I have been told that I am lucky in two ways (1) if I have to have an incurable degenerative disease, I lucked out with parkinson's, since its symptoms are controllable with l-dopa (2) if I have to have parkinson's, there is some indication that if it starts with a tremor on one side of the body, it is likely to progress more slowly. I am not so sure about the latter. When the tremor first starts, victims apparently have lost up to 80% of their dopamine producing capabilities and have had the disease long before the tremor manifests itself.
Let's talk about that tremor. As I have said, it started with my hand but now, at times, it involves my lower arm as well. When the tremor is at its peak, my lower arm appears not to have any bones, the shaking can be so bad. I look like a prima ballerina on speed, doing a one-armed dance of the dying swan. Fortunately, that is rare.
It sounds like my right hand is shaking all the time. That is not the case. I suffer tremors only when I am not using my hand, like when I am resting and watching TV, or when my arm is hanging by my side, relaxing. When I use my hand, for example to type this catharsis, everything is normal. Even watching TV, I can control the tremor by holding a baseball sized nerf ball and occasionally squeezing it. I showed my wife how it works. I let my hand and arm start a serious vibration and then I tied my shoe. As soon as my right hand held the shoe string, all vibration stopped. Thankfully, most of my day is normal, as far as the tremor goes.
I am not on the l-dopa yet but instead, I am taking mirapex which also helps calm the tremor. I was warned that it can cause compulsive behaviour, examples being, compulsive sex, compulsive shopping, etc, both of which might be viewed by some as positive side effects. Not for me. The compulsive behaviour I got out of it is compulsive eating. I have got to get that under control!
So you can see, all is not that bad - yet - and maybe it will always be not-so-bad. Only time and l-dopa will tell.
More importantly, do we have any fresh bananas in the house? How about chocolate cake? Coke?
I have been looking for your insights on levodopa and noticed you started on mirapex. I have early pd and the neurologist gave me carbidopa/levodopa 25-100mg and suggested I "play with it" beginning with one-two tabs in the morning. I have been searching around for impact of early adoption of drug vs. deferral and was wondering what you may have discovered. I am a lawyer too but be assured I am not asking for medical advice and hold you accountable for nothing except your excellent blog. Thanks and peace to you.
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