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Date: Fri, 31 Mar 1995 22:51:49 EST From: [log in to unmask] (MR ROBERT A MARTONE) X-Mailer: PRODIGY Services Company Internet mailer [PIM 3.2-342.56] Message-Id: <[log in to unmask]> To: [log in to unmask] Subject: Office visit Pallidotomy - Blue Glasses To List members, Today we visited Nancy s neurologist to begin our journey toward a pallidotomy for Nancy. The visit was slightly different than usual as the doctor had a delightful new nurse who showed a nice balance of office manner and humor. After the usual BP, Pulse rate what meds are you taking etc., we dove into our request for the doctor to initiate the referral of Nancy for a Pallidotomy. (Nancy is 50 years old, has had PD for 17 years, suffers major on off swings and significant dyskinesia from her meds.) He was up to speed on the WSJ and the NYT articles and thought the NYT article was well done and presented the proper perspective on the risks of pallidotomy. After the expected cautions including those about Dr. Iacona s failure to publish his results, the media frenzy and the capitalistic way the procedure is being promoted, we convinced him that we were serious and now needed his help to push this through our HMO provider so that we could begin the search for the right neurosurgeon, team, and procedure that would ultimately benefit Nancy. During this dialogue, Nancy was very dyskinetic, a point which was being duly noted by all three of us. Spontaneously I suggested to Nancy that she put on her blue glasses which she did with some difficulty. The doctor observed with a passing interest as we tried to continue our pallidotomy discussion. But WE WERE DIVERTED. In less than 30 seconds the dyskenisia that was actual generating some sympathy for Nancy s decision for the Pallidotomy had virtually stopped. I turned to the doctor and said amazing isn t it. He said YEAH ??? Does that happen often? I said yes, Nancy said no. So I described that what he and I had just undeniably witnessed though our visual experience was not always shared by Nancy in what she felt. However on this occasion Nancy too acknowledged that the dyskenisia had subsided so much that she felt the tranquilizing effect of the blue glasses. I of course feel much better in reporting my observations to you regarding the blue glasses because a very skeptical observer also validated what I have reported twice before on this listserver. It does seem to work. Not all the time and not yet with total predictability but at this point not much is predictable except the progressive degeneration caused by the PD. Back to the pallidotomy, the neurologist will consult with our primary care physician and make the referral for the pallidotomy. As we move forward, if there is much interest from the list members, we will share our progress. PS During our last visit, I shared some material from the server with the Doctor. He now has obtained an internet account and will be reading our postings and hopefully start participating. ------------------------------------------------------------------------ ----- Bob & Nancy Martone [log in to unmask] ------------------------------------------------------------------------ -----