Stories

John D

Keeping the Faith

Diagnosed at 28

This week will mark 14 years since I was diagnosed. In some ways it feels like it flew by, but in other ways it feels like forever. Looking back, I was beginning to exhibit initial symptoms when I was 26. Most of them were non-motor symptoms that could be explained as other issues. The most prominent one being severe acid reflux that had no specific trigger. It wasn’t until an evening in January of 1999 that I took notice of other things. On my way out to the store, I slipped and fell on some ice, landing hard on my right elbow. It was a surprise since I had always been very sure footed. The next morning, my entire right arm felt numb. I figured it was just because I had landed hard on my funny bone (aka Ulnar Nerve) and that it would be fine in a day or two. A few weeks later, the numbness persisted, but my hand was trembling and I couldn’t stop it. I went to see my doctor and he immediately sent me to a Neurologist. As it turns out, I did have a bruised Ulnar Nerve, but after all the blood work, MRI, X-Rays and every other neurological test under the sun – the diagnosis was made of Young Onset Idiopathic Parkinson’s disease. In the time that followed immediately after that diagnosis, things seemed to be ok, until it started to progress more and daily life began to be impacted. I was starting to take more meds and had some very bad side effects with Mirapex, then with Requip. Home life also began to collapse. The stresses that were placed on the marriage were unexpected. Eventually in 2008, divorce happened.

Now, 14 years later, I am single and have progressed to the point of being on disability and exploring DBS. However, I am a core member of a local support group chapter, I am very active with fundraising as well as local advocacy efforts and I am finally in a place where I am happy and positive. I have been very open about my PD, which I never felt I could be before. I have had the opportunity to reach out to publicize PD more in my local area and have had great results. The people I am associated with are some of the best friends I have ever had. We all know as PWP’s that things can get tricky when navigating the waters of social interaction when PD enters the picture. I can safely say that the group I am with now, makes that a moot point. I am extremely fortunate to have met them and I am inspired to advocate for Parkinson’s because of their support. My mission now is to continue to raise awareness, participate in clinical trials and make the best contribution that I am able to.

We are not alone in the quest for a cure. We are not alone in having to deal with the daily challenges. My best advice to everyone and anyone who has been touched by PD is this: Never give in and never give up!

1 Comment

I have a very strong daughter that was diagnosed at 24...she is strong and your story helps me also. Go for it she is..

Karen Gag.e, Oct 23, 2013

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