Taking Care of Our Own

This post is a bit different from what I normally post. I don’t mean to offend anyone, I’m just passionate about what’s going in our Nation. 

For all the folks that want to open our borders to immigrants from other countries, immigrants who will be supported by us, I have a solution.
Open YOUR home to support these individuals as well as their families, and be responsible for all of their actions. Feed them, clothe them and take of their medical needs. That is what you want for them, right? 
Giving them an opportunity, right? Well, now you can. No, I’m not being negative or prejudice. I’m being real.

With that said . . .

Why not take care of our Veterans who need our care? You remember our Veterans? The ones who fought for our rights and freedoms? Our Veterans who, because of their service to our country make it possible for you to stomp on and burn our Nation’s flag? Our Veterans who have to wait because a non-US citizen “needs” medical treatment because they matter more?

Why not take care of our aging population, the ones who gave us life, the ones that took care of us first?

Why not take care of those of us who have a fatal disease and put those dollars into research, respite care and hospice care?

We need to take care of our own, before we begin to take care of others.

I’m sure you take care of your families first, making sure they have all their needs met. Why can’t we, as a nation, take care of each other first and then, and only then, look to taking care of others?

If you still insist on taking care of others first, let me know. I will gladly take donations to help fight Alzheimer’s Disease, the disease that assisted in taking the lives of many of my loved ones and will ultimately assist in taking my life. There are also other organizations that could also desperately use your help.

If you still insist on taking care of others, open your home to a Veteran, a member of the homeless population, or any other US Citizen that could use some help.

See what needs you can assist with in your own community. There are so many individuals right here in my community that are doing wonderful things for the betterment of the people that live here. They are awesome individuals who do these things, not to call attention to themselves, but because they are fulfilling a need for the individuals that live here.

Now, if you are STILL not satisfied, I’m sure there are many Middle Eastern Countries that will welcome you, as well as your support, with open arms and will even provide you with free housing. It may be cramped, dirty, hot and uncomfortable, but don’t worry, your visit will not last very long.

That is what you want, RIGHT?

Have a Great Day!

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

Discovering a Gift I Already Had

I was recently challenged by my friend Diane Tisseur, Groovy Lens Photographic Art (check her out) from Quebec, Canada, to post a Nature Photograph for 7 days, while challenging a new person each day to do the same. I’m so glad she did.

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Photo from Day 1 taken about 3 years ago 

Being asked to do something with my photographs forced me to look at what I had photographed years ago. Seeing these images brought back feelings of joy, peace and satisfaction. It also filled me with a sense of pride to look at some of the beautiful things I created using my camera, my iPhone  but especially, my mind.

Seeing these images transports me back in time, a time I can remember clearly. It’s like listening to your favorite song or smelling a favorite/familiar scent. You go back to that particular time and experience what you were feeling at that time. Being my short-term memory is depleting, utilizing my long-term memory allows to clearly experience the joy and excitement I once had about photography.

It is also forcing me to think outside the box  in an effort to take new photographs. It’s giving me a new sense of purpose, a feeling of excitement. To be honest, it’s giving an escape from thinking only of Alzheimer’s.

So, thank you Diane, for giving me a gift I already had but was hidden in the back of the closet. I’m digging it out and will be putting it to good use.

PEACE,
B

Alzheimer’s Has, at least, Two Faces

Alzheimer’s Has, at least, Two Faces

 

In 1996, Barbra Streisand  directed and starred in the movie, “The Mirror Has Two Faces.”  Streisand plays a homely-looking, Columbia University English Professor with low self esteem issues, who, through a personal ad placed by her sister, meets Jeff Bridges , a Columbia University leading figure in the Math Dept. They agree to marry based upon what they describe as a “palsy-walsy pseudo-marriage.” They see each other, as well as themselves, being not who they really are but seeing themselves only on the surface.

At this point, you may be asking yourself, “What does Alzheimer’s have to do with a Barbra Streisand movie? Well, other than the title of the movie, it has to do with the perception of how we see ourselves and how others see us.  This brought to mind what I wanted to write about. Confused? Great! Welcome to my world.

Maybe this will help:
More than several months ago, at least I think it was, Shannon (my beautiful, understanding, loving wife) and I were returning home after a presentation I gave to a local Rotary Club. I always ask her how things went for I know she will be honest with me. This time, instead of giving me an answer, she started to cry. (I must tell you that due to the fact that Alzheimer’s has already begun its destruction of my short-term memory, I don’t remember many things, however, I do remember this.)
I asked her what was wrong and this is what she told me.

