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/