Apr 232012
 

My mother had Alzheimer’s disease, and what it did to her was just terrible. Her mother had it too. A few years ago, my wife, a retired nurse, noticed that I was having short-term memory problems. When I got lost trying to find my way around a familiar hospital campus, we decided that I needed to be medically evaluated. That was in 2010, and I was diagnosed with an “early-stage” memory problem.

A year later, I found out that I carry the ApoE 4 gene, which means I have a genetic risk factor for developing Alzheimer’s disease. This gene was passed down to me from my mother’s side of the family. My doctor informed me that I had mild cognitive impairment, meaning that I was at increased risk for Alzheimer’s. This January, I learned that I had progressed to early-stage Alzheimer’s.

When I was diagnosed, I got very down. But I’m an extremely positive person, and I don’t take “no” for an answer! I said a prayer and asked for help, because I was tired of being negative. I turned things around in one day. I decided that I’ve got Alzheimer’s and it’s got a hell of a fight with me!

I started giving presentations about Alzheimer’s disease. With support from my local chapter, I speak at houses of worship, corporations, community organizations — anywhere that will have me. I do this to raise awareness, and in hopes that there will be a day when Alzheimer’s can be prevented, effectively treated and cured. My kids are in their 40s, and they may have the gene. I do this work for them, and for their kids. I do it for the future.

I will continue to use my voice to fight this disease as long as I can. I will never give up. And I’m hoping you will join me by signing the Alzheimer’s Association Petition for a strong National Alzheimer’s Plan. Right now, I am with hundreds of other advocates at the Alzheimer’s Association Advocacy Forum in Washington, D.C. This week, we will deliver a message to our elected officials that Alzheimer’s can’t wait. You can make that message stronger by adding your name to the petition. To sign, click here.

The more that I’m involved, the more I find that fear is the greatest obstacle to defeating this disease. People don’t want to know how cruel Alzheimer’s is, or what’s coming down the pike if this country doesn’t get a fix on it soon. But together, we can raise awareness and work toward a future where our children and grandchildren don’t have to face this disease.

Today’s guest blog comes from Bill Frost, a member of the Alzheimer’s Association’s® national 2011 Early-Stage Advisory Group, a council that helps the Association raise awareness of the issues faced by people with Alzheimer’s, advocate for research and support programs and provide the best services possible to people with the disease. Diagnosed with early-stage Alzheimer’s in January 2012, Bill is a retired telecommunications executive and consultant. He and his wife of 51 years, Nancy, live in Houston, Texas. They have three children and one granddaughter.

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  9 Responses to “Why I Signed the Petition for a Strong National Alzheimer’s Plan”

  1. Let’s continue the battle

    • My friend Carol was diagnosed at 50.

      . The doctor gave her 5 years. She just passed. What a loss. I miss her

  2. My grandmother and mother both suffered with Alzheimer’s. I pledge to continue to support this cause

  3. My Grandmother and Mother-In-Law both had it and I believe my Aunt maybe in the early stages also……I believe this is worse than Cancer (not that Cancer is not horrible in me Book) because at least with cancer for the most part you still have your mind and are aware of the things around you on most, if not all levels….with Alzheimer"s you lose this while you are still in decent if not good physical shape…..Imagine a female waking up one morning and there is a Strange Man in her bed…..how scary would that be….and not know it was your husband! I pray for a cure for this horrible disease. God Bless all that suffer and their families that have to suffer and endure what this does to their loved one…

  4. I signed this petition because I lost an very important man in my life on March 31,2012- my Papa it was hatd for my family watching a person that was so full of life become a shell of who he was. I urge everyone to sign this petition and lets find a cure.

  5. My dad was diagnosed with this terrible desease when he was only 57 yrs old…..we mourned for 15 long years until his death at 72 yrs of age….because of his early onset and having lived so long we donated his brain to science to further help understand and possible cure for this debilitating desease!! He is finally ay peace….love and miss him….Denise Mills

  6. My Mother has dimetia/Alzeheimers and is in a horrible nursing home. She has developed bed sores.. She is 85 years old, almost 86 years old. She hasn't spoken a word in over 6 months. She sleeps, lies there with her eyes open or stares into open space. They get her up a few hours and put her in a geriactric chair. She has to be fed, puree` food and there are certain foods that she is not supposed to eat and they feed them to her anyway. I have made countless comments for them to restrict her diet. It is very hard for me to visit and watch her, as I was an only child, (now 55 years old) and I have many problems in my own life; I lost my job and have no income. Almost gone through my retirement $$. HELP!!! Something has to be done, for they cannot tell us anything, how to help, what they want, etc. I will sign any petition; there is no cure for my Mom now because of her being in latter stages, but with more research, perhaps something can be made available for future men and women. Thank you.

  7. Reaching out to all those involved with Alzheimer's. _ _Have you seen the show Raising Hope? It is about MAW MAW and Alzheimer's. It is a show that ridicules and makes fun of a patient with Alzheimer's who is dying and all those who care for that patient. I have sent a letter to the Manager of the Producer Greg Garcia of Fox network. I am a retired nurse who worked at USF. My mother died of an early onset. It was not funny at all. I still grieve. As organizations who are very much involved in Alzheimer's, I am pleading that you read the following and assist me and 10,000 others who want this show to be taken off the air. Death is not Funny for anyone. They didn't ask for it and since there is no cure or really any good treatment, it is gut wrenching to watch and be able to do little. There is a legal petition going around to stop production. If profit is a motive, then turn it around to be an educational film to assist as more and more cases are being diagnosed daily.. . How sad we have stooped to laughing at those we love die Please read my following comment on the letter I sent and if you have suggestions or can help in anyway. All I am asking is for RESPECT. Thank You

  8. Keep hope that we can find a cure. Thanks for being a spokeperson as it is important to educate those that are younger so that they may work to avoid those things that may contribute to the disease. Those that have this disease also need to stay educated and be pioneers in treatments that may help others. Don't ever give up.

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