Each Day is a Gift
Diagnosed at 30
I was diagnosed less than a year ago at the ripe old age of 30. I fully anticipated that my 30s would be the best years of my life. I had climbed my first mountain, rafted some of the best rapids on the East Coast, and hiked 50 miles in 3 days along a trail from the Ohio River to the Mississippi. I had met a woman who I could imagine spending the rest of my life with, and had a seven year old son who was about as good as any child can be.
Unlike a lot of people's stories here, I can't pinpoint when my symptoms first started. My handwriting has been somewhat cramped for years, my hands had shaken for a long time, and I spent a lot of time alone. So when I felt bad for some unknown reason, there was no one around to see how bad it was. I can, however, pinpoint when the symptoms got bad enough to seek help. I was going to the grocery store and I started to hum to myself. As I walked through the grocery store, I became conscious of the fact that I was moving very slowly. It started to scare me, and over the course of the next couple of months I discovered that my tremor--something I'd lived with for a long time--had gotten worse, and that my right arm had lost its swing. Also unlike a lot of people, I had no major battles with doctors and neurologists. I could see that my primary care physician was skeptical, but his nurse practitioner had recommended me to a local neurologist.
Already I had begun to suspect that it was Parkinson's disease. I knew almost nothing about the disease, but my father had been diagnosed eight years prior, and I decided to talk to him about it. He said at that point, he'd seen symptoms in me for at least a few years, but didn't want to say anything (for fear of projecting). He said that my speech patterns were among the first things he noticed, that I had a tendency to lose words in mid-sentence, and speak slowly at times. He also told me about the battles he had with local neurologists. When I spoke to my partner, she was instantly supportive and set to work assisting me in finding the best way to deal with what came next. She called a local Parkinson's support line, and was told by the person working that we should ask for a referral to Vanderbilt, because there were no good movement disorder specialists in our area. My dad's neurologist was at Vanderbilt and he worked me in within two months of calling for an appointment. My dad, my step-mom, my partner, and I drove the 3 hours to Nashville that day. That was the day I was diagnosed.
Since, I have been in a battle with symptoms: insomnia, bradykinesia, tremor, stiffness, dead shoulders. Some of these had occurred infrequently before, and some were new to me. I have had some minor cognitive issues, and my speech and movement often give away how well I'm feeling when I go to work. I'd always been a hard worker, and telling my boss that I had Parkinson's was a hard thing to do. I've since sought accommodations to better enable me to do my job, and I'm now on Sinemet--after battling with several other medications along the way--which largely keeps the symptoms under control.
I just got back from a week-long vacation in Cancun, Mexico with my partner Sarah. It was one of the best vacations of my life. Despite my diagnosis, and despite the daily problems we all face with this disease, I can say that maybe my 30s will be the best years of my life, because now I know that time is of the essence, and each day is a gift.