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Hi Folks,

This is to thank you all for being so patient, understanding, and supportive
over my "Does anyone have these symptoms?" memo.

Firstly, I would like to say that I fully understand that there are others
in a far worse state than I am and I did not intend to appear selfish or
self-pitying. Grovel, Grovel. I DO have the other problems that all of you
suffer in varying degrees, my legs do wobble on stairs, I do get tired,
struggle shaving, worry about travel, suffer the next day if I can't sleep
and work myself into a real state if dealing with unhelpful post office
clerks.  It was just that with most symptoms I can at least muddle through
even if off but lately the hand writing is such that off means
OFF..NOTHING...ZILCH...DEAD STOP.
Add to that the old bogey of, "Today my hand, what what will it be
tomorrow?" ... well you know what I mean.

I had no intention to write in about it really.  It was just that I sat down
to look at some reports from my mother's accountant which required me to
write some comments against certain figures.  My hand was terrible and I
quickly realised it was going to be impossible to do.  I had no forewarning
of this because generally I felt reasonable.

I got mad. I went around testing my hand on other things, I bounced and
caught a squishy "Stress ball" and even disappeared into the garden with a
golf club and some practice balls to see what parts of my body WOULD function.

I surprised myself with the golf, I actually have not played golf for 2
years but I hit most of the balls true.  This at first surprised me because
the "swing" in golf is actually highly complex.  But then I reasoned that
with 2 arms locked together the problem with the affected arm would be
masked. Also, the swing starts relatively slow and accelerates  smoothly
unlike signatures like mine which have always been very sharp fast affairs
which I find impossible to duplicate slowly.

So then I decided to write to my friends in the group.  "Friends in the
group"?  Do you know where I got that phrase from?
I was explaining to my mother that the reason we were disappointing her by
only visiting her for 2 weeks in Cyprus instead of the usual 3 weeks, was
that that I was worried about coping for so long.  She said, "Oh, I thought
it might be because you did not want to be away from your "Friends in the
group".  I laughed and said of course not, what a funny idea. But the phrase
stuck in my mind.

I realised, YES, of course, you ARE my friends and, although I never used
those words myself, it must have come across to my mother like that.

So, I turned to you in a moment of extreme frustration.  I KNOW about
writing and PD.  I KNOW the score.  I suppose I just wanted to share my
problem and get some feedback on the subject from others.

I typed it out in a hurry because we were going out that evening and I was
determined to send it before we left. On the way out Julia said to me, "You
know what people are going to say don't you?". I squirmed in the car seat
and said, "Yes, they'll say if that is all you have to worry about..".

On our return, it was with trepidation that checked the mail.  The first
letter was Jacob's.  I read the first sentence.........ouch!   I'm going to
be crucified!   I muttered, "Fair comment", to Julia who was looking over my
shoulder, but adreniline and pulse level shot up and I dreaded the next
letter. It was from Barbara.  What an Angel.  I love you Barbara, I really
do.  (Even if Mark doesn't Hee! Hee!)

After that I received only supportive letters, from the group and  privately
expressing similar frustrations.  In particular Maryhelen Davila was good
enough to reinforce her memo via the group with a more detailed brilliant
(and very long) memo direct to me relating her experiences and giving very
informative drug dosage and timing details.

Others also gave both very useful and very encouraging advice and support
for which I am really grateful.  I now believe that it was unrealistic for
my neurologist to expect me not miss coming off Eldepryl.

A point we should all bear in mind is that if we compare the number of
members in this group compared to the actual messages received, it is
apparant that the vast majority of members are "listeners" rather than
speakers.  (I'm not sure about the term "Lurkers", it sounds sinister or
unkind).  I am certain that these people will gather much information and
strength from just reading messages from others even if they are reluctant
or unable to participate very much. I'm sure that for every subject
discussed there are at least ten times more people interested and learning
from it than are actually writing in. So, keep it all going.

Thanks folks you've come up trumps yet again.

P.S.  Barbara, I love that giggle.


Regards, Ernie.



Ernie Peters ([log in to unmask])