by Brian LeBlanc, member of the DAA Leadership Board

Hi, my name is Brian LeBlanc

I am:

  • the Early-Stage Alzheimer’s Advocate for the AL/FL Panhandle ALZ Assoc,
  • a member of the National Early-Stage Advisory Group for the ALZ Assoc. located in Chicago.
  • A member of the Leadership Board of Dementia Action Alliance

In an effort to provide you with a clear understanding of where I am drawing my experience with Cognitive Resilience, I would like to give you a bit of background about my experience with Alzheimer’s and Dementia Related Illnesses.

  • My Grandfather passed away from Alzheimer’s in 1985. That was the first experience I had with the disease. It was also the first time my family and I ever heard the word Alzheimer’s. Back then, we didn’t know too much about the disease other than it impaired the brain. Over the next 30 years, we came to know more about it.
  • In 2010, my Father passed away from Vascular Dementia. It was at that point we understood that Dementia was the umbrella under which many other diseases were housed.
  • My wife’s Grandmother was taken from us in August, 2014 due to Alzheimer’s.
  • Finally, my Mother was taken from us due to Alzheimer’s in January of this year.

That’s 4 people in one family over a period of 30 years that were all taken from us from Dementia-Related illnesses. They were taken from us physically at the time of their death, but they were taken from us mentally years before. I think it strengthened me for what I was about to face myself.

MY ALZHEIMER’S

I developed Alzheimer’s through genetics. I carry the ApoE4 gene, the strongest known single genetic risk factor for Alzheimer’s. A single copy of the ApoE4 gene increases the risk of Alzheimer’s twofold or fourfold while carrying 2 copies gives the carrier 10X the risk. It just so happens that I carry those two copies, gifted by my Mother and Father.

In addition, I have Type 2 Diabetes and I have had 3 heart attacks. Put them all together and my chances were extremely slim to NOT get Alzheimer’s.

So now you know about my Alzheimer’s background. Now let’s talk about how I handled it.

THE DIAGNOSIS

Before I was diagnosed, I pretty well knew the outcome by seeing in myself what I saw in my family members. The difference was I was younger and I was a fighter. I was not going to take this lying down.

I have to say, knowing something and then hearing the clarification of that something is 2 different things. You think you’re ready for it but it sneaks up on you like a sucker punch.

Imagine associating a positive diagnosis of Alzheimer’s, or a positive diagnosis of any disease for that matter, to a boxing match. It’s like receiving an unseen, right hook, right on the chin!

You fall to the mat, you hear the Referee start the count … 1,2,3 …

you try to get up but you can’t move, you’re just numb … 4,5 …

you shake your head trying to get a little bit of  clarity … 6,7,8 …

the numbness starts to fade … 9 …

you hear a voice screaming at you saying, “GET UP! YOU SAID YOU WEREN’T GOING TO TAKE THIS LYING DOWN! DO NOT LET THIS BEAT YOU!”

You realize it’s your own voice screaming at you hearing the words you said to yourself earlier.

You find a strength you never knew you had and you rise to your feet before the count gets to 10.

Now I know that was a bit dramatic but I’m trying to prove a point. It is dramatic. It’s a life-changing moment. You realize your life just changed, and not for the better.

My 10 count lasted about 2 days, curled up in a ball in my bed, while I envisioned my Grandfather, my Father, my wife’s Grandmother and my Mother, not as they were before the disease took them, but at the worst part. I was at a big ol’ pity party, and I was the only guest. I kept asking to no one, “How had this happened to me?” “Why had this happened to me?”

Well, since no one was there to answer questions which I knew had no answer, I had to take my own advice and get up before the referee made it to 10. There was no way I was going to be counted out.

You see, it’s not just me that I have to think of. I’m married to my best friend, the love of my life. I can’t quit on her!

I have two step-children, who I don’t call step-children. My daughter is 21 and my son is 15. They lost their Dad back to heart disease in 2009. There’s NO WAY I can quit on them!

So, each and every day when I wake up, I get up and make a difference.

Resilience
re
·sil·ience \ri-ˈzil-yən(t)s\   noun

  • the ability to become strong, healthy, or successful again after something bad happens

Being that Alzheimer’s has no cure or prevention, I knew I was NOT going to regain normal cognitive behavior again, but what I could do is exercise my brain as much as I could to retain the cognitive ability I still had.

 

ADVOCACY

The only thing I knew in those first few days of my diagnosis was I wanted, and needed, to talk about my disease. I wanted to make sure everyone knew about Early-Onset Alzheimer’s Disease in case they were exhibiting signs. It’s the only thing I really could still do.

There’s a quote by Socrates that states:

“The secret of change is to focus all of your energy, not on fighting the old, but building the new!”

Knowing there was no cure, no way to slow the progression or no prevention for Alzheimer’s, I knew what my future looked like. I knew how the end of my life would be. I must say, it’s not something I would wish on anyone. My future looked bleak, but as I said before, I have a family that I love more than anything in this world. There was no use in looking back. There was no changing that, so I looked forward.

In what I call my previous life, I was in Public Relations, Marketing and Advertising. My long-term memory allowed me to keep those learned skills so I decided to put them to good use and become an Alzheimer’s Advocate for my local Alzheimer’s chapter. It gave me a purpose. It gave me back a passion I once had. It energized and challenged me.

But, I must tell you, advocacy, at least for me, comes with a price.

My wife sees and hears things I don’t.

She tells me, “if people believe what they see on Facebook, or see when you’re out in public on a “good day”, it’s hard for them to look at you and see you have Alzheimer’s. It’s because they don’t see you on your bad days. They see your smiling face at this event and that event, they see us out and about but they don’t see what goes on behind the scenes. They don’t see when something happens out of the ordinary, something you were not prepared for, and you freak out a bit, getting extremely anxious. I wish everyone could get a behind the scenes look at what you go through in order to Advocate.”

Yes, my daily life is a lot different than most of you. You get up in the morning, eat breakfast, shower, dress and then leave for work or whatever it is you do.

My day ALWAYS starts with confusion. First off, I never know how I will be when I wake up. Something as easy as getting dressed in the morning is a chore, not the dressing part (I can still do that) but the actual picking out my clothes. I don’t go anywhere the majority of the time so it should not be a big deal, but it is.

Then there’s the actual preparation of the presentation. You see, my brain no longer functions like it used to but unfortunately, my perfectionism still does. That’s a dangerous combination.

I agonize over every word. I time it to make sure it fits in with the time frame, multiple times. No matter how agonizing it is, unless I am physically not able to be there, I never turn down the opportunity to advocate. It’s that important to me.

My wife and kids, as well as my dog, don’t like my preparations. I get very frustrated because in the middle of everything my train of thought goes haywire, I yell, curse and then just want to quit, but I don’t. I’m not always the polished person you see up here.

I know you may be sitting there saying, “I get frustrated also. I go through the same things you do.” I’m not trying to diminish what you do, but in my case, I was never like this. Things came very easy for me. In what used to take me minutes, now takes me hours. Even the smallest of things now appear huge.

So why do I put myself through it? Why does my family continue to support me? They know how I feel about spreading awareness and educating as many people as I can regarding Alzheimer’s. They know my passion, they see my resilience. I can’t thank them or love them enough for supporting me throughout this journey.

ADVOCATING THROUGH SOCIAL MEDIA

One of the ways I advocate is through Social Media. After telling my family, I told the world. I took to Facebook, Twitter, Google+, LinkedIn and told the story of why I got diagnosed and the results of my diagnosis. Needless to say, I received a lot of comments. Some were supportive, some were prayerful and some, mostly from my closest friends, were funny. I’ve always had a sense of humor and I found when you can laugh at yourself, it helps ease the reality of the situation.

Each morning, I’m at my computer, looking through my news feed of anything and everything Alzheimer’s. When I find something of interest I “Tweet” about it or post it on Facebook, or other social media applications.

This serves 3 purposes:

  1. The news feeds keep me informed and gives me information I can utilize in my presentations
  2. It could possibly help someone who is having difficulty dealing with Alzheimer’s, caring for someone with Alzheimer’s or has questions about Alzheimer’s.
  3. It could possibly help me.

