Let’s Change the Narrative!

Each day, I scour the news sources looking for the next “big thing” in the Dementia and Alzheimer’s World. Some days there are very interesting stories full of hope and promise and then there are days when the headlines lead you to believe the next “big thing” has been found, only to find the words, “hopefully” or “in the future” or “in the next 10 years” in the body of the article . . . you see where I’m going.

The thing I continuously see are people like me who are Living with Alzheimer’s and people who are Living with Other Dementia-Related Illnesses being referred to as Patients and/or Sufferers.

I’m not sure about you but I am NOT a PATIENT of any newspaper, magazine, documentary, news channel or TV host.
I also don’t SUFFER from my Alzheimer’s. I struggle.

Part of what I do when I’m advocating is to remind everyone that, although I have a disease that will, one day, contribute to my death, I also remind them that I am NOT anyone’s patient except for my Doctor. “XXX” is my Doctor and I am his/her patient. That’s it. No one else has the right to claim me as a patient. I find that to be highly insulting and it gets on my very last nerve.

When I, and others, are referred to as “SUFFERERS”, it also strikes a nerve. I will speak only for myself on this for I ‘m not sure if others feel like they are suffering. I don’t feel that way. Suffering means, “the state of undergoing pain, distress, or hardship.”  I can understand the hardship part from a financial point of view and on the days when I am in my fog, but I still don’t consider myself suffering.

If I offend anyone by saying this, I don’t mean to. I’m simply stating how I feel. There may be some folks out there who feel as if they are suffering. The only thing I can say to that is, each of us are individuals, and life is going to affect us in individual ways.

The focus right now on those of us Living with Alzheimer’s or other Dementia’s is “SEE ME, NOT MY DISEASE” or “PERSON CENTERED FOCUS.”
Person Centred Approach is about ensuring someone with a disability is at the center of decisions which relate to their life. What it boils down to is, who knows us better than US? Instead of making decisions for us or about us, why not include us in the conversation. Ask US what we think. Discuss options with us . Just treat us for who we are and that is human beings.

I know in the later stages, I will be unable to communicate my wishes as to what I would like or dislike. With that said, I already have an Advanced Healthcare Directive and Appointment of Agent as well as a Durable Power of Attorney. It was important to me to make sure I was making the decisions for my life. I did not want to put that responsibility on anyone else. As a side note, as long as I can still eat, there will be peanut butter, chocolate and of course there will be music.

My advice to anyone and everyone is to have these documents prepared. My advice is free and you, as an individual, can do with it what you like.

I’ve said many times, “This is NOT how I expected to spend my retirement but, it is what it is.” I try to be productive every day, BUT . . .
Sometimes I am, sometimes I’m not.
Sometimes I write, sometimes I watch Netflix.
Sometimes I just sit, look at photographs and listen to music.
Sometimes I go to Starbucks.
Sometimes I just sit and think.
Sometimes I just sit and cry,  but not for long.

I’ll admit, it’s a hard life, but I know there are others who have it worse so I don’t dwell in the darkness for long. I have loved ones who I can call day or night. I have friends, a lot fewer than what I once had (that’s a blog post for another day) that I can lean on when needed, and lastly, I have myself.

In my Alzheimer’s mind, I’m still me. I can still drive, I can still work, I can still fix technological things, I can still balance a checkbook. OK, I can’t physically do ANY of these things anymore, but that’s OK. I know what my limits are . . . most of the time.

At the end of the day when I lay my head on my pillow, I know I’m still me. I’m not everyone’s patient, I’m not suffering and I’m not the me I used to be but that’s OK. You see, I don’t worry about the things I wasn’t able to do today for when I wake up tomorrow morning, I won’t remember. I’ll just re-invent myself all over again, until the next day, and that’s OK with me.

Until next time,
PEACE!
B

I Miss Reading . . . and A LOT of other things!

A friend of mine recently asked me if I had ever read the book, “tuesdays with Morrie” by Mitch Albom. She said, “he allows himself 10 minutes a day to mourn the passing of the old him.  After that, he lives in the moment for the day.”

I thought about this and although I do “live in the moment”, I don’t take the 10 minutes a day to mourn the passing of the old me. To be honest, I probably take a little too much time to mourn. 

“Don’t cling to things because everything is impermanent.” 
 Mitch Albom, Tuesdays with Morrie

51AhqmiD-oL._SX344_BO1,204,203,200_For instance, I thought to myself, “I would love to read this book, but I wouldn’t be able to remember what I’ve read.” Don’t get me wrong, I “CAN” still read, I just don’t retain anything I have read. Then I started thinking of all the books I’ve read over the years and how much I enjoyed reading. Then I got sad. Instead of taking 10 minutes to mourn, I took a little more . . . OK, A LOT MORE!!!
I not only mourned not being able to retain what I’ve read, I mourned not being able to work anymore. Working not only gave me a purpose but it also provided me with an income, an income that helped me provide for my family. Now, through Social Security Disability Insurance, I receive approximately 3% of the salary I used to receive. I’m thankful for receiving that but sometimes, I only look at the glass half-full.

“I give myself a good cry if I need it, but then I concentrate on all good things still in my life.” 
 Mitch Albom, Tuesdays with Morrie

I also mourn the loss of my driving privileges. Due to my brain hemorrhage that was discovered back in February of this year, as well as the temporary loss of my ability to speak, my Doctor strongly urged that I discontinue driving. I knew what “strongly urged” meant and I knew that would be the last day I would ever drive. I mourned a lot over that . . . and still do, however, it wouldn’t compare to the amount of time I would mourn if I hurt someone in my vehicle or in another vehicle.

“This is part of what a family is about, not just love. It’s knowing that your family will be there watching out for you. Nothing else will give you that. Not money. Not fame. Not work.” 
 Mitch Albom, Tuesdays with Morrie

I mourn the loss of friends. When I told Shannon that I wanted to “talk about my Alzheimer’s” she turned to me and said, “just remember, once you put it out there, you can’t take it back.” She was right!
My thought was, talking is my strong suit. By talking about it, it would hopefully help others have a better understanding of Alzheimer’s Disease and how individuals like me can still live a pretty good life. Also, by talking about it would keep me engaged, keep my brain working.
What I didn’t know was how many people would stop speaking to/with me because they didn’t think I would be able to carry on a conversation with them. Also, as I wrote about in a previous blog post, there are those who feel I’ve been faking this whole thing.
I wish I didn’t mourn that as much as I do.
However, looking now at the glass half-full, I have met some pretty phenomenal people in the Dementia World. These individuals are some of the bravest, funniest, most intelligent people I have come to know.
I have also discovered my true mission in life and that is being an International Dementia Advocate. It gives me purpose, drive and passion to a level I have never experienced. 

“Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” 
 Mitch Albom, Tuesdays with Morrie

I mourn a lot of other things, too many to go into here, however, I’ve realized by writing this blog post, and although I didn’t read “tuesdays with Morrie” I read some of the quotes from the book (some of which I’ve listed here) and I made myself a note and stuck it on my desk so I will see it every day. I may have to put one on the bathroom mirror, one by my recliner, make it my opening screen on my phone . . . 

  10 min

Whatever it takes to remind me to keep the mourning at a minimum.

“Life is a series of pulls back and forth. You want to do one thing, but you are bound to do something else. Something hurts you, yet you know it shouldn’t. You take certain things for granted, even when you know you should never take anything for granted.” 
―  Mitch Albom, Tuesdays with Morrie

I’ve never tried to paint a rosy picture of what it’s like to live with Alzheimer’s. I wouldn’t be honest with myself or with you if I did that. Just know, I don’t do it for sympathy. I don’t want nor need anyone’s sympathy. All I want to do is to live the best life I can possibly live in the remaining years that I have, which I hope will be many.
Until then, I’m going to continue my Advocacy Journey, doing the best I can to share awareness and education as it relates to everything Alzheimer’s and other Dementia-Related Illnesses.

Oh yeah, and remember to mourn no more than 10 minutes a day!

Until next time . . .
PEACE

B

Miracle on Main Street USA

Miracle on Main Street USA

mir·a·cle
ˈmirək(ə)l/
noun

a surprising and welcoming event that is not explainable by natural or scientific laws and is therefore considered to be the work of a divine agency. 

My most memorable, recollected use of the word “Miracle” was during the 1980 Olympics. Al Michaels of ABC Sports, with only 2 seconds left on the clock, shouted, “DO YOU BELIEVE IN MIRACLES?” as the under-dogged USA defeated Russia for the Olympic Gold Medal in Hockey. 

There was a three-act play, “The Miracle Worker” by William Gibson based on Helen Keller’s autobiography, “The Story of My Life”  which premiered in 1962.

Of course, you have all seen the  Christmas classic (1947), and re-make (1994), of the movie, “Miracle on 34th Street.”  

(Now you know where I got my inspiration for the title of this blog post)

OK, enough about all of that.


If you haven’t read my 2 previous blog posts, you may want to read them. Doing so may give you better insight to understand what has been going on with me. 

In case you don’t want to go back, here’s a very quick recap:
I woke up on the morning of February 5th unable to speak. Not from laryngitis but something that was Alzheimer’s related. I spent the next 2 1/2 weeks struggling to find my voice but, was unsuccessful.

That should bring you up to speed.
In between the 2 1/2 weeks with no voice, Shannon and I celebrated our 9th Wedding Anniversary. We both made each other handmade cards and went out to dinner.

I’ve always prided myself on being creative and was very satisfied with the card I made for Shannon. However, on this Anniversary, she went all out.

I will share a quote from her letter:

“You are my husband, my best friend, the ying to my yang, my partner in life.
My gift to you this year is memories . . .
So, Brian LeBlanc, you made it through 9 years of marriage . . . What are you going to do now???

“YOU’RE GOING TO DISNEYWORLD!!!” We leave in 7 days!
Being that I couldn’t talk, I let my tears do the talking. 
She knew what I needed and she knew where I needed to be.
She was hoping and praying for a miracle.

We didn’t tell anyone where we were going and being I couldn’t speak made it kind of easy for me to comply. I even had to remind myself NOT to post anything on Social Media. (I used sticky notes on my desk to remind me.) We wanted it to be just about us . . . a change of scenery to our favorite place turned out to be just what we both needed.

 

I should have known something was up when, on our way to Orlando, “Brown Eyed Girl” came on the radio. I sang every word of the song. I still couldn’t speak at the time, but I sang that song. It was such an appropriate moment, for when I was with the band “Mass Kunfuzion”, every time I sang that song, I dedicated it to Shannon. So there we were, rolling down the Interstate, on our way to the “Happiest Place on Earth”, and I’m singing to my wife. 

Sunday was our first visit to the Magic Kingdom. It was like re-visiting an old, familiar friend. Although we were surrounded by tens of thousands of people, a sense of peace came over me.  I know it sounds strange but if you’ve read my previous posts where I speak of Disneyworld, it should come as no surprise as to how I was feeling.

 

The following is my own recollection of what happened on February 19th, 2017, that “Miraculous Sunday.” I’m sure Shannon, with her crystal-clear memory recall ability, could fill in the gaps, but this is what I remember.

As it was nearing the time for the fireworks show, I said something. What I said, I have no idea. (Up to that point I was only able to say very few, single words. The rest of my communication was conveyed by using a whiteboard and a text to speech app)

Shannon turned to me and said, “What did you say?”
I think I shrugged my shoulders.
She said, “you just said a complete sentence!”
I thought she may have heard someone nearby and only THOUGHT it was me.

She told me again, “you said a complete sentence!”

Even though I couldn’t remember, not only what I said, but couldn’t remember saying anything at all, I remember feeling very warm.

Then the fireworks started.

I remembered distinctly what came next.
I heard the words, “Oh my God, that is so beautiful!” come out of my mouth.
I immediately turned to Shannon and she was smiling the biggest smile I have ever seen.
She said, “You did it again. YOU TALKED!”
I replied in a very tearful voice, “I KNOW!” 