“You stand up there looking all polished and professional, reading from your prepared speech, smiling, cracking jokes, basically being the man I fell in love with, the man I married, the man I  terribly miss.
They, your audience, don’t see who you are when you are away from the spotlight.
They don’t see the confusion, the anger, the anxiousness.
They don’t see the man who can’t remember how to do the simplest of chores.
They don’t see the man who has a reminder on his phone to eat and to take a bath.
They don’t see the man who can’t remember something he was told 5-10 minutes ago.
They don’t see the man who, without a prepared speech or notes can’t speak without stuttering or going blank.
So I’m sad and I’m pissed off that you can show that side of yourself when you are in the public eye but they don’t get to see what Alzheimer’s has done to you . . . what it has done to us.
How do you do that?”

I was speechless. To be honest, I had no answer. I just sat there feeling sad. I knew she wasn’t mad at me, that she was mad at the situation. I feel sad right now writing the words as I recall that event, not sad for myself, but for her. You see, she thought she was getting someone she would get to spend the rest of her life with travelling, laughing, living out all the dreams we shared. Now she sees only glimpses of that man . . . glimpses of me or who I used to be.

The only explanation I could give her was the Public Relations / Marketing / Advertising guy was stored somewhere in my long-term memory bank. When I got in front of an audience, whether it was 1, 10 or 100, something clicked. All of the insecurities and difficulties that Alzheimer’s brought on just went away and the long-term stuff came flooding forward. It only happened when I was Advocating for Alzheimer’s. I had no other way of explaining it.

There’s a part in every speech I give where I say, “This is the best job I have ever had that I don’t get paid for.”

I guess my passion for what I do pushes through the fog and allows me to get my message out. The funny thing is, when Shannon and I first met one another and we just sort of clicked, we said to one another, “Everything Happens for a Reason!” I think there was more to this reasoning thing than we realized.

After she told me how I am perceived in public compared to how I am in reality, it made me realize how difficult it is for people to understand that I, and other people like me, have Alzheimer’s Disease. We probably all have that dual persona, one where the long-term memories kick in and and the other where it turns off. It also makes me realize that more Alzheimer’s Awareness and Education is needed in our society.

The biggest takeaway is understanding what a Care Partner goes through on a day-to-day basis. I (and those of us with Alzheimer’s)  don’t remember how we act, what we say, how we say it, etc., but our Care Partners do and it’s probably the most difficult job imaginable.  It’s why I use the term Care Partner instead of Care Giver. It’s because they are right there along with us, loving and caring for us every step of the way.

I found a quote from “The Mirror Has Two Faces” that I thought to be pertinent.
Rose Morgan: This thing that we call a wedding ceremony is really the final scene of the fairy tale. They never tell you what happens after. They never tell you that Cinderella drove the Prince crazy with her obsessive need to clean the castle, cause she missed her day job, right?

The quote reminds me of my diagnosis and because I’m not able to work any longer, how I probably drive Shannon and the kids crazy with all my bitching and complaining about things that really don’t amount to a hill of beans; how they have to put up with my anxiousness and OCD; how I snap their heads off if I am having a bad day; how I forget things oh so quickly.

I know I’m not easy to live with because of this damn disease, but I’m still me, not all the time, but for now at least some of the time. I know the face I and my family see in the mirror. We don’t like it all the time but it is what it is. I have no choice but to accept it. My family chooses to accept it.
I think it’s why the one thing I DO REMEMBER is how much I love them and how very much they love me. I also appreciate the friends that have not deserted me, with hopes they NEVER go away.

PEACE,
B

 

Attack of the Mean Tweets

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!

Why I Advocate for Alzheimer’s

Why I Advocate for Alzheimer’s

One of the main reasons I Advocate for Alzheimer’s is because of the 4 people in my life (my Grandfather, my wife’s Grandmother, my Mother and Father) who suffered and died from Alzheimer’s and Dementia.
Why did they have to suffer and die?

According to the facts from ww.alz.org

  • It’s the only cause of death in the Top 10 in America that cannot be prevented, cured or slowed
  • 1 in 3 die with Alzheimer’s or another dementia
  • Alzheimer’s disease is the 6th leading cause of death in the United States
  • THIS IS A BIGGIE . . . ONLY 45% OF PEOPLE WITH ALZHEIMER’s DISEASE, OR THEIR CAREGIVERS, REPORT BEING TOLD OF THEIR DIAGNOSIS.  REALLY???  REALLY??????
  • MORE THAN 90% OF PEOPLE WITH THE FOUR MOST COMMON TYPES OF CANCER HAVE BEEN TOLD OF THEIR DIAGNOSIS.
  • In 2015, Alzheimer’s and other Dementia’s will cost the nation $226 BILLION.
  • By 2050, these costs could rise as high as $1.1 TRILLION

Not being told that you have a disease that will kill you is unacceptable. In a CNN cover story, it was reported that, “Doctors are sidestepping this tough conversation. But why? That’s been studied too, and the reasons doctors give range from diagnostic uncertainty and fear of causing emotional distress to time constraints, lack of support, and stigma.”

