On Mon 07 Sep, Bob & Joy Graham wrote:
> Dear List members:
>
> Some time ago there were some excellent postings regarding the "on/off"
> state/syndrome.
>
> I have filed them away so carefully that I have lost them.
>
Hello Joy: I am not sure if you are referring to this subject. I came into
the discussion rather late, and attached are the relevant messages. Any use?
Regards
--
Brian Collins <[log in to unmask]>
============================
Date: Tue, 18 Aug 1998 16:49:05 +0000 (GMT)
From: Brian Collins <[log in to unmask]>
Subject: Re: Reducing drugs and on/off
To: Debbie White <[log in to unmask]>
On Mon 17 Aug, Debbie White wrote:
> Brian,
>
> Thanks for your always intelligent assessment of the situation.
>
> You suggest that "it may be worth going back to minimal
> or no dosage of any Parkinson's medication for 48 hours (Not a pleasant
> prospect, I know), and starting afresh.
> What do you think?"
>
> My mother is in the process of reducing her Requip. She went from 7 mg.
> 3x/day to 7mg/7 mg/5 mg. and felt terrible. Today she is at 7/6/6 and said
> she's going up again if she continues to feel this bad. So I would say that
> the drugs are doing something -- just not what they are capable of doing
> for others.
>
> Also, in November, my mother was slowly taken off all drugs and felt awful
> -- she cancelled her trip here for Thanksgiving.
>
> She is going to a new doctor this week. I hope that a fresh look at things
> may help. Thank you for all your help and concern. I don't know how my
> mother functions without something like this list -- it is the only way I
> can endure her Parkinson's.
>
>
>
> Debbie White
> [log in to unmask]
>
> > >
> >
>
>
>
Hello Debbie, I accept that a zero drug calibration would be unwise in view
of your mother's present condition. Perhaps I could help a bit if you send
me a list of all her parkinson's - related medication: Type, time and quantity,
And I can at least check to see where I would expect the high-spots to appear.
The next request is going to set the fur flying, but it has to be said: I
can learn very little from descriptions such as 'feeling awful' and 'feeling
terrible'. I know that you are operating at long range, which makes it doubly
difficult, but I think you have been on the list long enough to know the sort
of symptoms you might expect; nausea, resting tremor, diskinesia, freezing,
rigidity, sleepiness - they all mean specific things to us long-term PWPs,
and without that sort of information, we may very well be pulling in the
wrong direction.
I'll keep my fingers crossed for you - if it upsets her, you can blame
it on me!
regards,
--
Brian Collins <[log in to unmask]>
Date: Tue, 18 Aug 1998 16:49:05 +0000 (GMT)
From: Brian Collins <[log in to unmask]>
Subject: Re: Reducing drugs and on/off
To: Debbie White <[log in to unmask]>
On Mon 17 Aug, Debbie White wrote:
> Brian,
>
> Thanks for your always intelligent assessment of the situation.
>
> You suggest that "it may be worth going back to minimal
> or no dosage of any Parkinson's medication for 48 hours (Not a pleasant
> prospect, I know), and starting afresh.
> What do you think?"
>
> My mother is in the process of reducing her Requip. She went from 7 mg.
> 3x/day to 7mg/7 mg/5 mg. and felt terrible. Today she is at 7/6/6 and said
> she's going up again if she continues to feel this bad. So I would say that
> the drugs are doing something -- just not what they are capable of doing
> for others.
>
> Also, in November, my mother was slowly taken off all drugs and felt awful
> -- she cancelled her trip here for Thanksgiving.
>
> She is going to a new doctor this week. I hope that a fresh look at things
> may help. Thank you for all your help and concern. I don't know how my
> mother functions without something like this list -- it is the only way I
> can endure her Parkinson's.
>
>
>
> Debbie White
> [log in to unmask]
>
> > >
> >
>
>
>
Hello Debbie, I accept that a zero drug calibration would be unwise in view
of your mother's present condition. Perhaps I could help a bit if you send
me a list of all her parkinson's - related medication: Type, time and quantity,
And I can at least check to see where I would expect the high-spots to appear.
The next request is going to set the fur flying, but it has to be said: I
can learn very little from descriptions such as 'feeling awful' and 'feeling
terrible'. I know that you are operating at long range, which makes it doubly
difficult, but I think you have been on the list long enough to know the sort
of symptoms you might expect; nausea, resting tremor, diskinesia, freezing,
rigidity, sleepiness - they all mean specific things to us long-term PWPs,
and without that sort of information, we may very well be pulling in the
wrong direction.
I'll keep my fingers crossed for you - if it upsets her, you can blame
it on me!
regards,
--
Brian Collins <[log in to unmask]>
Date: Sun, 16 Aug 1998 01:46:52 +0000 (GMT)
From: Brian Collins <[log in to unmask]>
Subject: Reducing drugs and on/off
To: Parkinson's Information Exchange <[log in to unmask]>
On Thu 13 Aug, Debbie White wrote:
> I wrote last night because my mother Joyce (68/1 year) is having a tough
> time right now and her doctor suggested that she may have some other
> Parkinsonian disease. After receiving reading some informative pieces
> suggested by some on this list, it seems to me more and more that she has
> PD.
>(snip)
>
> What I think is confusing the issue is that my mother doesn't (never has)
> have clear on/off periods. However, I don't think one can conclude from
> this that the drugs aren't working. So my next question is: Isn't it
> possible to say the drugs are working without feeling them kick in? Any
> thoughts?
> Debbie White
> [log in to unmask]
>
>
>
hello Debbie, I remember well the time whwn you joined us and had us running
in circles trying to understand your mother's stmptoms. Sadly, I can only
conclude that she has one of the more rapidly degenerating varieties of PD.
because of the unexpectedly high dosages of drugs which she has tried.
But let's take a deep breath and think about it; in particular the business
of switching off and on. In my long experience, noticeable switching (say
less than 5 minutes from heavily off to noticeably on has only come to bother
me in recent years: I would not really expect a 1 year ( or even a 5 year
PWP) to even know what we are talking about. (one point I should clarify
is those unfortunate people who have been told to take a large dose of
levadopa in the early morning to 'Kick Start' their system. Of course they
will detect a noticeable off/on effect, because they are rushing from
underdose; right through the control point ( the place they should have
aimed for), into a heavily overdosed condition. I now have abstracts from
2 or 3 recent papers which are coming round to the conclusion that forcing
levels of levodopa above the minimum required can cause more
'wear and tear on the Dopamine system. .
The 'soft landing 'of early stages PD is explainable quite easily: It is
due to the one thing which we know fairly well, that a newly diagnosed PWP
has (about) 20% of his/her Dopamine-producing cells intact and functioning.
It takes a LOT of levodopa to overwhelm that 20% of 'normal cells.
What I am suggesting, Debbie, is that it may be worth going back to minimal
or no doseage of any Parkinson's medication for 48 hours (Not a pleasant
prospect, I know), and starting afresh.
What do you think?
Regards,
--
Brian Collins <[log in to unmask]>
--
Brian Collins <[log in to unmask]>
