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On 12/22 Jim Cordy wrote: >I have good news for all of you who know Margaret >Tuchman and/or have Parkinson's. I visited Margaret >in Princeton today. >When you're accustomed to seeing your friends steadily >deteriorate, it is a true joy to see someone >dramatically improve. >Observing the change for Margaret has to be great news >for all who have PD. There is a treatment for those >whose drugs have done as much as they can. >Margaret, seeing the new improved version was an >unexpected and wonderful Christmas present. Make sure >to take time off from curing PD to have fun. Jim Cordy Dear List Members, It was wonderful to visit with Deb and Jim Cordy-- and I thank Deb for the fashion commentary--I don't think that Jim would know a boa (scarf) from a snake. But I am very flattered and thank him for the glowing report. Jim makes a very important observation, "there is a treatment for those whose drugs have done as much as they can." My Deep Brain Stimulation of the Subthalamic Nucleus (DBS/STN) has given me a new lease on life -- or at least the quality of my daily existence has changed measurably. Of course I still have PD, though some of my symptoms are but a memory, others are still around perhaps more infrequently or with lesser intensity. Of the major symptoms of PD: tremor, rigidity, slowness of movement, lack of movement - I have none. I had some problems with balance post surgically -- a few falls but I was adjusted and am no longer troubled with it. I must also tell you that I am training myself to be conscious of how my body is positioned and I no longer allow myself to move without deliberation and thinking. I have stamina, have no cognitive problems, have some problems finding the right words at times, but I am older and don't really know what I can attribute to PD and what to ageing. I know that my body needs exercise and mind needs to be occupied. It is amazing how quickly I can lose fluidity in either one. A cold can knock me for a loop. I have cut back on meds since surgery, and have recently switched from regular Sinemet to CR. I am not measuring the success of the surgery by the number of pills I take. My dyskinesias have disappeared completely immediately after surgery and that along with the lack of tremors have put 25 pounds on me. I am not happy with that development, but I'll gladly exchange dieting for dyskinesias. I go to New York for adjustments when I need it -- I've averaged needing adjustments about every 8 weeks. Depending on what was changed last in my routine, I get to chose between adjustment or titration. Since I cannot adjust myself, it is a decision that I make with my neurologist. I think that after having PD for a while - I was diagnosed in 1980, we tend to "play doctor" and increase or decrease dosages without much thought. Having DBS/STN, forces one to work closely with the neurologist. The surgical and follow-up protocol varies from center to center. Drs. Kelly, Beric and Sterio have an open door policy. That, in combination with my geographic proximity makes it easy to "run in" to NYU for a little tweaking. This is one of the issues you must consider before choosing a surgical team. It is not easy to decide whether to have surgery or continue to add/change yet another medication. Insurance coverage is a big issue. There is no federal standard for coverage for DBS/STN. You have to explore each state and each company. Once, the FDA approves (we've been waiting for YEARS!) the procedure for PD, insurance coverage will become more standard. Until then, the patient has to find a facility where the surgical team & facility is approved for this (bi-lateral STN) procedure and argue their case with their insurance carrier. This is an unconscionable situation to be placed in, given that the mere decision to have surgery is hard enough. Unfortunately, once again we will have to push our elected officials to act on our behalf. I am sorry, I did not mean to be so wordy. We have been working on getting our website, Re-Wired for Life, ready to serve DBS/STN patients. Re-wired is a nonprofit organization whose mission is to: 1- educate people considering DBS 2- give support and share information via a Patient Forum and FAQ about the fears and triumphs; the best and the worse experiences with health professionals; the kind of questions that we, the patients find more easy to ask our fellow patients 3- provide a broad based look at what progress or problems we face by completing a patient survey. Patients answer questions that are directly entered into a database. This information will be coded and anonymous. We will ask for a commitment to update every six months for a total of three years. The patient will have access to update their own file by entering their password and the physician will need only to agree to participate by providing a copy of a section of the universally used scale (UPDRS) to Re-Wired for Life. The benefit to the patient population will be in getting reports - as the database grows - of statistical information and most importantly, finding out how long does the benefits of STN last. These reports will enhance our understanding of the surgical procedure, the problems we face with adjustments and yet not threaten the physicians because their identity is anonymous. Cooperation of an international group of surgeons and neurologists has already been assured as Drs. Kelly and Beric discussed the issue of the survey. One of the hats I am wearing is to get this website up & running. We have plans to make the survey accessible by the beginning of the new year. Meanwhile, those who have questions about DBS can visit the site: http://www.rewiredforlife.org. The Patient Forum and FAQ pages are live and functional though still in process of development . If you have questions and comments - please write to me, [log in to unmask] I wish everyone peace, joy and love during this holiday season and a cure for PD in in the new year. Margaret Tuchman dob 1941, dx 1980, bi-DBS/STN 2000 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn