 |
 |
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 ----------- ** > > > > > > > > >