Help End Alzheimer’s! {The Alzheimer’s Prevention Registry}

What do you know about Alzheimer’s? Is anyone in your family suffering from this horrible disease?

Alzheimer’s is a devastating, debilitating and incurable disease of the brain. Its symptoms develop slowly, although researchers now believe that the actual neurological damage begins years or even decades before the first problems with memory or confusion surface. Those symptoms are progressive and ultimately rob the individual of mental and physical function.

Facts about Alzheimer’s:

  • It  is one type of dementia. It is NOT  a normal part of aging.
  • Approximately 5.4 million Americans are living with Alzheimer’s today, with one new case diagnosed every 69 seconds.
  • The prevalence of Alzheimer’s is projected to increase sharply in coming decades because of the nation’s aging population. By 2030, the number of cases could exceed 7.7 million.
  • Alzheimer’s is the sixth-leading cause of death in the United States.
  • It is the only cause of death among the top 10 that cannot be prevented, slowed or cured.
  • One in 10 adults is responsible for providing or arranging care for a relative or friend with the disease

Sad statistics, huh? Perhaps the one most upsetting is #5– the only cause of death among the top 10 that canNOT currently be prevented, slowed, or cured. But, scientists are working hard on trying to change that!

The Banner Alzheimer’s Institute (located right here in Phoenix, AZ) has created the Alzheimer’s Prevention Registry in hopes of finding effective ways to prevent Alzheimer’s disease as quickly as possible.

The Registry is a community of people interested in making an impact on Alzheimer’s research to help stop the disease. It will provide regular updates on the latest scientific advances and news, as well as information on overall brain health. And to overcome one of the greatest obstacles to clinical research, the Registry will support enrollment into a variety of Alzheimer’s prevention studies across the country.

There is no cost to you and the only requirement to join is really simple– you just have to be 18 or older! 🙂 By signing up, you will have access to information and resources about what’s being done to fight this disease. You might also be asked to be part of a research study, which is always your choice and you have no obligation to be part of.  Becoming a member is quick and easy, so please take a minute to join the registry.

Why am I asking you to join?

Aside from those scary statistics above, I have a personal connection to the disease (oh how I wish I didn’t!).

Meet my grandma: That’s her 29 months ago, holding 5-day-old Little Brother. She was still bright, still mostly herself. At that time, she had just recently received a “mild cognitive impairment” diagnosis, but we all knew what was coming. Now, just 29 months later, my grandma is gone although physically, she is still very much alive. A woman who prided herself (sometimes to a fault) on being in-shape and healthy, her 82-year old body is still in mostly good working order…there’s just one MAJOR  problem, her brain is not. Alzheimer’s has ravaged her brain to the point that she’s no longer herself. She isn’t interested in much anymore (other than watching tv); her mood & emotions are unpredictable and often inappropriate for the situation; she repeats herself constantly (sometimes sharing the same thing multiple times in a 5 minute time span); her “filter”  is disappearing- often saying things that would embarrass herself and are embarrassing or hurtful to others. Thus, in essence, my grandma is gone.

To say that it’s horrific is an understatement. It’s hard to process and hard to deal with emotionally. The stress on the family is immense (you can read my uncle’s thoughts about it here), unimaginably so for the primary caregiver. In this case, the primary caregiver is my mom. It’s taken a toll. And, unfortunately, we know that it will get worse from here. Unless something else takes my grandma physically, the Alzheimer’s will eventually take that too. Her neurological functioning will continue to decline until she won’t be able to walk or perhaps even swallow. It’s hard to even think about!

There’s nothing we can do to save my grandma from this now. But, I’m hoping that with things like the Alzheimer’s Prevention Registry, we can save others in the future. I don’t want my parents to go through this and I certainly don’t want to! So, that’s why I’m signing up for the Alzheimer’s Registry and I urge you to do the same!

Join the Alzheimer’s Registry NOW!

Then, go tell all your friends to do this same in hopes of ending this terrible disease!

If you’re interested in more information on Alzheimer’s Disease, here are a list of resources:

Do YOU have a personal connection to Alzheimer’s?

