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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Dear Trixiedee
I was almost at same place as you are 2 months back: 4 years since diagnosis without medics (but I am 67). I take loads of supplements, exercise 2 hours a day diligently. I have energy and no movement complains except tremor, memory and speech problems.
However, I decided to start sinemet for the following reasons (This is purely my opinion):
1) I always believed that sinemet is toxic and may cause speeding of the progress of disease but lack of dopamine seems to lead to even worse deterioration. I was specially influenced by the research that claimed and presented the many roles of dopamine in our functioning including movement memory (or muscle memory). In other words: without dopamine we seem to forget how to move.
2) Overall experience of doctors (as they claim), indicates generally better performance of patients who started earlier on sinemet.
3) It is vital to be at best TODAY, because this will enable you to exercise body and brain. 'Use it or loose it' is the point in mind.
I encourage you to watch the discussions in following link which summarises the point of view of the medical establishment today regarding PD medics:
http://www.neuroconnection.net/
I also encourage you to follow in parallel to medics (if any) a rigorous regime of exercise, yoga, taichi, music, dance , etc.. and learn to find joy in life, as many of the PD veterans on this forum do.
Best of luck
Imad