 |
 |
Thanks Peggy What got cut from the story was the fact that some people don't have "good" results. One List Member emailed me that her son's DBS benefits diminished over time. Another lady, whose daughter I have emailed had very bad results. Believe me, I am thrilled to hear of PD meds helping someone but they helped me only once. I still can barely walk, talk, have double vision and my hands are like paws...as I said, I didn't get my life back. also, being awake while having brain surgery twice is not exactly a procedure that is routine or easy. or one that everyone can undergo. To all those who champion a "positive" attitude, I say great, nothing I or anyone else says can take it from you and they shouldn't. But let's be realistic, not everyone can continue working. You may die of something else, it is not ALS, but it is not good news at all. Peggy, I do think you have a good idea about referencing it in our letters to congress, etc. Just received my T-shirt and it is not exactly what I thought I ordered. It says "I support stem cell research Ask me why" on front...on back it says George Bush is standing in your doctor's way ask him why (202) 456-1111 I hope I don't get beat up - I had wanted to leave him out of it as I have Republican friends who support ESCR. One family member of mine who converted to Catholicism saw a picture of me smiling in a bathing suit getting out of my pool in CA said "keep up your positive attitude" That is what people said when I had ovarian cancer. What a burden! I do have a "black" sense of humor....you've just been sentenced to the guillotine, keep a positive attitude....now that's funny. Ray ----- Original Message ----- From: "Peggy Willocks" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, November 11, 2005 10:32 PM Subject: Re: DBS Story > Ray > > THANKS so much for sharing your personal story with the world through the > CNN news media story. I was touched by the way your dilemma was portrayed > before surgery, and how deep brain stimulation made a difference in your > life. > > > > Make sure that when any of you out there write or email your congressmen > regarding the new Udall legislation, HR 3550, the Morris K. Udall > Parkinson's Disease Research Act Amendments of 2005, that you make > reference > to Rayilyn's story. It helps to put a face with a disease. > > > > Use this link when referencing what it is like to live with Parkinson's; > > http://edition.cnn.com/2005/TECH/science/11/07/rayilyn.brown/index.html > > > > Thanks again, Ray! > > > > Peggy > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn