot, struggling to process the three words that would forever change my life. “You have Parkinson’s.” That was a frightening day, but six years later I’m doing the one thing that’s always frightened me more than the disease itself: Telling the world.
Sure, my wife and I almost immediately told our closest family members and friends, but for the better part of these six years, the number of people who knew I had Parkinson’s was in the single digits.
That’s because it’s taken this long for me to wrap my head around the diagnosis and work up the courage to live openly with the disease.
At the time of diagnosis, I was a newlywed training for a half marathon. Late in my training runs I started having odd stiffness in my left leg — something I never took overly seriously.
Fairly confident it was some sort of knee problem, I saw an orthopedic specialist. When his prescribed regimen of cortisone shots and physical therapy didn’t help, I went to a neurologist.
I had read a few things that made me wonder if something neurological was possible, but I was really going just to rule things out.
I even told my wife not to come with me because, “you know how first appointments with new doctors go. It’s just paperwork and ordering tests.”
I couldn’t have been more wrong.
The neurologist saw me take about eight steps and diagnosed me on the spot, a diagnosis later affirmed by a brain scan. “You have Parkinson’s.” And for the past six years I’ve done everything I could to hide it.
But now the symptoms are more pronounced than ever.
The tremors in my left hand and left leg are coming with greater intensity and frequency.
There is now an occasional tremor in my jaw.
Side effects from muchneeded medications have resulted in my head sometimes making rolling, uncontrolled movements.
It’s time to be honest with myself, my friends and my colleagues. I can’t — and don’t want to — hide this anymore.
I asked Anissa Mitchell, a clinical social worker and Parkinson Outreach Manager
“I think your message is that, yes, we need to know what’s going on ... but that’s not what you want your life centered on.” Anissa Mitchell, Parkinson Outreach Manager at Florida Hospital
at Florida Hospital, for advice on how to share this. She runs a Young-Onset Parkinson’s support group that I’ve been a part of for a few years now.
She gave me a very useful perspective.
“‘I have Parkinson’s but I’m still Todd,’” Mitchell said. “I think your message is that, yes, we need to know what’s going on just so that we’re not tiptoeing on eggshells around each other and it’s not weird and uncomfortable. But that’s not what you want your life centered on.”
It’s true — I’m afraid that people will define me by my disease, even though Parkinson’s isn’t a terminal condition. You die with Parkinson’s, not from Parkinson’s.
Dr. Rachel Dolhun, a Movement Disorder Specialist and the Vice President of Medical Communications at the Michael J. Fox Foundation, emphasized the overall benefits of removing the secrecy of my condition from my life.
“When you take away the secrecy and you allow yourself to participate in the community and connect with people on a broader and more open level, you start to see how those connections allow you to live so much better with Parkinson’s,” Dolhun said.
That’s exactly what I’m looking for. It’s time to end this sixyear secret.
There’s a great, active Parkinson’s community in Central Florida, and I want to have a role in it. That can only happen if I start being honest with everyone in my life.
For my first baby steps, I decided that instead of having this conversation 25 times, I would have it once with 25 people.
Surrounded by friends, coworkers and plenty of bloody marys, I unloaded my burden.
As I said the three frightening words, shame and secrecy were replaced by love and support. “I have Parkinson’s.” But I’m still Todd. Todd Stewart is Content Director/Things To Do at the Orlando Sentinel. He can be reached at tstewart @orlandosentinel.com