You mention an interesting possibility. Iain has never had much of a tremor.
Rather, rigidity/slowness are his most obvious symptoms. You
suggest that he may have Parkinsonism rather than true
Parkinson's Disease. Can you tell me what would be the
difference in treatment between one and the other?
We, too, have wondered if he might be better off without any
medication, since nothing he has tried has helped more than
hindered - not sinement, sinement CR, parlodel, amantadine,
pramipexole, or eldepreyl. The side effects have always been
as debilitating as the condition itself, no matter what
combination or dosage levels we have tried. It is extremely
frustrating.
Thanks to all who have replied to my inquiry. We see the
neuro next month and will bring up some of the points some of
you have mentioned.
Barb Bates
Date sent: Wed, 27 May 1998 03:53:15 +0200
Send reply to: "Parkinson's Information Exchange" <[log in to unmask]>
From: Hans van der Genugten <[log in to unmask]>
Subject: Re: falling
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Hello Barbara,
Mon, 25 May 1998 16:00, Barbara Duffin-Bates <[log in to unmask]>, wrote:
>My husband (aged 57, PD 14 years) takes only sinement and
>eldepryl. He takes 3 100/25 tablets each day, broken in half,
>each dose taken 2 hours apart.
A) Compared with other PWP for 14 years a relatively low dose.
>He has always had a difficult time smoothing out his dosage
>levels. He will peak about 1 hour after taking a dose, be "on"
>for maybe 25 minutes, then be off again.
B) Peaking after 1 hour is normal with CR, but 25 min "on" is short.
A + B together suggest he might be UNDER-medicated, however....
>When he is off, he is very slow and stiff but at least he is
>relatively safe. When "on", he is very diskenetic and often
>falls, sometimes badly. He NEVER falls when he is off.
C) ...........dyskinetic when "on" suggests he is OVER-medicated.
D) falling can have several reasons:
1) caused by the dyskinetic movements he looses his balance
2) caused by side-effects of the Sinemet (e.g. dizzyness) or of
the eldepryl, or the combination of these two.
3) caused by low bloodpressure and/or static hypotension (= a sudden
going down of the bloodpressure after getting up from lying down or
standing straight after bending over).
>I was wondering if anyone else has noticed this phenomenon
>of falling only when on.
E) you didn't mention a tremor. No tremor can mean he might have
Parkinsonism instead of classic PD.
I know several PWP, who have Parkinsonism. They fell a lot when
they were using medication(s). After they stopped taking the meds
the falling stopped (after a few weeks).
>I might also add, for those interested in amantadine, Iain did
>try this some years ago. He said that he did feel better on it,
>but it made him hallucinate. That was not much fun and we
>took him off.
Concluding: your husband is feeling better in the periods he takes no
meds than in the periods that he does take his pills!
Being stiff seems to be a better choice than frequently falling.
My suggestion would be:
1) consider the possibility of Parkinsonism.
2) consult your neurologist and discuss a try-out-period of 3 months
without meds (or first 3 months without one and than 3 without the other)
3) if that doesn't improve the falling or worsens his other symptoms,
consider switching to other meds.
IMPORTANT: Don't take my word for it! I'm just another PWP puzzeling
along. Always consult your neurologist before making any
changes in your meds!!
Greetings, Hans. 44/dx5/eldepryl.
Barbara Duffin-Bates
Program Support
Vaughan Memorial Library
Acadia University
1-902-585-1378
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