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Hi Folks,

I am having a frustrating period and wondered if anyone has experienced
similar symptoms to mine.

Quick reminder of my history: Diagnosed 2 yrs 9 mths ago after sudden onset
of right arm shaking on reaching out for phone etc, balance slightly
affected (a bit like drinking a strong beer on an empty stomach), noticed I
was carrying right arm bent bent almost as if in an invisible loose sling.
Condition rapidly worsened over 4 months then came under control with
Eldepryl 10mg/day and Sinemet CR taken one in morning and one in evening and
retirement from work. The period till end of Feb this year was really pretty
good, not much I could not do.

At end Feb this year following the adverse medical report on Eldepryl
neurologist suggested I come off Eldepryl. He, "Doubted that I would notice
any difference".  Well at first I did not, but gradually noticed longish
slow periods in the middle of the day.  The Neurologist did not examine me
this time because there was nothing much I could not do and at the time felt
pretty good.  He did examine me on the previous occasion  and suggested that
I could always take a half sinemet CR at midday as perhaps I was slightly
under dosed.  I did not bother because I did not want to take more than
necessary and was managing well.  However, bearing his suggestion in mind, I
started taking a half Sinemet CR at midday from mid April this Year.

This increase seemed to fill the gap for quite a while but in the last month
am having trouble with my writing and finding a Sinemet CR seems to fade
sometimes after about 4 hours. With the middle of the day being the problem
area I increased my midday dose to a full Sinemet CR from 3 days ago.  The
last 3 days have been pretty good walking up hills, driving, typing and
playing a reasonable game of boules (a game where competitors throw a
heavyish tennis sized ball 20-40 ft and try to be closest to a target ball).

Now here is the part that prompted the title and on which I would be
grateful for your comments and experiences because it is really getting to
me.  I can hardly write AT ALL when really "off" and struggle like mad to
get one signature on paper. The actual writing is VERY tiny and painfully
slow to perform.  But, at the same "off" time I can throw and catch a ball,
handle a cup and saucer and even swing a golf club and connect properly with
the ball.  All these last examples can be carried out in a way that would
not suggest I had a problem to an onlooker or even myself.

In fact, to digress slightly, a couple of weeks ago I asked a post office
counter clerk to help me with 3 lines of an address on a form (explaining
that I had a hand disability) and received a reply of, "Can you ask someone
else to help you because there is a queue". (Three people) I went out to the
car park had my wife complete it and went back to complain. I explained it
was embarassing enough having such a problem without looking to a queue of
strangers for help, talk about privacy?  Anyway the reason for this
digression is that I was told by the counter staff that, "Sorry, but you did
not LOOK as if you had anything wrong with you".  Goodness, what does one
have to look like, Quasimodo?

I have just come "on" while typing this but it is 3h 25mins since the midday
Sinemet.  I have been taking it a couple of mins before eating but will now
try 30mins pre meal as I do in the morning.

Just one more thing, and apologies if I bore you.  This morning the postman
came early with a parcel.  I woke from deep sleep, cancelled our touch pad
burglar alarm, rushed down stairs, worked all the bolts and found the right
keys on the key bunch,and, after coming back upstairs with heart still
pounding filled a sheet of paper with firm strong writing.  This is 14hrs
since the last tablet.  Strange? Or do others find the same?

I know I can manage without writing but it is because the other movements
are OK that I get so frustrated when I am brought up short unable to write.
I am starting to worry about presenting my Visa card now!

To those of you who patiently read what I actually intended to be a fairly
short request for confirmation that others also had this problem thanks, it
seems to have relieved me just relating this, but I would really be
interested in other people's experiences concerning the matter of being able
to do most things except WRITE.  All for now.

Ernie.


Ernie Peters ([log in to unmask])