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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
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----- 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
> >
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February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 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Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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