I think back to when I was sitting in my Neurologist’s office and he was going on and on about this and that and I could tell he was beating around the bush, so me being me, I stopped him and asked, “DO I HAVE ALZHEIMER’S?” He paused and quietly said “YES!” I know it was uncomfortable for him to tell me but that’s why he’s a Doctor. He’s going to have t tell his patients unpleasant things every now and then. If you can’t do that, then take off the white coat, turn in your stethoscope and go do something else.

Another reason why people with Alzheimer’s disease suffer and die is because Alzheimer’s disease is severely underfunded. I wanted to know why so I did some research. I know this is just the tip of the iceberg but here are some of my findings. (each link is clickable if you want to read)

 Seth Rogen Gets Serious To Fight ‘Ridiculously Underfunded’ Alzheimer’s Disease
 There Is No Cure And Little Money To Solve Alzheimer’s Disease
 Alzheimer’s Funding Lags Behind Other Diseases
 Dementia research underfunded, former Health Minister claims
 Alzheimer’s Is Expensive, Deadly and Growing. So Where’s the Research Money?
 Alzheimer’s Deaths Vastly Under-Reported, Study Says

In the last article, which was published in Newsweek, it states, “Alzheimer’s is a fatal disease. Over 5 million people in the U.S. currently live with Alzheimer’s, and most have a life expectancy of 3 to 10 years after diagnosis. With that number in mind, how were only 83,494 deaths attributed to Alzheimer’s in 2010? The numbers just don’t add up.”

Did somebody flunk math? Who’s minding the Disease funding store?

If I sound like I’m pissed, it’s because I am. I cannot believe this country sends billions and billions of dollars to other countries for research, development and care for their diseases while we suffer and die because there’s not enough money to go around for the home team.

Now, I have Alzheimer’s. If this disease would have been acknowledged and funded like other diseases, there might be a glimmer of hope for me. Since that didn’t happen, my future is bleak. At 54 years of age, I never thought I would be facing the end of my life, but the end is not here yet.

Until that time and as long as I am able, I will do everything within my power to raise awareness and to raise funds for the future generations of people with Alzheimer’s. That means for all of you that read this, I’ll be hitting you up for money. But don’t worry, I won’t hassle you . . . too much.  😉

Until next time,

PEACE!

I’m Still Me!

I’m Still Me!

I may have worked with you at one time or knew you through work, but now I can’t remember your name. I know your face and I know I know you, so please don’t be insulted if I ask you your name. I’m simply trying to remember.

We may have been friends from years gone by or even as recent as a few years ago and I may have trouble recalling some of the good and funny times we shared. Feel free to recall those times with me. I may not remember all the details but it would be nice to recall those memories.

When we have a conversation, you may discover that I now stutter. I haven’t stuttered at any point in my life and those of you that know me can only imagine how much this bothers me. I’m proud of the TV shows, commercials and radio programs I have been involved with and I’m thankful for those times. I’m just glad the stuttering waited until now.

I may not remember something you just told me 5 or 10 minutes ago. Please don’t think it’s because I didn’t find it interesting or that I don’t care. My short term memory is not what it used to be so please don’t take it personally if I ask you something that pertains to what you just told me.

I don’t play my guitar or sing anymore. I’ve lost that passion I once had but I’m working on getting it back. It’s said that music plays a very big part in bringing back certain memories to people with Alzheimer’s. I still love music and I still listen to it but it doesn’t hold a candle to creating music. I’ll let you know how that goes.

The reason I’m sharing all of this with you is because at this point, if you see me or talk to me, I may not be the person you remember, but, “I’m Still Me!” 

  • Please don’t be afraid to joke with me. I still love to laugh.
  • Talk about old times.
  • Give me a hard time and mercilessly tease me (you know who you are! lol) or even send me or tell me Alzheimer’s jokes. I have found that humor lessens the blow.
    • Just so you know, some of the best and funniest jokes I hear are from the online groups I belong to. We may not be able to remember the jokes we tell one another but we at least have that funny moment we share with one another. 
    • no matter the case, LAUGH WITH, NOT AT!

Lastly and most important, although I have Alzheimer’s, inside “I’m Still Me!”
Treat me like you always have.
As a side note, Alzheimer’s is one of the most misunderstood disease. If you want to know about it, ask me or go to http://www.alz.org.

. . . Until Next time