I’ve written a few posts recently about people coming out of the Parkinson’s closet. Since then, I’ve come across even more articles describing how individual Parkies take this step. Let’s review of three of them:
1.
Jim Carnett just wrote in the Los Angeles Times about how he crossed the barrier between not talking about PD and being open about it. He relates that in July, 2006, he and his wife took a vacation to Switzerland, just a few months after he was diagnosed. It was meant to be a respite from the stress he was going through now that he had PD (he was also dealing with his father, who had Parkinson’s, too), and the trip was an organized tour. They made friends with another couple on the tour – and Jim suspected the husband, Rob, also had PD.
“Why don’t you ask him?” Jim’s wife said.
But Jim was too embarrassed, preferring the comfort of the closet.
On the last day of the tour, everyone boarded a bus for a 90 minute ride to the airport. At this point, Jim’s wife took matters in her own hands. She sat with the other couple for a few minutes and found out that Rob did indeed have PD. Then she outed her husband. So Rob ended up sitting next to Jim for the entire bus ride, and they talked Parkinson’s, Parkinson’s, Parkinson’s.
To wit:
We conversed non-stop for the next 90 minutes, and for another 15 in front of the terminal. Rob was the first Parkinson’s patient — except for my dad — I’d ever spoken to. He provided me with a wealth of clinical and anecdotal information.
He reassured me, which is what I needed most. I think often of him now and am grateful for his generosity. …
By the way, I’ve gotten over my skittishness about talking to others about Parkinson’s. I openly share my story.
I have Rob to thank for that.
And we have Jim to thank for writing this article!
2.
The New York Times published a few months ago a first person account – not of someone describing how he/she revealed to others his/her Parkinson’s diagnosis – rather, the story is told by Angela Robb, a non-Parkie woman who met a man online (in a chat room – this was the 1990s) whom she became interested in because they shared so many interests and he made her laugh a lot.
The online chatting led to phone calls. During one of the calls, the man (named Karl) revealed he had PD. The relationship continued to blossom, and they got married.
Angela writes:
Fast forward to today, twenty-two years later. When I introduce myself at Parkinson’s events or support groups, I make sure to say that I met Karl after his diagnosis. I feel it is important for fellow care partners to know that my introduction to Parkinson’s may be unlike theirs. Parkinson’s did not enter my life via a shocking diagnosis in a doctor’s office. Parkinson’s entered my life because I love a wonderful human being who just happens to be living with this disease. …
I wasn’t about to give up a life with Karl because of Parkinson’s. Does Parkinson’s make life difficult sometimes? Absolutely! Parkinson’s can be a total disrupter – wrecking plans to take a walk or a hike, enjoying a meal with friends, or changes plans for a vacation. But, here’s where adaptation comes in, and turns Parkinson’s into a teacher. Instead of taking a walk or a hike right now, we might drive around taking pictures at overlooks until the medication kicks in. We found that the friends who couldn’t cope with the dyskinesias at dinner lead us to new friends who didn’t mind the dyskinesias and encouraged us to go out more. We modified our vacation plans to include off-times, and we found ways to make accessing vacation sights easier, such as taking cruises
Congratulations, Angela and Karl!
3.
Bret Parker has had PD for a long time. What’s special are two things: how he came out, and what he’s doing now.
The latter first: as described in this article in the Jewish Standard, while many Parkies fight PD by choosing to run in marathons, Bret is probably the only person who ran seven marathons…in seven days…on seven different continents! He must be one of the healthiest people in the world, and I hope he traveled at least in business class on all those plane trips!
Here’s his coming out story.
He was diagnosed at a young age (39), and kept the disease “hidden” for five years. He says:
“But then, after five years, I outed myself,” he said. At first, he’d just tell friends, one at a time. “It was exhausting,” he said. “They would cry. I would cry. But I had to tell people.” Not only were his symptoms becoming harder to hide — again, like a pregnancy — but “the stress of hiding them makes them worse,” he said.
Then Mr. Parker decided to switch from the retail to the wholesale model. In a blog post published on Forbes in 2012, he went entirely public with his condition, explaining, in very personal terms, why he’d chosen to hide it, and why he’d decided to stop hiding. Among other reasons, he said, once he no longer hides, he can do the thing that he feels most driven to do — work to raise money to understand and fight Parkinson’s.
Here’s the link to his Forbes coming-out blog: click! It’s a terrific piece of writing, and I’ll paste the first three paragraphs here:
When my wife was diagnosed with breast cancer, we told everyone. She is a relatively private person, but we blogged about her surgeries and shared the ups and downs with friends and family. What most people don’t know is that I have been struggling to keep a secret about my own medical condition.
Part of me has wanted to keep it to myself – that conservative voice in my head that wants to avoid being subjected to potential prejudice or pity. Another part of me has wanted to reveal it, the part that wants to be open and sharing with friends, and to fundraise for research for a cure.
It has been five years since I was diagnosed and virtually no one knows. Five years of hiding increasingly noticeable hand and leg tremors, a slight limp, and slowness and stiffness of movement. Each year the pressure mounts and culminates in an end-of-year question: Is this the year I open up about having Parkinson’s Disease?
That’s such a great point Bret makes: why are people scared to reveal their PD diagnosis, when it’s so easy to come out about having cancer or most other diseases?
Here are his two final paragraphs, also great:
By keeping a secret I have accomplished nothing. Not only that, I have squandered opportunity: opportunity to deepen relationships with friends and family; opportunity to rally support for Parkinson’s research; opportunity to confront my fears and educate people; and opportunity to help others like me who have been affected by this disease or by other diseases that they feel they must endure in silence.
The answer is finally clear. This is the year to leave my secret behind — to literally run past my fears, my doubts and my hesitation. This is my moment and now everyone knows.
All in all, stirring words that I hope inspire more people to “take the plunge.”
To read some of my other posts about coming out with PD, click on the following:
Thanks, Bruce, for this post. Definitely food for serious thought about my own hesitation to share!