Re: president Bush- Deborah's Dilema

[Guest guest]

hi. i caught the funding issue. President Bush is going to be at the

NDRF conference in a couple weeks. maybe someone can pose this question

to him while he is looking at some of the people he is denying and

cutting research dollars to their areas.

nancy

Werre wrote:

>

> ,

>

> There is no cure for PD at this time. They treat the symptoms, not

> the cause. They are currently working in other countries on a

> possible cure for PD and have cured mice and monkeys of PD like

> symptoms through stem cell research. Many of us are hopeful that they

> will find a cure for PD within years. IF stem cell research provides

> a cure for PD, I am sure they will try it for MSA also.

>

> A diagnoses of MSA is usually the result of doctors ruling out known

> diseases. MRI's can rule out many diseases as can PET scans, BUT at

> this point there is no 100% accurate method of defining MSA. If many

> neurologists have said MSA, why keep spending money on expensive tests

> which are going to define the problem further - especially when the

> treatment is the same for ALL of the " alphabet soup " disorders? PD,

> PSP, CBGD, ALS, MSA, MS, LBD, PAF, etc, are ALL treated by addressing

> the symptoms, not the disease or disorder.

>

> It is time to focus on the real problem. As early as 1981 President

> Reagan stopped NIH from spending $27 million on Parkinson's research

> and instead told NIH to put about $30 million into AIDS research.

> Next year (Oct. 2002- Sept. 2003) Pesident Bush is pushing Congress to

> identify $1.1 Billion for AIDS research and abatement. HOWEVER, he

> fought Congress identifying $100 million over 5 years for PD

> research. To me using MY tax dollars to fight one disease over

> another should be left to people who understand the problem, not

> lawyers who know NOTHING of the everyday trials that people with

> movement or autonomic failure problems face. I am sorry for AIDS

> patients, but we need research also.

>

> Take care, Bill Werre

>

> -----------------------------------------------------------------

>

> rsetzer2000 wrote:

>

> > Well, I just saw Deborah's post and some reply's.. Now it is my

> > turn.. Yes, I need help. My problem is the following.

> >

> > 1- I cannot and will now wait for an autopsy to find that she does

> > not have MSA but Something else that all these Doctors over looked.

> >

> > 2- Yes, I got a PET Scan because from what I understand, it actually

> >

> > tell's if you have parts of your brain disenagranting or not, in

> > stead of the Doctor's saying, you fit the MSA portion of this PD

> > disease.

> >

> > After going to the Washington Forum and listing to the Doctor from

> > England.. It made me think,, Who Is Right.. In England, one

> > paticular

> > Doctor who spoke there said to find out about PD, the first thing he

> >

> > does is proform a FDopa PET SCAN, and If that proves positive, than

> > he Does a Glucose PET SCAN to determine if you have MSA as well...

> > Here the Fdopa is not approved. Than you have a Glucose done and

> > they can't read it. WHAT IS WRONG WITH THIS PICTURE !!!!!

> >

> > I want some answers. WHAT IF IT IS SOMETHING ELSE.. Oh, I belive she

> >

> > does have PD, that I personally can live with.. But I need some

> > honest answers. And I can not let Deborah give up hope untill they

> > are answered. Not by Guessing... Which from what I have seen so far

> > is exactly what they are and have been doing.. There are things

> > going

> > on with Deborah that dont FIT.. I read and listen a lot and than

> > compare... Too much doesnt fit..

> >

> > If any of you out there have any suggestions, Please let me know..

> > You are welcome to write me off line any time.. Thanks, any and all

> > of your suggestions will be overwhelming welcome.. I just LOVE my

> > Wife and am not ready to say,,, OK...I hope you understand..

> >

> > " tenacity's man "

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

[Guest guest]

,

The conference costs $150 to attend. So I am not going. I don't think

anyone will be able to ask questions (if Bush shows up).

Take care, Bill Werre

==================================================

ds401 wrote:

> hi. i caught the funding issue. President Bush is going to be at the

> NDRF conference in a couple weeks. maybe someone can pose this question

> to him while he is looking at some of the people he is denying and

> cutting research dollars to their areas.

>

> nancy