Greg L....

Mighty nice to see ya back on the List, m'dear...

Barb Mallut
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-----Original Message-----
From: Greg Leeman <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Wednesday, March 08, 2000 6:54 AM
Subject: Re: Rating scales. Was: Long term prognosis


>Good Morning!
>
>At one time I paid attention to the rating scales. As my
progression
>revealed more and more susceptibility to stress and it's negative
impact on
>my daily life, I became more and more convinced that it is far
too
>subjective from patient to patient for those in the medical
community to
>accurately rate patients.  Further, in my mind (and it is a
diseased mind)
>their is no relevance to be drawn. It simply doesn't matter.
>
>Rita, you have struck a nerve on my least favorite subject.
Cyclical days
>for PWP's and their care givers.  Mood swings to the nth degree.
Going from
>confident and happy to confused, skittish and depressed all in
the blink of
>eye. This,  at least for me is the single most important aspect
of what
>PWP's face.  Yet it is given little press or mention when the
symptoms of PD
>come rolling out.  It is time for PWPs and other chronically ill
people to
>demand that we need to start  to address this problem more
aggressively.
>
>It is good to be back. I hope all is well with everyone.
>
>Greg Leeman
>-----Original Message-----
>From: [log in to unmask] <[log in to unmask]>
>To: [log in to unmask] <[log in to unmask]>
>Date: Wednesday, March 08, 2000 9:23 AM
>Subject: Re: Rating scales. Was: Long term prognosis
>
>
>>Hi Phil,
>>As a PWP, I strongly agree with you re: the UPDRS not covering
some very
>>important areas of progression.   In fact, on numerous occasions
(probably
>>every office visit!!!) I have told my neuro/nurse "you don't ask
the right
>>questions to understand the impact or changes of the disease for
me".  I
>>truly wish that a broader scale could be developed.
>>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
>>
>>