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10-16-2010, 12:19 PM
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In Remembrance
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One day I realized that all of my meds are old . I take only sinemet, amantadine, and nortriptyline for pd. I have end of dose dyskinesia and when I ‘m out at night and taking extra, I can lose control, but the body is usually still and calm when I’m relaxed at home . We are all different, but I take fourteen or more 25/100 regular sinemet a day….every two hours- usually 2 or I could take one an hour, 1 and ˝ for that time limit. etc. I can back off in the evening at home, with just occasional single doses. It’s the agonists that cause dyskinesia for me and many of the side effects. They, along with CR are dyskinesia in a bottle for me. I’ve had it over 20 years - taken sinemet for 11 years. I have a speedy metabolism I think.
So when I saw Linda H’s article about the reconsideration of pallidotomies I shouldn’t have been surprised .Laura and I share an interest in looking at PD through neurotransmitter eyes, me because it is something I feel I can at least partly control. Agonists give me dyskinesia – all of them. Sinemet causes far less. It slurs my speech and robs me of voice volume, many people mistake for being drunk or mentally retarded . Well I am geez! I was trying to think of a better word but handicapped or ill or damaged all amount to the same thing. Something is off here! To continue, amantadine controls my dyskinesia. I take two per day. Nortriptyline is what is literally saving me some time in pd years. It boosts norepinephrine and I can pinpoint where I have to tweak it and eliminate most of the dystonia. I have waked up to misery for so long that pain is overall pretty well tolerated – too well. . I am amazed at how long I ignored a tooth infection and abscessing . When I went in yesterday , he immediately said “I can’t do this you need to go to a m….facial specialist[can’t remember the first part of that word] " and don’t go looking around for a deal – you need the best ones its deep. He might put you under.” Letting that tooth go was purely procrastination. I should have done it before the wpc. But I just didn’t. This is a reason why we have to fight off our cognition problems, I knew better than to ignore a dangerous abscess. There must be a tiny little corner of my psych that has a death wish…Sorry for the negativity associated with that word, but I have to live in the real world after having it this long, and I do think things like –“ If I let this go it could end it all.” But I won’t do that /I’ve got too much guilt as it is….lol Nortriptyline boosts the uptake of norepinephrine, which is also low in pwp and is emerging now as a player in the research. They’ve known for some time. But does the word get to newly trained doctors or are these older meds defined as just that – old - and breezed by when choosing research? I’ve seen norepinephrine described as dopamine’s stepsister in pd. We are typically low as a group. I just titrated up to 4 Pamelor , or nortriptyline, a day – 10 mg each so total of 40 mg a day. The maximum dose Is 150 mg a day so with this much room to move ,I could actually go back some pd years. Anyway, the transmitters can be somewhat controlled. If I get rid of my dystonia, which is one of the most debilitating symptoms. I will get a fresh start again in the morning, and an unexpected freshness of thought and hope. Doing it thru DBS wouldn’t be my first choice if there was another way to achieve balance. Progress so far: I’m waking up either with no dystonia or greatly reduced and short- lived dystonia. I’m a believer and laura’s article is , well I need more information So which is better – a DBS or a Pallidotomy? It’s been a decade and maybe we should have a review and not invite any of them. ] Nothing would surprise me. I have learned to look under every stone.
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paula "Time is not neutral for those who have pd or for those who will get it." |
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| "Thanks for this!" says: | Fiona (10-16-2010) |
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