Diary of A Parkinson’s Diagnosis
Two years ago tonight, I went to sleep knowing it might be the last time I existed on this planet without the descriptor Young Onset Parkinson’s patient before or after my name. It had been four years since my first symptom, three weeks since my neurologist finally suggested that I meet with a movement disorder specialist, and two weeks since the specialist suggested I have a DaTscan to confirm, or hopefully rule out Parkinson’s. She explained that there were only a few hospitals in the country that had this specific type of test available, and “luckily” for us, one had just been installed at George Washington Hospital. It was so new that when I called to schedule the test, the administrator had no idea what I was talking about, but which also meant they had appointments available right away. Mine was scheduled for the first Monday in December.
Before the test, I escaped to California with my college besties for our biennial girls trip. In the middle of sun, spa, and sips, I blurted out that a doctor thought I might have Parkinson’s but we weren’t sure and that I’d be having this test the day after I got back home. They reacted as you’d expect lifelong friends to do - with equal parts support and F bombs but we kept it together to enjoy our break from reality. Flying back, I dreaded what awaited and cried through most of the five hour flight.
My mom was at our house waiting when I arrived. She planned to come with me to the test because Mike had an unmovable work commitment. We giggled as I “tucked her in” to Ava’s double bed complete with the Christmas sheets - just like a little kid. My mom is a force for positivity and we laughed despite the heavy feeling of what the next day might bring.
Early the next morning, I drove her weird little electric red car to the hospital, which was a good distraction because I literally had no idea what I was doing and therefore couldn’t be stressed about the test. We were laughing so hard as I tried to figure out how to turn it on and keep it moving forward. We were lucky to get there at all because I’m pretty sure I almost shut off the car like ten different times while we were on the highway. By the time we arrived, I was so frustrated I practically threw the keys at the valet guy out in front of the hospital (who knew that was a thing!). He was out of paper tickets and told me to take a picture of the keys in case he was already off duty by the time we were done.
We walked into the hospital lobby and I remember that it was decorated for Christmas with trees all over. After we got checked in and found a seat in the big, open lobby area, a harpist arrived and played the most beautiful music - presumably to calm all of the frayed nerves in this otherwise scary feeling place. I later learned it was something GW Hospital had done for years to comfort patients - what a brilliant idea.
A nurse called my name and brought me back a long hallway, making small talk about Christmas shopping. We got to a large, dimly lit test room where a foreboding machine that looked similar to a TSA scanner sat. The nurse injected a radioactive tracer into my arm and told me I’d need to wait five hours for it to make its way to my brain. I mean…take your time tracer. Jeez. My mom and I walked across the street and ate lunch at a little deli - trying to avoid any talk about what was really going on. Holiday plans, family gossip, the news…whatever we could think of. I remember at one point saying “what if it is Parkinson’s, Mom?” and she just put her hand on top of mine on the table and said “then we’ll get through it together, baby.” I was 47 but still needed my mom in that moment.
The waiting area was full by the time we got back - elderly people in wheelchairs with loving caregivers, nervous looking spouses, a few kids trying not to make a lot of noise. Every once in a while, the silence broken by the announcement of a name, or a doctor coming out to provide an update. The five hours felt like forever, but finally it was my turn for the test. We walked back to the same room and this time an older radiologist was standing in a small room behind a glass window. He nodded hi as the other team members got me settled on the metal table. My head was strapped to a foam block and they told me not to move. They said it would take about an hour and if I did move during it, they would have to start over from the beginning. Oh the sweet irony of telling someone there for a test for tremors not to move.
Anyone who knows me will tell you I am exceptionally, and often irrationally, claustrophobic. One time at Disney, the Rock N Roller Coaster got stuck about thirty feet from the end of the ride and we sat with Aerosmith blasting at full volume for what felt like hours - though it was probably a few minutes at most. Panic rose in me so quickly that Bobby, who was probably 8 or 9 at the time, had to calm me down. I remember him kicking his Crocs back and forth while petting my hand. The poor kid. Safe to say, getting my head stuck in a giant metal squishing machine was pushing me to the limits of my sanity, but I didn’t want to have to start over, so I laid there frozen for the duration.
While I laid there, I thought of all the Christmas shopping I had left to do, the actual work I was very behind at finishing, and at some point, started reflected on the past four years that I had been dealing with tremors and freezing and slowness and stiffness. Despite the symptoms racking up, I was still convinced that Parkinson’s was not my path. Recently someone called me a tragic optimist, and I think that is the perfect description. I truly believe everything is going to be ok - even when all evidence suggests otherwise. I wish I could say that it’s a conscious choice, but it isn’t. It is just the way I’m wired. I’ve always considered myself a happy dummy in that way. Not that I’m not dumb, or that I don’t worry - trust me I do. But generally speaking, believe that it will either be ok, or if it’s not, I’ll find a way to make the best of it. I hate the concept of toxic positivity - so please don’t misinterpret this. I rage, and cry, and yell often. More on that later though.
