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

 

Part II So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

Part II      So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

After writing the first post earlier in the week, I received so many comments here, on Facebook, Messenger, Twitter, texts and e-mail that were all very positive. I appreciated everything each of you had to say. What I came to realize in conversations with some folks was, I wasn’t alone of being accused of FAKING a Dementia-Related Illness. It broke my heart that so many other people have gone through the same scenario I did. Then, I received a phone call from a good friend of mine (who also doesn’t look like or act like he has Alzheimer’s). We talked for a long time and we discussed so many things related to my recent blog post. I knew then that I was going to have to do a Part II based upon the information we discussed. So, without further ado . . .

PART II (hey, that rhymed with ado! It’s amazing what a person with Alzheimer’s can do!)

I will start with a quote from the Invisible Disabilities Association

“In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness, and value, no matter what hurdles they may face.

In addition, just because a person has a disability, does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.”

Facebook: https://www.facebook.com/InvisibleDisabilities/

Twitter: @InvDisabilities
Web: https://invisibledisabilities.org

When I wrote Part I, I had no knowledge of the Invisible Disabilities Association which is why I listed their information above. You should really go take a look!

I also failed to mention in Part 1 that I have Type II Diabetes and Heart Disease (3 heart attacks, 2 stents). I mention these 2 diseases since they are Dementia-Related Illnesses. Along with the genetics from my Great-Grandmother, Maternal Grandfather and Mother, (all who died with Alzheimer’s) you throw my Father into the mix (who died with Vascular Dementia) and he, along with my Mother, passed along the ApoE4 protein to me, the chances of me NOT developing Alzheimer’s were pretty slim.  

Even with all that, I’m faking. 

I’ve also had about a dozen surgeries in my life yet none of these issues EVER came into question from anyone. No one ever said to me, “You don’t look like you have Diabetes” or “You don’t look like you’ve had 3 heart attacks” or You don’t lok like you’ve had that many surgeries.”
SO, WHY THE ACCUSATIONS OF FAKING ALZHEIMER’S DISEASE??? 

I shake my head in disbelief for I wouldn’t even know HOW to fake Alzheimer’s.

To put it plainly, living with this disease is no picnic. It really sucks.
The hardest part of Living with Alzheimer’s, at least for me, is knowing you have a fatal disease that one day will contribute to your death. However, you can’t think about it all the time for it’s really a depressing subject. So, you suck it up because the last thing you want to do is to affect your family in any type of negative way.  But remember, we have Alzheimer’s and we forget and, unbeknownst to us, we do bring it up, and that sucks even worse.

I think I’ve said this before but it’s worth saying again . . .
“I don’t try to paint a rosy picture of Living with Alzheimer’s because there’s nothing rosy about it.”
It would be an insult to myself as well as to anyone who is currently living with the Disease or who’s life has already ended because of the Disease if I tried to make it sound any other way than what it actually is.

“But you LOOK good”
“You just want attention”
“But you don’t LOOK sick”

https://invisbledisabilities.org


How many times have we heard this? I know this statement has been uttered to individuals with all types of diseases that can’t be seen. You see, when someone breaks their arm or leg, they get a cast. 
If someone cuts themselves, they get a bandage. If someone has surgeries, they have scars.

Alzheimer’s is invisible. It can’t really be seen, however, it can be seen through our unsteady actions, through the way we sometimes stutter while trying to find our words, or, during conversations when we start repeating ourselves.

Then, if they’re paying attention, they know something isn’t right. 

When I first started advocating, I actually talked about Alzheimer’s being invisible. I told my audience, “it would be easier if we all dressed in purple and had a cool-looking cape with a big A on it. Besides looking “hero-ish” people would then know we have Alzheimer’s.” (Based on that is where I came up with my Twitter name “The ALZ Guy”. I pictured myself standing on a stage wearing my purple, Super Hero-ish costume, and starting my presentation with my hands on my hips, saying in my best Batman voice, “I’M ALZHEIMER’S GUY!”
OK, now that you know I have a very vivid imagination, I’ll move on.

I guess what I’m trying to say is, you can’t control what other people think or what other people say. When it comes to Alzheimer’s or other Dementia-Related Illnesses, there is so much that is unknown, people don’t know how to react.
Sometimes they will say negative things for they think are correct or factual.
Sometimes they will say negative things because they can’t/won’t accept the truth that you have a fatal disease.
And sadly, sometimes they will say negative things just out of meanness or jealousy, you know, just because they think you’re faking it just to get attention.

