I don't proofread my posts before I publish them... cause I keep my thoughts au naturale.

Wednesday, November 5, 2014

How much do you know about Alzheimer's? Take action and help prevent! @alzregistry #endALZnow

Last Wednesday I attended a webinar about Alzheimer's that was put on by Banner Health.  What I knew about Alzheimer's could have fit in a thimble.  I think many of my fellow attendees felt the same, even though when polled, 100% of us said that we knew/had known someone personally that had been diagnosed with a form of Alzheimer's.  I was glad to have the opportunity to learn more about it and how far science has come in prevention research.

Graphic courtesy of alz.org.
Banner's Alzheimer's Institute is committed to developing a new standard of care for the many individuals who have been affected by Alzheimer's.  Through innovative and groundbreaking research, they are becoming better able to understand the environmental and genetic factors that can contribute to a person developing this disease.  An important thing to note that I was completely clueless about was the difference between Alzheimer's Disease and Dementia.  I could be wrong (it's happened once or twice), but I believe my paternal grandmother suffered from dementia at the end of her life.  From what I remember (I believe she passed in 2005) her quality of life became very sub-par and she was unable to take care of herself at all.  She was a resident in a long-term care facility with 24 hour nurses on staff.  Her memory was very bad at the end as well and she couldn't remember from one day to the next who or what she had talked about.  Her short term memory was very bad.

So I learned that dementia is actually an umbrella term for Alzheimer's Disease, Vascular Dementia, Parkinson's Disease and Lewy Body Dementia.  Each has its own specific symptoms and diagnoses.  Some people believe that Alzheimer's is just a normal part of aging, but it is not.  It is a disease, which like other diseases, has a science behind it with a mystery waiting to be unlocked.  The Banner Alzheimer's Institute is very much committed to prevention and treatment (and hopefully one day, a cure.)  They collaborate internationally as well, to learn from and teach other scientists around the world about new developments in the search for a cure and methods for prevention.

Advances in genomics have helped to further research and bring about new ideas about prevention.  But what I really want my readers to walk away with is the idea of how to help.  Researchers need to conduct trials, but they can not do so without the help from many, MANY volunteers who want to help further the cause.  There is an Alzheimer's Prevention Registry that is a growing online community of over 44,000 members who are passionate about combating the disease. The website allows you to sign up for information and ways that you can help, including alerting you to studies that might be going on in areas around you.

By signing up, you are not donating your body to science, you are not committing to rigorous testing, probing questions or lifelong harassment.  It's all voluntary, you offer what help you want or none at all.  The idea behind it is that by finding out more about those related to someone who was diagnosed by Alzheimer's Disease, scientists may be able to find a common genetic characteristic that can predetermine those at risk and eventually prevent it from occurring at all.

So, have you had someone in your life that was diagnosed with Alzheimer's Disease?  I'm curious what percentage of my readers have.  How much do you actually know about the disease?  I haven't even touched the surface with information about ALZ.  If you know someone, feel free to take a look at the registry.  Looking doesn't hurt anything and maybe you will see that registering is a good thing and that the more research scientists are able to do, the closer they can come to a cure.

*I was provided an incentive for my time on this post.

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