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eborah, in your note you mentioned msa. you need every bit of courage you can muster. i know. this summer i diagnosed from pd to msa. it was a surprise for me and ar the same time it wasn't . a lot of things that i had wondered about became clear and reasonable (if you can call anything about these diseases reasonable!) i am wondering where you went for your dbs surgery? the reason i ask is that it was in my interview to determine whether or not i was a good candidate for dbs surgery. the new diagnosis of msa made me ineligible for surgery in cleveland. doctor montgomery told me the reason for this was the experience people with msa had was not good. many of these msa patients who had the surgery were diagnosed postmortem after the brain was looked at. i am one of the 25% of msa patients who respond to antipode drugs,though i need a lot of them. i keep thinking that if i respond to the medication i might respond favorably to dbs. i was willing to try any ways. i darn near begged dr montgomery to allow me to go through the risks of surgery when the experience other msa patients was not at all promising. did having msa contribute to the infection? for obvious reasons i would be interested in hearing about your experiences. please drop me a note off-line. i know what you mean about choices. and the decisions i make to deal with msa symptoms every day always seem to come about six months too late. i feel like i am in a race just to keep up. i'm very sorry that surgery didn't work for you. it's at times such as these we need to hold fast to the good and the beautiful in our lives. as corny and pollyanna-ish as it sounds and difficult it is to do, it is one way not to lose everything to msa. keep strong your courage and god speed. cathy 52/dx pd 1997/ dx msa 2001 Charles Countryman wrote: > Deborah, > > Your courage is an inspiration for all of us with > Parkinson's. My prayer is for a more speedy recovery for > you from the complications of your surgery. Keep on > fighting! > > Charley > > > As I lie in the hospital for the 7th day which came about from a staph infection > > after receiving a DBS, I can only thank you for the letter that you sent. I > > knew the risks that were involved in DBS surgery and I accepted them and > > ununfortunatly, I was the 1 in 10,000 that gets an infection in the brain after > > surgery. Last Sunday, I had to have the DBS completely removed and am on iv > > antibiodics for the next 10 weeks. > > > > Had there been another choice for me to take, I would have tried it. It is so > > frustrating knowing that I don't have a lot of choices. I am 39 years old and > > due to my PD/MSA I felt that I had not other choice but surgery b/c I was in > > advanced stage of PD symptoms. > > > > I do not know how my story will turn out but I am 100% behind you in the > > letter that you wrote. How I wish that stem cell research would advance enough > > for me to have a choice in my treatment. > > > > I, like you, will not sit quietly by and deteriorate. I feel that there is a > > lot of good life to live and I will continue to write my senators, congressmen > > and anyone else that will listen and a lot that will not that there are faces to > > this disease and to take a good look at us... .we are the ones that have to live > > by their decisions... not them. > > > > Sincerely, > > Deborah Setzer > > aka Tenacity Wins > > But for the Grace of God, Go I! > > > > ----- Original Message ----- > > From: Stacey L. Downing > > Sent: Saturday, January 12, 2002 12:25 PM > > To: [log in to unmask] > > Subject: Write to People Magazine > > > > I wrote the following letter to the editor of People magazine, I encourage > > you to all write one as well. > > > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn