 |
 |
Teresa.... I'm sitting here stunned and sad as I read your message. Sad, of COURSE that your mom is suffering so, and sad also for her family who must be hurting terribly, watching what mom's going thru. I'm stunned because in the 24 years I've had Parkinson's, I've never heard of this disease causing such continuous pain or such continuous negative response to even the most minute bit of daily protein. I know each Parkie has a slightly different and varied bunch of symptoms. But the only people being treated for PD which I'VE ever heard of having SUCH a totally negative response to protein and/or food in general either turn out to have some OTHER disease (like Graves disease, for instance, which is a disease of the thyroid) in conjunction WITH PD, or don't actually have a true Parkinson's disease at all. Perhaps it's time to take mom to an endocrinologist to see what's going on inside her OTHER then PD? And perhaps it's also time for mom to have an evaluation by different neurologist... one who's a movement disorder specialist? Regarding pallidotomy, I had a unilateral (one side only) pallidotomy on Oct .24, 1994, with excellent results, however, while I wouldn't rule out this beneficial surgery, I'd keep in mind that there are now other surgical procedures in the neurosurgeon's arsenal (thank goodness we NOW have MORE than one choice!) which may be an better alternate for mom than pallidotomy. Sooooo..... before you plan on getting mom a pallidotomy or other brain surgery, tho, you MUST make sure she actually HAS Parkinson's (this is where the movement disorder specialist comes in) rather than a Parkinson's-LIKE disease. AND - to assure yourself that the ONLY medical problem mom's suffering with IS Parkinon's, DO get her to an endocrinologist ASAP. GOOD LUCK! Barb Mallut [log in to unmask] -----Original Message----- From: Teresa V. Bohuszewicz <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Friday, February 26, 1999 9:41 AM Subject: protein count, head explosion, pallidotomy(?) >My mother was diagnosed with PD at the age of 43. She is now 57. She >suffers through a lot of pain, extreme rigidity, and burning sensations. A >few years ago we learned about reducing the protein count in her diet and >that helped quite a bit. (She eats no meat and we keep track of her protein >input everyday in a logbook. She is averaging about 32 grams of protein per >day.) Unfortunately, her weight has gone from 134 pounds to 91 pounds. She >takes 650 milligrams of Sinemet between 7am and 9pm. And she takes Restoril >and Elavil before going to bed. We are now contemplating pallidotomy. Her >body is rarely able to "link" between Sinemet doses. She cannot have >several light meals throughout the day because any amount of food in her >stomach interferes with the Sinemet. Hence, not only does she avoid >high-protein foods but, also, high fiber foods. She cannot wait a long >period of time for all the food to digest because the PD symptoms are too >excrutiating. At this time her worst symptoms are these sensations that her >head is about to explode off of her neck like a rocket ship and inside her >skull if feels like she has been beaten with a baseball bat. This is an >every day occurrence. > >I would like more information on pallidotomy surgery. I have found some >information at www.axonet.com but I would like information about its success >rate and the statistics of what symptoms were alleviated and for how long, >etc. Does anyone know where I can find this information? > >Teresa >