I’ve had so many compliments from people the past two week about how well I look, that I had to find out more about what “looking good” looks like.
Last weekend we visited our friends at the Port Townsend (Washington) Film Festival. Gayle and Bill saw me a year ago at the same film festival. They marveled at how much I had “improved” over the year. Finally, when I got them to describe improvement, it boiled down to the absence of shaking. They observed last year that my head was moving and that I was wiggling/squirming around in my chair. They were surprised to learn that the involuntary movements were dyskinesias (as a result of taking Sinemet over a period of years) and not as a result of Parkinson’s Disease. My friends said that I didn’t look like I had Parkinson’s this year, whereas last year I definitely looked like a Parkinsonian.
My friends asked how I accounted for the improvement, and I quipped, “Olga and yoga,” Dr. Olga reprogrammed the Deep Brain Stimulation (DBS) system and adjusted my medication (less Sinemet with more of other Parkinson’s meds). Yoga has helped me to stand up straighter with better posture, improve my balance, and alleviate the neck pain from the scar tissue around the DBS wires.
In addition, this past week I officially became a volunteer at the hospital where I was previously employed as coordinator of volunteers. I am developing a volunteer program where current DBS patients meet with prospective DBS patients and their families.
When taking the health screening exam to become a volunteer, the staff was amazed at how much I had “improved.” They showed me off to other staff members who all agreed that “you don’t look like you have Parkinson’s” as they remembered how shaky I was when I left my employment in May 2006. I also encountered about a dozen volunteers who worked for me in the past who were equally impressed with how I presented to them
What others need to know about me is that…
I still have Parkinson’s. It is chronic and progressive, and remission is not an option. There is currently no cure.
It takes me a long time to look good. Getting dressed, exercising and taking care of myself can be tedious and time-consuming.
While volunteering for 3-4 hours a week is manageable, working full time is utterly impossible for me with advancing Parkinson’s.
There are many invisible signs and symptoms of Parkinson’s (see The Less Visible Symptoms of Parkinson’s).
Just because I look good, doesn’t necessarily mean that I feel good. Usually if I look good (without dyskinesia) that often means I’m undermedicated and don’t feel good.
Just because I look good right now doesn’t mean I’ll look good in an hour, tomorrow or next week.
So thanks for the “looking good” compliments. I will graciously accept all that come my way.
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