The only thing you are able to control in this situation is you. People can say what they want but it’s up to you whether or not you let the words harm you. Don’t get me wrong, the words sting, but, probably the one good thing about those of us living with Dementia,
WE’LL FORGET WHAT THEY SAID . . . unless of course, we’re faking!

Until Next Time,

PEACE
B

So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?

First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???

  • I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
  • I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times
    by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape?  Did I fake remembering the 4 words I was told 5 minutes ago?
  • Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
  • I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?

BOGUS

WOW . . . if I was faking all this, I must be a pretty damn good faker to have come up with this diabolical plan. But wait, if I was actually faking it, wouldn’t that take someone who can think and remember what to do, day in and day out, so they could remember to keep “faking it?”

Could someone:

  • who has no clue what day it is
  • who cannot tell time on a non-digital watch
  • who has to have alerts on his phone to remind him to take his medicine, to eat and to bathe every day
  • who can’t remember, day to day, how to work a TV remote

Could someone who is Cognitively Impaired really carry out this plan?

Oh wait, I get it . . . I’m supposed to be curled up in a bed, not able to talk intelligently, not able to feed myself or go to the bathroom by myself, and not remember my wife and children. God forbid, should I be able to use a laptop to write blog posts that will hopefully bring awareness and education to people who don’t understand the in’s and out’s of Living with Alzheimer’s Disease that they only saw in their elderly parents and grandparents.

GEEEEZZZZ, I guess since I’m able to do all of these things, maybe all of those so called medical professionals, all 4 of them, plus their PA’s and NP’s, all with their Diplomas and Certificates and published articles are just full of shit!

Maybe they have a quota as to how many people they have to diagnose with a Dementia-Related Illness each month and they needed just one more to be awarded the monthly “Hey, You Diagnosed Some Poor Sucker with a Fatal Illness Who Wasn’t  Really Sick” award, and I was the lucky one.
Maybe they (all 4 Dr’s, PA’s and NP’s) deliberately lied to me just to turn my life and my family’s life inside out and upside down, all the while so they can collect a $35 co-pay so they have some spending money for lunch!
Wow, did they pull the wool over my eyes, or what?

FAKE

I’ve been open and honest about my Alzheimer’s life since the day I was diagnosed. When I talk about it, I don’t do it to make people feel sorry for me, to have pity on me or to call attention to myself.
If I did that, I’d be dishonoring the lives of my Grandfather, my Mother and Father, or my wife’s Grandmother.
If I did that, I’d be making a mockery of every person in the world who has Alzheimer’s Disease, whether they be over or under the age of 65, individuals who I now call a friend.
If I did that, I’d be purposely putting my wife and children through sheer, underserving, inexcusable, wretched hell.

Well, I don’t have the capability to do something like that. 

I’m not saying I’m perfect for I have many faults and I’ve made many mistakes in my life that I’ve paid dearly for, but I’m not evil!

So, for those of you who want to continue thinking I’m faking my illness, please go right ahead. You have the right to think and say what you want. You can’t hurt me anymore than what I’ve already been. We don’t talk or see each other so it’s not like I’m missing out on anything.

Since receiving my “diagnosis” I’ve become non-existent to you, well, except to be called a fake, not to my face of course.

So please, continue your path in life and feel good about yourself. It must be nice to sit upon your throne and pass judgment upon those of us, you feel, are just skating through life.

Yeah, I’m skating alright. Of course, I can no longer skate on my own (guess I’m faking that too) but I’ve got Shannon (and her family), Asheton, Bradley, Linda and so many others holding me up both physically and emotionally when I need it. Unfortunately, I’ve been needing their assistance more and more lately but they are always there. I know I’m fortunate to have them, and yes, I know who YOU are, and I NEVER take it for granted.

They understand what I go through every day. They see and talk to me on good days, bad days and all days in between, because they get it and I am so thankful for that.

Feel free to call them and ask them if I’m “faking it”.
Better yet, just call Shannon. She would just loooooove to talk to some of you.
Just be prepared though, she’s kinda protective of me.

Until Next Time . . .

PEACE,
B

 

And So IT Continues . . .

This has been a very long week + 2 days. That’s how long it’s been since I’ve lost the ability to speak.

At first, it was scary. I didn’t know how I was going to get through this. Then, my support system, comprised of Bradley (16), Asheton(22) and Shannon (I’m not telling her age!) stepped in, telling me I’m not alone in this, and that “WE” will get through this. They have kept true to their word.