Disclosure: This post is part of a sponsored campaign for the Banner Alzheimer’s Institute Initiative and The Motherhood. I took part in a webinar to learn more about Alzheimer’s & the Alzheimer’s Registry. All facts & quotes above are from the Banner Alzheimer’s Institute. However, all opinions & experiences are my own, as always.

Comments

    • Sara @MomEndeavors says

      Glad I could share about it! Hoping the registry & the research they’re doing with help find better preventative measures and ultimately, a cure!

  1. Kathy Moore says

    Thanks for the beautifully written article. Couldn’t make it through without crying. It is so devasting and heartbreaking.

    • Sara @MomEndeavors says

      Thank you, Emily! It was a great picture. Sadly, we don’t have one with her like that with Baby Brother! 🙁

  2. says

    I’m so sorry for the pain you are going through with your Grandma. I too have seen the toll this disease wages against loved ones and it is cruelty.

  3. Cathy Schroeder says

    Very comprehensive and informative. Having struggled through the agony, I recognize that behind each of your words is indescribable pain. You are ALL in my prayers……

  4. Carol Dee says

    Sara you just described my Grandmother. I feel your pain. The only consolation was she was unaware of what was happening. Our tall, elegant, healthy and VERY proper Grandmother would have been horrifide at her own behavior. Looking back we are certian she had alzheimers. Dr. kept saying it was just dementia! Unfortunately it runs in the family, the women on Mom’s side. Mom was beginning to show signs in the months before her heart failed. God Bless you for sharing this message. Hold tightly to those good memories of Grandma, they will last a lifetime. Big Hugs to the whole family.

    • Sara @MomEndeavors says

      Thanks, Carol. I’m sorry it’s happened to loved ones in your family too. Definitely a hard thing to watch!!

  5. says

    Thank you for sharing your story – I am so sorry. I used to work in a nursing home in the Alzzheimers unit and it was devastating. Spreading the word about the registry now!

  6. Mary says

    My mother in law had Alzheimer’s disease and now we are seeing early signs in my husband, he is 63. It is a godsend to receive this post on my facebook page. I have just spent the weekend crying on and off thinking about what is to become of the love of my life. We will be married 29 years on Oct. 8th. I am definitely going to become as active in learning and spreading the word about this dreadful disease. I do not want to see it continue to take away those I love. I will keep your grandmother in my daily prayers. Thank you.

    • Sara @MomEndeavors says

      I’m so sorry, Mary! I can’t even imagine! 🙁 I’m so glad this post came across your FB page today though and was something helpful for you to see. We definitely need to find more to help prevent & cure this terrible disease. Hugs & prayers to you!

  7. says

    Oh my. My MIL has Alzheimer’s. We have been living with this for so many years I have lost count. She is now in a nursing home, bed ridden, cannot walk, cannot talk, and her food is ground and spoon fed to her. It has been a tough, long ride. Alzheimer’s is such a cruel disease. It is really unbearable to watch someone go through it. 🙁 My hugs to you my dear!

    • Sara @MomEndeavors says

      Thanks for your comment, Jenn! It is GREAT that The Motherhood has partnered with Banner to raise awareness. We definitely need to find a better way to prevent it, and hopefully find a cute!

  8. says

    I’m all registered and looking forward to anything I can do to help. My gram is still in the early stages, but the Dr.s said that her’s is an aggressive form. I’ve always been very close to my gram, but last time I saw her she had to be reminded of who I was. Thankfully she still seems mostly herself, but my Aunt (her caregiver) says that my once overly polite gram is losing her filter and will say awkward and sometimes aggressive things to people. She’s also broken her hip twice–the second time because she forgot she couldn’t walk because she was healing from a hip fracture.
    Thanks so much for sharing about your Grandma and your family’s experience with Alzheimer’s.

  9. Mary Noman says

    Thank you for sharing your story. I know what you are going through. My MIL was diagnosed last year at 58 years old. Early onset sucks !! We know there is a long road ahead of us. But the changes are allready so rapid.
    One day at a time.

  10. says

    it’s so sad what this disease does to our loved ones… your grandma looks like such a happy woman in that photo… glad you are helping share the news of the registry to help end this disease!!

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