Part 2: Dealing with the Diagnosis
Some moments in life stick with you forever, etched into your memory like they just happened yesterday. Realizing you have a chronic, progressive neurological disease is one of them. It was a quiet Sunday morning in October. My husband and I had just woken up and were reading on our iPads. In my in-box was a message with the results of the DaTscan taken 36 hours earlier. “Should I open it now?” I asked. “Sure,” came the reply next to me. The words at the bottom of the report read, “consistent with Parkinson’s disease,” and shocked what little grogginess remained in us. Tears flowed. Arms hugged. Promises were made. 
The next morning, I called the neurologist. The conversation on the other end of the line went something like this:
I see your results here but I’m just not sure. I want you to see a Movement Disorder Specialist as soon as possible … that’s a neurologist who specializes in Parkinson’s … and, hey you’re really lucky because Georgetown Medstar is practically in your backyard and they are the best, and also, I already called in this drug for you that I want you to start taking today. It’s called Carbidopa-Levodopa, it’s the gold standard, you’ll take it three times a day, and you’ll know for sure if you have Parkinson’s in two or three days because if your symptoms improve, then you have Parkinson’s, and if they don’t improve then you don’t have it.
My head was spinning after that word salad and I asked very carefully with intentional emphasis, “I need to know: Do. You. Think. I. Have. Parkinson’s?” I’ll never forget her audible sigh followed by a defeated-sounding, “Yes.” I could feel her sadness in that sigh. She was a sleep disorder neurologist and PD was not her specialty.
About 6 weeks later, we met with the MDS at Georgetown Medstar and he confirmed that I had Young Onset Parkinson’s Disease.
Thus began what I humorously now refer to as my 10-month long “pity party.” I’m not trying to be flippant here. It’s a terrible diagnosis and I needed this time to grieve for the future I thought my husband and I would have together. There’s no doubt that it has been altered greatly. But it’s not a place to linger long. You need to get to the other side of it.
From the get-go, he and I would tell each other, “At least it’s not a brain tumor, or MS, or ALS, or (fill in the blank with your terrible disease of choice).” I tried to stay strong and keep a brave face, but let me tell you, it was a really dark time. I found myself in tears often, especially when I had the house to myself.
Early on, I remember many hushed FaceTime conversations with some of my close friends conducted in our bedroom closet. It was the only place in the house where I knew I couldn’t be overheard by our kids.
Telling our twin daughters went better than expected, probably because my husband didn’t give me time to fret about it (he knows me so well!). We were all together one day and he looked at me and said, “We might as well tell them now,” giving me no choice but to tell them. They were just 22 years old, but they handled it with compassion and maturity.
Here’s where I hit my turning point and how I left the pity party behind. I had a checkup with my MDS, and I told him I was really worried. He said, “Oh, about Covid?” (we were still in the pandemic at the time). “No!” I replied, “Parkinson’s!” He basically brushed me off and said something like, “Everybody has something. Just take it one day at a time.” To say I felt like my emotions were being dismissed is an understatement.
After my appointment, I met up with Anna Grill, the founder of YOPN. She had graciously invited me to meet her for lunch at a nearby restaurant. She was the first person I’d ever met with YOPD and she was so sweet and kind. We shared our PD stories and I remember asking her a ton of questions. At some point during lunch, I told her about my frustrating conversation with my MDS earlier that morning. I just knew she would be as indignant as I was. Her two-word reply shocked me to my core. “He’s right,” she said quietly. She advised me to leave my pity party behind and start living. Boy, was that a message I desperately needed to hear from someone who actually had the same diagnosis. She was right.
I always knew that I had so much going for me, but it was time to truly appreciate it! I have a loving family, strong faith, wonderful friends, and good health insurance. I am going to be fine. Even when I’m not fine (and there are days when I am far from it), I will be fine.
My favorite song lyrics from The Barenaked Ladies tune, “Lovers in a Dangerous Time,” is now my motto: “Nothing worth having comes without some kind of fight. Gotta kick at the darkness 'til it bleeds daylight.”
Kick at the darkness, my friends. Never stop kicking at it.
Author’s Note: If you are having thoughts of suicide or self-harm, please reach out for help today. Whether it's a trusted friend, family member, or a mental health professional, don't hesitate to lean on someone for support. You can also contact a suicide prevention hotline—they're there to help you through this. In the US, you can dial 988 anytime to speak with someone. You are not alone, and you are loved.
