Enroll in the Alzheimer’s Prevention Registry #EndAlzNow

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When I was young, I watched my maternal great-grandmother develop Alzheimer’s disease and subsequently become confined to a nursing home because it was so difficult for my grandmother to care for her. My great-grandmother passed away shortly after moving into the nursing home, and I attended her funeral when I was just 16. I was old enough to understand the science of what was happening and to realize that it could possibly happen to me – and to remember the name of the disease that turned my Mama Bagwell into a stranger before taking her.

Since then, I have watched several members of my father’s side of the family slowly deteriorate to the point where they not only did not know who I was, but they often had a hard time remembering who they were.

Alzheimer’s disease is a scary disease, and not just for the person suffering through it. The last time I visited my aunt Irene in North Carolina, she had no idea who I was. My father who was always her favorite nephew? She had no idea who he was. We were in town for my great uncle’s funeral and she was not even aware of who had passed away. Each time she asked what we were doing and someone told her that her brother had died, she looked up at us with a blank stare.

Almost all of the women on my father’s side of the family have suffered from Alzheimer’s disease.

Facts about Alzheimer’s Disease

  • Alzheimer’s is the most common form of dementia and it is not a normal part of aging.
  • Alzheimer’s is the 6th leading cause of death in the U.S.
  • Alzheimer’s is the only one of the top 10 causes of death that cannot be prevented, treated or cured.
  • 5.4 million Americans are affected by Alzheimer’s, with a new diagnosis made every 6.9 seconds.

Do you see why the history of Alzheimer’s in my family scares me so much? It terrifies me! And it should terrify you too – did you see the part about it being the ONLY one on the top ten causes of death that can not be prevented, treated or cured? Alzheimer’s is one of the only diseases for which we do not know the cause.

We need to learn more about Alzheimer’s disease. We need to learn HOW to prevent it, how to treat it and how to cure it.

Alzheimer’s Prevention Registry

I recently learned about the Alzheimer’s Prevention Initiative, a study searching for the most promising Alzheimer’s treatments for people at the highest risk of developing the disease. API is currently promoting the Alzheimer’s Prevention Registry, which has over 5,000 people enrolled right now – but their goal is to have 100,000 people enrolled by June of 2013.

I enrolled in the Alzheimer’s Prevention Registry.

Why?

Because I know the risk I face, being that almost every female member of my family has suffered from Alzheimer’s disease. You may not think you run a risk. You might not have known anyone who suffered from Alzheimer’s, but that doesn’t mean that your family is safe. It does not mean that it couldn’t happen to you.

The Alzheimer’s Prevention Registry is a community of people who want to make an difference in the future of Alzheimer’s treatment. The Alzheimer’s Prevention Registry was created to help overcome one of the biggest obstacles – the recruitment of people to participate in Alzheimer’s prevention research. Upon joining, you will have access to the latest news in research and you can be an advocate for awareness of the disease and take part in Alzheimer’s prevention studies.

Do you think you are safe from developing Alzheimer’s disease? Think again.

The warning signs are so subtle that there may be people in your family showing them and you just don’t realize it!

10 Warning Signs of Alzheimer’s Disease

  • Difficulty remembering events or information.
  • Difficulty performing everyday activities like taking medications or doing household chores.
  • Forgetting simple words.
  • Disorientation to time and place – getting lost in normally familiar places, forgetting the day of the week or time.
  • Poor or decreased judgment – buying unnecessary items, giving away money or making bad decisions that are inconsistent with past behavior.
  • More difficulty with complex mental tasks such as planning, organizing and forgetting how to use familiar items.
  • Misplacing things – finding missing items or things in unusual places such as finding car keys in the freezer.
  • Changes in mood or behavior – ranging from a depressed/withdrawn mood to becoming more irritable and getting angry and upset easily.
  • Changes in personality – becoming confused, fearful, suspicious, self-absorbed or dependent.
  • Loss of initiative – loss of interest in normal activities; may sleep or watch TV more during the day.

Sound like someone you know? More often than not, these are signs that people attribute to one getting older, but it goes much, much deeper than that. You can learn more about the differences between the normal signs of aging and Alzheimer’s here.

 

The Goals of the Alzheimer’s Prevention Registry:

  • Keep enrollees informed of latest news and advocacy to drive focus on Alzheimer’s
  • Provide an unprecedented resource of potential study participants for prevention research
  • Offer valuable resources of simple, easy to understand news in partnership with AlzForum

Join the Alzheimer’s Prevention Registry Now!

The only requirement is that you be 18 years old. You can participate in study groups if you choose, but it is 100% optional.

You can enroll in the Alzheimer’s Prevention Registry at EndAlzNow.org.

