Deborah please contact

[Guest guest]

Hello Deborah. A lot has happened since I received your email. Would you be able to contact me on my own address and I will explain, asI have accidently lost your mail

Bill Pilgrim

-- Re: Letter to my Senator/Representative for you to use and Thanks Charlotte M.

Thank you Charlotte for something well put. I like your mother and former Senator Udall do not have time to wait nor feel I should have to wait for the reasons you so eloquently mention.The following is a letter that I have sent my Senators and Representatives. Please, anyone who would like to use it is welcome to change the names and send it to their elected officials or media sources. I write it for all of us. Edit and use it with my blessing. (Be sure to change the "them's" to "you" etc.I have met with my Senators and Representatives and they know my face (or should I say that they now have a face to put with my e-mails, faxes, phone calls and visits) and I'm not going away without holding each of them personally accountable for what is NOT being done.Yes, you heard me right. I am holding them (North Carolina Senators Helms & and Representatives Myrick and Watt in Charlotte) personally responsible for me being the way I am tomorrow. I won’t hold them responsible for today for the simple reason that today is the day that I give them the power to bring about change.I am holding them personally responsible for forcing me to continue to live a life trapped in my own body because of PD+ syndrome.I hold each of them personally responsible because researchers have told us/told them that a cure/the cure is possible within 5 years. I have been hearing this same rhetoric since the day I was diagnosed with Parkinson’s disease back in July of 1999 at the age of 37. ly, this is no longer acceptable to me. It is because of their political speak and pet projects and neglect that full funding for the Parkinson’s Agenda and distribution of monies from the Udall act are not being properly handled.When I get the argument that they are but one voice/one vote, I rebuttal with, I am but one person before you showing you and telling you how debilitating this disease is. I offer solutions to my problems and request that you use your one voice/one vote to make this agenda happen.If I get the argument that they did not make me this way then I respond with: No Maim/Sir, you did not. What you are not doing is fully funding the Parkinson's Agenda or ensuring that the monies allocated for the Udall act are being disbursed in a timely manner. The monies set forth for the Udall act are going unspent. You did not make me this way but it is by what you are not doing that is making me worse. You are denying me one of my constitutional rights... the right to life, liberty and the pursuit of happiness.My life is one of decline where I become more and more needy. I require more assistance for my housing and medical care. I am costing tax payers their hard earned money. I am but 40 years old and must humble myself for the resources of the government, instead of the fruits of labor, from my own two hands. This I find unacceptable.What Liberty do I hold when my own Senators and Representatives, by not doing, perpetuate my inability to move freely? It is you dear Senator/Representative that is personally accountable for my not having liberty.My constitution tells me that I am allowed the pursuit of happiness. Surly, you see that I am not a happy person and you are directly responsible for that too. You have not done your duty in office to expedite finding a cure, not only for me but for all others within your district that suffer from this terrible disease. You have my blood, my life, my suffering and my death on your hands. For it is only to you that I can hold accountability.I have been nice. I have asked politely. I have been patient. I have trusted in my government. I now no longer have time to wait and see if you just placate me or if you truly represent me fore I am dying. It is up to you to your voice/your vote to make sure that the Parkinson’s Agenda is fully funded. Remember, you represent me and that makes you my voice/my vote. It is up to you to use your voice/your vote to make sure that the Udall act funds are properly allocated. It is you, which holds this life before you, humbly, mercifully in your hands.You see dear Senator/Representative; I no longer hold the luxury of time and politics. I need your help now. Therefore, every day past today, I give you the outcome of my life. Will you enable me to suck precious resources away from Medicare and Medicate and HUD? Will you enable me to take food stamps and further forms of public assistance? Will you enable me to become more and more a burden to my state, to my country? Or dear Senator/Representative, will you enable me to be cured and once again contribute to this great country of mine?From this day forth, I am a product and living/dying example of your legacy in office. Only you can foretell if this will be a legacy of pride or shame. I beseech you to make your legacy one of pride and do the right thing. Fully fund the Parkinson’s Agenda. Properly Allocate the Udall Act funds. Vote NO for the Brownback bill and vote YES for the Feinstein bill. Be remembered as someone who made a difference not as the person who did nothing.Sincerely Your Constituent,Deborah L. Setzer, M. A.Reply-To: Parkinson's Information Exchange Network To: PARKINSN@...Subject: Re: The Debut Of L-DopaDate: Wed, 5 Jun 2002 15:50:09 -0700Hi,It may or may not be of any interest, but my mother was in the L-Dopatrial at Columbia Presbyterian Hosp under Dr. Duvoisan in 1967. She hasPD since 1948, and was very severely disabled, and had been for sometime. She responded (I guess she really had PD ha ha -- a little gallowshumor), and in fact was able to turn in bed for the first time in morethan 15 years, then was able to get OUT of bed, which scared my Dad halfto death when he suddenly found her up and about! Yes, she was able todo a little walking, and I even have a picture of her putting up herhair, in, what else, 1940's finger waves and pin curls with hair clipsfrom 1948--time had stood still for her. Sadly, the straight L-Dopabecame too much for her--she already had cognitive problems, and thehallucination were too much. She went into a fast decline when they tookher off her meds, and she died in 1972 unable to speak, move or recognizeanyone. Her sister got PD a few years later, and now I have it.I've been waiting for a cure since 1948, or as good as a cure. Certainlysomething better then levadopa/carbidopa and the myriad of adjunctivemeds and surgeries, all of which are just "patches."I'm tired of being told, we can cure it in 3-5 years, or 7-10 years ifonly we had the money. Well, Damn it, they DO have the money, but they'renot fully funding the Parkinson's Agenda, just like they didn't spendmuch on the Udall Act. I don't want my son to have to face what I'mfacing!I WANT THEM TO SPEND WHAT THEY ARE SUPPOSED TO SPEND ON THE UDALL ACT ANDON THE PARKINSON'S AGENDA----AND I WANT IT NOW! If they started to spendall they are supposed to spend today, which they couldn't--it takes timefor the NIH and others to put the funds in motion and for researchers toget hot on PD research once they see where the money is, then by the timeresearch really discovers enough for a therapy, and clinical trials1,2,and 3 take place, and then the FDA gets a whack at it, it will be morethan 10 years--much more. I have been waiting for over HALF A CENTURYfor real progress--like at least a way to stop PD. Because with all themeds and surgeries, we, especially young onset PWPs will end up just likemy mother in 1972 and just like Mo Udall in 1998!So let's tell the NIH--SHOW ME THE MONEY!!! MONEY THAT WE HELPED THE NIHTO GET THROUGH YEARS OF ADVOCACY AND HARD WORK--AND WHILE WE'RE AT IT,TELL YOUR SENATORS TO STOP THAT RIDICULOUS BROWNBACH BILL AND PASS THEFEINSTEIN BILL--ALLOW THERAPEUTIC CLONING--WE DON'T HAVE TIME TO WAIT FORPOLITICAL CLAPTRAP--WE ARE DYING!!!Charlotte MancusoOn Wed, 5 Jun 2002 11:41:25 -0400 "ne Holden, MS, RD" writes:> Dear Friends,> I just received this today, and thought others might be interested.> It's> hard to believe it's only been 32 years! Best,> ne> ==============================================================>> If you have a friend or relative who might benefit from our> timely, authoritative health news and information service, please> forward this e-mail to them. To sign up for this daily e-mail,> new subscribers should click to> http://www.intelihealth.com/signup?r=EMIHC000>> =======================> TODAY IN HEALTH HISTORY> =======================>> On this date in 1970, the U.S. Food and Drug Administration> approved the drug L-Dopa, or levodopa. The drug revolutionized> the treatment of Parkinson's disease, a disorder of the body's> motor system that can cause rigidity in the body, abnormal> walking, shaking or tremors, unsteady posture, and slowed> movements. L-Dopa and other related drugs help the body make its> own dopamine, a neurotransmitter normally produced by a part of> the brain called the substantia nigra that is missing in> Parkinson patients. Although there is no cure for Parkinson's,> some of its symptoms can be eased with L-Dopa and other drugs.>> Copyright InteliHealth, Inc., 2002. All rights reserved.>> --> ne Holden, MS, RD> "Ask the Parkinson Dietitian" http://www.parkinson.org/> "Eat well, stay well with Parkinson's disease"> "Guidelines for Medical Nutrition Therapy for Parkinson's disease"> http://www.nutritionucanlivewith.com/>> ----------------------------------------------------------------------Hi,It may or may not be of any interest, but my mother was in the L-Dopatrial at Columbia Presbyterian Hosp under Dr. Duvoisan in 1967. She hasPD since 1948, and was very severely disabled, and had been for sometime. She responded (I guess she really had PD ha ha -- a little gallowshumor), and in fact was able to turn in bed for the first time in morethan 15 years, then was able to get OUT of bed, which scared my Dad halfto death when he suddenly found her up and about! Yes, she was able todo a little walking, and I even have a picture of her putting up herhair, in, what else, 1940's finger waves and pin curls with hair clipsfrom 1948--time had stood still for her. Sadly, the straight L-Dopabecame too much for her--she already had cognitive problems, and thehallucination were too much. She went into a fast decline when they tookher off her meds, and she died in 1972 unable to speak, move or recognizeanyone. Her sister got PD a few years later, and now I have it.I've been waiting for a cure since 1948, or as good as a cure. Certainlysomething better then levadopa/carbidopa and the myriad of adjunctivemeds and surgeries, all of which are just "patches."I'm tired of being told, we can cure it in 3-5 years, or 7-10 years ifonly we had the money. Well, Damn it, they DO have the money, but they'renot fully funding the Parkinson's Agenda, just like they didn't spendmuch on the Udall Act. I don't want my son to have to face what I'mfacing!I WANT THEM TO SPEND WHAT THEY ARE SUPPOSED TO SPEND ON THE UDALL ACT ANDON THE PARKINSON'S AGENDA----AND I WANT IT NOW! If they started to spendall they are supposed to spend today, which they couldn't--it takes timefor the NIH and others to put the funds in motion and for researchers toget hot on PD research once they see where the money is, then by the timeresearch really discovers enough for a therapy, and clinical trials1,2,and 3 take place, and then the FDA gets a whack at it, it will be morethan 10 years--much more. I have been waiting for over HALF A CENTURYfor real progress--like at least a way to stop PD. Because with all themeds and surgeries, we, especially young onset PWPs will end up just likemy mother in 1972 and just like Mo Udall in 1998!So let's tell the NIH--SHOW ME THE MONEY!!! MONEY THAT WE HELPED THE NIHTO GET THROUGH YEARS OF ADVOCACY AND HARD WORK--AND WHILE WE'RE AT IT,TELL YOUR SENATORS TO STOP THAT RIDICULOUS BROWNBACH BILL AND PASS THEFEINSTEIN BILL--ALLOW THERAPEUTIC CLONING--WE DON'T HAVE TIME TO WAIT FORPOLITICAL CLAPTRAP--WE ARE DYING!!!Charlotte Mancuso>> If you have a friend or relative who might benefit from our> timely, authoritative health news and information service, please> forward this e-mail to them. To sign up for this daily e-mail,> new subscribers should click to> http://www.intelihealth.com/signup?r=EMIHC000>> =======================> TODAY IN HEALTH HISTORY> =======================>> On this date in 1970, the U.S. Food and Drug Administration> approved the drug L-Dopa, or levodopa. The drug revolutionized> the treatment of Parkinson's disease, a disorder of the body's> motor system that can cause rigidity in the body, abnormal> walking, shaking or tremors, unsteady posture, and slowed> movements. L-Dopa and other related drugs help the body make its> own dopamine, a neurotransmitter normally produced by a part of> the brain called the substantia nigra that is missing in> Parkinson patients. Although there is no cure for Parkinson's,> some of its symptoms can be eased with L-Dopa and other drugs.>> Copyright InteliHealth, Inc., 2002. All rights reserved.>>>_________________________________________________________________Chat with friends online, try MSN Messenger: http://messenger.msn.comIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe