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World Alzheimer’s Month And The Alzheimer’s Prevention Registry

Home / Causes / World Alzheimer’s Month And The Alzheimer’s Prevention Registry
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Courtesy of Terry Gatrost (cousin)

September is World Alzheimer’s Month.

Today I am going to talk a little bit about the Alzheimer’s Prevention Registry. Alzheimer’s is another one of those devastating words that families around the world fear.My grandmother, pictured here, has been diagnosed with Alzheimer’s Disease and it is ravaging her mind and body very quickly. Slowly, but quickly, if that makes any sense. We can see her rapidly declining, yet she continues on. In some ways, dying a slow death. I never want her to leave us! Never! But at the same time, it tears my heart out to see her declining. Sometimes, she thinks I am my mom, her daughter, who passed away in 2003. I just go along with what she needs to keep from upsetting her more. I can’t bear to cause her more confusion.

I had the wonderful opportunity to attend a call yesterday that gave startling facts about this dreadful disease. I was stunned with some of the statistics. I had some questions that were answered and they left me in shock.

For instance, One question I had: For those that have Alzheimer’s Disease, do you simply forget memories and events and die WITH Alzheimer’s Disease or can you actually pass away FROM Alzheimer’s Disease?

Answer: You can die FROM this Alzheimer’s! Your mind can, literally, forget how to do everyday tasks and bodily functions such as how to swallow. You can choke to death because you forget how to swallow!

I have to admit, that answer came as a major blow. I can’t fathom my grandmother forgetting how to do such simple things as swallowing food or drink, or taking a breath or talking! Her heart is in terrible shape. She has had triple bypass surgery in the past so her body suffers with heart troubles. That is something we have come to, sort of, expect, you know? That it will be her heart that takes her from us. Not that any of us want her to leave us. We never ever want that. We just know what to expect with her bad heart.  But now, with these new facts, I see that Alzheimer’s is a very real, very frightening disease that is consuming her mind and her body.

Something else I learned is that there are a couple of different forms of Alzheimer’s. The most common form affect us usually after the age of 65 with the majority of cases being after age 80.  The other form is very rare, affecting 1% of those diagnosed, is hereditary, and can affect you as early as in your 40’s. In some cases even in your 30’s!!! This is from rare, genetic mutations that case an early onset. This was explained more in depth but, honestly, I couldn’t wrap my head around it quickly enough to give you more detail. Something about Apoliptoprotein (I’m sure I spelled that wrong) and its three “flavors” of 3, 2 and 4 and if you get it from both your mother and your father. We also learned that certain PET scans can look at how the brain uses sugar for energy when diagnosing. It’s all very scientific so I cna’t explain it very well.

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.
As our country ages, the number of people touched by Alzheimer’s only continues to increase. Already more than a third of the U.S. adult population has some personal connection to the disease, through a spouse, family member or other blood relative.

Here are some more facts and statistics for you that you can also tweet (tweet links at bottom of post):

  • Alzheimer’s is the most common form of dementia and is not a normal part of aging
  • Alzheimer’s is the 6th leading cause of death in the U.S.
  • Alzheimer’s: only one of top 10 causes of death that cannot be prevented or cured
  • 5.4 million Americans are affected by Alzheimer’s. Someone is diagnosed every 6.9 seconds
  • 1 in 8 Americans over age 65—nearly 1 in 2 Americans over age 85 currently diag with Alz.

Alzheimer’s vs. normal aging – https://www.banneralz.org/physicians-plus-referrals/symptoms-plus-diagnosis.aspx

Alzheimer’s is a TYPE of Dementia.

Alzheimer’s vs. dementia, and prevention – https://banneralz.org/patients-plus-family/alzheimer’s-what-you-need-to-know.aspx

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The call I was on was sponsored by Banner Alzheimer’s Institute (Alzheimer’s Prevention Initiative) and they have a registry set up that ‘d like to tell you more about along with more info and resources regarding Alzheimer’s Disease.

What is the Registry?
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.

Who is eligible for the Registry?
The Registry is open to anyone 18 and older. The only requirement to sign up for the registry is 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!

Your information will not be shared without your explicit approval and will only be used to inform you of the most relevant Alzheimer’s news and potentially to connect you to applicable prevention studies.  Medical institutions and nonprofit organizations participating in the Registry, along with their partners, must agree to follow the strict federal regulations ensuring the privacy of personal health information.

If you are ready to join, you can do so at https://registry.endalznow.org/

 

Early-onset Alzheimer’s, which involves about 3 percent of all Alzheimer’s diagnoses, is identified by symptoms that begin before age 65.

I have also included some fact sheets for you to download. I can’t possibly fit all the info here. 😀

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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

Alzheimer’s Prevention Registry (5,000 people are currently enrolled; the goal is to reach 100,000 enrolled by June 2013) – https://endalznow.org/

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This was my grandmother about 10 years ago. She was very active, very mobile, HATED having her photo taken as you can see by the surprise on her face and was a huge part of our lives. Today, she is in a wheel chair, in nursing care and doesn’t always remember who we are. Her children, grandchildren and great grandchildren love her very much. I pray every day for a cure to this disease.

PLEASE join with me to help fight Alzheimer’s! I joined the registry and I hope you will too!

I have created a Linky showcasing posts from all the bloggers that were on this call. Be sure to visit their blogs and check out their very informative posts.

Tweetable Tidbits:

#endalznow

UPDATE: My beautiful grandmother passed away from this horrible disease, July 26, 2017.

Disclosure:  This is a sponsored post written by me on behalf of Banner Alzheimer’s Institute Alzheimer’s Prevention Registry. ALL opinions are strictly my own and were not influenced in any way. Let’s end Alzheimer’s!!!

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