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Hans, Did you also try to get Dr. Lieberman's help? . He might be able to strengthen your plea for help. Please try to contact him on ask the doctor. You have nothing to lose. Please keep us posted. Emily ----- Original Message ----- From: "Hans van der Genugten" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, July 12, 2002 4:31 PM Subject: Please help Tenacitywins !! > Hi all, > > I'm sending this at the request of Robert Setzer, the husband of Deborah > Setzer (aka Tenacitywins). > > If you have questions about this posting, you can write directly to Robert > Setzer at [log in to unmask] > > Hans. > > Your help and support is needed !! > > Hi every one, I am Robert, Deborah’s husband, she is also know as > Tenacitywins. But right now she is not winning this battle and she needs > your help. About a year ago, she looked at me and said “honey, one day I > will not be able to continue this fight and I am going to try and teach you > all I can so you can continue it for me” well, that time has come. > > Deborah was Dx with PD in 99 and MSA which is actually Parkinson’s plus > syndrome in 2000, she was in so much pain in 01 that she said to me one day, > “if this is as good as it is going to get, I do not want to participate” > with that, we got an appointment with a Doctor Steven Tatter at wake Forrest > Hosp in Winston Salem N.C, and in Dec of 01 he preformed a DBS on her. It > had to be removed in Jan 02, just 16 days after it was put in. She had a > infection in her brain, neck and chest. She was on 42 pills a day and 2 IV’s > per day and she got a very serious reaction to one or all. They don’t know > which it was, but she blistered all over her body. Including her ears, > mouth, > you name it, it was there as well. > > Since than, she has been on steroids for reactions to any medication that > would help stop the pain. I took her to a Nero eye doctor about 2 weeks ago, > and after about 1hour and 30 mins later, he said to us, “have you considered > a STEM CELL transplant?”. He said that the base of her brain stem is > deteriorating and that there is nothing wrong with her eyes. It is her that > which is the problem. > > Our own Dr Raad, told me and she about 3 weeks ago, that in his medical > opinion, Deborah has only about 2 years at best to live in the condition she > is in presently. > > I happen to know that in Los Angeles California, that they may have the > CURE, not just for Deborah but for all who have PD/MSA. But like every thing > else, they are still in the trail process. Here is the link for you to see > for your self.. > > http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=3627 > > I have sent them a letter and asked for there help, that it is Deborah ’s > only chance to survive. Dr Raad also knows about this and he suggested > that if I could get enough people to write or fax a letter to them that they > might consider her in the program even though she has MSA. After all, she is > dieing , So why not try her. But we need you help in pouring out the mail > to them. Actually flooding them with E-Mail’s and Fax’s in support of > helping her. > > Can you please take 10 minutes out of you day or night and help us. After > all, if for some reason, she as an experiment has success, it is success for > all of you. PD/MSA and even other’s . > > Here is the letter I wrote to the doctor: > > Dear Dr. Levesque > I am writing on behalf of my Wife, Deborah L. Setzer,Who was DX with Pd in > 99,MSA in 2000, DBS Dec of 2001 and removed in Jan 2002, had staff > infection.. See article by Charlotte Observer dated March of 2002. > > http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside _deb > orahs_brain/ > > My wife to date is still on steroids because of reactions to any drug that > has a content of any Opiate in it and can not stop the pain... It is in > every joint in her body along with her muscle tissue hurting at the touch... > > Our present Doctor is Dr. George Raad here in Charlotte, if it was not for > him she would be dead from all the medicine given to her after the infection > was found. With in 6 day after org surgery is when the infection started... > > We went to a Nero-Ophthalmologist last week, because of her sight (one side > long and the other far) after about a hour he said that her eyes were normal > but that after looking at her MRI’s and scat scan's he said a brain stem > transplant is what she needs. That it is going away. > We also had a PET SCAN done approx 2 weeks ago at Carolina Medical Center, > here in Charlotte, but they do not have any one who is qualified to read it. > Only for cancer, seizures and diabetes. > > My wife just turned 40 years old in January and our own Doctor has given > Deborah less than 2 years to live under these conditions... > > Folks, She is dieing and needs your help... Please, if you are going to try > more patients, she is willing to give you her life to help her possibly gain > LIFE. > > Please I ask you... Please consider her for your program. This is a MATTER > OF LIFE OR DEATH. > > Please let me know that you did in fact get this so that at least she and I > know we have tried to get help... One way or another... > > Thank you > > Robert Setzer sr. > Deborah Setzer, Patient > 16308 autumn creek court > Charlotte, N.C. 28278 > 704-588-9797 > > Dr. George Raad > Park road medical center > Charlotte, N.C, > 704-523-2565 > > The Doctors personal E-Mail is: [log in to unmask] > Fax# 310-659-6631 > > If you can do this, thank you > Robert “tenacity’s man” > > ---------------------------------------------------------------------- > 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