I read the Voices of Alzheimer's Disease Report sent out today by the National Association and it is very depressing to say the least. It seems that the stigma is just as real now as it was when I spoke at Public Policy in 2004. Nothing has changed except the faces and the voices. The voices all echo the same thing, so it appears that all of the Town Hall meetings and conferences are doing nothing except making the circle of dementia family bigger.

What is it going to take to get the attention of not only National but professionals to make them realize that, YES, this disease is very real and we ARE mothers, fathers, brothers and sisters in our 30's and 40's that are being diagnosed with EOAD, FTD, etc. This isn't just a story anymore, it is lives that are devastated because there is NO CURE!!! Promises that a cure is just around the corner, well I have been hereing that promise for 7 years and some of you longer than that. I just hope and pray that it is here for my son's generation so if it is heriditary then he still has about 23 more really good years before he has to worry. Will there ever be a cure, even in his life time? I hope and pray to God that our children do not have to suffer through this. I would come back and go through it again to spare them suffering this disease. When will it become more
than just a concern?

Tracy

Tracey I can not agree with you more. My husband is 64 and now in the moderate to severe stage. He had an altercation with the police due to his disease. Thankfully all charges were dropped but my one plea to the policeman was there are many faces of Alzheimer's please remember my husband when you come upon someone acting out.

Tracy I hear you loud and clear. 15 years into my marriage my Motherinlaw was diagnosed at 55 she was showing signs earlier. We thought at that time this was an isolated case. By that timne I had 3 children. This desease is so strange I watched several of her sibblings and my sisterinlaw struggle with this desease

I along with my husband was caregiver for my motherinlaw and for years I heard there is a cure around the corner., Well guess what!
My Husband and I are caregivers now for my eldest son who is widowed with 2 boys. The pain is unbearable at times. No clinical trials for anyone under 50 now and still no cure. For some reason Thank God the desease has not affected by husband, It is Genectic. My other children live in fear. I pray for my son my family and all of you. It seems like the drug companies are calling all the shots. Maybe we should all go on the Oprah show as a large group to try and call more attention to all of us.

Thanks for allowing me to Vent. Crying in Il.

Hi Tracy,
I just happened to have read your post from December 28, 2007, and I want to thank you for that. I have had so many frustrating feelings caring for my mother lately, but this gives me a better understanding of how she must feel. Even though I always remind myself that it is not her, it is the disease, it is still hard. You sound so much the way she used to be. Loving, caring, faithful to all, and so much more that would take forever to put into words.
My mother has been living with me, my husband, and my eight year old daughter since my dad passed away from cancer last July. He was only 59.
She is 54 and in the mid stages of Alzheimer's, and showed signs in her late forties, but it was dismissed as depression or her age. I get so furious when I think back about that. She is the third generation, and I already feel hopeless for myself and my daughter. My great grandmother was diagnosed in her mid to late 80's, her mother was diagnosed in her late seventies, and now, my mom-my best friend, in her early fifties.
I am thirty now, and I get terrified when I lose a word, or can't think of what I was going to say. The only thing that goes through my mind, is this it, here it comes.
All I have thought about lately is exactly what you have expressed here. When will this disease be recognized as more than a disease that the elderly get? What about the ones who won't get to live out their lives to fulfillment?
I just want to thank you for being an advocate for EOAD, and for speaking out. You are an inspiration!
Sincerely,
Michelle King

Hi There Again Tracy,

I agree with you about the report not giving any answers. But am not sure that the Town Hall Meetings were about getting answers to us. I looked at the report as a gathering of information by the Alzheimer's Association in order to demonstrate to The Powers That Be that there is a need that must be filled and filled now. We have waited patiently but that time is over. That we, PWD ~ People With Dementia, need and demand help and answers NOW. We have been a silent but growing group that will no longer stay silently in the dark background. We are demonstrating that we are willing to help ourselves and each other. That we have identified many of the issues, medical and emotional, and are ready to find answers.

It is PWD like us Tracy that can make a difference. We have to stand up an take the inititive to make it happen. I am baby steps closer to getting our group for Early Onset Alzheimer's started here in San Antonio. It is scary to take the leap, but again I just keep remembering that I can help myself by helping others. It starts by one step at a time and perseverance.

Here is the link through the Alzheimer's Association for the the report. (www.alz.org/news_and_events_14351.asp) Just do a cut and paste into your browser. EVERYONE needs to read it. PWD and their partners, other loved ones and caregivers, everyone.

I hope to be able to provide a copy to all that attend our support group meeting or call and inquire at the Alzheimer's Association in regard to Early Onset. I got a lot of strength out of it. It validated me and my feelings. Just to know that my insecurities, fears, and needs are voiced by many helps. I am not alone and my abnormal is normal. I am sure that you understand.

Remember, There Is Strength In Numbers & God Loves Us All.

Lynn
the spotted dog

Dear Tracy and Lynn and all,
I agree with Tracy that OUR VOICES haven't been heard yet. It is very frustrating! I, also, agree with Lynn that WE can't give up the fight! WE NEED TO SPEAK LOUDER AND LOUDER UNTIL OUR VOICES CAN BE HEARD! The Public Forums are great but we need more. We can't give up now even if we are tired and angry and frustrated because we speak for OUR CHILDREN as well! I may be passed over but my daughter will NOT! It is war! War against the disease! War against the prejudices! War against the Politicians and People of Power that turned their heads because they either refuse to accept or continue to be ignorant and in denial. I will fight for my daughter and everyones' daughters and sons!!!!
Dear McCain and Obama, WE ARE HERE AND WE ARE NOT GOING TO BE SILENCED!!!


Peace and Hope,