Handling the Curve Balls

Diagnosed at 16

I was diagnosed with Juvenile Parkinsonism at 16 after two years of doctor visits, tests and scary misdiagnoses. I remember being perfectly healthy, never even having had the flu until June 2007. I was 13 at the time and was out to dinner with my family to celebrate after I had pitched a win against my schools rival (Still the only time we’ve won against them!). While in the middle of a conversation with my mom, I passed out. About 30 seconds later I popped my head back up and continued like nothing had happened, while everyone looked like I was crazy. I went to the doctors and they concluded I choked, despite not haven eaten anything. Nothing else happened for 6 months. Then I was sitting in my Sophomore English class when all the sudden my right hand started shaking and I couldn’t stop it. My friend walked me down to the nurse but on the way I passed out falling down the stairs. Thankfully my mother was a teacher in the school and she was able to be with me as I was scarred out of my mind and confused. We decided it was time to see a neurologist.

In December of 2007 I was treated by a neurologist who was horrible. I was 14 at the time and scared to death as to why all the sudden I was shaking. He told me I had a brain tumor! Then weeks later said he had switched the scans and I didn’t have a brain tumor but that I had epilepsy. Frustrated, scared and confused my family decided to switch doctors. It was at that time that I was diagnosed.

I have always been an active athlete, so when my doctor told me he could put me on a medication that would help the tremors but I would probably not be able to play sports any more and would struggle in college, I decided not to go on any Parkinson’s Disease meds, but was still on xanax, metopral, and topamax from the neurologist. I finished high school having gone from a straight A, varsity lettered athlete in the who’s who book of high school students; To a C/D average student who wasn’t allowed to play for my school sports and was lucky to get into a community college. I was asked to be an RA my freshmen year, but was removed for medical conditions as the school felt I was a liability. I ended up leaving school for a semester and working. I got off my meds and went back to school feeling like my old self. I joined my schools softball team and made A’s/B’s in school going 20 credits. I felt like my old self I still had tremors on my right side but tried to ignore them. I recently transferred to massage school and have become a NYS LMT and in doing so have found some level of acceptance with my PD. I have decided that all that I have been through was a learning experience and I need to take what I can from it to help others. I am devoted to medical massage techniques and in helping others hope to help myself.

The past four years since my diagnoses I have been struggling because I don’t know anyone my age dealing with this, which makes it so hard to believe. When the movie Love and Other Drugs came out, my best friend wanted to go see it – neither of us knowing what it was really about. As we watched it I saw my friend getting really uncomfortable and at the end he asked if that’s what it’s really like. I actually started to cry laugh! I said yes and no, yes I related to Anne Hathaway in a lot of ways but its still a movie and exaggerates things. Honestly I’m glad I saw the movie and glad my friends did too. Since then it’s less awkward around them. We actually joke about some stuff and it helps.

* Juvenile Parkinsonism (diagnosis under the age of 21) is viewed as a distinct disorder, one that is often genetically determined. Juvenile Parkinsonism usually has a different course than young onset Parkinson’s disease or typical later-life Parkinson’s disease.

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