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very interesting. i wish i would of started a diary when i was DX 17 years, 1 pallidotomy and one coming up next week ago. keep it up, you wont be sorry. Burdette Anderson al Message----- From: Nilo Sarmiento <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Tuesday, March 06, 2001 2:01 AM Subject: Diary of New Parkinson's Patient >To all contributors to the listserv, thank you for the valuable >service/support you have provided. > >On Tuesday, Feb. 27, 2001, I was "formally diagnosed" as having the >symptons of PD. I say "formally," because I have had some symptoms for some >time, but whenever I saw my neurologist, he was not sufficiently convinced >that the symptoms were those of PD. Being 64 years old, going on 65, he >felt that the symptoms could be those of old age (as brain cells die due to >age, the resulting deterioration shows itself in the symptoms that could >be associated with Parkinson's). > >Finally, my wife came with me, and told my doctor all her observations (she >has done a lot of reading on PD, much more than I have!!). > >To make a long story short, the doctor prescribed sinemet the 25/100 >combination. His only directions were: take one tablet before a meal, three >times a day. This was not the first time I had taken a prescription with >such general directions. And it was not until I began to actually follow >those directions that I found them to be too general. If there would be so >many variations in the times of my meals, how could I measure the duration >of their effect. > > From the literature that came with them. I learned that: >1. Sinemet works best when taken on an empty stomach; >2. Vitamin B6 interferes with the effectiveness of levodopa, when taken >alone, but not when taken with carbidopa; and that some food have a good >measure of B6 (bananas, egg yolk, meat, peanuts were specifically mentioned.) > >Re "three times daily before a meal," absent any prohibition to the >contrary, and in light of the specific note that sinemet works best when >taken on an empty stomach, I decided to divide the 24 hours into 3 segments >of 8 hours each , and I figured that at least for now, 7 am, 3 pm, and 11 >pm were my pill time. > >Re food, I am a banana nut and a peanuts nut... but I decided to give >sinimet (and me!) the benefit of the doubt,and give it every chance to >work: From here on, no bananas and peanuts, even though they might be OK, >because of carbidopa. No multi-vitamin which has much as 300% DR of B6. >This is part of my effort to eliminate any element considered a potential >levodopa interferent. > >I decided to start a diary, in an Excel spreadsheet format; and I am doing >all this as part of my own research. The reason for the 3 segments of 8 >hours, is to find out how long the effect of each pill lasts, or if it even >has any effect, positive or negative on any of the symptoms. I do not >expect to see any noticeable improvement until at least a month on this >regimen. But the only way to determine improvement is for me to make some >detailed observations. > >As for my attitude, I have fully accepted the fact that I could have PD, >and that I will need to work around it. As the Roman poet Horace would say: >Fit patientia quicquid est corrigere nefas >This is echoed by the Serenity Prayer, which I am sure most of us know by >heart: >God grant me: >Serenity to accept the things I cannot change; >Courage to change the things that I can; and >Wisdom to know the difference. > >Here then are the hi-hlights of the first few days.. > >February 27. Tuesday, I took the first pill just before lunch, and the >second just before dinner around 7 pm. > >February 28, Wednesday, I had my first pill around 6:30 am, and realized >that I did not have a pill for almost 12 hours. I was not satisfied with >that imprecision and disparity in the length of time between the >pills. That's when I decided to divide the 24 hours into 3 segments, each >8 hours long, and the times. > >March 1, Thursday, second day, took the pills within two minutes before or >after my pill-time, and I wait for around half an hour before I take any >food...to give the pill the chance to dissolve and be absorbed into my system. > >It is too soon to say, but I have not felt this good in the past month or >so; so far, I have had none of the side effects, except what could be a >"false sense of wellbeing" like what I just said. My urine is still "clear" >or not as discolored as I had anticipated. > >Note to members of listserv.. > >I do not know if any of you are keeping a similar diary; how are you >keeping it , and if it has served your purpose. I had thought of keeping >such diary, just for my own use; when I finally got diagnosed, I wanted to >find out in what way i could make a contribution to the group. It occurred >to me that sharing the highlights with all of you might help. > >And so, before I continue to share my own findings, on a day to day basis, >I would appreciate any feedback, from you. If, for instance, you want to >know what I mean by my keeping a diary in Excel format, let me know, and I >shall attach a copy by next installment. > >Thanks. > >Nilo >