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Charlotte, Here is the letter that I posted that Edith referred to. The letter was my gift to all to use and edit and add their story. There is one more issue that I must address and I hope everyone will understand. I won't be around much more on the list other than to lurk now and then. My symptoms are getting worse and I am finding it more and more difficult to see and type. Robert is taking over a lot of my communication for me. Feel free to write him and give him the support that you each so graciously gave to me. His name is Robert Setzer and his email address is [log in to unmask] I will be spending more time on the Shy-Drager group as the wonderful folks there can better assist my husband with the "new symptom of the day." I want to thank each and all here on the list for being such an inspiration to me and for holding my hand along this journey. To each of you, I wish a speedy cure and a short fight and a long healthy life. With greatest respect, Deborah aka Tenacity -------------------------------------------------------------- Here is the letter that I wrote: 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 & Edwards 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. Frankly, 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 yet another elected official, another person who did nothing. Sincerely Your Constituent, Deborah L. Setzer, M. 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