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In message <[log in to unmask]> Parkinson's Disease - Information Exchange Network writes: > Hi, Ron -- > >Some patients exaggerate their symptoms., others minimize them. Some do both > at > >different times. Earlier in the course of my wife's PD, she put on a "really > >good show" every time we would go to her neurologist. > > Perhaps your wife also grew up as I did with the strong taboo against > "complaining". After five years of PD, and my showing my best side to my > neurologist in the 30 minutes a year that I see her, I realized she will > need much more information to know how to advise me at the inevitable > point when the sinemet's effectiveness will someday fizzle. Other posts > like yours on the net helped bring this home to me. I put out a request > to the list asking how other people assembled information, and received a > few responses, all of which were very helpful. > > This is the "protocol" that I used: For six fairly typical days, I kept > records. On paper I charted weight, blood pressure, bowels, menstrual > cycle, sleep, food, water, medications, and "alternative therapies" ( t'ai > chi, power walks, singing). Then on a small tape recorder, I'd log in > every hour or so to report very briefly on just three things: movement, > pain and mood. Without even having to replay the tape, I started to > recognize the patterns of twisting vs. freezing and the windows of time > when moving is "normal". Just before meeting with my neurologist, I > typed up a one-page profile of an "average" day. She seemed to appreciate > it -- "you've saved me from asking all these questions" -- and included it > in my file. I learned many things, especially the limits to stoicism! > > Mary Yost, 48, PD diag. '91, recovering workaholic, miles to go before I > sleep at least til Udall passes > [log in to unmask] Bob Howard, occasionally known formally as: Robert B. Howard <[log in to unmask]> 1320 Wisconsin St. Hudson, WI 54016 Voice phone (714) 386 3596