 |
 |
Everyone, I think it is very important to remember that on/off phenomena is not the same as end of dose wearing off. As Greg Sterling said it is like a light switch. It comes without warning. While end of dose wearing off can usually be felt. My end of dose symptoms are restless leg syndrome (or what I call wanting to retain movement by moving) and dystonia of the foot. And, as I said in my earlier post, the worst part of this awful disease is the emotional toll of an up and down day. I am doing as well as I have done physically in years with the second side pallidotomy coming to my rescue. Know if Mick Jagger could help me find an emotional rescue, I would go out and get shattered, sha doobie (there have to be some "Stones" fans out there who understand what I mean. Janet, cybergal! Translate for the masses.) Greg Leeman ----- Original Message ----- From: Greg Sterling <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, March 08, 2000 8:07 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 ----------- ** > > > >