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Kathrynne, She is 69, diagnosed with parkinsonism at 64. No, she has never been diagnosed with osteoporosis. I should mention that before she switched the meds routine starting last Thursday evening, she had slight dystonia during her "off" periods, but nothing like what she is suffering now. These periods of dystonia are very severe. I thought they would go away after taking the Sinemet dose, but they continue for up to 2 or 3 hours after taking a new dose. This is what is confusing me. David "Kathrynne Holden, MS, RD" wrote: > 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/