Fighting To Change The Future: Why Alzheimer’s Disease Matters To Me

Alzheimer’s is the sixth leading cause of death in the United States. More than five million Americans are currently living with the disease, and every 68 seconds, another American develops Alzheimer’s. It is the only disease for which there is no prevention, treatment or cure. By 2050, an American will develop Alzheimer’s every 33 seconds… unless we all join the fight to stop it. Twenty-something’s, it will be our generation that finds a cure for this horrific disease. We just have to spread the word and get people involved. This is not something that only happens to old people—it is happening more and more each year to people in their 40s and 50s. The age of our parents. Do I have your attention now?

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Changes in numbers of deaths between 2000 and 2010.

According to the Alzheimer’s association (ALZ.org): “Alzheimer’s worsens over time. Alzheimer’s is a progressive disease, where dementia symptoms gradually worsen over a number of years. In its early stages, memory loss is mild, but with late-stage Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment. Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but survival can range from four to 20 years, depending on age and other health conditions.”

Alzheimer’s runs in my family. Most of my mother’s side of has died from the disease and while I always knew it was in the cards for my grandmother, I had never seen any signs of the disease in her. She is the smartest person I know, she can single handedly complete any crossword puzzle you put in front of her and there isn’t one jeopardy question that stumps her. I have been in awe of her mind my entire life. A few years ago while I was in South Carolina visiting her for Thanksgiving, we were in the car driving to dinner and she commented that she couldn’t believe the local radio station had started playing Christmas music already—we all commented back that it is ridiculous how early the Christmas tunes start and changed the subject. No less than five minutes later she made the exact same comment to us with no recollection of already making it just a few minutes earlier. Very unlike her and a sure sign something was wrong. Although this was just a small, minor sign—it was a sign that the woman I love so much had started on the path towards dementia.

Alzheimer’s doesn’t just happen to older people. Two hundred-thousand people in their forties and fifties are currently living with early onset Alzheimer’s. One of those 200,000, is a 54-year-old close friend of my mothers who was diagnosed about a year ago. He has two children in their early 20s and there is nothing he can do to slow the progression of this disease. He is a prisoner to it. The disease decides if he remembers his friend’s names, recognizes his colleague’s voices and recall’s his own life experiences. How devastating.

The thing about ALZ is that it makes you sick in the most traumatizing way, not just for you but for your family. It takes your moments from you. It takes your personality. An old song on the radio no longer brings back that beautiful memory it always has because that memory is gone, never to return. Seeing an old friend doesn’t warm your heart with pains of growing you’ve experienced with them because you don’t remember who he/she is. The smell of bread in the oven doesn’t remind you of all those crazy thanksgiving spent around your kitchen table because you can’t remember the smell of bread when it hits your nose.  Holding hands with your wife doesn’t bring back the many kisses you’ve shared because you don’t know that she is your wife anymore. The experiences that literally build who you are are no longer available to you.

In the final stages, you don’t recognize your family. In fact you are scared of them. Most people in the late stages of Alzheimer’s are violent because they don’t know you, they are scared of you.  The people that you’ve spent your entire life loving, now scare you. Can you even imagine how heart breaking that is?

The good news is, there is hope. The more people that get involved in the fight to end ALZ, the more funding we can get to find the cause and hopefully a way to treat this disease. It all starts with us. I am part of a group consisting of 10–15 members who put on fundraisers, spread awareness, spread knowledge and give our time to finding a cure for this disease. We raise thousands of dollars each year through our efforts and we have fun doing it. This group is how I cope. It is how I don’t let the fear that one day my mom might not recognize me consume me. It is the only way that I will be able to cope if one day that does happen, by knowing that I spent as much time and energy as I could fighting the disease for her.

The man mentioned above, our friend with early onset—he is brave and bold and is trying to do everything possible in his time to fight this disease. Together with his family and his large support group we raised $10,000 last year during the ALZ annual fundraiser (find the one closest to you here- http://act.alz.org/site/PageServer?pagename=walk_homepage). Next year our goal is $25,000—you can do that, too!

Darlings, take this disease seriously and please get involved. I can rarely walk into a group of people where most have not been touched by ALZ. Have you been touched? Then touch it back, fight this terrible disease in whatever way you can, by walking, donating money, donating time, donating talents, or just talking to others about Alzheimer’s awareness. We can make a difference. You can change things.

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Rachel
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