Again, I felt a burst of warmth spread over me.
I knew something had just happened. I didn’t quite understand what happened, or why it happened, but it happened. We just held each other and it was like no one else was around. 

(the photo below was taken immediately after the fireworks while I was still experiencing unexplainable moisture flowing from my eyes. I think I was still in shock as to what just happened.)
img_5978

Why my speech returned at that precise moment still befuddles me.
Did a miracle just happen?
Contrary to popular belief, miracles do happen.
Shannon and I firmly believe this was a miracle.


It didn’t happen slowly, it was all of a sudden like a switch was turned from off to on. I don’t think I have stopped talking since then. When I’m at home and no one is around, I talk to Dallas. He’s an excellent listener and never, ever disagrees with what I’m saying.

For those of you that have known me for many years know that I love to talk. My family knows that I love to talk. For them, I’m sure it was sort of a vacation for them to not have to hear me talking non-stop about everything and anything. They are, however, thankful and relieved that I can speak once again because they know how lost I was without my voice.

Shannon and I kept the news of the return of my speech to ourselves. We told no one.
The reason being, we didn’t want to say “HEY!!! I CAN TALK AGAIN!!!” and the next day, or 2 days later, my voice disappeared again. So, we were overly cautious. Also, I didn’t want to give anyone false hopes, especially Shannon. So, we remained quiet. 

Imagine what it was like. Here I was, not able to speak for 2 1/2 weeks and all of a sudden, I could speak again, but I had to keep it on the down-low. So, what did I do? I talked to everyone in Disneyworld. It didn’t matter who they were or whether they understood English. I talked and talked and talked.
I think, by the time we were packed up and headed back home, Shannon was probably afraid I was going to talk her ear off. But I didn’t.
So, here I am, able to speak again, and “miraculously” feeling a bit more clear-minded. Maybe I’m imagining it or maybe it’s real. I don’t really care. 
I’m just going with how I feel.

 

Needless to say:

  • I will never forget how Walt Disneyworld makes me feel
  • I will never forget how Walt Disneyworld made me feel as normal as I could feel
  • I will NEVER forget the Miracle on Main Street USA on Sunday, Feb 19, 2017.

Lastly, as far as believing in miracles, well . . . Shannon and I are TRUE BELIEVERS!

Until Next Time,
PEACE!
B

And So IT Begins . . .

Before I start writing this post, I want to make sure everyone understands why I am writing this. I’m NOT having a pity party and this is NOT a call for sympathy. I do not want or need any of that. This is just a factual account of my Alzheimer’s Journey as to what has recently occurred.

SOMEWHERE BETWEEN SATURDAY NIGHT(2/4/17) AND SUNDAY MORNING (2/5/17)
I LOST MY ABILITY TO SPEAK.
BECAUSE OF THE DIZZINESS AND CONFUSION THAT ACCOMPANIES THIS,
MY DRIVING PRIVLIGES HAVE BEEN SUSPENDED.

I can still communicate by text (the word suggestions help me quite a bit), by composing emails and by writing on a whiteboard.
Thank God I can still spell.

During my 56+ years of living on this earth:

  • My voice has gotten me both in and out of trouble.
  • My voice has allowed me to sing in church for masses, weddings, and funerals, as well as for public (non-secular events) for over 45+ years.
  • My voice has been used for the last several years for sharing my Alzheimer’s Journey. My hope is that my message has reached at least 1 person and that 1 person is better off now than they were before.

All my life, I’ve been told I could have a conversation with a tree if no one else was around to converse with. Now, because of my Alzheimer’s Disease, my voice has been silenced . . . for now!

For those of you who know me understand what it meant for me to talk. It’s the one thing I’ve always been told I do very well. I will stay confident in the hopes that I will regain, some, if not all, my speech. Giving in to this disease is not an option for it is an admission of defeat. As long as I am able, I will not allow this disease to defeat me. I owe it to my family to stay as positive as I can . . . which is not always easy.

