Part 1: The Road to Diagnosis (published in July 2024 issue of The YOPN Times)

My Parkinson’s journey started, as it often does, with a curiously twitchy finger. My immediate reaction, however, is embarrassing to admit: I held my right hand up to my husband and said quite glibly, “Look, Honey, I’ve got Parkinson’s!”

Seriously, I said that! I both cringe and chuckle when I think back on that moment. Karma is, as they say, a … well, we all know what they say about Karma!

Of course, I didn’t think I had Parkinson’s. That would be crazy! I was a healthy 47-year-old, the vice president of a small publishing firm, happily married with twin girls about to start college. Life was busy and exciting! Parkinson’s doesn’t happen to women my age – the twitchy finger was clearly stress-related.

Over the next few years, many seemingly unrelated issues started happening to my body, and I had an excuse for just about all of them: slowing down (well, I’m not getting any younger), stiffness in my right arm and shoulder (it’s all this computer work), tiny handwriting (it’s because I don’t write very often. It’s a lost art, you know.), insomnia and GI issues (happens to everyone!). The list goes on.

But there were other issues that I couldn’t ignore. The worst was that the toes on my right foot would curl painfully when I walked. I tried everything: multiple trips to my Orthopedic doctor who was completely stumped, stretching, and many rounds of physical therapy, but nothing gave me relief. Of course, I would much later learn that this is called Dystonia and is very common in Young Onset PD.

When I kept making typos at work, I went to my primary care doctor and complained that my right hand felt like it couldn’t keep up with my left, resulting in constant frustrating typos. It was so bad that I started using voice-to-text assistive technology to compose emails. I remember holding up my hands to my doctor and wiggling my fingers fast on my left hand and then showing him the same movement on my right hand, which was at about half the speed and much less graceful. He thought I had a pinched nerve and wrote down the name of a neurologist. Unfortunately, I never mentioned to him the occasional slight tremor or the toe cramps because I didn’t realize they were related. Lesson learned there!

And did I visit that neurologist? Of course not! I figured if it was a pinched nerve it would work itself out eventually and I didn’t want to open another medical “can of worms” when I was dealing with the toe cramps.

But then came the day I’ll never forget, a gorgeous sunny September day in 2020. My husband was sitting on our front porch when I came outside to put a letter in the mailbox at the end of our driveway. As I walked back up the front porch, he was looking at me strangely and said, “Your right arm isn’t swinging when you walk. Your left arm is swinging normally but your right one is just hanging there like it’s dead. What's going on?”

I told him I had no idea what he was talking about, laughed a little bit, and went back inside to work.

Five minutes later, my husband walked into my office, iPad in hand, and said in a serious but soft tone, “I hate to say this but I think you have Parkinson’s. You need to see a neurologist.” I’ll admit, I was more annoyed than concerned. “Oh come on! Are we really doing this?” I asked him. But as I looked at the list of symptoms on his iPad, my face dropped as I realized that I had so many of them.

The next morning I called the same neurologist that my GP recommended I see a few years earlier. She ordered testing including a DaTscan. A few days later, on a Sunday morning, I opened an email from the imaging center with the results of my scan that they had conducted 36 hours prior. Most of it was undecipherable without proper training except the last part that said, “consistent with Parkinson’s disease.”

Our world was rocked.