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>Return-Path: <[log in to unmask]> >Date: Thu, 22 Jul 1999 17:09:42 -0500 >From: HotRod <[log in to unmask]> >Subject: My Day tune - Up Time # 2 Plain Text >To: [log in to unmask] > >I found that I had Parkinson 5/24/1995 two weeks after retiring... >> >> four years ago >> and i assume you had symptoms for some time before diagnosis? >> how old are you now? > > > I had a left knee replaced and had gone to the Dr. on my final visit. He >noticed my feft hand had a slight trimer and my right thum had a slight >shake. He asked me how long I had that, i told him about a month. Latter a >Medic that worked in First Aid told me he had noticed it about a year befor >but he said nothing at that time, I had gone in to get my eyes cleaned. >I am now 65 > >I have been on Sinemet CR from day 1. I have Sinemet CR 50/200. >> >Sinemet CR. 25/100. Sinemet 25/100. Sinemet 10/100 >> >The 5:50 pm Sinemet, if I feel like my body is running out I take >> >the reg. other wise I take the CR. >> >My medication schedule was set by my Nuero, I am on my third one and >> >every one was different... >> >> do you mean that each neuro's approach or advice was different? >> have you been to a movement disorder specialist? >> or at least a neuro who specializes in pd? >Each neuro's advice was different. No I have not been to a movement disoder >specialist or a nuero who specializes in pd. >where do you live? >> >> >I was told to fine tune it, and every time I cut it that changed >things... >> >> what exactly was meant by 'fine tuning'? >> did you take it to mean reducing your overall med intake? >I live in Bedford Indiana >I took it to mean Reducimg my over all med intake to a point where it still >worked for me. >what workes for me may not work for you. >where do you live? >> >> >I was told to fine tune it, and every time I cut it that changed >things... >> >> what exactly was meant by 'fine tuning'? >> did you take it to mean reducing your overall med intake? >where do you live? >> >> >I was told to fine tune it, and every time I cut it that changed >things... >> >> what exactly was meant by 'fine tuning'? >> did you take it to mean reducing your overall med intake? >How does it fit with my meals? It don't >> >I usually eat one meal I day at the senior Citizens Club. >> >I know what I eat makes a difference, I didn't know when made a >> >difference... >> >> what time of day do you have that meal? >> 'when' is certainly a concern, as time marches on, >> since a lot of us find that a large [meaning normal sized] meal >> taken prior to meds can render the subsequent meds virtually useless >I eat at 11:15 am , I did eat breakfast cerial or oats. then I read not to >take Sinemet with dairy products. so I quit, now I have juice and coffee and >have dropped 20 pounds, down to 112 lbs >my friends want to know what my problem is. >>I checked my notes and this has been going on for at least 2 weeks... >> >> what kind of notes have you been keeping? >> and what exactly do you mean by 'this has been going on...'? >> do you mean the evening 'drop off' of your med 'coverage'? >> >> has something changed in the past two to three weeks? >> i.e. your med intake, your diet, any supplements you might take, >> any other changes to your daily regimen, lifestyle, stress, etc.? >> >I have to write down what and when I take my medication. >this going on I mean when the Sinemet quits. I do not know why. >My neuro had me on Sinemet CR 25/100 5 times a day. then went to 1 Sinemet >CR 50/200 at 7:00 am and 1:30 pm and Sinemet Cr 25/100 at 11:00 am. >Eldepryl 5 mg at 7;00 am and at noon >I asked if I could try cutting back on the Sinemet. I got the OK. Over a >peroid of 3 or 4 weeks I had it down to taking 1/2 Sinemet Cr 25/100 5 >times a day. >things were fine. then I started to run out of med in my body at around 8:00 >or 9:00 pm rather than take more.I just done with out >When my mediation is working I don't know I have Parkinson... >> >> perfect! >> this is the way things should be >> particularly at your 'medium-rare' stage [!] >> >> >I have not tried a daily analysis did not know there was one. >> >I will try to find it... >> >> brian collins has put together a med effectiveness analysis scheme >> maybe he will comment on it >>it's available through the 'james' website >> where the list archives in the u.k. are kept >> [see my website below and follow the links to pienet/words] >> >> when last did you see your latest neuro? >> have you discussed these recent changes with her/him? >I see him about every 3 month's. next appoinment is Aug 13 th >> as a former 'medium rare timer' now edging toward plain 'medium' >> [as opposed to 'old timer', at least in pd terms] >> i think you might be progressing to the point where >> pro-active management of your meds becomes >> more important >> >> any other opinions from other 'medium timers'? >janet >> >> janet paterson >> 52 now / 41 dx / 37 onset >> snail-mail: PO Box 171 Almonte Ontario K0A 1A0 Canada >> website: a new voice <http://www.geocities.com/SoHo/Village/6263/> >> e-mail: <[log in to unmask]> >> >> > janet paterson 52 now / 41 dx / 37 onset snail-mail: PO Box 171 Almonte Ontario K0A 1A0 Canada website: a new voice <http://www.geocities.com/SoHo/Village/6263/> e-mail: <[log in to unmask]>