Young Onset Parkinson’s is Tricky
DIAGNOSED AT 29
It sneaks up on you. I like to think of the brain as having a mission control center. Many of you will probably think of NASA, but for those living with the “P” (my o-so-clever nickname for Parkinson’s disease), you’ll understand why I lean more towards Dr. Evil and his underground lair.
I was 28 when I first noticed something was different. Life was humming right along until a slight tremor developed in my right hand. Too much caffeine? Low blood sugar? Mission Control was reporting changes. At the time, they didn’t seem significant enough to really worry about. It’s like when you are putting together a puzzle and you find a piece that doesn’t seem to fit anywhere. You set it aside and think “I’ll figure it out later”, but it nags at you because you know that you can’t move on with the puzzle without finding where that piece fits.
Several months later, I made an appointment with my primary care physician. Diagnosis= Carpal tunnel. Sure, that makes sense. I work on a computer. Sometime later when the tremors started in my right leg, the same physician diagnosed it as carpel tunnel…huh? Now this was before the internet and right to self-diagnose every symptom six ways to Sunday. But even I knew that diagnosis was faulty at best.
Time to see a neurologist.
My appointment with the neurologist made me feel like a fruit loop in a world full of Cheerios. He ran a series of movement based tests, i.e. open and close your hands, touch your thumb to each finger, tap your foot repeatedly on the floor. To my surprise, I failed each and every test. My hand, after three or four open/closes, just stopped moving. My right foot had lost the ability to tap. When I was asked to lay down with my arms out to my side (a la snow angel) and move my arm off the floor, I simply could not do it. I was shocked and rather alarmed. How can so much have changed without me knowing? How long had this been going on? My best estimation, now, is 2-3 years before diagnosis…maybe longer.
Several appointments later I was no closer to an answer. Thankfully, after ruling out MS and many other possible illnesses, I was referred to a movement disorder specialist. Five minutes in to that first appointment, she diagnosed me with Parkinson’s disease. I was 29. It’s kind of funny…how many times in your daily life do you need to touch your thumb to each finger only to realize that you can’t and that would lead you to a life-changing diagnosis? Probably never.
My doctor started Amantadine and a month later Selegiline. I was amazed at how quickly my fatigue subsided and my stiffness improved. I stayed with this regimen for the next five years. I added Mirapex when internal tremors began to develop. Twelve years later, I have stopped Mirapex and transitioned to Sinemet.
I am now 41 and mission control has had a few opportunities to say “Houston, we have a problem”. Overall, I am doing quite well. I really believe that a positive outlook is the best medicine. In 2011, I founded a young onset support group in Chicago. In the ten years that I had been living with the “P”, I was always advised to stay away from support groups. As many of the established groups support the elderly population, I was told I might see things and hear things that would be upsetting. I believe there is some truth to that but I feel I missed out on a valuable opportunity to connect with people who would have understood what I was going through. So, I worked to create a group for young people living with Parkinson’s. Our group is for people with Parkinson’s and their families ages 59 and under. The members of the group are roughly at the same points in their lives and dealing with similar issues; many of which are very different than the elderly. For example, some topics of discussion are working with Parkinson’s, having or raising families, financial considerations, disability, etc. We’ve also benefited the spouses/friends/caregivers by giving them a place to ask questions and better understand the disease process. For me, the best outcome from founding and participating in the support group is knowing that I do not walk alone in this journey and the people beside me truly care, understand and relate.