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a new voice
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a new voice
discovers an accepting and accessible listener
a list-ener

a list
of people
describing struggles and victories
commune-icating through a miraculous medium

a list
of humans
sharing their pain and joy
connecting in a profound way

a list
of siblings
becoming family


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Date:     01 October 1995
Subject:  Hello and Hormones
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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    !!Bermuda!!

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janet paterson
51/10 - sinemet/selegiline/prozac
almonte/ontario/canada - [log in to unmask]