I Wish I Had Known
Diagnosed at 34
My name is Robert I am 43 years old and I have Parkinson's. I would like to tell people that don't know, that the symptoms of Parkinson's can be mistaken for many types of nerve disorders.
About nine years ago I started trembling in my right hand, just enough for it to be noticeable to myself and family. I got used to it and carried on with my every day activities and it slowly became worse, especially when I relaxed or was eating, so I went to my local doctor and he was sure that it was anxiety or nerves and gave me meds accordingly. Well, as time went on my tremors became more noticeable and my balance was getting bad and my movement was slowing. I couldn't understand it. I was young and always felt tired and sore and felt like I was 30 years older than I was.
Well as the years passed, and the symptoms grew, I began losing my balance and stumbling around at home as well as at work. Then one day I fell at work (keep in mind, I had hidden it from all I could) and hurt my leg. I went to the doctor for the first time in a few years, and I couldn't hide it anymore. He noticed my walk, tremor, and balance problem right away and sent me to a neurologist. That was two and a half years ago. I was diagnosed then and was given RequipÂ®, a small dose to gradually increase until my tremors calmed down a little. I still have severe trouble with my balance, and I walk with little shuffled steps. It has progressed very quickly. And here's the kicker. I can't work. I'm sore all the time, and I don't have any insurance since my employer cancelled it. Being "high risk" leaves few options for health insurance, I can barely afford my medicine, much less food. So, I applied for social security disability with the doctor's support, and I have been turned down four times. Even though I have worked every day of my adult life, and paid into the SSDI program, I never thought I would ever have to depend on it. To my surprise, younger people with Parkinson's disease frequently have a more difficult time being approved for disability than someone who is older with the same diagnosis, symptoms, and limitations.
I only wish I had gone to a specialist when my symptoms first started and maybe things wouldn't be so hard for me now. So, if you are reading this and have a small shake or a small uncontrolled motion problem, don't put it off, get it looked at! I really hope for a cure for us all. I would love to play ball with my children again. I also hope APDA will publish this, that they are willing to show the bad as well as the good "faces of experience".
THANK YOU SO MUCH