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I try to keep that Irish Setter attitude. 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 7:54 PM
Subject: Re: On-Off (Shirley)
> 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 ----------- **
> > > > >
> > > > > >
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August 2003, Week 5 August 2003, Week 4 August 2003, Week 3 August 2003, Week 2 August 2003, Week 1 July 2003, Week 5 July 2003, Week 4 July 2003, Week 3 July 2003, Week 2 July 2003, Week 1 June 2003, Week 5 June 2003, Week 4 June 2003, Week 3 June 2003, Week 2 June 2003, Week 1 May 2003, Week 5 May 2003, Week 4 May 2003, Week 3 May 2003, Week 2 May 2003, Week 1 April 2003, Week 5 April 2003, Week 4 April 2003, Week 3 April 2003, Week 2 April 2003, Week 1 March 2003, Week 5 March 2003, Week 4 March 2003, Week 3 March 2003, Week 2 March 2003, Week 1 February 2003, Week 4 February 2003, Week 3 February 2003, Week 2 February 2003, Week 1 January 2003, Week 5 January 2003, Week 4 January 2003, Week 3 January 2003, Week 2 January 2003, Week 1 December 2002, Week 5 December 2002, Week 4 December 2002, Week 3 December 2002, Week 2 December 2002, Week 1 November 2002, Week 5 November 2002, Week 4 November 2002, Week 3 November 2002, Week 2 November 2002, Week 1 October 2002, Week 5 October 2002, Week 4 October 2002, Week 3 October 2002, Week 2 October 2002, Week 1 September 2002, Week 5 September 2002, Week 4 September 2002, Week 3 September 2002, Week 2 September 2002, Week 1 August 2002, Week 5 August 2002, Week 4 August 2002, Week 3 August 2002, Week 2 August 2002, Week 1 July 2002, Week 5 July 2002, Week 4 July 2002, Week 3 July 2002, Week 2 July 2002, Week 1 June 2002, Week 5 June 2002, Week 4 June 2002, Week 3 June 2002, Week 2 June 2002, Week 1 May 2002, Week 5 May 2002, Week 4 May 2002, Week 3 May 2002, Week 2 May 2002, Week 1 April 2002, Week 5 April 2002, Week 4 April 2002, Week 3 April 2002, Week 2 April 2002, Week 1 March 2002, Week 5 March 2002, Week 4 March 2002, Week 3 March 2002, Week 2 March 2002, Week 1 February 2002, Week 4 February 2002, Week 3 February 2002, Week 2 February 2002, Week 1 January 2002, Week 5 January 2002, Week 4 January 2002, Week 3 January 2002, Week 2 January 2002, Week 1 December 2001, Week 5 December 2001, Week 4 December 2001, Week 3 December 2001, Week 2 December 2001, Week 1 November 2001, Week 5 November 2001, Week 4 November 2001, Week 3 November 2001, Week 2 November 2001, Week 1 October 2001, Week 5 October 2001, Week 4 October 2001, Week 3 October 2001, Week 2 October 2001, Week 1 September 2001, Week 5 September 2001, Week 4 September 2001, Week 3 September 2001, Week 2 September 2001, Week 1 August 2001, Week 5 August 2001, Week 4 August 2001, Week 3 August 2001, Week 2 August 2001, Week 1 July 2001, Week 5 July 2001, Week 4 July 2001, Week 3 July 2001, Week 2 July 2001, Week 1 June 2001, Week 5 June 2001, Week 4 June 2001, Week 3 June 2001, Week 2 June 2001, Week 1 May 2001, Week 5 May 2001, Week 4 May 2001, Week 3 May 2001, Week 2 May 2001, Week 1 April 2001, Week 5 April 2001, Week 4 April 2001, Week 3 April 2001, Week 2 April 2001, Week 1 March 2001, Week 5 March 2001, Week 4 March 2001, Week 3 March 2001, Week 2 March 2001, Week 1 February 2001, Week 4 February 2001, Week 3 February 2001, Week 2 February 2001, Week 1 January 2001, Week 5 January 2001, Week 4 January 2001, Week 3 January 2001, Week 2 January 2001, Week 1 December 2000, Week 5 December 2000, Week 4 December 2000, Week 3 December 2000, Week 2 December 2000, Week 1 November 2000, Week 5 November 2000, Week 4 November 2000, Week 3 November 2000, Week 2 November 2000, Week 1 October 2000, Week 5 October 2000, Week 4 October 2000, Week 3 October 2000, Week 2 October 2000, Week 1 September 2000, Week 5 September 2000, Week 4 September 2000, Week 3 September 2000, Week 2 September 2000, Week 1 August 2000, Week 5 August 2000, Week 4 August 2000, Week 3 August 2000, Week 2 August 2000, Week 1 July 2000, Week 5 July 2000, Week 4 July 2000, Week 3 July 2000, Week 2 July 2000, Week 1 June 2000, Week 5 June 2000, Week 4 June 2000, Week 3 June 2000, Week 2 June 2000, Week 1 May 2000, Week 5 May 2000, Week 4 May 2000, Week 3 May 2000, Week 2 May 2000, Week 1 April 2000, Week 5 April 2000, Week 4 April 2000, Week 3 April 2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 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 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, 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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