 |
 |
Ron, I am not offended by your sending your response to my message on the listserv. After all, the purpose of belonging to it is so we can help each other, and as you pointed out, our experience with dyskinesia/distonia, etc. is nearly universal. I suppose through trial and error we all end up at the same place. I've had the same experience as you with nighttime problems; I just avoid eating and drinking because I'll then have to keep getting up to use the bathroom. However, it might be worth it if I can get the meds to kick in faster. My holistic doctor would like me to duplicate the liquid deprenyl regimen, but I don't have information about how to get it, and frankly I'm nervous about taking something without my neurologist's supervision and with inadequate quality control. I wish researchers here would begin to study it. I believe you mentioned earlier that dopamine agonists like pramipexole need to be withdrawn gradually under a doctor's supervision. I forgot to take my dosage at dinner last night, and had a really difficult time during the night. After sleeping two and a half hours I woke up with severe anxiety and distonia. It took a while to get it under control and relax enough to doze for a while. Like you, I can control it mentally up to a point. I have a relaxation tape I listen to and practice deep breathing at the same time. Sometimes getting involved in a computer game focuses my attention elsewhere and gets me through the difficult times. I used to be able to skip medicine occasionally without very drastic results, but no more. The effects of undermedication are really scary. It bothers me too that I must be really dependent on pramipexole and may have to take it for the rest of my life or risk some terrible withdrawal effects. A friend who has had a pallidotomy thinks I'd be a good candidate for a fetal transplant. He sent me the names and numbers of people now performing them around the country. If I can ever get my computer online, I'd like to do some research on the internet and consider that alternative. I don't think I can hang in there for current medicines under consideration to be approved. At least that would buy me some quality time. Your remark about stress and anxiety is interesting. I suppose there is quite a bit of that in my life, but isn't that what life is all about? I somehow have to learn to deal with it. I also have a hard time getting used to being unproductive a good part of the time because my meds don't work. There's got to be a better way to live! Thanks for your thoughtful response. Pat pine`