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!
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.
– 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%!