It seems like almost anyone who knows anyone with Parkinson's has written to us in the last 24 hours. Every now and then we've gotten e-mails from someone who actually has the disease, like the woman below. -- Ed.
I watched your interview with Michael J. Fox and wanted to add, from my perspective, what it is like to have Parkinson's at age 43.
A bit of background: I was diagnosed with Parkinson's when I was 40 but in looking back at some of the early symptoms of the disease it started when I was 30. It has been found in many early onset patients that the first thing that happens is a sore sholder. That's where it started with me. It took a chiropracter to tell me to go to a neurologist to finally diagnose me. I have been on medication for 3 1/2 years.
Now, let me tell you what it is like for us regular folk to have this disease. I wake up and am so stiff I can hardly take a shower and get ready for work. Yes, most of us have to hold down regular jobs. It takes anywhere from 1-2 hours for the medication to "kick-in", except round 'that time of the month' when the medication barely works at all.
So the back to my daily activities. Shower, brush teeth, do hair (luckly for me my hair is curly so just a bit of goo and I am done), dress, get lunch ready, and drive to work. All the time my body is so stiff I move at a snails pace and hoping that by the time I get to work I can move just like anyone else. You see, I have not told my employer that I have Parkinson's - first because I just started here 3 weeks ago and second I essentially lost a job when I told them I had this disease (they called it a lay off but it was just a few weeks after I told my boss) so I am fearful of losing this one.
Now the rest of the day, hopefully my meds work until it is time to take the next dose and so no one notices that I have a problem moving, speaking, etc. Once I get home, I usually have about 4 good hours (that is where I can move) then it is back to being stiff, sore, and slow.
Sleeping is something I don't do much of any more since, if I wake up early, the stiffness and soreness make it difficult if not impossible to find a good position to sleep in. It has gotten to the point that most of the time I sleep in the guest room so as to not keep my boyfried awake while I try to find a comfortable position.
So, I get about 15 hours of 'relief' when I am on medication. I am just waiting for the day the meds don't work anymore and/or they cause me Dyskinesia and I can no longer hide my symptoms. What do I do then?
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