Tuesday, May 10, 2005

I have so much to say as we have been in Washington D.C. at the Public policy Forum. We were recieved there with much warmth and respect from all aspects of the Forum. I met so many people throughout the U.S that have been following my story through the media. I had no idea that my story had made such an impact. But that indeed is the whole purpose of this, to bring more public awareness of the Early Onset of the disease. I was on the panel Alzheimer Advocacy Across the Spectrum. There were 4 other panelists there with me. One was a judge that was just recently diagnosed at 49 and could no longer practice. As we addressed the room of about 400 advocates, loved ones and professionals including Doctors, NIH and Aides of Congress, I noticed that when we began to respond to the questions that we were asked that the whole room was a corridor of complete silence. Silence in awe that this disease can and does strike so young. As I said in response to my question, "This disease has no preference of age, race or religious beliefs. It can strike anyone at anytime." I think the validation of my testimony really opened some eyes as I told them, "I am here to speak for not only myself but for those that can no longer speak on their own behalf about this disease. I am the voice of many voices." Little did I know what an inspiration I would become to many people that were diagnosed in their 50's and 60's and felt there was nothing else to live for in their life. I was told by many that I had met this disease head on with great strength and courage. I never really looked at it that way, I was just doing my best to survive.
I have a child to be strong for as long as I can. Though the medication certainly is not a cure it has maintained me as well as many others and given us alittle more time to speak out as well as give us alittle more quality time with out families. I think they say you get about 18 months out of the Namenda, I am a 15 months. We are seeing progression as my short term memory is declining as well as perception and comprehension. I am so thankful for the time that the medicine gave me. The Early Onset Panel was quite powerful as the was a woman named Chris ?. I believe she was diagnosed at 46 and is now 49 and doing rather well with the medications. I so much wish that my biological family could have been there. It is people like them that we are trying to remove the misconception from. They think that since I am not sitting in a nursing home dreweling waiting to be fed that this is all a put on. There is no way that I can have Early Alzheimer's, write a book, have an online support group and be an advocate. What they don't see or hear is what goes on behind the scenes as I have help in what I do. I have the support of my local Chapter that is there to direct me and show me needs to be done. I have friends that have helped me in putting my books together, I have friends that help me with my support group as well. It is so easy to set behind the scenes and judge, but it is much harder standing in our shoes as most of our work is done voluntarily and from the heart. One person told me, "If they loved you less, they would understand. They love you too much and are not able to see the pain and negativity they have caused." I am not sure that i agree with that. I am thankful for the family that i have. I have so much more than that really as I have touched so many lives through all of this, I have brought families together as well as healed broken hearts that have misunderstood the disease process. I guess this is my purpose and so I will continue on. It is getting late, so I will write more tomorrow.
Take care & God Bless! Tracy

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