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Hello Everyone;
 
I'm finally crawling out of the woodwork!
 
I've been lurking for a couple of months now, and have been astonished
and impressed at all of the information and support here. So much so,
that I've downloaded all of the Parkinsn logs since the beginning of
the year. I've been editing them so that I can take a 'hard copy' with
me when I visit my sister at Christmas. (at the rate it's going - I'll
probably be lugging a 1,000 page treatise - Merry Christmas, Sis)
 
I'm female, 48, and was diagnosed 7 years ago, although (like many of
us) I observed symptoms for some time prior to that (approximately 3
years, I think). I'm currently taking only Sinemet 25/100, 10/100 and
Eldepryl 5 mg. (Daily Total: Levodopa 700; Carbidopa 100; Eldepryl
10). Virtually all symptoms (rigidity and slowness, very little
tremor) have been 95% controlled with this regimen, until the last
year or so.
 
I've been noticing a definite 'On-Off' phenomenon with the Sinemet
level. Four or five years ago, I didn't really understand what
'On-Off' meant. I think I should consider a dopamine agonist (Permax
or Parlodel) to help 'smooth things out', and possibly help lower my
intake of Sinemet. Is there any 'best' time to start these?
 
The other thing I've noticed lately, and the reason I'm changing my
status from 'lurker' to 'poster', is that my medications seem to
become totally ineffective at a couple of points through the menstrual
cycle - for a day or two at ovulation, and for several days before and
after the start of my period. I've thought that this could be a sign
of the dreaded 'M' word - Menopause. If so, what do the hormone
fluctuations mean? Which hormones are causing the meds fluctuation -
the ones that are on their way out the door, or the ones fighting for
possession? Or should the question be - are the hormones affecting the
medications or the PD symptoms?
 
Several years ago, I received some literature from the Young
Parkinson's organization in the U.K. (Yappers?) I remember seeing a
description of a question and answer period after a Parkinson's panel
discussion; a woman in the audience asked essentially the same
question - and one of the doctors on the panel responded that yes, the
hormone swings would certainly modify the medication's effectiveness.
But that was it - I didn't see any follow-up discussion or
information.
 
The recent discussion of menstrual hormones and PD 'sang' to me - if
this is such a clearly observed phenomenon, it's got to be worth
investigating. Digging through the archives, I found the post from
J.R. Bruman on 1st July, listing recent science publications,
including: "Giladi N: Neur 1995;45:1028 - Cyclic menstrual hormone
changes profoundly affect PD symptoms and the amount of medication
needed."  Click!! Does anyone know if this article is available
on-line, and, if so , how I could access it?
 
I live on a small island of 55,000 souls and I haven't found any other
'Parkies' here - there is no support group - and finding all of you
has been a real pleasure. This is truly the 'best of the net' and the
'global village' come true.
 
I'll finish by putting in my two 'hogpennies' worth re the list
structure - I agree completely with Barbara Patterson's recent post.
The list's strength is in its central focus - the 'funnel' effect -
one accessible point where all info about Parkinson's passes through.
How else would I have been able to discover the existence of the
Giladi article - and so easily?
 
Splitting it up might result in the 'which foundation?' effect in
North America that so many of us are unhappy about.  The walks in
Holland, Canada, and the USA are all about the importance of PD Unity.
Just the hint (from Kees Pap) of a World Wide Walk sent shivers down
my spine. I hereby volunteer for walking the section from New York to
Bermuda!
 
Barbara has created something unique and valuable. The growth of the
list (hitting the 800 and 900 member milestones) just over the past
year should be an indication of the need that it satisfies. As far as
I'm concerned, keep right on doin' what you're doin'.
 
All the best,
 
Janet Paterson    48, 7    [log in to unmask]    !!Bermuda!!