In the Parkinson's world, everyone's journey is different

At times the mental anguish of Parkinson’s Disease is more painful than the physical.

I was diagnosed with Parkinson’s Disease in the fall of 2012. My then-neurologist told me two things:

“It’ll be hard but it’s not going to kill you. You’ll most likely die if something else.”

Thanks for that uplifting message, but then he said something that resonated with me:

“Find yourself a good therapist. There will be changes in your life and how you react to things that you’ll need help dealing with.”

Man, was he right about that!

In the early days, I thought I needed a lot of information about the disease. I got every pamphlet possible from both the Parkinson’s Foundation and the Michael J. Fox Foundation. It was a lot of reading. It was information overload.

I was also invited to Parkinson’s symposiums. They were another opportunity to hear experts, get a free lunch and meet people with similar stories. It sure sounded good—until you realized many of the stories weren't similar at all—not even close. Then you had the vendors. At my last symposium, I met a guy who told me the advantages of Deep Brain Surgery. That’s the procedure where they cut into your head while you are awake. I know it works for many people, but that’s not something someone in the early stages of the disease needs to hear. I left the meeting depressed and in tears. It was a good thing my therapist is on retainer and speed dial.

But, here are some things I was told by many others in the Parkinson’s world. Every case is different—every journey is different. Intellectually it’s easy to understand. The reality —not as much.

To deal with this, I made a decision. I tried to keep away from those who looked like they were in the later stages of Parkinson’s. That's not easy to do when you're at an event like the Moving Day walk where there are many people in a variety of stages of the disease. I wasn't particularly proud of this but sometimes self-care takes precedence.

This came to a head at the 2023 walk. A woman was honored by the foundation for her fundraising work. It turns out we have a couple of friends in common and I wanted to meet her. When I introduced myself, she said she knew who I was and about our connections. We talked for a few minutes and when I had the chance to meet her husband, who was lying horizontal in a wheelchair, I begged off. Again, not my finest moment but also again—self-care.

But, something happened just a few weeks ago that changed my thinking—or at least reinforced everything I’ve known since the beginning of the journey. My niece’s mother died of Parkinson’s Disease. She was diagnosed a few years after me, but her case progressed at a much faster rate than mine. She also developed dementia—which is what caused her death. It became a close-to-home, real-life case of “everyone’s journey is not the same.” Hmm…having a therapist on retainer finally pays off big.

Then came last Saturday. It was the day of the annual Moving Day walk. It was an opportunity to put these thoughts into action. One of the people I went looking for was the woman I met last year. Surprisingly, I found her at the booth where my current neurologist was sitting. I went up to her, introduced myself again and we reconnected for a few minutes. I told her my story from last year and said I’d like to meet her husband. She introduced me to him and we chatted for about a minute. We both then moved on to the actual walk.

But first I had a quick talk with my neurologist. I told her what had just occurred. She told me that my reaction last year was normal. Plenty of her patients do and think the same way. She also again reminded me that not everyone’s journey with PD will be the same. I told her we could talk about this more when I see her in November and she can get paid for listening. She laughed and went off to walk with her husband.

It’s now ten days since this occurred. Later today, I’m going to go play Ping Pong in a group with other Parkinson’s patients. There will be people there in all different stages of the disease. I’m already thinking about how I’m going to deal with this. Sigh! Two steps forward—one step back. It never ends!