On Tue 21 Jan, David Langridge wrote:
> <snip>
> It seems strange that although I have been following the list for almost two
> years I have seen no mention of this problem except in a posting from Ida
> Kampuis in October and amongst many other interesting things she sais <<<<
> An important difference between the two states of hyperkinesia is that the
> end of meds one is combined with high muscle tension end the other much less
> so. This makes the former the most troubling one. During the former walking
> is more impaired or impossible.>>>>. As mentioned above I have experienced
> this end of meds muscle tension.Also I have searched in the archives and
> found no mention of diphasic dyskenesia the only hit being the algorythm
> paper which I already had read.
> <snip>
> I think I have tried about everything to deal with the problem -sinemet with
> and without cardidopa, sinemet CR , halving tablets and taking at shorter
> intervals, no protein diet,pergolide (good), ropinoprol( not so good seems
> to make the dyskenesia worse) The only other regular drug for me is
> Seleginin twice a day and I've even tried knocking that out to see if it
> makes any difference.
><snip>
All of which brings me to some final points;
>
> 1. I can find no explanation of how this end of dose overdosing occurs.What
> is the mechanism?
>
> 2. How does all this tie up with the theory expounded so admirably by Brian
> Collins that the therapeutic window narrows with progress of the disease. I
> don't regard myself as far progressed in pd yet as soon as I started on
> Sinemet I began to experience the overdose effects aslbeit not during the
> "on" and this indicates to me that problems with sinemet do not always arise
> just through narrowing of the theraputic window due to progression of the
> disease.
>
> Any input would be gratefully received (Back to Basics has my support)
>
> David Langridge
>
=========================================================================
If you will forgive me for blowing my own trumpet a little, David, there is
one major thing that you have not done, and that is to make use of my
analysis program !! If I cast my mind back a few years when I was beginning
to hatch the concept of the program, I was just like you - casting around
desperately trying to find some sort of formula which would control my
symptoms. It became obvious that I was trying to keep too many balls in the
air at the same time; there was too much going on. Like any Engineer, I
decided that the only option was to write a program, so I did. Bear in mind
that my concept of the vanishing window (the notorious charts A & B ) were
just a twinkle in my eye at that stage.
It is obvious to me now where I went wrong - Instead of phrases like
'diphasic dyskinesia', I tend to refer to 'that lump on the graph'. It doesn't
have the same resonance somehow does it. All I can tell you is that it
worked for me.
There are two reasons why I introduced the program to the list:
1) To get a wider sample of people to try the system, and hopefully show
that it can cope with a wide range of symptoms.
2) Because it was clear to me from the questions which were being asked
through the list that there was a need for something like this.
Now I come to the sad bit. Out of the scores of people who took my write-up
enthusiastically, bombarded me with questions , and generally encouraged me
to think that I was providing a much-needed service, only 5 (yes Five) people
actually followed thruogh to the point of sending me data that I could analyse.
I am distressed and puzzled at this strange failure to follow through to the
end point. All you folk out there with the red ears know who I mean, and I am
sure that you have good reasons why you dropped out. Was it my write-up?
was it too technical / not technical enough, or maybe too demanding of your
time ? I think it was you, David, who said something about it being better to
get out and live your life rather than worry about details, so I guess that
make me the ant, and you the grasshopper. (It has just occurred to me that the
Internet Suite which I use with my Acorn RiscPC is written by a company
called ANT software. That must mean something!!
Just on the vague chance that anyone is interested, the URL to go to on
the web to find a full write-up of the program is:
http://www.ridgecrest.ca.us/~rfvetter/brianspd.html
If you get no response, split the URL in two:
Go to http://www.ridgecrest.ca.us/ - This gets you into the site.
Then go to ~rfvetter/brianspd.html This finds my page.
Regards
--
Brian Collins <[log in to unmask]>
