Tag: #EarlyOnset Alzheimers

The Happiest Place on Earth

Yes, I’m talking about “THE” Happiest Place on Earth, Walt Disneyworld.
However, it’s not for the reasons you may think.

Let me explain . . . I recently came across an article by Sandy Wells of KABC News entitled, “New Approach to Treating Alzheimer’s Disease Replicates Life As It was 60 Years Ago.” http://www.kabc.com/2017/01/09/new-approach-to-treating-alzheimers-disease-focuses-on-long-term-memory/

The article talks about “Reminiscence Therapy” 

Here is an excerpt from the Article:
“Specifically, how that works, and what it has shown is reminiscence therapy really reduces agitation, improves mood and improves sleep quality, all of which are major factors when you’re dealing with the challenges of facing Alzheimer’s Disease. When you think about Town Square, really, what it is, is a complete, immersive environment that’s designed around a 1950’s – 1960’s time period, specifically from 1953 to 1961.”

For those of you that don’t know the in’s and out’s of Alzheimer’s Disease, the first thing to go is the short-term memories. It’s why I have trouble remembering things from day to day, week to week, etc . . . However, talk to me about things from the 60’s, 70’s and 80’s, I’m as clear as a bell. So I think it’s awesome that a Town Square atmosphere is going to be built specifically for Individuals with Alzheimer’s in mind. It will put them in an environment where they are comfortable, non-anxious and happy.

So what does this have to do with WDW? I knew you would ask that question sooner or later, so I am prepared to tell you.

My first time going to WDW was in 1976. At that time the park was only 5 years old and the Magic Kingdom was all there was. Since that time, I have been back at least 15-20 times. I’ve lost count. I have seen it grow from just 1 park to 4 and I have been so many times, I know where everything is.

The last time I was there was in September. Shannon surprised me with a trip for my birthday. We had such a wonderful time.
One thing that stood out, and still does, was when we were waiting for the Wishes Nighttime Spectacular (the fireworks). Shannon had to go to the restroom so I stayed where we had found a good spot. Several minutes later, Shannon called to tell me she was lost and couldn’t find me. She was more worried about me than being lost. I talked to her to find out her location and I knew right where she was. I told her to look for the light. I turned on my phone’s flashlight and held it up, shining it in her direction. She saw it and followed it back to me.

She asked me, “How did you know where I was? How did you know to hold up the light?”  I had no answer for her. I couldn’t explain it other than to say, “I don’t know, I just knew.”

 On our last day there Shannon and I were talking about how much fun we had and then, she told me this . . .
“Since we have been here, you have shown no signs of Alzheimer’s, you didn’t talk about Alzheimer’s and you didn’t talk to anyone about Alzheimer’s. You even found “ME” when “I” was lost. You were who you used to be and I want you to hold onto that.”


With that said, she took me to the ticket counter and upgraded my park pass to an Annual Pass. She said, “I want you to come back here as often as you can, take as many photos as you like and just be who you used to be.”  I didn’t know what to say. I was elated, emotional, speechless. I didn’t think it was possible to fall more in love with her than I already had, but I did. And no, it wasn’t because she was giving me this gift, it was the reason why she was giving me this gift. She wanted me to feel normal.She wanted me to feel how I used to feel. She wanted me to have the clearest, non-foggy mind I could possibly have in a place I knew so well.

On the ride back home, I thought a lot. I tried to think as to why WDW transported me back to an earlier, normal-brained time. I knew part of it was because I had visited there so many times that everything was familiar. However, something just didn’t click. I was still unsure . . . until I spoke with my sister.

One day, on a phone call with Linda, I was telling her about the gift Shannon had given me. I told how it made me feel being back in WDW. Then I explained to her about not being able to clearly understand why I felt that connection, that is, until she asked me a very simple question . . . “Don’t they play music all through the park?”

When she asked that question, a wave of emotion washed over me, just as it is now. I started hearing the sounds, the musical sounds of  WDW, in my head. It wasn’t a particular sound or a particular song,  it was just the most beautiful, joyous, happy sound I’ve ever heard. Linda, reminded me of my love of music and how musical therapy (listening to your favorite songs from years gone by) can transport you back to a particular time and place. All the pieces of the puzzle fit together and I finally had the answer to my question I had been pondering since September.

I’m not sure why I didn’t think of the music but then again, I’m not sure what I think or don’t think anymore. 

The reason I am bringing this up now is next week, I will be in Orlando to be on a panel for the The National AT Aging and Dementia Decision Tree Workshop. I am going there a little early so I can make a quick visit to WDW. Call it being a “kid at heart” or call it “just wanting to feel normal.” I just want to be who I was before Alzheimer’s came along and robbed me of so many things.

Thank you Shannon, for giving me a gift of love, a gift of happiness, a gift of normalcy. Whether you are there with me or I’m by myself, you will ALWAYS be in my heart.

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Until next time . . . “Have a Magical Day!”

B

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

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.

By

The One Good Thing

The one good thing, if there is such a thing, about having Early-Onset Alzheimer’s is the long term memories are still intact. They pop up at any time, day or night, with no rhyme or reason. They are just there like an old friend, ready to reminisce and bring a smile.

At 55 years old, I have a lot of memories floating around in my head. Being it’s the Christmas season, those memories are of growing up with my brothers and sister, racing to the Christmas Tree on Christmas morning to see what Santa brought us. Mag_transRED_AM-62_webI’ll never forget my first transistor radio. 1968. It was red with a black, leather covering. I asked my brothers what station I should listen to, they told me and the first song I heard was “Sky Pilot” by The Animals.
My Mom tried to suggest I listen to talk radio. lol  I stuck with the music!

A few years later, I got a green bike with green, metallic banana seat. It seems all the kids in the neighborhood got new bikes that year and despite the cold wet weather, we had to go outside and ride them.

Another year was walkie-talkies.

I remember my favorite toy of all time…a milk truck. When the door opened, a milkman swung out holding a bottle of milk. It was made of cast iron. My sister, whom I love and adore with all my heart, sort of bent my milk truck. I won’t say how, but the little milkman never swung out the door again!  😦

Then there was the Christmas, once we were older, my oldest brother got us all silk underwear. We still don’t know why, but it was a great gift!!!!

After a number of years, I started gaining weight . . . a lot of weight, enough to take on the role of playing Santa Claus. That was a lot of fun but putting on that Santa suit in the humid Louisiana December weather was no picnic. I lost about 10 lbs inside that suit.  🙂

My Mom loved the Christmas Season and she made it so special. Right after Thanksgiving (you remember when there were no Christmas decorations

IMG_2291 (Edited)
This is a pic I took of one of the actual albums my Mom used to listen to. They were distributed by GoodYear and Firestone 

displayed BEFORE Thanksgiving)

she would start playing her Christmas albums, singing along with Andy Williams, Johnny Mathis, Mahalia Jackson, Barbra Streisand, Steve Lawrence and Eydie Gourme, as my Dad climbed up in the attic, cursing, yelling, hitting his head while getting the Christmas decorations down.

 

On Christmas Day, Mom would break out the “once a year Christmas China.” She had just enough for the adults while the kids ate at the kids table, eating off the everyday plastic plates. I felt so grown up when I was not only allowed to eat off the Christmas China but to sit at the grown-up table. The food actually tasted better! But, enough about me.

We have a saying in our family that no holiday or family get-together was complete unless my Dad (who was known for his temper) didn’t get pissed off at someone or something.

One Christmas, I don’t remember the exact year, but it was probably in the 80’s, my Dad, as usual, got pissed off at something. One by one, my brothers (I have 3) their wives and my sister all headed for the smoking spot (the front porch) to have our “after dinner smoke.” Of course, the topic of conversation turned to the times Dad would get pissed off. We laughed and laughed and were having the best time when the front door opened and my Mom came outside. We all quieted down and looked at her. She looked at all of us with such a serious look on her face and said, “I sure wish I smoked, but I gotta go back in there!”
We lost it. She started laughing. As she walked back inside, she turned around and said, “oh sure, y’all just stay out here and laugh!” with a smirk on her face, which made us laugh even harder. That was my Mom.

She had such a great sense of humor. I guess she had to, being a stay-at-home Mom, having 5 kids in a 10-year span. She had to find the humor in anything she could. In my opinion, she loved Christmas the most. She knew the family would all be together and she would fix our favorite things. She got joy out of that.

Although Alzheimer’s affected her memories and all else that came with it over the last 10-15 years of her life, I hope some of her long-term memories were still there. I hope they brought a smile and a warmth to her heart.

Being the youngest child, my Mom and I shared a lot of things. Music is my favorite . . . Alzheimer’s is my least favorite, but I like to think that my Mom, being my Mom, somehow knew I would be the one to share her Alzheimer’s so she showed me how to live with it gracefully. When it gets tough, and it does (I’m not always the happy person you see in pictures and unfortunately, I do have a bit of my Dad in me that comes out every once in a while) I feel her with me, calming me down.

My Mom also collected bells, little decorative bells, some bigger bells, she just liked them.01043e4af1cb1845977d37e9119f4c5ba7a4af24da

Thanks to my wife, the bells continue to ring. Since we have a love for
Disney, she combined our interests and gets Disney Bells every year for the tree. I can’t tell you what that means to me. I hope that tradition continues within my family for years to come.

This will be the first Christmas Mom will not be of this earth. My Dad passed away 5 years ago so at least they are together again. I just hope he has learned to calm down a bit. But if not, I’m sure Mom will take a walk out to the front porch, breathe in a breath of fresh air and go right back in to calm him down.

Merry Christmas, Mom . . . and you too Dad!  🙂

This is from one of my Mom’s Christmas albums:
Doris Day –  Silver Bells

ENJOY and have a Very, Merry Christmas!

 

Welcome to the Dark Side

When trying to decide what to write for a new entry, I think about what I would find interesting and what new information I could share that may be interesting to others. I would’ve had a tough time trying to come to that decision even if I didn’t have Alzheimer’s, but because of my “foggy times” and my “dark, extra-confused times,” it makes it all the more difficult.

Instead of trying to re-invent the wheel, I decided to write about what I know best and that is, how I feel and how I act when Alzheimer’s sucker punches me straight in the face.

Welcome to the Dark Side!

Below you will read an excerpt from a presentation I recently gave:

(Taken from my Cognitive Resilience Presentation given at the Generational Resilience Conference in Mobile, AL)

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 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.

It seems like more than a year ago when I received my diagnosis. A lot has happened since then and a lot of it has been positive, however, there has been some dark, difficult times.

I operate on a schedule, a schedule that resides on my phone, a schedule that I wrote about in my previous post “There’s a Reason it’s Called: The Easy Way.” If it’s not on that schedule, if I am not reminded what I am supposed to do that day and when I’m supposed to do it, there’s a good chance it won’t get done. The same goes for the unexpected things that pop up.

I know you’ve heard the saying, “Don’t Sweat the Small Stuff ‘cuz it’s All Small Stuff.”  Well, the same cannot be said for me. I’m not going to speak for everyone for I know everyone reacts differently, so I will just speak for myself. Because of the DNA I received from my Father, my temper has always been a bit short. I can hear some people saying, “SHORT? Are you kidding me? Short doesn’t even come close!” I like to call it “being passionate” but that usually also gets a laugh.

What I’m trying to get at is, I worked very hard to control my temper. No one needs to hear or see that, especially if they have never been around that type of person before.  I did pretty well, only exploding every once in a while. Since my diagnosis, it happens more often. I don’t think it does because I can no longer remember when it happens or how many times it happens. So, I ask. It happens more times than I would like.

One of those times was this morning. I’m not going to get into the details. All I will say it was a very small insignificant thing and I exploded. I exploded all of my wife, all over my daughter and I would’ve exploded all over my son, but he was still sleeping. I even exploded all over #DallasTheDog! It was not only unfair to them but unacceptable to me. Just because I have Alzheimer’s does not give me a free ticket to treat them in a disrespectful way.

Once I realize what I’ve done, when I see the looks of pain and sadness on their faces, I go into my dark place. My mind becomes a darkened sphere of sadness. I think about what I have done, the words I have said (shouted) and try to figure out a way to apologize.

When I re-enter into reality, I do apologize, but it is THEY who make me feel whole again. They hug ME, telling ME it will alright, telling ME how much they love me.  I tell them how hard I have worked to keep everything under control and I know I haven’t exploded or complained in a long time, only to be told it was “just a few days ago when you . . .” or “well, it was just last week when you . . .” They do this not to throw it in my face, but because I asked them to tell me. They don’t like to because they know it will make me sadder than what I already am, but, like everything else they do for me, they do that also.

This is just one instance of what happens. It’s mainly one instance because it’s all I can remember right now. I know if I asked I could fill up pages, but I’ll save that for my book!  😉

The reason I write about this is because, when I am seen in public, I appear to be a polished, educated Alzheimer’s Advocate who can speak eloquently about my Alzheimer’s experiences. I am for the most part, because my long-term memory allows me to call upon my Public Relations days when I could speak about anything and everything. The only difference now is rather than speaking off-the-cuff, I read my words from a script. It sounds polished only because I practice over and over again, but by the time I get to the actual presentation, I have forgotten what I have practiced and the long-term PR memory kicks in. The days of learning and retaining anything new are over.

I wish the days of my darkness were over but I have the feeling they have only just begun. Whenever I am speaking of my Alzheimer’s, I mention that the person with Alzheimer’s is not the only person that is affected by the disease. In my case, it’s my family who, not only loves me unconditionally, but cares for me unconditionally, and does so under the radar.

They embrace me on my good days as well as on my dark days. They and I both wish for the dark days to be less. In my mind they are, but in their reality, I have come to find out they are not. All I can do is try that much harder. I just hope my brain understands what it I am trying to do.

 

Until next time,
PEACE!!!

B
Pensacola, FL

There’s a Reason it’s Called: Taking the Easy Way

As each day begins, we are faced with a decision . . . “Am I going to take the Easy Way or the Hard Way?”

Most of the time, this is an unconscious decision, however, if we are having a rough morning, we may “consciously” ask ourselves that question.

“The pessimist sees difficulty in every opportunity. The optimist sees the opportunity in every difficulty.”
— Winston Churchill

For me, it would be very easy to just sleep the day (and night) away and let my Alzheimer’s World just pass me by, not having to face things that normal-brained people don’t even have to think about. For instance, I now have an alarm on my phone that goes off every morning, noon and night to eat. Yes . . . to eat.

On a recent visit from my sister and brother-in-law, my sister noticed I had lost a good bit of weight. 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 forgets to tell me.

So in addition to the alarm telling me to eat, it also tells me when to take my medicine(s), when to get on my ALZ Assoc conference calls, when to read my emails, etc. Thank goodness for the alarm function on my iPhone.

“I will always find a lazy person to do a difficult job because he will find an easy way to do it!”
— Bill Gates

Then there are the decisions as to how I will spend my day. Since driving is out of the question (I very rarely drive due to my ability to get lost, which makes me anxious, which makes me not want to drive because I may harm myself or anyone in my truck or other people on the road) I have to think of what I can do to stay productive. With the “Walk to END ALZHEIMER’S” approaching, I tell myself to get outside and walk “Dallas the Dog” to get myself prepared. Sadly, I forget to do it. Ironically, when I do remember, it’s raining. No, it’s not an excuse, it’s just how it is.

Advocating is the one thing I do daily, whether it is a speaking engagement or through Social Media. When I have a speaking engagement, as Shannon says, I come alive. I think it’s because I go into “work mode”, falling back on the times when I was working in the role of my Public Relations role. In a way, Advocating for Alzheimer’s is a Public Relations role for I am educating and making people aware of Alzheimer’s. It becomes second nature to me and there is no thinking involved. It’s when the Advocating is done is when I have issues.