So far, I haven’t received any encouraging news as to what caused this. One Dr. said it could have been the brain hemorrhage that showed on my MRI.
Another said it was the growth and spreading of plaques and tangles in the frontal lobe of my brain.
Another said it wasn’t any of those things.
So, I’m feeling very good about myself . . . NOT!!!

The one positive thing about all of this is the unbelievable support, encouragement, and love that pours in each and every day. It comes through texts, both facebook messenger and posts, twitter, Instagram, and e-mail. The organizations I volunteer for, Alzheimer’s Association (national and local) Dementia Action Alliance, Covenant Care, and Dementia Alliance International) have all sent messages of encouragement and concern. Covenant Care even went as far as sending (and hand delivering) a card full of encouragement along with a praline and pecan King Cake. (Don’t worry, I took an extra dose of insulin. I wasn’t about to miss out on that deliciousness of sugary confection. And besides, it would’ve been rude of me if they asked if I enjoyed it and I answered with, “I don’t know, I didn’t eat any of it because I’m diabetic!” My Momma taught me NOT to be rude.)

Anyway, back to the no-speaking thing.  

Being I can’t communicate, except for very few words, (Love You, Yes, No, and Pee-Pee. Just to clarify, Pee-Pee is for my dog Dallas . . . not for me!) I use a whiteboard and an app named “TextToSpeech”. You pick the type of voice you want, you type in whatever you want to say, and then hit speak. It’s very easy to use. Since I’m still able to form words in my head, I’m still able to type and write. I don’t know how, but neither does anyone else so far. I’m hoping someone, someday with be able to tell me exactly what’s going on.

On the negative side, I’ve had to cancel a number of my speaking engagements and I literally hate that. Since being diagnosed with Alzheimer’s, I’ve never had to cancel any speaking engagements.  Having to do so makes me feel as if I let a host of people down especially when it comes to Law Enforcement. I always enjoyed teaching them the Crisis Intervention Team Training, where I taught them how to recognize someone with Dementia. It’s important since more and more individuals, especially baby-boomers like me, are being diagnosed with a Dementia-Related Illness. I know it is being left in good hands but  . . .

I’m also getting used to not driving anywhere. It’s not the “not driving” part, it’s being isolated and dependent upon others. I’ve burdened my family enough already. Now I’m asking them to drive me places or to get me things. I hate having to ask but they never say no. They always find a way. I’ve come to the realization that I’ll never drive again and, like everything else, that will have to be OK. There’s always UBER, if I need to get out. I can use my Text to Speech App to tell them where I need to go. We’ll see.

I’m just going to continue to do what I do as best as I can. I will advocate through the written word instead of the spoken.

I will keep a positive attitude, especially when it comes to my family. They don’t deserve to have to take care of me especially with a “piss-poor” or a “poor poor me” attitude. They deserve the best me I can be and that is what I strive to do.

Some days are rougher than others. Yesterday I was in bed the majority of the day for I kept falling. My dizziness was at an all-time high. I figured the best way to deal with that and not worry my family was to eliminate my walking.  So I stayed in bed.

Before I go, I just want to drive home one more thing. 
Yes . . . I have Alzheimer’s!
Yes . . . I can no longer speak!
Yes . . . It’s a pain in the ass to deal with!
However . . . I’m Still Here, Living the Best Life I Can!

There are many others in the world who are just like me.
DON’T COUNT US OUT!

We still have a lot of life within us.
We still have a lot to say and we’ll say it through any form of communication we are able.

We will continue our Advocacy, raising Awareness and Educating about all things Dementia-Related.
Even when we are no longer of this earth, our words will still live on.

“I Have Alzheimer’s BUT, It Doesn’t Have Me
for I Don’t Allow it to Define Who I AM!!!”

Until Next Time,
PEACE

B
 

 

The Happiest Place on Earth

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

58 … 11,370 … 1,000%

I know you’re probably looking at the title of this blog post wondering what it means. I promise I’ll tell you, but first, I would like to (I’m trying to think of the word that means to look back on certain events but not only can I not figure out the word, I can hardly remember yesterday, so I will just say . . . ) look back on 2016.

2016 was a very busy year for me. I can’t remember a time in my professional work life when I was this busy. All I can say is, it was a different kind of busy. Being that I’m not able to hold down a 8 – 5 salaried job doesn’t mean I’m sitting back in my recliner with Dallas (my dog) eating ice cream and watching daytime talk shows. (by the way, have y’all seen Harry, the new show with Harry Connick, Jr.? It’s  on Mon -Fri @2pm CST, on ABC. Just sayin’.)
Where was I . . . Oh yeah, 2016.