Whatever the case, it gives me a purpose and from the feedback I get from people that follow me, I know what I do is reaching people.

I also have a blog where I post entries regarding my Alzheimer’s journey. It gives people an insider’s perspective at what life is like with Alzheimer’s. I blog about the good, the bad, and the ugly. I don’t hold back because I don’t want to paint a false picture of what Alzheimer’s is and does.

STAYING RESILIENT

Other things I do on the computer is play challenging games.

I play Solitaire, not the normal game, but one called Tri-Peaks and the other called Pyramid. The results are all the same in which you have to clear all the cards but in Tri-Peaks you can play a Queen or a 10 on a Jack; you can play a 3 or a 5 on a 4 and so forth. Color or suit doesn’t matter but it’s very challenging even for the a normal –brained person.

In Pyramid, you have to get a value of 13. The King = 13, Queen = 12 and so forth. The object is to get a multiple of 13, for instance 9 and 4, 7 and 6, A and Queen and so forth.

Again it’s a challenge and makes my brain work.

I also work crossword puzzles, Word Searches, memory puzzles and anything that will challenge me and keep me sharp. As long as it’s a challenge, I will continue to do it.

STIGMA

Over the past year, I have talked to so many people … small groups, large groups and all in between. After my presentation, people come up to me, people with Alzheimer’s and Care Partners alike and they thank me for being so open about what I’m going through.

People with Alzheimer’s have a commonality in their remarks to me, and that is, “I could never get up in front of anyone, let alone a group, and tell them I have Alzheimer’s. I’m afraid they will judge me or feel sorry for me.”

I tell them, “You don’t know unless you try. You may be worrying about nothing.”

The Stigma associated with Alzheimer’s has shown that people, who may be showing signs of Alzheimer’s, won’t go to their Doctor. They are afraid or embarrassed by the way their family and/or friends will possibly treat them if they are diagnosed with Alzheimer’s. They are afraid of being stigmatized.

In my journey, I found that being open and honest with people has had positive reactions. Sure there are the people that will shy away from you because they don’t know how to deal with you now that you have a disease. They knew you before but now you have this disease of the brain. What they don’t realize is, I’m the same person. I’m still me!

I used to worry about my stuttering and my brain crashes. You see, I never stuttered before and as I progress in my disease, if I’m not following a script, I stutter all over the place. Or, I could be in the middle of a conversation and my mind goes pitch black, not allowing me to recall anything I was saying. If my wife or a good friend is near, I can look at them, they will toss me a word and I just jump right back in. It’s part of living with the Disease.

Some people try living against the Disease and it just doesn’t work. They withdraw from society, their friends their family and before they know it, they’re on “Isolation Island.” I know this place for I lived there for a brief time. It’s not a place I want to re-visit.

PUBLIC PERCEPTION

I want to start this next section off with a story of a recent event. It was also the subject of my latest blog entry.

Recently I was in a locally-owned retail store 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, when we got to the register, 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 talking to her but as time went on, a group of about 5 people, were standing around me. I was having a mini-Alzheimer’s presentation.

I answered questions about how I knew to get diagnosed, what type of issues I was having, what the signs were 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.

In my talks, I say it would be much easier if we could all wear a purple cape with a big A on it. At least that way we would have some sort of signifying mark. Being that Alzheiemer’s doesn’t come with a scar or a mark, it’s hard to tell who has it and who doesn’t. With the Alzheimer’s population getting larger the situation intensifies. The intensification fuels my passion and, it energizes me, it makes me more resilient.

THE ROLE OF TECHNOLOGY

Do you ever wonder how people survived before the world of technology?

I remember researching topics for school papers using our set of Funk & Wagnell’s Encyclopedia, writing the report long-hand, in script, or using a manual typewriter, and then later, an electric. What about the experience of going to the library? Do you remember using the card catalogue and the Dewey Decimal System to find a book? I asked my son, he’s 15, if he knew what the Dewey Decimal System was and he looked at me like I had a third eye.

I still miss the smell of a library. I must admit, I haven’t been to a library in over a decade, maybe more, and I can’t remember if they even have card catalogues now. It’s probably all computerized.

Anyway the reason I bring that up is because technology now aids the human race in almost everything we do. From computers to smart phones, instead of once being luxury items, they are now a necessity.

On a recent visit from my sister and brother-in-law, my sister noticed I had lost a good bit of weight. (I’ve lost about 30lbs in the past year) She asked about my eating habits and I told her, for the most part, I was eating very healthy. Shannon, my wife, said, “when he remembers to eat.” Hearing it said out loud, I came to the realization that I had been forgetting to eat on a regular basis. You would figure your empty stomach sends a message to your brain that says, “FEED ME!” My stomach probably does that but my brain either forgets to tell me or it short-circuits.

I now have alarms set up on my iPhone telling me to eat, when to take my medicine(s), when to get on my conference calls, when to check the mail, etc. Thank goodness for the alarm function on my iPhone. Surprisingly, it also acts like a phone.

A blog on Alzheimers.net entitled “How Technology Will Change the Future for Alzheimer’s Patients” states, 

“Technology can help us see, hear and communicate better. Applying innovations in technology to the specific needs of Alzheimer’s patients, scientists are giving many seniors a safer and more independent life.

Remembering names, losing keys and even finding their way home; seniors with Alzheimer’s face enormous challenges in dealing with what were once everyday tasks. But, the latest technological tools, from smartphone apps to satellite navigational systems, are changing the future for Alzheimer’s patients.”

My reason for getting diagnosed was due to the fact I was getting lost frequently. I would call my wife in a panic asking her to help me find my way. I had access to the GPS function but I would forget to use it or how to use it. Now, it’s become habit for me to include, “USE GPS” as a reminder on my phone so before I leave, I automatically use it.

On a recent trip to a local restaurant, only 2½ miles from the house, I got lost…very lost. I forgot to use GPS but I was determined to not call my wife. Instead, I called another woman. Her name is Siri. Siri helped me find the restaurant and helped me find my way back home. I then had to explain to my wife why a 10 minute trip turned into a 60 minute excursion.

On the plus side, after I wrote a blog entry entitled, “Saved by Siri”, the young lady that voices Siri read my blog entry and is now one of my followers on Twitter.

Also, one of the projects the ALZ Assoc Early-Stage Advisory Group participated in was hosted by AT&T.

They asked us what they could do to help make their phones easier to use and what Apps could be suggested for people with Dementia-Related Illnesses. We flooded them with ideas and along with those ideas, they walked away with new found awareness. This was a pilot program but they had never seen people with Alzheimer’s struggle to use their phone, let alone understand new technology. It was a learning experience by both parties.

THE FUTURE

So, what I do as an Alzheimer’s Advocate is to make as many people aware of Alzheimer’s Disease and what it does to the human brain and body. It’s not pretty and I don’t try to paint a pretty picture because, to be quite honest, it’s horrible. I know this because I have seen what it has done to my loved ones. I now see what it’s doing to me and to my family. So, I don’t wear rose colored glasses. They are not part of my wardrobe because there’s nothing rosy or pretty about Alzheimer’s.

I am also not embarrassed to stand before you, or before anyone for that matter, and say, “I HAVE ALZHEIMER’s.” I tell everyone I come into contact with. I’m not looking for sympathy, I do so as a way of saying, “hey, look at me, I’m not 80 years old, I look “somewhat” normal, I’m still young but I have this horrible disease.” It starts a conversation. It’s my way of Advocating, spreading the word, making aware, or whatever you want to call it. It’s my way of being Resilient!

Through my Alzheimer’s Journey, I have found what I am supposed to do. It is the best job I have ever had where I don’t receive an income. However, my payment and benefits come in many different, wonderful and beautiful self-fulfilling forms.

I have vowed to myself that I will continue to do what I can, for as long as I can, in order to benefit those that come after me. I will keep that vow and I do it in the memory of my Grandfather, my Father, my Wife’s Grandmother and my Mother.

I appreciate the opportunity to speak to you today.

My name is Brian LeBlanc and “I have Alzheimer’s, BUT it doesn’t have me!”

 

Speech delivered on October 29, 2015

2015 Generational Conference: Survive and Thrive

 

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