58 … 11,370 … 1,000%

I know you’re probably looking at the title of this blog post wondering what it means. I promise I’ll tell you, but first, I would like to (I’m trying to think of the word that means to look back on certain events but not only can I not figure out the word, I can hardly remember yesterday, so I will just say . . . ) look back on 2016.

2016 was a very busy year for me. I can’t remember a time in my professional work life when I was this busy. All I can say is, it was a different kind of busy. Being that I’m not able to hold down a 8 – 5 salaried job doesn’t mean I’m sitting back in my recliner with Dallas (my dog) eating ice cream and watching daytime talk shows. (by the way, have y’all seen Harry, the new show with Harry Connick, Jr.? It’s  on Mon -Fri @2pm CST, on ABC. Just sayin’.)
Where was I . . . Oh yeah, 2016.

Working with several organizations (ALZ Assoc AL/FL Panhandle, National ALZ Assoc Early-Stage Advisory Group, Dementia Action Alliance, Covenant Alzheimer’s Care, Dementia Alliance International) keeps me busy. And no, I’m not complaining.
Busy =  Engaged Brain . . . Stagnant = Fog. I’ll take an engaged brain any day.

This brings me to the first number in the title . . . 58
58 
is the number of presentations I took part in during 2016. Yes, with only 52 weeks in the year, there were times when I doubled up in a week and even in a day. I didn’t care. I did what I was asked to do without question. In my mind, it was another opportunity to spread Dementia Awareness. It was another opportunity to demystify the Stigma associated with Dementia, especially Early-Onset Dementia.

No matter where I go, people still associate Dementia as that of a disease of the elderly. When I stand at the podium and tell the audience, “I’m 56 years old and I have Early-Onset Alzheimer’s Disease”, the reaction, the looks on people’s faces is consistent. It’s that of surprise, shock, and yes, disbelief. I get comments like, “My Mother / Father / Grandmother / Grandfather had Dementia and they couldn’t speak, let alone stand up in front of an audience like you do and talk about their life wth Alzheimer’s. I ask the age of their loved one and they are/were considerably older than me. I take that as an opportunity to talk about my life and the lives of hundreds of thousands of others who have Early-Stage Dementia and are able to live somewhat of a full life.

I also have people tell me how “brave” I am to talk about my life with Alzheimer’s Disease. Military personnel, Law Enforcement Officer’s, Fire Fighters and others who put their lives on the line every day are who I consider brave. I’m just a guy with Alzheimer’s Disease who can still talk about what it’s like to live with the disease. As I say in my presentation, “Alzheimer’s: Up Close and Personal”, “I don’t try to paint a rosy picture of what it’s like to live with this disease for if I did, you would not understand what we go through on a daily basis.” Although I don’t consider myself “brave”, I do thank them for the compliment. My Momma taught me to be kind.

My Dementia Advocacy isn’t just restricted to the AL/FL Panhandle. I also go to different places in the U.S. That’s what brings me to the second number in the title, 11,370.
That number represents the number of miles I have traveled by air and highway during 2016. To give you a breakdown, 5,836 were the number of air miles, leaving a balance of 5,534 representing the number of highway miles. The air miles weren’t shocking since I made a number of trips to Washington, DC and Chicago, but the highway miles are what really surprised me. 

One of the most memorable moments was during a presentation in Washington DC at the National Academies of Sciences • Engineering • Medicine for the “Preventing Dementia and Cognitive Impairment Workshop”.

I was asked to speak at the workshop, to give an abbreviated presentation of my “Alzheimers: Up Close and Personal” presentation. Looking at the other presenters, they were Ph.D’s. CEO’s, MD’s and then there was me. The only abbreviations I could think of to go behind my name was ALZ, which is how I introduced myself. 

Being that my presentation was scheduled for later in the afternoon, I was able to listen to the other presenters. It was a bit intimidating due to their Scientific, Medical, and Professional backgrounds but I knew I would be presenting from a first person point of view, talking about myself rather than someone or some thing.

When it came time to speak, I walked up to the podium. To the left of me was a wall of windows. Right before I started to speak, I looked out the window and there was the Lincoln Memorial. It was such a surreal moment. A feeling of calmness came over me as I started my presentation. During my 15-minute allotted time frame, I glanced at Mr. Lincoln’s Memorial several times. I not only felt proud to be there, but I felt as if I were representing the millions of people living in the United States who were living with Dementia. At the conclusion of my presentation, the unthinkable happened. The entire room stood up and gave me a standing ovation. No one else, the entire day, received that type of acknowledgment. What a memorable moment that was, memorable enough to stay with me. 

My local advocacy has put me in front of audiences numbering in the 20’s and 30’s to 100’s. Each time, I share my “first person point-of-view” as to what it’s like Living with Alzheimer’s each and every day.
Although I’ve spoken to Medical Professionals, Civic Organizations and Caregivers, the one group that affects me in the most emotional way are the Law Enforcement Officers. Each and every day, these men and women put on their uniforms and then put their lives on the line. That’s what I call bravery! 

chevy-police-vehicle

Through Crisis Intervention Team Training, I speak to them as well as teach them as to how to identify people Living with a Dementia-Related Illness, individuals they may come into contact with each and every day. Again, I speak from personal experiences of public confusion, disorientation, broken or unintelligible speech, etc. to give them an idea of what to look for. They ask very good questions and don’t mind if the presentation goes over the allotted time.

Most of them, as do most of the audiences I speak to, have a connection to a family member or friend who has had or has a Dementia-Related Illness.
Most of them have already had experiences with individuals with a Dementia-Related Illness and will now interact with these individuals differently and in a more positive way.

And this brings me to the last number in the title, 1,000%, which is what I give to everything Alzheimer’s.
Whether it’s:
   – preparing/updating one of my presentations
   – presenting to a small, medium or large audience
   – making sure my family knows how much I appreciate what they do for me, day in and day out

I make sure I give it my all.

I give 1,000% for I don’t know when I won’t be able to do this any longer.
When my time comes, I want to know that:
– I gave everything I had to give.
– no matter how big or small, I made a difference
– I gave people a better understanding of what it’s like to “Live with Alzheimer’s”
– I played a part in the destigmatization of Dementia
– people are now aware that Dementia is NOT just a disease of the elderly
– I helped people realize and understand that just because someone has Dementia does  not mean that it’s the end of all things.

There is still so much work to be done. There is still so much Dementia awareness and education to be shared.  I’m hoping 2017 will be a breakthrough.
Whether or not that happens, I will continue my travels and will continue giving 1,000%!

PEACE,
B

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My Day That Will Live in Infamy

October 28th, 2014 was on a Friday. I know this because I just looked it up on the calendar. It would be a day that changed my life, my family’s life, forever.

Shannon and I were sitting in my Neurologists’ office, awaiting the results from my MRI and Cognitive Testing. Once he was seated, he started explaining things, the way Dr’s do, but I remember stopping him and asking the question . . . “DO I HAVE ALZHEIMER’S DISEASE?”
He paused for a moment, and then answered, “YES.”

I don’t remember much after that. I know he explained the results of the MRI and my Cognitive Testing (which I found out later that I failed miserably) and he explained the results of the genetics and protein studies. The only thing I DO  remember was Shannon, holding my hand while I cried uncontrollably, and telling me, “It’s going to be OK. We’ll get through this together” or something along those lines.

I thought of my Mother, who, at the time, was still alive but in the last stages of her Alzheimer’s battle. (she would pass away 3 months later)
I thought of my Father who passed away in 2010 with Vascular Dementia.
I thought of my Grandfather who passed away in 1985  with Alzheimer’s.
I thought of Shannon’s Grandmother who had passed away only 2 months earlier with Alzheimer’s.

I’ll tell you, being around Alzheimer’s and Dementia Related Illnesses is difficult in and of itself, but it does not compare to Living with the Disease. I equate it to the obnoxious relative that comes for a visit . . .  and winds up staying . . . only to get more annoying as times goes on . . . and NEVER LEAVES!

I’ll tell you something else. The brain is strange and wonderful. Although Alzheimer’s has erased a lot of my short-term memory from my brain, it still allows me to remember certain things. I’ll explain.
Let’s go back to October 28, 2014. 
On the way home, Shannon and I were silent. I guess that was to be expected after the news we just received. I guess I was trying to wrap my head around what I was going to do from this point forward when I had my “Eureka Moment!”

I turned to Shannon and said, “I know what I have to do.”
She asked what I was thinking.
I said, “I have to talk about it.”
She replied with something that has stuck with me for the past 2 years . . .
“Once you put it out there, you can’t take it back!”

I have heard those words so many times in my head as well as during the many times I repeat them as part of my “Alzheimer’s: Up close and Personal” presentation. I can tell you those words have come back to haunt me for when I broke the news about having Alzheimer’s Disease, it did 2 things:
1) Being that I am not in my 70’s or 80’s and I can still do “some of the things” I have always done, some people doubt that I actually have Alzheimer’s Disease and have taken the time to tell me so.
2) I have lost a lot of friends and/or acquaintances because they don’t feel I am still the person I once was. Therefore I’m not able to converse, tell/understand jokes, etc . . .

I chalk it up to lack of Alzheimer’s knowledge and awareness in our society. That’s why when I told Shannon I wanted to talk about it, neither one of us expected I would be speaking to all types of audiences in numerous locations explaining what it’s like to live with Alzheimer’s Disease.

This is not exactly the life I wanted to live, nor is it how I wanted to spend my retirement, however, we sometimes have to accept the cards we are dealt and make the most of it. It also makes it a bit easier to have 3 people, whom I love most in the world, right by my side. Shannon, Asheton and Bradley are right with me on my Alzheimer’s Journey. They help when I need them, they help when I don’t “THINK” I need them and they are there to laugh with me, to cry with me, to joke with me and to make me feel as normal as can be. They are the true example of family.
(I almost forgot to mention, Dallas, my furry friend, who has the intuition as to when I am having good and bad days and attempts to take care of me.)

So, I can look at October 28, 2014 as the day that I received the diagnosis of having a devasting, fatal disease and have a continuous, daily pity party
or,
I can look at October 28th, 2014 as the day that put me on a positive path to help others understand this devastating, fatal disease and at the same time, keeping me “In The Moment.”

I think you know which choice I chose!

Thanks for reading!
Until next time,

PEACE!
B

Just Another Reason Awareness is Still Needed

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.
WHERE IS THE PURPLE???  WHERE IS THE ALZHEIMER’S AWARENESS?

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!

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