Working with several organizations (ALZ Assoc AL/FL Panhandle, National ALZ Assoc Early-Stage Advisory Group, Dementia Action Alliance, Covenant Alzheimer’s Care, Dementia Alliance International) keeps me busy. And no, I’m not complaining.
Busy =  Engaged Brain . . . Stagnant = Fog. I’ll take an engaged brain any day.

This brings me to the first number in the title . . . 58
58 
is the number of presentations I took part in during 2016. Yes, with only 52 weeks in the year, there were times when I doubled up in a week and even in a day. I didn’t care. I did what I was asked to do without question. In my mind, it was another opportunity to spread Dementia Awareness. It was another opportunity to demystify the Stigma associated with Dementia, especially Early-Onset Dementia.

No matter where I go, people still associate Dementia as that of a disease of the elderly. When I stand at the podium and tell the audience, “I’m 56 years old and I have Early-Onset Alzheimer’s Disease”, the reaction, the looks on people’s faces is consistent. It’s that of surprise, shock, and yes, disbelief. I get comments like, “My Mother / Father / Grandmother / Grandfather had Dementia and they couldn’t speak, let alone stand up in front of an audience like you do and talk about their life wth Alzheimer’s. I ask the age of their loved one and they are/were considerably older than me. I take that as an opportunity to talk about my life and the lives of hundreds of thousands of others who have Early-Stage Dementia and are able to live somewhat of a full life.

I also have people tell me how “brave” I am to talk about my life with Alzheimer’s Disease. Military personnel, Law Enforcement Officer’s, Fire Fighters and others who put their lives on the line every day are who I consider brave. I’m just a guy with Alzheimer’s Disease who can still talk about what it’s like to live with the disease. As I say in my presentation, “Alzheimer’s: Up Close and Personal”, “I don’t try to paint a rosy picture of what it’s like to live with this disease for if I did, you would not understand what we go through on a daily basis.” Although I don’t consider myself “brave”, I do thank them for the compliment. My Momma taught me to be kind.

My Dementia Advocacy isn’t just restricted to the AL/FL Panhandle. I also go to different places in the U.S. That’s what brings me to the second number in the title, 11,370.
That number represents the number of miles I have traveled by air and highway during 2016. To give you a breakdown, 5,836 were the number of air miles, leaving a balance of 5,534 representing the number of highway miles. The air miles weren’t shocking since I made a number of trips to Washington, DC and Chicago, but the highway miles are what really surprised me. 

One of the most memorable moments was during a presentation in Washington DC at the National Academies of Sciences • Engineering • Medicine for the “Preventing Dementia and Cognitive Impairment Workshop”.

I was asked to speak at the workshop, to give an abbreviated presentation of my “Alzheimers: Up Close and Personal” presentation. Looking at the other presenters, they were Ph.D’s. CEO’s, MD’s and then there was me. The only abbreviations I could think of to go behind my name was ALZ, which is how I introduced myself. 

Being that my presentation was scheduled for later in the afternoon, I was able to listen to the other presenters. It was a bit intimidating due to their Scientific, Medical, and Professional backgrounds but I knew I would be presenting from a first person point of view, talking about myself rather than someone or some thing.

When it came time to speak, I walked up to the podium. To the left of me was a wall of windows. Right before I started to speak, I looked out the window and there was the Lincoln Memorial. It was such a surreal moment. A feeling of calmness came over me as I started my presentation. During my 15-minute allotted time frame, I glanced at Mr. Lincoln’s Memorial several times. I not only felt proud to be there, but I felt as if I were representing the millions of people living in the United States who were living with Dementia. At the conclusion of my presentation, the unthinkable happened. The entire room stood up and gave me a standing ovation. No one else, the entire day, received that type of acknowledgment. What a memorable moment that was, memorable enough to stay with me. 

My local advocacy has put me in front of audiences numbering in the 20’s and 30’s to 100’s. Each time, I share my “first person point-of-view” as to what it’s like Living with Alzheimer’s each and every day.
Although I’ve spoken to Medical Professionals, Civic Organizations and Caregivers, the one group that affects me in the most emotional way are the Law Enforcement Officers. Each and every day, these men and women put on their uniforms and then put their lives on the line. That’s what I call bravery! 

chevy-police-vehicle

Through Crisis Intervention Team Training, I speak to them as well as teach them as to how to identify people Living with a Dementia-Related Illness, individuals they may come into contact with each and every day. Again, I speak from personal experiences of public confusion, disorientation, broken or unintelligible speech, etc. to give them an idea of what to look for. They ask very good questions and don’t mind if the presentation goes over the allotted time.