Thankfully, I can still laugh, which, according to my wife is what first attracted her to me. I knew it wasn’t my looks or my height (she’s taller than me) so I’m glad I had (still have) a loud and hearty laugh. I hope to give her many more moments of laughter for years to come.
As a side note in a very short period of time, I’ve learned to use “creative sign language” as well as write my “sarcastic comments”  on the whiteboard. That brings smiles, laughs, as well as eye rolls!

In a recent MRI, the results showed a minor brain hemorrhage and quite an increase of Amyloid Plaque from 2014 (the year of my initial diagnosis) until now. (if you like you can click on “Amyloid Plaque” to get an idea of what I’m talking about.)

The build up of Plaque on the left side of my brain could be responsible for the misfiring of neurons, thereby not allowing words to flow from my brain to my vocal chords. How it allows me to write words, I have no idea. I’m just thankful I still have a way to communicate.

I remember when Alzheimer’s Disease caused my Mother to lose her ability to speak. She would try to communicate the only way she remembered how and that was through song. She no longer remembered the words but she sure knew the tune and would either hum it or “la-la” it in perfect pitch. It was up to us to try and figure out what she was trying to say. She always tried to converse in one way or another and I owe it to her to do the same.

I can still say, very few, short and simple words but nothing in sentence form. I’ll take what I can get. 

Again, I’m not asking for any sympathy or pity.
What I will ask is that you keep my family and me in your thoughts and prayers. I am not alone on this journey. Shannon, Asheton and Bradley are right here with me. Without their unconditional love and never-ending support, I would not be able to do this.
I can’t forget my little furry care partner, Dallas the Cajun Dog. The amazing intuition he has is uncanny.

In 2 days, I will escort my beautifully, stunning wife to dinner as we celebrate another year of married life. I picked the place and Asheton made the reservation for me. Just because I can’t speak doesn’t mean I have to stop existing. With a mini-whiteboard or small notepad, we will celebrate with delicious food, great conversation as well as our love for each other.

I’ll keep you posted on my progress.

Until next time . . . PEACE!

B

 

You Took My Breath Away

In honor of National Alzheimer’s Awareness and Family Caregivers Month, I wanted to take a moment to Honor Shannon, Asheton and Bradley, for doing what they do, day in and day out, to support me as we all travel along on this Alzheimer’s Journey.

I often think back to our wedding day. It’s still far back enough in my long-term memory that I can recall a lot of the details. I also have photos I can refer to when my memory gets clouded.

The one thing that stood out in my mind on that day, and still stands out today, was when I first saw you. I’ll layout the scene:
It was sunset, a cool afternoon on Pensacola Beach. Your family, some of my family and a few close friend had all gathered at the edge of the sand awaiting your arrival. The minister gave me instructions to not look back until he gave me the go ahead.

He told me when you started walking down the steps towards me. I could hear comments of, “Oh, how beautiful!” and “Oh my God, she looks so radiant.” I’m sure there were others but I don’t remember those. Then he told me to turn around.

(I know have told you this many times before but I want everyone who is reading this to know the effect you had on me.)
I’ve never before had my breath taken away nor has it happened since. It was a one-time event . . . so far. When I turned and caught sight of you, I literally couldn’t breathe. I could only stand and stare at this beautiful woman, dressed in white, walking towards me to become my wife. I had never seen anything or anyone so beautiful.

IMG_2059 editedI’m not sure of the words that were said for I heard nothing but waves and birds. I’m sure the Minister was saying some nice things, but I was still not really breathing. I do remember thinking to myself, “What in the hell did I do to deserve the love of this beautiful woman?”  (Just so you know, I still think that today.)

We both wrote our own vows and although I don’t remember exactly what we said, I know the words were beautiful and from the heart. (I also know those words and the original pieces of paper they were written on are in the hope chest along with our other wedding items for safe keeping.)  

I do know that somewhere, mixed in with our own words, were some of the more traditional “wedding vow” words, particularly, for good times and bad, in sickness and in health. When we finally got around to saying our “I Do’s”, I wasn’t just marrying you. Your children were also accepting me into the family.

