Disclaimer: I wrote this blog post in April 2023, a few months after I was diagnosed with Young Onset Parkinson’s Disease. I have learned so much since I wrote this about my own journey and about this disease but I’m leaving it as is because it captures a moment in time.

I know I’m not alone in having the inappropriate urge to know the details of someone else’s traumatic story. Blame it on the boundary-less environment that social media creates (or that I was born with) but when someone posts about something they are going through and is vague or cagey, I find it deeply annoying. Either share or don’t share, ya know? Anyway, for those of you who are like me, here is the story of how I was diagnosed with young onset Parkinson’s. If you are easily bored or understand the concept of boundaries, just skip to the end where I preach about how you can possibly avoid this same fate.

The fall of 2020 was the most sustained stress I had ever felt in my life. I know, I know, who wasn’t stressed then? The early days of the pandemic were over, and we were in seemingly endless holding pattern of misery. The pressure of a bunch of different aspects of life felt like an elephant had set up permanent residence on my chest. I remember a day where I drove to what we call the “airplane park” and laid on the grass alone for hours to watch the planes landing at DCA to just try to release some of the constant anxiety I felt during that time. Oh, the sweet irony of this photo of me in my Be Brain Powerful t-shirt while I spent the most of that night sobbing. More on that later, and yes I do take photos of every emotion I have. You’re welcome.

Anyone who has ever been through a medical crisis will tell you that there are good doctors and great doctors, and then there are really shitty ones who like to say things like “I’m sure it’s nothing. Have you tried working out? Maybe eat more grilled chicken? Or perhaps just become a less stressed person?” Sigh. When I went back to my primary care doctor she downplayed the situation and attributed my tremor to my thyroid meds being too high (side note: I no longer have a thyroid thanks to a softball size tumor that settled in my throat like a rent-controlled tenant in the early 2000s). My endocrinologist was like “uhh..nope, not that kind of tremor” but we lowered my meds anyway and hoped for the best.  

Then in the summer of 2021, I had an ocular migraine. Think of this as your vision turning into a kaleidoscope and having giant sections of your eyesight disappear. This caused me to accidentally open the car door smack into the side of my temple and that landed me in the ER where a bunch of tests showed nothing at all. The neurologist on call that night suggested I see him to follow up on the migraine sitch, and while I was sitting on the exam table at that appointment, he asked me about my crazy twitching foot. He said it was likely an essential tremor, which my mom has and put me on a drug that helped a little but not much. He later ordered an MRI which also showed nothing except what the radiologist called  “normal shrinking of the brain due to age” – the sheer audacity!

I learned to live with the tremor until the fall of 2022 when things took a turn for the worse. Suddenly I stopped being able to type with my right hand at all. No matter how hard I tried to tell my fingers to move, they would not comply. I also noticed that my arm wasn’t swinging when I walked. It was bizarre and worrisome. And at this point, the tremor in my right leg was so bad I couldn’t sit in a chair without my leg thumping up and down like I was in the principal’s office waiting to get in trouble. It all became too much to ignore and I trotted myself right back to Dr. G. At this point he asked me to perform a series of physical tests like tapping my feet and fingers, walking in the hallway, and writing some words on a sheet of paper. After about 20 minutes of these tests, he left the room for a long time and then came back with a young doctor who started taking notes. Dr. G took off his mask, looked at the floor and asked me if anyone in my family had ever had Parkinson’s disease.

I remember the blood rushing to my ears and cheeks while I squeaked out a no. He quickly reassured me that it would be very rare for a woman of my age to have Parkinson’s. He said I shouldn’t worry but he did want me to see a movement disorder specialist at George Washington Hospital just to rule it out. I texted Mike and tried to stay calm but as soon as I got to my car, I Googled “Parkinson’s symptoms”. I had almost all of them.

Later that week, I headed to Cali for a girl’s trip with my college besties and did my best to forget about what Dr. G had said. We didn't know anything concrete at that point but in between spa appointments and spicy margs, we went on a hike and I had trouble keeping up with them. No matter how fast I tried to walk, I kept falling behind. In fairness, one of them is a super marathoner who walks faster than I run at full speed, but normally I can hold my own. It was frustrating and In my heart I knew that something was very wrong. I curled up in my window seat, stared out the world below and quietly cried most of five-hour flight back to DC.

Mike and I met the new doc at GW and after she observed me repeat the same physical tests, she told us she was confident it was Parkinson’s. It was like a punch to the gut even though we weren’t totally surprised. She did say that the hospital had this fancy test called a DAT Scan which would confirm, or possibly rule it out. We left with the tiniest sliver of hope that her clinical diagnosis was wrong.

A few weeks later, I was lying on table with a machine making circles around my head for a few hours. I laid there thinking this was utterly ridiculous and I suddenly had this rush of confidence that this was not my future, that Mike and I would be those annoying old people who go on cycle rides at 75. I was literally giddy when it was over, right up until the moment when the lovely older radiologist put his arm around my shoulder and said “Do me a favor dear, don’t read the results in your portal alone, ok?”  He knew what the images showed. I was crushed.

What my “abnormal” DAT scan revealed was that the neurons on the left side of my brain were no longer playing nicely with dopamine which was effectively short circuiting the muscles in my foot, leg, hand, and arm on my right side. The report in my portal said it was reviewed by a “panel of radiologists who collectively confirm a Parkinson’s diagnosis”. I sat at my desk for a long time before I got up the nerve to call Mike. I knew that this was a life sentence for him too and I felt equally devastated and guilty.

I found this image describing the different between a. normal and an abnormal Dat Scan below. It’s probably a good time to remind you that I am a brilliant event producer who knows very little about medicine. I am learning as I walk through this process and am by no means an expert in anything except Bravo tv shows.

A follow up visit to Dr. T confirmed everything we already knew and so began the process of meds, and physical therapy, and regular therapy and at some point (I’ll let you know when) acceptance of the diagnosis. After I wiped away the snot on my face that day, I asked her if she knew what might have caused me to get it. Was there anything I did?  She was honest and said that it could be genetic but also could have been caused by environmental or lifestyle factors. Gulp…what’s that now?

She said that anxiety is the absolute worst thing for our brains and asked if I was an easily stressed person. I let out a sly laugh, slowly sat back in my chair and said “Who, me?? I mean…nooooo way doc. I am totally chill as a human, ya know?” At this point Mike, who had been a silent rock throughout that appointment, slowly raised his hand to object and then provided a list of all the things that stress me out: my job, our families, our dog, our house, certain shows on Netflix, the mailman, a lot of our kids’ soccer games, bees, traveling, not traveling, and on and on. While I briefly considered taking out my phone to search for divorce lawyers, I had to admit he was right. I stress about everything and had for years. And despite having an on again, off again love affair with my Peloton, I spent much of my adult life out of shape, not eating great, and working way, way, WAY more than I should. I felt confident that I fell into the “lifestyle factors” category she mentioned. While no one can say for sure what causes Parkinson’s, what I do know is that I could have taken better care of myself and my brain long ago.

From start to finish, it took four years for me to get a Parkinson’s diagnosis which I have learned is common for women who often are not believed when they present with symptoms. Obviously it was not the result any of us were hoping for but one that, on most days, we are tackling with positivity. Before you go, here’s a pic from our fabulous girls trip and the moment we accidentally found the house from Beaches which was so exciting! I am so lucky for these humans and all the friends in my life.