Most of them, as do most of the audiences I speak to, have a connection to a family member or friend who has had or has a Dementia-Related Illness.
Most of them have already had experiences with individuals with a Dementia-Related Illness and will now interact with these individuals differently and in a more positive way.

And this brings me to the last number in the title, 1,000%, which is what I give to everything Alzheimer’s.
Whether it’s:
   – preparing/updating one of my presentations
   – presenting to a small, medium or large audience
   – making sure my family knows how much I appreciate what they do for me, day in and day out

I make sure I give it my all.

I give 1,000% for I don’t know when I won’t be able to do this any longer.
When my time comes, I want to know that:
– I gave everything I had to give.
– no matter how big or small, I made a difference
– I gave people a better understanding of what it’s like to “Live with Alzheimer’s”
– I played a part in the destigmatization of Dementia
– people are now aware that Dementia is NOT just a disease of the elderly
– I helped people realize and understand that just because someone has Dementia does  not mean that it’s the end of all things.

There is still so much work to be done. There is still so much Dementia awareness and education to be shared.  I’m hoping 2017 will be a breakthrough.
Whether or not that happens, I will continue my travels and will continue giving 1,000%!

PEACE,
B

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A Little “Monkee-ing” Around

“Here we come, walkin’ down the street,
We get the funniest looks from, ev’ry one we meet.
Hey, Hey we’re The Monkees . . .

Yes, I’m talking about “The Monkees.” The same “Monkees” who appeared on your TV’s on Saturday mornings in the 60’s. They are still performing today, well, 2 out of the 4 Monkees are. As you may know, or haven’t heard, Davy Jones passed away in February 2012 and Mike Nesmith no longer tours with Micky and Peter.

So, why am I wrimg_4739iting this blog post about “The Monkees?” ? Well, thanks for asking.
Shannon (my wife) and I went to Biloxi, MS last weekend (10/1) and saw them at the Hard Rock Live. They put on a great show, singing their songs, playing their instruments as if they were still in their 20’s. At 71 (Micky) and 74 (Peter) they can still rock it!

It was not so much the actual performers we went to see (well, Shannon did have a bit of a crush on Micky when she was younger) but it was the music they perform.
Sitting in that audience Saturday night, listening to them play all of their hits (and there were many) it just made me smile and forget about my Alzheimer’s for a bit. I was that little kid again, sitting on the floor watching TV, singing along to “Take the Last Train to Clarksville”, “I’m a Believer”, “Pleasant Valley Sunday”, just to name a few. And no, it wasn’t just me. The entire audience was singing along.

It’s a proven fact that while music can soothe and relax most people, it has a profound effect on individuals living with Alzheimer’s.
According to the Alzheimer’s Association “Music can be powerful. Studies have shown music may reduce agitation and improve behavioral issues that are common in the middle-stages of the disease. Even in the late-stages of Alzheimer’s, a person may be able to tap a beat or sing lyrics to a song from childhood. Music provides a way to connect, even after verbal communication has become difficult.”
Read more: http://www.alz.org/care/alzheimers-dementia-music-art-therapy.asp#ixzz4MVXGu4Zr

Being I’m in the middle stages of Alzheimer’s, I utilize music to kee me calm and relaxed. It takes the edge off and keeps me from being anxious. When I hear one of my favorite songs, it sort of transports me back to a place where I was clear-minded, relaxed and happy. I can only hope when I get into my later stages, music will bring me comfort.

OK, back to “ The Monkees.” 

 Like all of us, they’ve changed a bit.

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It’s just age. It happens to all of us, but like their song says, “That Was Then, This Is Now.”

They are still funny (especially Peter), bantering back and forth. There was a huge screen behind them  playing videos and showing photos from their TV show and performances. They even had Davy Jones singing his vocals on “Daydream Believer”. It was a bittersweet moment for the audience as well as for his 2 friends on stage.

I walked away from that concert feeling refreshed, clear-minded, wishing it would it would last . . . and it did, at least for a little while. 

Thank You Micky Dolenz and Peter Tork for continuing to do what you do.
Thanks also to Mike Nesmith and the late Davy Jones for doing what you did.

PEACE!
B