Back then, we had no idea how true those traditional wedding vows would ring true.  

Over the course of our marriage, as a family, we have dealt with major and minor surgeries, cuts and bruises, illnesses and just plain everyday stuff. We got through it all with the support of each other.

The reason I bring this up is because each time something happened, we healed, we were able to return to whatever was interrupted.
Now, it’s different. You and I both know that I will never be healed and I won’t be able to return to whatever has been interrupted because there is no returning to what was. I try to not think of that and think more of the positive, to remind myself to “Live in the Moment”, to enjoy those moments and attempt to hold on to as much as I can.

You don’t seem to let too much stop you, or at least you hide it very well. Instead, you have stepped up your game. You have readjusted your life. Asheton and Bradley have readjusted their life, but none of you complain. You allow me to do what I “think” I’m able to do and you allow me to fall, both figuratively and realistically, and the three of you are always there to pick me back up and get me back on my feet.

You’re always there, but never in the spotlight. Unlike me, you’re a behind the scenes type of person, staying in the shadows. Asheton and Bradley are like you in that aspect, allowing me to do what I do but still getting 100% of all of your support. They had a very good role model.

The three of you have allowed yourselves to appear on TV, radio, newspapers, magazine articles and so forth, all on my behalf but also stepping outside of your comfort zone for me. I can never thank you enough for everything all of you do but I try to show my appreciation each and every day.

I know our future is both known and unknown. Most people say the unknown is what scares them. I think it’s because they don’t know “the known.” We do! It makes the unknown a lot easier to navigate. I’m fortunate to have 3 travel companions coming along with me on this journey and I couldn’t ask for anyone better.

I know I thank you for something several times a day and you graciously accept it telling me, “Oh it’s fine. You would do the same for me.” I see Asheton and Bradley wearing their purple Alzheimer’s shirts to school, while shopping, going to movies, etc, and you wear purple more than I do! As I said before, I couldn’t ask for anyone better.

I don’t think I deserve what the three of you do for me, especially for what I put you through on my bad days. I wish I could control that part but unfortunately, I can’t. No amount of reminders on my phone or Post-Its seem to stop the fog from rolling in.  

Along with being National Alzheimer’s Awareness Month, it is also Family Caregiver’s Month. I know you like the term Care Partner better than Caregiver but I didn’t create the term. If I did, you know I would have come up with the correct description.  To me, we are explorers, traveling on a Journey, making new  discoveries each and every day, never knowing what is waiting for us around each bend.

Thank you for taking my hand, letting me lead when I can, you taking the lead when I can’t and just being by my side every step of the way. I love you more than you can ever dream possible.  

B

Happy Thanksgiving

Happy Thanksgiving

Thanksgiving. A day where we pause for a moment to give thanks. Give thanks for what? We give thanks for everything big and small, important and insignificant. We give thanks for life!

What that life is, is totally up to you!

If you determine your quality of life, based upon whether you’re rich, poor, healthy, ill or somewhere in between, your rating scale is off. Money cannot and does not buy happiness, it buys material things. If material things make you happy, and you surround yourself with these things, then fine. However, a materialistic world often blurs the realism of life. Just remember, we were all born into this world the same way and we all go out of this world the same way . . . penniless.

This reminds me of the poem, “The Dash” by Linda Ellis.
(here’s a link to them poem:The Dash)
The dash is the little, bitty mark in between the date we were born and the date we die. Although not nearly as big or prominent as the dates on either side, it is the most important.

Two stanzas of Ms. Ellis’ poem stand out for me:

For that dash represents all the time
that they spent alive on earth.
And now only those who loved them
know what that little line is worth.

For it matters not, how much we own,
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

So, on this Thanksgiving, I give thanks for my life, my dash.
Is it perfect? NO, but nothing ever is.
Is it hard? YES, but nothing worthwhile ever comes easy.
No matter the imperfections or the hardships, I wouldn’t trade my life for anything. I consider myself the luckiest and most loved man in the world, and for that, I am THANKFUL!