During the time with my head precariously placed between two metal, spinning plates, I convinced myself that Parkinson’s was not in my future. No matter how hard I tried, I simply could not envision Mike having to take care of me, or giving up the adventures we love to take with our little family. The idea of being trapped in a non-cooperative body was not on the agenda for someone who prides herself on being fiercely independent. Go ahead and tell me I can’t do something…I dare you has been the running mantra in my head for most of my life. I was so convinced that this was all one big mistake, that by the time the test ended and they took the straps off my forehead, I sat up so quickly I bonked my head on the orbiter thing.
Like I said, happy dummy.
I laughed at myself, recovered, and was putting my jacket on when the radiologist came out from behind the glass. He had a very kind, but somewhat sad, look on his face. He helped me put my hand through the sleeve and then put his arm around me in a very fatherly way and said “dear, I am required to put the results of this test into your patient portal - which I will do later today or tomorrow after a panel of radiologists confirm my findings. I suggest you do not read it without your doctor present, ok? They may be confusing and she will help you understand them.”
He knew. And of course, then I knew.
By the time I got to the lobby to see my mom, the tears were already starting to form. I got home, crawled in my bed and slept for the rest of the day. As soon as I woke up, I started checking my portal obsessively. I had a virtual therapy session where we discussed possible outcomes and where my therapist urged me to at least wait until Mike was home to read it together. Not five minutes after I hung up with her, a ping notified me that there was a new test result waiting for me. Contrary to what the kind radiologist had warned, and what my therapist suggested, I read the report immediately and alone. The aforementioned panel of radiologists collectively confirmed that this was an abnormal DaTscan indicative of Parkinson’s disease. I read it four times before closing the document.
Anyone who has ever been diagnosed with something of this magnitude may tell you that there is an adrenaline rush that happens. Not a positive one per se, but a rush nonetheless. I immediately had this intense feeling of disbelief but also, weirdly, relief. I thought to myself, “Seeeeee…I wasn’t making it up!” but the sense of validation quickly evaporated and fear almost immediately crept in. I called Mike at work, unfairly blurted it out to him while he was in a meeting (I could have handled that better), and waited on the couch watching World Cup soccer until he got home.
A few days later we went back to see Dr. T who confirmed the findings and walked us through the next few steps post diagnosis. We both cried through the appointment, and then drove to our favorite restaurant where I drank several glasses of champagne and cried some more.
The next few weeks were a blur. We devised a plan to tell the kids, which was one of the hardest things we’ve ever had to do. I started physical therapy to hopefully regain some of the abilities I had lost and we made a plan to start medications slowly to give me back some resemblance of a symptom free life for awhile. It was also our anniversary, Mike’s birthday, Christmas, my birthday and New Year’s all in rapid succession. It was, to put in mildly, a lot. But we survived and managed to have a lot of laughs and make some great memories along the way. On a whim, we got in our car and drove from DC to Jacksonville, FL to watch our beloved Notre Dame play in a bowl game. Spontaneous was the new name of the game.
While we were there, on the morning of my birthday, I stood on the hotel balcony while everyone else slept. I did my new PT exercises as the sun rose and I cried watching the waves crash. It was the first time, in about six weeks, that I remember feeling hopeful. The sound of the Atlantic ocean has been a part of my life since I was born and it was the perfect place to be in that moment.
That day, we had spa appointments, played the worst family game of pickle ball in history, and went out to a great dinner. As I blew out the candles on my little slice of cake, I found my way back to my happy dummy self. I made a choice that night, one that I am proud to remain committed to today: I would hope for the best and work for the cure.
Two years since my official diagnosis, and six years since my first symptom, the challenges continue to mount. As I write this, I have willfully ignored the alarm on my phone telling me I am behind in my 12:30 pm dose of Carbidopa/Levodopa which means my right foot is currently thumping like I am nervous even though I am not. When I stand up and walk towards the stairs to get my pills, it will drag and drop, making walking awkward. As I sit here, I am slowly losing the ability to use my right hand - which makes typing impossible, and my right arm feels like a dead weight with a burning pain in my forearm as my fingers beginning to curl and clench. I recently have developed a horrible ringing in my ears (called tinnitus) which may or may not be a result of Parkinson’s and which is maddening at best. It’s as if I am robot whose power source is slowly draining until I shut down completely. And then I plug back in in the form of taking three magic pills four times a day and resume my regularly scheduled programming. It is a daily, if not hourly reminder, of what I am up against with Parkinson’s and I know it’s a battle that without a cure, I will not win. But I refuse to give in right now, and hopefully ever. This doesn’t mean I am in denial, it means I am living in defiance of this disease. I know what is ahead of me. I have now been around people living with it, and have seen my own progression enough to know that no one gets out of this unscathed. But I will keep fighting because that is who I was before Parkinson’s and who I always hope to be.
Thinking back to two years ago tonight, I wish I could give myself a hug and tell that version of me not to be afraid. I would tell her that it will be really, really hard but it will be ok because we are not just living with Parkinson’s….we are truly thriving. If you happen to find this, and you are just diagnosed, I hope you read that and believe it. Life will go on - and maybe even get better while also harder.