Everyone,

I think it is very important to remember that on/off phenomena is  not the
same as end of dose wearing off. As Greg Sterling said it is like a light
switch.  It comes without warning.   While end of dose wearing off can
usually be felt.  My end of dose symptoms are restless leg syndrome (or what
I call wanting to retain movement by moving) and dystonia of the foot.

And, as I said in my earlier post, the worst part of this awful disease is
the emotional toll of an up and down day.  I am doing as well as I have done
physically in years with the second side pallidotomy coming to my rescue.
Know if Mick Jagger could help me find an emotional rescue, I would go out
and get shattered, sha doobie (there have to be some "Stones" fans out there
who understand what I mean.  Janet, cybergal! Translate for the masses.)

Greg Leeman
----- Original Message -----
From: Greg Sterling <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, March 08, 2000 8:07 PM
Subject: Re: On-Off (Shirley)


> Shirley,
> You ever throw a light switch?  That's what on-off feels like.  At least
for me.  It is not a
> gradual thing.  One minute I can be literally nimble as a gymanst.  The
next slow and
> cumbersome.  It's like a roller-coaster ride all day long.  The worst part
is that your moods
> run the same cycle.
>
> How did your neuro decide you don't have PD?  Did he come up with
something else?
> Do you respond to sinemet?
>
>
> Greg
> 47/35/35
>
> :)
>
>
> > ** Original Subject: Re: Rating scales.  Was: Long term prognosis
> > ** Original Sender: Edward Kleinmeyer <[log in to unmask]>
> > ** Original Date: Wed, 8 Mar 2000 10:30:30 -0500
>
> > ** Original Message follows...
>
> >
> > I agree with Greg. The mood swings are so bad,but according to this
neuro I
> > have been going to I don't have PD. I don't understand  his thinking. If
a
> > large amount of symptoms are there then what is going on?? Can some one
> > explain (on-off) and is there a certain amount of time or is it
different
> > for everyone? Shirley
> > -----------------------------------------------------
> > Click here for Free Video!!
> > http://www.gohip.com/freevideo/
> >
> > ----- Original Message -----From: Chris van der Linden
> <[log in to unmask]>
> > To: <[log in to unmask]>
> > Sent: Wednesday, March 08, 2000 6:49 AM
> > Subject: Re: Rating scales. Was: Long term prognosis
> >
> >
> > > >
> > > Dear Rita and others,
> > >
> > > As a movement disorder specialist I know the impact on daily living
for
> > > Parkinson patients very well.
> > > However, to use a scale to score this impact is not easy and therefore
> > > conventional scales are used. As a matter of fact the Hoehn and Yahr
scale
> > > and the Schwab and England scale are more than 35 years old and still
> > being
> > > used, which tells you something about the difficulty of creating a
newer
> > > scale.  Scales are usually designed by the physicians for research
> > purposes
> > > and should therefore be very objective.  A scale measuring the impact
on
> > > life has many subjective features and therefore not used by
clinicians.
> > As
> > > a matter of fact they may not even be interested in such a scale. It
would
> > > be wondeful, considering the extensive use of the internet, that
patients
> > > should come up with suggestions to create a scale for themselves to be
> > able
> > > to give other fellow patients an idea on their condition and to have
an
> > idea
> > > of the condition of the person they are "chatting" with.
> > > Anybody interested??
> > >
> > > Best regards,
> > >
> > > Dr. Chris van der Linden
> > >
> > >  I think it does prevent all but the "most open minded" neuro's from
> > > > comprehending the impact of the PD on daily/family living.  I have
also
> > > > suggested a questionaire for the Carepartner that could be a
checklist
> > > > completed in the waiting room (most of us have plenty of time
> > > > there!)....which could be helpful in the evaluation/suggestion/
> > > > modification/communication of treatment/medication.
> > > >
> > > > The other thing I notice is that as we "accept" the limitations of
the
> > > > progression of PD, the answers to some of the questions on the UPDRS
> > > improve.
> > > >  What bothered me in the beginning, may seem insignificant now in
the
> > > realm
> > > > of everyday living and frustrations.  Also my "mood" when I am asked
> > these
> > > > questions may vary.........if I am "on", I will answer one
> > way..........if
> > > I
> > > > am "off", I will usually give a more positive answer.  This seems a
bit
> > > > different than one might anticipate....but when I am "off" I do not
want
> > > to
> > > > talk, elaborate, define, think.........so therefore give the answer
that
> > > will
> > > > require the least followup information from me.
> > > >
> > > > So, how do we ever get the medical community to hear our requests
for an
> > > > updated version of an old problem.........?
> > > >
> > > > Rita Weeks 55/10
> > > >
>
>
> >** --------- End Original Message ----------- **
>
> >
>