PD: Coming to grips with my condition

This is an update to my 12/10/06 post. Unable to get a recommendation from my doctors for the chronic pain in my lower back and right knee, I did the following: Since at least part of the problem is non-parkinsonian, I made an appointment for an MRI of my back and XRAYs of my knee. The MRI should enable the surgeon to determine if surgery would likely improve the situation. The Xrays will provide the same information concerning my knee. The rotator cuffs remain in limbo, awaiting their turn. I feel at ease with this plan, so we'll shuffle the cards and see what falls out (a rather poor analogy, under the circumstances).

My current PD medications are working as well as could be expected. The theory is that if I take the proper amount of Sinemet (augmented by Comtan) at more or less equal intervals during the day, the effects (more dopamine produced) should last until the next dose. Otherwise, a period of OFF time occurs until the next dose takes effect.The good time before and after OFF periods is called ON time.

Early on, I asked my doctor if he thought I experienced OFF times. He replied, "If you have to ask, you probably haven't experienced it." Like most aspects of PD, people experience OFF time in different ways. I usually feel anxious, a little confused and begin sweating (even stranger, I often get a chill, as well). This is an excellent hint from my body to my brain that I need more medication. I don't know about you, but all this OFF and ON stuff is making me feel like a light switch. Suffice to say, if I take each and every one of my 16 daily PD pills at the exact times specified, my condition should remain fairly stable. If this sounds a little grim, well, everything is relative.

Surprisingly,I now appreciate life as much or more than ever. As I told Nancy today, "I can endure a lot during the day if I'm getting a reasonable amount of sleep at night. For example, for a week or so, I've slept very well, getting 8 or more hours a night. I can't tell you how wonderful that is. But I try not to get too optimistic, especially when I notice that I'm writing this at approximately 3AM.