4165 Days and Counting

This is not intended to be a depressing commentary on the trials and tribulations of one mans struggle with a Parkinson’s disease. Everyone has something they must struggle to overcome and many in much more grave situations than I. However, I do get jealous of 80 year olds who walk around in perfect health. This blog is meant to inspire others like me, or not like me, who might want some insight into what it is like to have PD…or maybe just find this blog amusing.

The details: I am 50 years old and diagnosed with PD at 40. Enough said. The disease does not define me, although it is something I fight against every day. I am not famous like Michael J Fox or Brian Grant and I really appreciate all that they and others are doing to bring awareness and research dollars to fight PD. In fact I spend a lot of time trying to hide the fact that I have PD. Although I can tell you I have gotten really good at recognizing those that do. Why? I guess I am embarrassed. For all intensive purposes I look like a young healthy adult, who within the span of minutes,can turn into a shuffling old man. People I am sure do not know what is going on and probably think I am on drugs or suffering a stroke! But kids are the best. They have no qualms about staring or turning their heads for another glance at what I call “crashing” (the state where my cocktail of drugs wear off). Things usually get rectified rather quickly with a visit to my pill box, but sometimes it can take awhile. So how do I deal with it?

I take multiple medications to bring me back to a normal state, play soccer, and run the foothills around my house with my dog. Exercise is one of the best things one can do to combat the disease and if so I am ready for the PD Olympics. Speaking of which why isn’t there an Olympics for PD sufferers? There is a special Olympics! I guess people don’t really want to see 60+ year old people in bathing suits having to be rescued from the pool due to “crashing”. On the mental health front, my dog is a therapy dog, bred to be exceedingly cute to distract kids and adults from my condition. He does a great job (labradoodle). This and letting people know that I have PD makes me more comfortable. My wife hates it when I tell someone I have PD with whom I have known for only ten minutes. I tell her it beats walking into a room with a bull horn or t-shirt with “Love me – I have PD”. Telling people I have PD makes me feel less self conscious about the crashing and involuntary dyskinesia. Speaking of which, don’t tell Oprah or Jenny Craig about PD and dyskinesia! I have lost 20 lbs. due to the constant movement and tensing of my muscles.

I have also given my brain to science and participated in a clinical trial that involved putting gene therapy into my brain. It was an 11 hour surgery and the surgeon and neurologist were great. More on that in a future post…

If guess that is enough for an initial post. Hopefully you have found this entertaining and you will want more…

 

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