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”
— Theodore Roosevelt

So, in retrospect, for the past 55 years, I guess I have had a pretty easy life. Sure there were hard, tough times (broken bones, 5 knee surgeries, gallbladder removal, divorce(s), 3 heart attacks, back surgery, neck surgery, to name a few) but it was never as hard as it is now. You see, before now, all of my “ailments” were curable. I knew with a little rehab, I would be up and about and continue on. There’s no rehab for Alzheimer’s.

Each day is a rehab day for me. I try so hard to reconstruct the day before. I know I should write things down so I won’t forget but trying to remember to write things down so I can remember them the next day or the next week is hard to remember. It’s quite a conundrum. I sort of know how Bill Murray felt in “Groundhog Day.” Each day, although it’s a new day, seems like the day before yet, with not so many memories. I know that may seem hard to understand, but it’s the best way I know how to explain it.

“The Dictionary is the only place that success comes before work. Hard work is the price we must pay for success. I think you can accomplish anything if you’re willing to pay the price.”
— Vince Lombardi

So, I will keep plugging along, trying my best to remember things, but I will never give up, i will never stop fighting, and I will NEVER take the easy way!

Until Next Time,
PEACE!

B

World Alzheimer’s Day

Today is World Alzheimer’s Day.

It’s a day not so much to celebrate, but more for a call to Alzheimer’s Awareness.

It’s a day to make more people aware of Early Onset Alzheimer’s.
It’s still thought of as a disease of the elderly. those of us that have it, know this not to be true.

It’s a day to ignore the ignorance of some who use Alzheimer’s as a joke;
“accidentally deleted an e-mail . . . #earlyonsetalzheimers”
“Forgot what day my birthday was on for a solid half hour #earlyonsetalzheimers”
Teenagers and young adults will, hopefully, one day, understand how serious this is.
Until then, it’s their right to remain ignorant!

It’s a day to call awareness to the families of individuals with Alzheimer’s.
They sometimes suffer more than the individual with the disease . . . they retain the memories.

It’s a day to remember our loved ones, our friends, our role models who fought the Alzheimer’s fight,
and in who’s honor, we, ourselves, pick up where they left off.

It’s a day to support those who have Alzheimer’s. 

Attack of the Mean Tweets

I had to wait a few days before writing this for if I didn’t, it would be laced with extremely angry, foul language which I don’t deem appropriate for this arena.

To give you a little background before I get to the topic, I am very active on Twitter, Advocating as much as I can, sharing information that I feel what is worth sharing. I use an application called #TweetDeck which allows me to see multiple trends and searches all in one area. (I do anything I can to make my Alzheimer’s life less complicated.) Naturally, I have searches for Alzheimer’s, Early Onset Alzheimer’s, ENDALZ, and other hashtags related to Alzheimer’s.

I also read other tweets, some of which I find interesting, some I just skim by and then there are the eye catchers. These are the tweets that jump off the computer screen and shouts, “READ ME!” So, I do.
These tweets can be breakthroughs in the pharmaceutical area, they can be funny tweets or they can be, as it was in this particular instance, a mean tweet.

I came across this tweet and it shook me a bit:

Tweet: Up late at ma’s looking up random hashtags and of course most #EarlyOnsetAlzheimers tags are people joking about their memory #NOTFunny.

Here is a young lady at her Mother’s (who has Alzheimer’s) looking up #EarlyOnsetAlzheimers to find information about the disease and she found this. I thought to myself, “This can’t be true. Are there really people using the Early Onset Alzheimer’s hashtag to make jokes?” So, I went searching. This is just some of what I found:

Tweet: When my coworker gets mad at me for asking him the same questions daily sorry I’m like an 80 year old! #EarlyOnsetAlzheimers #Oopsie

Tweet: I just actually had to think about whether it was 2015 or 2016. #earlyonsetalzheimers

Tweet: Why do I keep forgetting that I have food in the oven?! #surpriseditdidntburn #earlyonsetalzheimers #ijustwantsomedinner

Tweet: My dog is on my bed, and I don’t remember how she got up here #earlyonsetAlzheimers

Tweet: Good thing I watched snapchat to remind my boyfriend he has a probate going on like right now. Lmao #EarlyOnsetAlzheimers

Tweet: Sat at the burrito shop for 30minutes realizing I called in at the wrong place …. #EarlyOnsetAlzheimers

Tweet: Literally could not think of the word EBOLA and just wrote the letter E on my test. #killme #EarlyOnsetAlzheimers

I was appalled. I couldn’t believe the ignorance, the insensitivity, the shallowness these individuals were exhibiting.

In anger (yes I know not to send e-mails, tweets are facebook posts when angry…but I did) I posted one of my own and here are a few responses I received.

(I am withholding their names to protect their assholishness)

The ALZ Guy ‏@TheBrianLeBlanc Aug 4
My Tweet: I cannot believe there are people this cruel using #EarlyOnsetAlzheimers to make jokes. REALLY??? 

Reply Tweet: @TheBrianLeBlanc I’m sure youll forget all about my tweet soon #norulesontwitter


Reply Tweet: @TheBrianLeBlanc when you take a joke to seriously… #Womp

Reply Tweet: @TheBrianLeBlanc I see you play the victim card so well you’ve made a career from it #envy

I then began to see some tweets from others who felt the same I did:

I then began to see some tweets from others who felt the same I did:

Tweet: Do you really have to be such an ass?

My Tweet: I’m not a victim of anything. I have ALZ. I Advocate to make people aware of this horrible disease.

Then the “Twitter Bully” posted this. I felt as if I were back in 3rd grade!

Tweet: @TheBrianLeBlanc  #norulesontwitter #hestartedit #lastword

He may as well have said “Nanny Nanny Boo Boo.” He started it? lol
I realized at that point the type of immature, ignorant bully-type individual I was  dealing with.

I also realized by showing my anger just fuels his little mind and gratifies him.

So, I blocked him.

I started thinking about why this got to me so bad. Yes, I have Early Onset Alzheimer’s and I love a good joke as much as anyone else. Was I being unreasonable? Was I taking this too seriously?

Then I realized I had been surrounded by Alzheimer’s for over 30 years starting with my Grandfather in the 80’s. I saw my Mother go from an extraordinary, church-going, intelligent woman; someone who could sing like an angel; someone who was always there for her children for as long as she was able; to someone who could no longer communicate and no longer knew who her children were. I don’t wish that upon anyone, yet it will all happen to me, just like it did to those who came before me.

I also realized that newly diagnosed individuals use #EarlyOnsetAlzheimers to find out information that may help them cope, help them understand, help them get through to another day. They don’t go there to find people making jokes or pretending to have this disease.

So, for all those “Twitterers” out there who thinks it’s funny to use #EarlyOnsetAlzheimers to make jokes, I ask you to go to you a nearby care facility. Look at the faces of people with #Alzheimers. Look at the faces of their friends and family. Go to my Twitter account and look at my face. Take plenty of mental pictures so the next time you want use #EarlyOnsetAlzheimers to make a joke, use your brain to recall what you saw and realize that each day, those of with Alzheimer’s Disease lose a little piece of our brain each and every day.

There’s nothing funny about Alzheimer’s!

Until next time . . . PEACE

B

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

Thank Goodness My Long Term Memory is Still Intact

This past weekend, I attended a reunion of sorts. We celebrated 75 years of educational achievements St. Agnes Parochial School accomplished. Thousands of boys and girls passed through the doors of St.Agnes, boys in their tan khaki shirts and pants, girls in white blouses and navy blue skirts. (the uniform code was changed later on, but that was long after I left) Unfortunately, due to low enrollment over the past several years, the decision was made to close the school.
Like anything else that happens in New Orleans, whether good, bad, happy or sad . . . IT WAS PARTY TIME! Thus, The Final Bell Has Rung Celebration was created. I’ll get to the celebration in just a bit.

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I must admit, when I first read about the closing of the school, it saddened me. So many memories came rushing into my head; teachers, classmates, activities, school plays, field trips, etc. I had my own personal movie playing in my head. I also visualized the layout of the school. (Spending 8 years in the same building, you get to know your way around) I could see the cafeteria and remember the smells of the lunches Mrs. Jeansonne prepared for us each day. I think we were all too young to appreciate how good her food was. How I would love to taste her chicken and rice again.
(Friday nights, all 3 of my brothers, at one time or another, as well as myself, attended Boy Scout meetings in the cafeteria. Although smaller in numbers, Troop 36 is still in existence today.)

It amazed me how much I remembered and how clearly the memories were. Most of the time, I have trouble recalling 11219047_10205504736072068_5639772073333305210_nevents from the day before or even 5 minutes ago, however, Alzheimer’s, if there is such a good thing about this damned disease, still allows me to recall memories of long ago.

One of my fondest memories was due to the huge enrollment in the 60’s (we were the Baby Boom Generation). The school ran out of classrooms. So, my 1st Grade class (1966) was in an old house behind the school. The next year the portable buildings were completed and they housed Grades 1-4. The main building was for the upper grades.

Moving into the main building for the 5th grade took a little getting used to. The hallways of the second and third floors always seemed so dark, long and daunting. I guess anything would look like that at such an early age. Now, still a bit dark, everything looks so small.

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Flash forward to the present and the “not-so-clear-memories.”  If not for the photos that my wife took, as well as others, at The Final Bell Has Rung Celebration, I would not have remembered who I ran into. Those who I did manage to see, although I hadn’t seen some of them in 45 years, I still recognized them. They still had the same faces, just a little bit older, sometimes grayer (like me), but I knew exactly who they were.

Some of them knew I had Alzheimer’s and were amazed how well I looked and that I remembered them. I’m not sure what they expected, but it goes along with the stigma of having Alzheimer’s. You’re supposed to be elderly and sickly looking. Don’t get me wrong, I’m not complaining or insulting anyone. I’m probably the first young(ish) person they have seen with Alzheimer’s. I totally understand and appreciate every one of them. I also ignore the stigma. Like Popeye says, “I yam what I yam!” and as I always say, “I’m Still Me!”

My wife, Shannon, stated in one of the pics she took, “Brian having a great time at the St. Agnes reception. He has seen and talked to so many old friends….he is so happy and in his element….this is ‘my Brian'”

It made me realize that she saw me as I “used to be” and it made me happy that she could see that. On the other hand, it saddens me that I am not that person all the time anymore. I want to be, and sometimes I am, but I want to be that person all the time, if not for any other reason than for her. She married a man who was funny, lively and outgoing and I still am at times, but I’m not as spontaneous as I used to be. It makes me extremely anxious and that pisses me off.

Anyways . . . as I said before, if it weren’t for the pics, I would have a hard time remembering a lot of what happened and 10416617_10205504735472053_8447422720410854227_nwho I ran into. I can be reminded of something if someone prompts me or brings up a certain situation but unfortunately, I’m not able to remember those things on my own.

As long as my long term memory stays intact, I can recall many memories, have many movies play in my head and still recall those dear friends from 40+ years ago. I just can’t remember the present too well. And that my friends is the beginning of a long, horrible road that I know I will travel, but I will travel that road with all my memories of yesteryear and those memories will include those of you whom I have had the pleasure of making your acquaintance.

Until next time,

PEACE
B

A Day in the Life

Busy Sidewalk
Picture yourself in a movie. You’re standing on a sidewalk…in a big city…at a busy intersection. You look around, everyone and everything around you is flying by at the speed of light. You try to concentrate but everything is “blurry-like,” happening so fast, concentration evades you.

Well, if you’re like me, you’re not in a movie. You’re in reality, under the age of 65, living with Early Onset Alzheimer’s Disease or some other form of Dementia.

I know I can’t speak for everyone, for everyone’s situation is specific to that individual, but I’m pretty sure certain similarities can be found.
For instance, you’re at a family gathering. These are people you grew up with, spent most of your life and time with, laughed and cried together, supported one another in times of need. You get the idea. Now, you’re sitting on a sofa, surrounded by these very familiar people and you cannot get into the conversations. You hear what’s going on and, under “different circumstances,” you would’ve jumped right in to add a comment, an insult or a funny remark, however, by the time you are able to form a complete thought, the conversation has continued at light speed and your comment or funny remark would’ve made no sense. Or worse, when you do try to jump in, you stutter so bad, everyone turns and stares at you. So you just sit . . . and listen . . . and try to keep up.
I experienced this at Easter this past year. One of my brothers-in-law noticed my embarrassment when I stuttered trying to jump in the conversation. ” He came up to me and said, “Hey, we’re all family here. Nobody’s going to judge you. Stutter away!”

This also happens in everyday life. Conversations with your immediate family are often interjected with, “you’ve told me that before,” or “oh, I remember when you asked me about that yesterday.” They do it in a way that is not insulting, but just as a way of saying, “we understand and we love you.” At least that’s what my family does with me.

I try to find humor in this by saying things like, “I know I told/asked you yesterday, I was just double checking. DUH!” Or when my wife and I are watching a movie and I get so excited or crack up laughing at a certain part, she will turn to me andLaughing say, “do you not remember seeing this movie a couple of weeks ago?” I say “no” but then I say, “you know, me having Alzheimer’s will save you a lot of money. You can buy me only 1 movie and I will watch it every few weeks and it will be like seeing it for the first time!”

Some people don’t understand humor when it comes to Alzheimer’s but, when you’re making fun of yourself and not others, well, I don’t see anything wrong with that.

I have always loved and embraced humor. Thankfully, my friends and family know and understand this and laugh right along with me. They send me jokes, funny sayings, cartoons … all Alzheimer’s related.
When I sent an e-mail to my brothers and sister, telling them of my diagnosis, my oldest brother sent back a response saying, “just letting you know, you sent this yesterday also.” After laughing hysterically, which I needed to do in such a bad way, I knew things were going to be OK.
One of my childhood friends will say, “hey, do you have that $20 you owe me?” Of course, I immediately go into panic mode, trying to remember whenI borrowed $20. This is a friend that will drive 3 hours, each way, just to come spend a few hours with me.

Then, as the saying goes, “Along with the GOOD comes the BAD!”
This is what I call my dark or foggy times. It happens with no rhyme or reason. It just comes along, punches me in the face and, well, things get a little dark.
AloneIt’s sort of like spontaneously combusting, except I burst into tears instead of fire.
I’ve always been an emotional person but since developing EOAD (Early Onset Alzheimer’s Disease) it has heightened the emotion. Something could set me off as simple as a baby or puppy video. Or, a fond memory will pop into my head of “happier, more normal times.”
Watching a sad or emotional movie? FAGHETTABOUDIT!!!! I literally fall to pieces. I cried for about 20 minutes after watching “American Sniper” with Bradley Cooper. (if you haven’t seen it, it’s a must see, but, I digress)
Then there are the times when I don’t know why I’m crying or even when I’m crying. Tears are now just so commonplace, I don’t even recognize that they are streaming down my face. Bizarre, I know, but Alzheimer’s is a very bizarre disease.

I know I’ve probably said this a lot (and yes, I do remember saying it over and over again! lol) but I am not saying all of this to gain sympathy.

I DO NOT WANT SYMPATHY NOR DO I WANT ANYONE FEELING SORY FOR ME!

I am merely trying to give you a perspective of what a day in my life is like.

DO ALL OF THESE THINGS HAPPEN MULTIPLE TIMES A DAY? YES!
EVERY SINGLE DAY? NO! (but more than not)
DO I WISH THIS ON MY WORST ENEMY? NOT “NO” BUT “HELL NO!!!”

I took on the responsibility of becoming an Advocate for Early Onset Alzheimer’s Disease. I don’t have the world stage of a Maria Shriver, Seth Rogen or other folks who are able to advocate in a much bigger way than me but, I do what I do for it is my passion.
In my Advocacy speech I say, “this is the best job I have ever had in my entire life . . . that I don’t get paid for!”
Trust me, due to my Alzheimer’s Disease, I’ve met some of the most wonderful, courageous, artistic, compassionate, beautiful people that a paying job would have never allowed me to do.

You gotta see the positive!!!

Until next time . . .
PEACE

B