Just Another Reason Awareness is Still Needed

I was in a locally-owned retail store yesterday afternoon when, because I was unable to find the item I was looking for, I had to ask for help. Confused and a bit frustrated, I tried to explain to the store employee what I was looking for but the words came out stuttered and, I’m sure, unintelligible. To avoid further embarrassment, I stopped and told the very nice lady, “you’ll have to excuse me but I have Alzheimer’s and my words don’t come out right at times.” Well, she just laughed and said, “I know what you mean. I get Alzheimer’s when I drink!” and laughed a bit more.

I didn’t get mad because I’m used to reactions like that from people who don’t know about Early-Onset Alzheimer’s. Instead, I explained to her that I had Early-Onset Alzheimer’s Disease and that it affects people under the age of 65. I thought she was going to cry from embarrassment. I told it was OK and that I deal with this type of reaction every day. It gave me an excuse to Advocate. Here I was standing at the cash register with, first just her but as time went on, a group of about 5 people, talking about Alzheimer’s.

I answered questions about how I knew to get diagnosed, what type of issues I was having, what were the signs before diagnosis, etc. After about 15-20 minutes of fumbling and stuttering my way through Alzheimer’s related information, giving them the http://www.alz.org website, telling them to look up “Know the 10 Signs,” I left.

I have to say, for the next few hours, I was bothered by what happened. Not because she made a joke, but because here was yet another person who didn’t know about Early-Onset Alzheimer’s. Other diseases have no age limit. You can tell someone you have cancer and they will immediately know it’s possible. For me to tell someone I have Alzheimer’s when the majority of people think that only the elderly can have this disease, simply means that more awareness and education is needed.

Right now, you can’t watch a football game during the month of October and not see pink. I think it’s wonderful that Breast Cancer Awareness is out there and in your face. The pink ribbons and football gear works, for so many people are now very familiar with that disease. For years, Jerry Lewis used to do the Muscular Dystrophy Telethon on Labor Day, not only raising awareness, but millions and millions of dollars. Because of that, people are aware.

The real question should be, why do other disease receive billions of dollars from the National Institute of Health when Alzheimer’s doesn’t even crack the billion dollar ceiling? Again, I hold no ill-feelings towards other diseases. If anything, being that they have now found treatments, preventions and cures, it gives me hope that one day, the same will be said of Alzheimer’s. For now, well, we keep advocating.

Does the fact that a cure/treatment/prevention isn’t even on the horizon stop me from advocating? NO!
Does it frustrate me? Yes!
But again, does it stop me? NO!

The only positive from all of this is there is a group of people (a small group) that now know about Early-Onset Alzheimer’s. If one of those people shares that information with someone who may be showing sign of Alzheimer’s and that person goes to their Doctor, well, I have done my job.

One at a time. It’s slow, but at least it’s progress.

Until next time . . . PEACE!

“I Have Alzheimer’s, BUT It Doesn’t Have Me!”

So, I Walk!

Today is the day I walk at the 2015 Pensacola Walk to END ALZHEIMER’S. You could say it’s the Super Bowl for the Alzheimer’s Association.

Over the past few Saturday’s and continuing into November, throughout the United States, Alzheimer’s supporters have figuratively and literally joined hand-in-hand with one another as well as with individuals with Alzheimer’s.

If you’ve noticed, the faces and ages of people with Alzheimer’s get younger and younger. That’s because Alzheimer’s is no longer a disease of the elderly. It is now affecting individuals under the age of 65, individuals in their 30’s, 40’s and 50’s, individuals like me. Early-Onset Alzheimer’s is not as well known as regular Alzheimer’s, so I walk. 

I watched my grandfather, my wife’s grandmother as well as my mother all live productive and wonderful lives. Instead of going into their golden years enjoying their children, grandchildren and great-grandchildren, I watched their memories be taken away by this cruel and horrible disease. It has no cure so, I walk.

I know what my future looks like. I wish I didn’t, however, I don’t dwell on that. Instead, I live in the moment because the moment is all I have. I still have my long-term memories but my short-term, let’s just say I don’t remember too much from yesterday. Thankfully I have 3 people in my life whom I love more than anything in this world who lovingly, and without a moment of hesitation, help me each and every day navigate my way through the day. So, they walk with me.

Cancer, Heart Disease, HIV / AIDS, as well as other diseases have had success in finding prevention and cures, so I know there’s hope. I know first hand about heart disease having survived 3 heart attacks myself so I know there is hope for Alzheimer’s. The difference between Alzheimer’s and other diseases is funding. Where other diseases receive BILLIONS from the National Institute of Health for research, Alzheimer’s is still in the MILLION dollar category. Through these walks we not only raise awareness for Alzheimer’s, we also raise funds. So, we walk.

Without hesitation, I have vowed to my family and to my loved ones who are no longer with us, that I will fight the fight; that I will advocate as much and as often as possible; to make sure EVERYONE I come into contact with will know, not only about Alzheimer’s but Early-Onset Alzheimer’s. So, I walk.

On behalf of my family, myself and all those who have Alzheimer’s who are not able to speak for themselves, I thank each and everyone you for supporting us.

I may have Alzheimer’s but it doesn’t have me . . . So I will continue to walk!