Hey Shirley
Not only will I cross my fingers for you, but also my toes!!  I wish you all
the best on April 6th.  Until then, keep that up beat (Irish Setter)
attitude going!!
Kelly in Calgary
----- Original Message -----
From: Edward Kleinmeyer <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, March 08, 2000 7:59 PM
Subject: Re: On-Off (Shirley)


> Yes Kelly,I will be going to Iowa City,Iowa April 6th,A movement Disorder
> clinic. Cross your fingers and say your prayers that this will be my last
> step to finding the answers. Shirley
> -----------------------------------------------------
> Click here for Free Video!!
> http://www.gohip.com/freevideo/
>
> ----- Original Message -----
> From: Kelly Grant <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Wednesday, March 08, 2000 5:12 PM
> Subject: Re: On-Off (Shirley)
>
>
> > Howdy Shirley
> > For 11/2 years I have had a severe tremor in my left side (leg, arm.
> hand),
> > and slow to the point of loss of use.  My tremor is there while resting
> and
> > during action.  My Neurologist kept telling me that I did "not" have PD!
> He
> > ran every test known to man (bloodwork, MRI, bone scan, etc) - all came
> back
> > fine.  He told me he could give me medication to ease the tremor, but
was
> > unsure of the cause/reason it was there.  I opted not to take the meds,
> but
> > rather to get to the bottom of this.  This past January I went to a
> Movement
> > Disorder Clinic and saw a different Neurologist.  She new right away
that
> I
> > had PD.
> > Are you going to a movement disorder clinic???
> > Kelly in Calgary
> > ----- Original Message -----
> > From: Edward Kleinmeyer <[log in to unmask]>
> > To: <[log in to unmask]>
> > Sent: Wednesday, March 08, 2000 3:10 PM
> > Subject: Re: On-Off (Shirley)
> >
> >
> > > Greg.Thanks for responding. When the tremors and stiffness are there
> then
> > > that is an (on )? This Neuro said (you do not have PD) This was after
he
> > had
> > > me put my thumb and finger together several times,touch my finger to
his
> > > then to my noise. Sent me for blood work of Thyroid and Enemia,both
> > > neg.checked my reflexes with his little hammer.That was about it. When
I
> > > tried to pen him down all he said was it's inherited and gave me
> MYSOLINE
> > 50
> > > mgs. Any thoughts?? Shirley
> > > -----------------------------------------------------
> > > Click here for Free Video!!
> > > http://www.gohip.com/freevideo/
> > >
> > > ----- Original Message -----
> > > From: Greg Sterling <[log in to unmask]>
> > > To: <[log in to unmask]>
> > > Sent: Wednesday, March 08, 2000 12:07 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 ----------- **
> > > >
> > > > >