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Old 10-21-2006, 10:41 PM
boann boann is offline
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Join Date: Sep 2006
Posts: 165
15 yr Member
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
Default my story

thanks again to all for responding. seems only fitting that i should tell my own story and in so doing answer my own questions.

i first noticed something in 1996, when I was 32. suddenly, it seemed my hand was not fully obeying my brain's commands when i was writing in my journal, but it was so subtle that i figured i was imagining it. i maintained that attitude for the next two years, in spite of the tremor that appeared in my right hand six months later, and the disappearance of arm swing on the right when walking within one year, and the development an odd, completely unconscious habit of standing with all my weight on my left foot. however, by the two year mark, writing with pen and paper just wasn't worth the effort anymore and i knew i had to find out what was wrong.

i was eventually diagnosed in 2000, when i was 36. i started taking Mirapex in 2001, i think. aside from CoQ10, it is still the only thing i take for PD. the only reason i started taking it was because i unexpectedly found myself looking for a job (start-up went belly up) and was concerned about my ability to type - otherwise would not have started as my other symptoms were still negligible.

i don't know my UPDRS score but in May i was told i am all 1's and 0's. I walk funny, but that is at least partially due to nerve damage. i still don't write much with pen and paper, and typing can be a major challenge (after 5 years i guess a DA might start to wear thin) - there are other things i don't do so well anymore, like dancing, but overall, i am about 95% fine. no dyskinesias, no fluctuations, no carefully choreographed and precisely timed cocktail of drugs.

i have the impression i am something of an anomaly, being in this good shape and taking only one drug 10 years into symptoms and 6 years past diagnosis, and the one thing that i definitely don't have in common with most others with PD is levodopa.

so my questions were intended to try and get a sense of what proportion of people were started off on ldopa and how severe their symptoms were at that time, by both their own estimation and the "objective" assessment of a neuro using either H&Y or the UPDRS.

basically, my thought is that maybe i am not such an anomaly - in the early studies i have read, the folks this drug was tested on were in the advanced stages of the disease - and many of the studies that i have read, particularly the early ones, recommend delaying the need for levodopa until, say, one's bodily safety is endangered (by falls, for example) or until one's ability to work or accomplish basic activities like grocery shopping is seriously impacted, and i would love to know what the norm is these days - because if one is already advanced, then maybe the degree of benefit one gets from levodopa (the bang) is worth the subsequent side effects (the buck), because one was already pretty bad off. but if one is only mildly symptomatic, one gets far less bang for the same buck (or more buck(s), if one is on the younger side), since bang, or "degree of improvement," is relative to one's level of disability. Hope my meaning didn’t get lost in the metaphor there.

The problem is that there are very few controls, i.e., people w/PD who have never taken levodopa, with whom to compare experiences. That is a major problem in PD research in general, in my opinion, but that is a whole ‘nother thread.

boann
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