Quote:
Originally Posted by trixiedee
I'm at the end off my tether with this dis-ease, this week I was due to take my kids away for a camping trip - our first holiday since I split from their dad 4 yeaars ago, but had to cancel because I'm too weak to walk any distance. I can just about drag myself around my house but that's my limit. I'm sick of life passing me by, I can barely hold myself up to type this. I am taking bucketloads of supplements, eating a very healthy diet, doing yoga, having acupuncture, craniosacral therapy, massage, counselling etc but am still sliding down. I am so tired all the time that I have no energy for exercise except very gentle yoga (but get high as a kite when i'm yogaing).
So I'm thinking seriously about starting meds - I can find very few positive stories about DAs so Sinemet seems to be the best bet. Am I right in thinking that it is possible to keep it on a low dose and keep that dreaded dyskinesia at bay for longer? Any advice would be gratefully received.
Aaaarghhhh!!!
Trixiedee
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if you want an opinion from a non-medical professional:
everyone is unique, you have nothing to lose trying agonists, you'll know pretty quickly if you like them. you can try azilect or selegilene as a monotherapy. if those don't work then you have sinemet. i was in heaven after my 1st sinemet. since then, i have gotten a lot worse when unmedicated but pretty good with sinemet. went 6 years without meds but got to' the same point your're at.
the problem with not taking meds is your're miserable, you have the fatique you describe - i have it and it's terrible when sinemet wears off - and then you just become a blob because everything becomes a major chore. you procrastinate over the simplest chores.
if you believe exercise may be neuroprotective, then you want to be as active as possible and sounds like you need meds to be active. my attitude is live for today, you could get hit by a bus tomorrow. you're miserable now, deal with it, you may never get dyskinesias.
i'm getting by on 5mg selegeline - stopped taking it but started again since it does help more than it hurts and 400-600mg sinement a day, split between normal and cr. couldn't tolerate agonists. went jogging yesterday.
yet when the sinemet wears off just shuffle like an old man. i probably need more but like you i'm a little worried so take meds so i'm functional from 8am to 4pm, more when i need to.
of course there is the cost issue, generic sinemet is cheap if you don't have insurance.
haven't tried the extended release agonists.