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Bev.... Many thanks for sharing your experiences with us in your information-packed post. I hadn't thought 'bout a support group itself having an "in-house medical training team" to educate those in the medical profession 'bout PD, but think that's SUCH a terrific idea that I'm going to try to get my own PD support group to do the same thing here in L.A. Thanks again.... Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of MRS BEV K STEWARD Sent: Wednesday, March 25, 1998 9:45 AM To: Multiple recipients of list PARKINSN Subject: Re: Hip Pain I have had three total hip replacements in the past twelve years. I believe it was due to the cartilege being destroyed between the hip bones by my extreme dyskinesias over many years. The doctors say it was due to arthritis. However, I have no arthritic pain anywhere else in my body. When the prothesis were put in the terrible grinding pain was gone completely, leaving only the temporary pain of healing from the incision for the surgery. The third hip replacement was necessary because the plastic material which llined the ball of the hip joint had started to break down and was causing my body to erode my bone when it could not erode the plastic material. These are the chances we all take with new developments that haven't really had a long enough track record to know all the facts. But, I have been pain free for twelve years and am so grateful. I couldn't have lived the active, contributing life I now live without the surgery. Hip surgery has a better record for success than knee replacement, which is a bit trickier, but good. So, if you have been a victim of dyskinesia for quite awhile with its attendant writhing aod reeling of the hips (my hula hoop dance, I called it) you may have reason to suspect a similar situation to what I faced. Be sure if you decide to have any surgery that you coordinate your neuro, internist, anaesthesiologist and surgeon on you plans and that each is aware of your Parkinson and of what the other doctors are prescribing. The anaesthesiologist should be consulted well before surgery (not just thse night before as is the common practice) The doctors will tell you that you have no control over who does your anaesthetizing. Don't you believe it! Usually the surgeon has a favorite doctor who he prefers. Find out who this is ahead of time and contact him, educating him on the medications you are taking, the contraindications of some combinations such as demerol and Eldepryl and others on the lists of no-no's available from the National PD Foundations. Also indicate that if the operation is to be a long one you would like to be given your Sinemet in liquid form through a tube in your nose to the stomach during the operation. This can be arranged for those that require definite meds timing. You won't lose as much ground with your PD this way. Also, never swallow any medication in the hospital without knowing what it is and that it is not contraindicated for your PD. Ask the nurse if you don't recognize it. Ask her what it is for and if necessary ask her for a PDR (Physicians Desk Reference) which will tell you all about any medication. No one can make you take something that is bad for you if you are watch-dogging your own health. If it's too much for you in your condition, always have an advocate handy when you are in the h ospital, a friend, relative or person knowledgeable about PD and your condition. Especially in today 's world with the HMO situation trying desparately to cut costs, sometimes to the disadvantage of the patient you need to be alert to protect your well being. When I am hospitalized my neuro has a standing order in my nurses's station folder that I am to administer all my own PD meds. Some doctors do not trusts their patients to this extent. If you feel you are one that could be trusted and are knowledgeable about meds, be sure to ask for this privilege especially if you have a very strict med regimen. This is longer than I expected, but I feel strongly that hospitals need to be educated on the nuances of PD in caring for their cases that are in for any reason. Our support group has an in-service training team that goes to local hospitals, nursing homes and retirement full care services as well as rehab institutes and gives classes on how to treat Parkinson patients in the hospital situation.. .it's an ongoing educational process for our own benefit. Bev, the Bionic Woman