Dear David, It sounds as though your mother is experiencing "wearing-off dystonia." This can be very painful, and difficult to treat, and I encourage you and your father to discuss it with Dr. Rao. A couple of questions that could be relevant, however: How old is your mother? and also, has she been diagnosed with osteoporosis? Lack of calcium and/or magnesium can greatly worsen dystonia. Taking supplements will not help if she is not deficient, and is getting sufficient amounts already; but if she does not ingest enough of these minerals, it can make dystonia much worse. This is particularly true if the person also suffers from osteoporosis. A client of mine had been diagnosed with osteoporosis and suffered from extremely painful wearing-off dystonia; her daily intake of both calcium and magnesium was inadequate. When she increased her intake, she found the incidence of dystonia was reduced from about twice daily to twice a week, and the pain was greatly reduced. I would certainly discuss this with her physician. My very best regards, Kathrynne David Rehm wrote: > > We finally had our first appointment with Dr. Rao - movement disorder > specialist - in New Orleans last Thursday. After talking with us and > examining her, he has made an initial assesment that she has Lewy Body > Disease. He immediately told us to stop taking Permax and Celebrex and > he has increased her dosage of Sinemet from 2 CR 25/100 to 4 CR 25/100, > leaving it up to my dad and I to find a correct dosage and timing > schedule. > We are, though, experiencing problems with severe muscle cramps in her > leg as she enters her off period. We are now giving her one Sinemet CR > 35/200 every 6 hours. This is a 100% increased dosage per 24 hour > period. > Does anyone have any recommendations? At this very moment she is crying > out for relief from the pain. We have given her Tylenol PM, and 2mg > Valium to help her, but when she gets in these states, even they do not > work. > > PLEASE recommend what we should do as soon as possible. I do not know > what we can do to help her and it hurts us to be so unable to assist her > in her time of pain. -- Kathrynne Holden, MS, RD Author: "Eat well, stay well with Parkinson's disease" "Constipation and Parkinson's" -- audiocassette & guidebook "Guidelines for Medical Nutrition Therapy for Parkinson's disease" & Risk Assessment Tools "Risk for malnutrition and bone fracture in Parkinson's disease," J Nutr Elderly. V18:3;1999. http://www.nutritionucanlivewith.com/