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At 11:43 PM 2/21/2002 +0000, you wrote: Problem is that, although we all have PD but almost none of us have the similar enough make up. What works for me may not work for you. And what works best for you probably would not for me. >Ivan, and everyone on this list, > >You make some very interesting points. I think we can learn a great deal >from each other . ( I think not just from Janet Reno's health issues) > ie as you say 1) diet-medication-protein-on/off cycles > 2) timing and dosage of Medications > >I wonder if there has been a proper survey of how through trial and error >PWP's have found a best practice answer. (which my Nuro who has no >personal experience does not even have an answer to) > >I am for ever struggling with diet and the effects of eating protein at >the wrong time. Medication dosage and timing is another issue which is >mysterious and unpredictable. Are there any best practice guides or rules >of thumb which might help relatively inexperienced PWP's like me to learn >from other peoples experiences and mistakes. Has anyone on this list >compiled a list of best practices which we could share. Is there anyone on >this list who is interested in doing such research or has done it? > >Just think how valuable properly compiled anecdotal/ experiential best >practice could be to fellow PWP's. I for one would be interested. > >I am 53 diagnosed 4 years ago. > >Shekhar ( Manchester UK) > > >----- Original Message ----- >From: Ivan M Suzman >Sent: 20 February 2002 17:31 >To: [log in to unmask] >Subject: Janet Reno's health issues need discussion > >Hello Murray Charters, and PIEN'ers... > > Within the Parkinsonian community , many of us believe >that there are vitally important reasons for people like us to be >concerned about Janet >Reno's well-being, beyond caring for her as an individual.. Her potential >functioning >during her run for governor of Florida , no matter what is done, >remains a central issue, and needs the fullest discussion possible. > > Are we getting a complete picture of how she is managing the huge >demands upon her? >Sometimes reporters leave certain critical information unprinted for >good reasons. >A patient's right to privacy must be honored. But Janet's personal >safety, and >the effect that her PD might have on the public's safety, is an >unresolved issue. >She is in year 7 or so of PD. Yet I have to ask, how well will she be in >year 8,9, or 10? >Thankfully, the PD has been slowly appearing in her, but what if the pace >of it worsens? > > It would be helpful for our community to know how much Mirapex and how >much >Sinemet, and which kinds (regular? CR? generic? strength) of Sinemet Dr. >Koller prescribes for >her. All of us can benefit from our collective comments on her response >to medications , and >that includes what her dose schedule is each day. It would be helpful to >know if >she follows a Parkinsonian's recommended diet. I also wonder if, among >her >schedulers, someone understands the diet-medication-protein-on/off cycles >which >many of us go through, in our daily lives. > > When I am stressed , more PD-related symptoms become visible. At >the same time, being in year 17 of PD, the disease affects me noticeably >anyway. Precision timing and dosage of my medications are part of my >well-being > > I feel that we are fortunate that a Parkinsonian is a candidate, >but I also feel that more communication about both >Janet's bilateral (or is it unilateral ?) tremors, and her recent >fainting, is >essential. Perhaps she could benefit from an increase in Sinemet, >to control tremors. And I wonder if a reduction in MIrapex >might prevent low blood pressure, if she experiences >that when she has fainted in public. > > No matter what one's political leanings, as >a Parkinsonian, I care about her. I do wish her very well, and hope that >Dr. Koller >will be able to adjust her medications , or at least, >help her to plan a schedule that is less stressful. > >Ivan Suzman >Portland , Maine >52 (current age)/39 (age at diagnosis)/36 age >when visible symptoms first appeared > > >On Mon, 18 Feb 2002 13:05:06 -0800 Murray Charters ><[log in to unmask]> writes: > > Reno's doctor says Parkinson's should not affect run for office > > By Nancy McVicar > > Health Writer > > Posted September 4 2001, 5:49 PM EDT > > > > The doctor who has been treating former Attorney General > > Janet Reno for Parkinson’s disease for the past year says > > there is no medical reason she should not run for governor. > > > > “We had a very long and frank discussion about it, and she > > wanted to know all the potentialities,” said Dr. William Koller, > > professor of neurology at University of Miami School > > of Medicine and director of the Movement Disorders Center > > at UM/National Parkinson Foundation. Reno gave him > > permission to speak about her condition. > > > > Koller said Reno’s disease has progressed slowly since her > > diagnosis seven years ago. She requires only low doses of > > two drugs, Sinemet and Mirapex, to control her symptoms, > > he said. > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsnGet more from the >Web. FREE MSN Explorer download : http://explorer.msn.com > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn