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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LeBlanc: Coping With Early On-Set Alzheimer’s

This is a transcript from the 3rd interview in a series I did with the University of West Florida’s Sandra Averhart of WUWF. I’m also including an audio link to the actual interview.

http://wuwf.org/post/leblanc-coping-early-set-alzheimers#stream/0

Since November of 2015, we’ve been getting to know Brian LeBlanc of Pensacola. He has been diagnosed with early on-set Alzheimer’s. Now in his mid-50’s, he has known about his condition for a little over a year now. As we continue our conversation, we focus on how the disease has impacted his daily life and how he’s dealing with it.

Brian LeBlanc of Pensacola, who’s sharing his story of life with early on-set Alzheimer’s disease.

“Being this is radio, you can’t see what I’m doing right now, but I’m holding up my cell phone,” said LeBlanc. “That’s my constant companion.”

According to LeBlanc, his phone tells him everything, even when to eat.

“Over the past year, probably, I’ve lost probably around 30 pounds. It wasn’t because I was trying. It’s because I was forgetting to eat,” he said.

It was his sister who made note of his weight loss, when she visited a few months back. LeBlanc thought to himself, “I’m just eating healthy.” That was until his wife pointed out the reality that he wasn’t remembering to sit down for a meal.

As a result, he now has reminders on his phone of when to eat, when to take medication, and when to do things such as check the mail or let the dog out.

“Um, without it, I simply would not remember, because you can’t,” LeBlanc said.

Repetition is another aid that he utilizes, noting that before our first interview at the WUWF studios, he must have looked at the email 20 times.

The email was sent to him by Dr. Rodney Guttmann, Director of the University of West Florida Center on Aging, who first proposed the idea of LeBlanc sharing his story with the WUWF audience.

Our first interview was on a Tuesday. But, when it comes to the specific days of the week, LeBlanc says he says he has no idea.

“I know numbers. I can look on a calendar and I’ll see the tenth, you know, be here,” said LeBlanc. “But I don’t know the days of the week anymore.”

LeBlanc can identify weekends, he says, because his family members are home for two days in a row. But, confusion sets in if you throw in a weekday holiday or a three-day weekend.

“That messes me up, really bad,” said LeBlanc.

As a result, his daughter, who’s in college, will write her schedule on a board indicating when she’ll be away and when she comes home.

LeBlanc says access to such information is helpful because he’s found that he doesn’t do well with surprises.

He and his family members also have noted more frequent mood changes.

A friend of his talked about a feeling in the front part of his head that he couldn’t explain. LeBlanc referred to it as being his ‘fog.’

“As hard as you try to see something you just can’t,” LeBlanc said. “Sometimes, it’s completely shrouded. Sometimes it’s in the middle; it depends. But, you can’t see, and it comes and goes. It’ll come in, roll in, roll out.”

It’s on those ‘foggy’ days when LeBlanc can’t get behind the wheel of a car.

Right now, he’s functional and GPS is his best friend. But, he fears getting lost, which triggered his diagnosis, and he has no comfort that he’ll arrive at his intended destination.

“I’m extremely nervous about driving,” said LeBlanc. “That’s why I’ll only go places that I sort of know.”

LeBlanc says he prefers simple routes, without too many turns, adding that under no circumstances can he drive at night.

“That’s completely out of the question, because, I look for landmarks or street signs. At night I can’t see them and it’s not good.”

At night or when he’s in a fog, LeBlanc’s wife and daughter drive him around. Again, LeBlanc is still capable now under certain circumstances, but he knows it won’t be long before he’ll have to give us driving altogether.

“I’m worried that not only will I harm myself,” LeBlanc said. “But, if I harm someone because I was confused, I would never ever be able to live with myself with that.”

In particular, LeBlanc does not want to have to experience what his father went through when LeBlanc’s oldest brother took his keys away from him.

“My father, he forgot a lot of things, but he never forgot that.”

And, as we wrapped up our first extensive conversation, LeBlanc was feeling pretty good about the fact that he made it through the interview without notes. His public speaking on behalf of the Alzheimer’s Association has helped.

He’s part of Alzheimer’s support groups and serves on the executive committee of the Florida/Alabama Panhandle Alzheimer’s Association.  Also, LeBlanc is chronicling his experiences in a blog, Alzheimer’s: The Journey…my Alzheimer’s Life.

In general, though, he says speaking isn’t nearly as easy as it used to be.

“People used to tell me I could talk to a tree and have a conversation,” said LeBlanc. “But, now I have to choose my words, thinking before they come out of my mouth to make sure that they sound okay.”

They do sound okay, and in 2016, we hope to hear more from Brian LeBlanc, talking about the changes in his life due to early on-set Alzheimer’s and how he’s coping.