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My friend has Parkinson’s. I’ve known him since 1986 when he was working with a large multi-national company and traveling all over the world. He played regular tennis, loved to go for long walks and had a full social life.
In ’90 he became the representative of an American company selling banking infrastructure. He worked hard and his success didn’t surprise anybody.
In’96 when I had a major depressive episode, he’d take me out for a walk every evening. I lived for those walks. I woke up with only those to look forward to. He helped me chose the right doctor and talked me through those horrible times. But during those walks I noticed he was dragging his left foot. There was a slight tremor in his left hand. He went to a neurologist who told him he had Essential Tremor.
He told me that the doctor said it was Essential Tremor and not Parkinson’s because the gait was not typical of Parkinson’s.
I remember we’d gone out for coffee when he told me and I tried to make light of it and held his hand.
The progression was slow, and in 1999 when I was very, very unwell with absolutely no diagnosis he read up all my symptoms on the Internet and told me that he thought I had Lupus. Systemic Lupus Erytheomatosus – we’d never heard of that before. Yet, after I asked my Family Doctor and he sent me for the relevant blood tests, this is what it proved to be.
So you see, I owe him.
He’s got progressively worse. The drug merry-go-round started. Over the years he has been on Pacitane, dopamine agonists and Sinemet. Different timings, titrations and combinations have been tried. He has been to the U.S., and the U.K., but not much has come off the meetings with renowned specialists. He does all the recommended exercises. We don’t know, perhaps things could have got worse if he hadn’t.
It started with unilateral tremor, now it is on both sides of the body.
For the past few months he had his left toes curl up. Walking became difficult. He was looking forward to a holiday he had to miss.
On the 15th of this month he went to see a new movement disorder specialist. She suggested a gradual addition of various drugs to be added gradually. The first to be added was Comtan.
From the 21st the tremor changed to literally a shake. He has been waking up shaking.
For the first time I have heard fear in his voice.
He keeps asking me to read up.
For the first time he appears vulnerable, in need for demonstrative affection.
I read up yesterday.
It seems that for 3% of patients this is a side affect.
I am so worried.
My blog is about life with lupus and bipolar, good thoughts and bad and everything else. http://isis-thisisit.blogspot.com
