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---------- Forwarded message ---------- Date: Sat, 20 May 1995 10:07:04 -0400 From: [log in to unmask] To: [log in to unmask] Subject: Re: Welcome Barbara- My interest in PD comes stems from my partner. 7-8 years ago he was diagnosed with PD. I have only been with him for the last 2 years and have taken a deep interest in the PD since learning about it. I subscribed to every newletter I could find and went to the library and read all my medical books at home. I go to all his doctor appointments and research all the drugs he is taking looking for side effect symptoms and learning about balancing the drugs so his daily life can be as free from PD and drug side effects as possible. He is impatient with the details of it all and I am a detail person who not only loves the detail but I have always immensely enjoyed the medical field and have since I can remember. I am new to America Online and the Internet. Tom and I are computer buffs also and this is our first attempt at trying to communicate with the PD Network. I read an article in the Wall Street Journal from a man in Jerusalem who's wife has PD and he researched the Pallidotomy avenue for her. It was written that his reasearch was placed on the Internet and I have no idea how to begin finding it. I found you and I hope you can help us. I plan on staying involved with the research end of our partnership and I will share as much of what I learn with you the the Network as we go along. We are most interested at the moment with the Fetal Tissue issues at this time. We are past the Pallodotomy stage although we are very interested in it. Tom's doctor is not feeling he wants Tom to undertake the surgery since it would effect his chances for the Fetal Tissue surgery when/if it becomes available if even in test form in the United States. We are only weeks into this research and would like any information anyone has on the actual surgery or where to go for more information. We have doctors names in Sweden who have tested this on people and we plan on furthering this avenue as soon as we can. Tom currently is taking 6-8 Sinemet CR, 4 Parlodel, 1 Eldepryl, and 1 Sinemet regular per day. He is on a 2 1/2 hour schedule at this time and so far it is working. He has some depression at times but more so he has an anxious feeling that he doesn't have time and he has no patience for waiting for anything to get what he wants because of it. This makes it hard for a partner because there is not much one can do to help this. But, it seems there are always better days after the bad ones. Tom also has alot of trouble sleeping - 4 hours a night is a good night. I have been living with Tom for a year now and we are proceeding with making plans for our future. PD is a part of that future and I am devoted to helping in any way I can to help Tom and anyone else if I can by sharing what we learn as we go along in our daily lives. I will be in touch frequently I'm sure! Sheila De Vine