So, Where’s the Alzheimer’s Awareness?

“Living with Alzheimer’s is not the way I wanted to spend my retirement, however, I’ve made the decision to play the cards I’ve been dealt. Although the cards are not stacked in my favor, I’m still going to bet on the positive.” ~bpl

June, the sixth month of the year, the halfway point of 2017, the month in which we celebrate Father’s Day, my wife’s birthday and generally, Summer gets into full swing.
Oh, yeah, it’s also “Alzheimer’s & Brain Awareness Month”, although looking at news outlets, you would never know. 

This morning, with Dallas, my faithful companion in my lap, my coffee in one hand and my Atkins Breakfast Bar in the other, I settled into my recliner to watch my Favorite Show, “CBS Sunday Morning with Jane Pauley.” This show is my go to Sunday morning show for I’ve been watching it since it’s inception in 1979. My mother (Norma LeBlanc, 1929-2015, Alzheimer’s) watched it religiously, which is how I grew to love the show.

I was a little put off this morning. Being the first show in the month of June, there was no mention of June being “Alzheimer’s & Brain Awareness Month.” I thought for sure there would be “some mention” of it, but it was nowhere to be found. I started flipping through the channels on the other morning shows and found nothing. I “Googled” the major networks and looked at their news feeds . . . NOTHING.

Before anyone says anything, yes, I am aware that the Terrorist attack in London took the top spot and wouldn’t expect any other news item to be at the forefront. My heart goes out to those who were injured and especially to the individuals (and their families) who lost their lives in a senseless manner. So very sad. 

But on this Sunday, like any other Sunday, those of us who advocate on a daily basis still soldiered on, screaming at the top of our lungs, (in a Facebook, Twitter, Instagram, LinkedIn sort of way) sharing Alzheimer’s Awareness and Education. But it was business as usual. NO ALZHEIMER’S SUNDAY STORIES!

Instead, CBS Sunday Morning ran a story on HIV/AIDS, which I’m glad they at least paid attention to one of the diseases that takes lives too early. I’m also thankful for the advances in HIV/AIDS research. I can only hope for the day Alzheimer’s Disease is on the same playing field.

You may think that since I have been Living with Alzheimer’s Disease since 2014 (diagnosed in 2014 but according to my Neurologist,  probably living with it for up to 10 years prior) that I’m whining. Well yeah, maybe I am a little.

I won’t speak for anyone else, however, I know there are many that will agree with me that Alzheimer’s, in my opinion, has been treated like the red-headed step-child of the disease world. Although it is the 6th leading cause of death when it comes to diseases, it has been severely underfunded when it comes to research dollars. In the last couple of months, Alzheimer’s research dollars finally reached the BILLION DOLLAR MARK, and it was just barely over the BILLION DOLLAR mark and still far behind other diseases.

Part of the reason why? Alzheimer’s is one of the most misunderstood and complex diseases there is.
Imagine how it would be if there was a way to stop the progression, prevent it from developing or even cure it. I bet the $$$ would be flowing.

I just wish Alzheimer’s was given as much attention as others.
Take Breast Cancer for instance. When November rolls around, for the very first NFL Football game that month, there is pink everywhere. On NBC’s Today Show, the male anchors take part in “No Shave November” campaign.

Alzheimer’s has June 21st, “The Longest Day”.
According to The Alzheimer’s Association:

“The Longest Day is all about love.
Love for all those affected by Alzheimer’s disease.
On the summer solstice, team up with the Alzheimer’s Association
and select any activity you love — or an activity loved by those affected —
to help end Alzheimer’s. Together, we will raise funds and awareness
for care and support while advancing research toward
the first survivor of Alzheimer’s.”

The Longest Day is a great idea, do something you love, in memory of someone who had Alzheimer’s or with someone that has Alzheimer’s Disease and raise money for the cause. But what about the other 364 days of the year. 
OK, 363 days of the year for we have the “Walk to END ALZHEIMER’s“. 

Professional sports such as Basketball and Baseball take place in June. Why don’t we tap into those organizations so everyone will see PURPLE everywhere they look. I give BIG PROPS to our Double-A Baseball Team, The Pensacola Blue Wahoo’s (farm team of the Cinicinatti Reds) for working with us (The ALZ Assoc of the AL/FL Panhandle) to hold an Alzheimer’s Fund Raiser called, “Paint the Park Purple.”  The event is June 12th if you would like to join us. (contact me if you would like information)

Also, Seth and Lauren Rogen do an awesome job of bringing Alzheimer’s to the forefront with their “Hilarity for Charity” event. (Hilarity for Charity® (HFC) is a movement led by Seth Rogen and Lauren Miller Rogen to inspire change and raise awareness of Alzheimer’s disease among the millennial generation. Lauren’s Mother was diagnosed at the age of 55).

I still feel we are falling short when it comes to awareness. Look at Social Media! I can post, and others can post, all types of Alzheimer’s Awareness stories, photos, articles, etc. and get “some” traction, but post a pic of a laughing baby, a drunk person falling down stairs, an adorable pet of any kind, or a nude person and it gets “A BILLION” more likes and shares than our Alzheimer’s Awareness posts. I’m not sure what that says about society but I just know it gets more likes than the stuff I post.

And to make matters worse, when we, those of us who Advocate publicly, are asked to speak at Alzheimer’s functions, we are consistently told, “well, you don’t look like you have Alzheimer’s.” I know I’ve said this before but, unless we are sitting in a wheelchair, not able to do anything for ourselves, it’s hard for others to believe we actually have Alzheimer’s. After all, we are walking, talking and living a life that’s hard for society to comprehend.

So, what do we do? I guess, for the time being, we continue doing what we have been doing. I know through my own Alzheimer’s Advocacy, I’m not going to reach every single person, but if I reach at leat 1, I’m doing what I set out to do. Maybe that’s what it’s going to take. Reach 1 person at a time, one day a time. I guess I can do that because time is something I have a lot of right now. I may as well use it constructively.

Until next time . . .
PEACE!

B

 

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!