It’s a very easy way to possibly make a big difference!

 

While his is a sponsored post in partnership with the Banner Alzheimer’s Institute Initiative and The Motherhood, all opinions are my own. Alzheimer’s disease is a subject very near and dear to my heart. Please get involved!

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Comments

  1. says

    Thank you for sharing your family’s story and information on this cause. Alzheimer’s has touched our family too and it’s a heartbreaking condition. There has been a lot of promising research in recent years so I hope to see a cure or effective treatment in my lifetime.

  2. says

    My grama died from complications of Alzheimers. She was a nurse- and she even had a DNR — she got so sick she forgot she didn’t want to live and- well, you know. Alzheimers is an ugly, ugly beast. It’s in my family as well- and my dad’s living with Primary Progressive Aphasia right now- although they are also suspecting that he’s got Alzheimer’s now, as well. Eat berries. Many of them. My kids eat berries daily. I’m going to sign up for the registry.

  3. says

    I didn’t know there was a registry. My brother’s grandmother is suffering from the condition right now, and I know my grandfather’s mother did. I’ll look into the registry.

  4. says

    I think it would be so difficult to deal with Alzheimer’s disease. It just takes away the person you once knew (and who once knew you). Thanks for sharing this great resource, I will be checking it out and passing it on to my family.

  5. says

    I didn’t know they had no idea what caused it. That is incredibly scary and worrisome. I can’t even imagine what family members (like you) have gone through in being so close to it. I so, so hope that they’ll make progress on this! The registry is awesome.

  6. Shauna says

    WOW, I had no clue about this and my FIL is so scared he will get it, as his father had it! I will have to tell him about this!

  7. says

    When I was in nursing school I did home health and worked with a lot of Alzheimer’s patients. I’ll always have a special place in my heart for people with this illness, it is very heartbreaking. I had no idea there was a registry.

  8. says

    I am so sorry to hear about your great-grandmother and the family members on your dad’s side. This is such a horrible disease. I pray we can get millions of signups to the registry and really get the word out there!

  9. says

    It is a very scary disease and is no laughing matter. I do not have it in my family but I know my husband’s step grandmother died from it. She was left alone for a few minutes while her husband was sleeping and was hit by a semi. I just can’t imagine living with such a disease…

  10. says

    i was touched by the story. my great grand mother suffered from this kind of disease. when she was still alive, she calls everyone her children, even the stuff toys she think they’re her children too.

  11. says

    It’s so wonderful of you to share your story and the information about this registry and it’s resources. My grandmother had the early stages of Alzheimer’s and it was tough. I glad to hear this program is available to help those with the diagnosis and their family members.

  12. says

    Thank you for featuring such an important topic and sharing your personal story. I am glad to hear this program is available for all – its a useful resource for families.

  13. says

    Thank you for sharing – I’m going to join right now! I lost my grandpa Dec 09 and am now watching my grandma go through the same. Terrible awful hideous disease.

  14. says

    I participated in this webinar too and was shocked at how little we know about Alz and how there’s no prevention / cure right now. we definitely need to support each other and our loved ones by getting on board with this Registry!

  15. says

    I’ve always been terrified of it too. None of my family had it {that I know of} but I just can’t imagine what it’s like to be alive, but be so GONE. Major hugs about your family members, I can’t imagine what it’s like to witness that, either.

  16. says

    This is such an amazing post. I really enjoyed that presentation too and have been trying to tell everyone I know to sign up. I want this disease to be studied more so we can treat it better!

  17. elizabeth jo pipitone mccarren says

    my husband jim,has been going to the va since moving here in 2008 from illinois.He has taken all the tests from va,info has been,not been confirmed,thru va doctors,but he does have all the signs of alzheimer.He did have a brain scan earlier still do not have all the info.We did,start aetena as,his health has changed.please help us getting more information.Income has also changed.Thank you “Jo”aka wife.

  18. says

    My Grandma Carns passed away with what was labeled Dementia at the time. My Mom came from a family of 5 girls and a boy….ALL of the 5 sisters developed what was called Dementia then….but after watching my own Mom and
    was around two of my aunts going through this…I feel it easily might have been Alzheimers. All of “we” cousins are really concerned about this as we, too, may become victims of this horrific disease. Not only for ourselves, but our daughters have expressed fear of this also.
    I would be more than happy to become a part of this study so that, hopefully, within my lifetime (78 next week) we might learn more. Yes, I am an eternal optimist.

  19. Norma Oren says

    I would like to participate in any way I can. I am really interested in the physical activity prevention and would like to participate. I also feel that mind games on the computer would be benefical to everyone not just seniors.

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