The Fortunes of Friendship

The Fortunes of Friendship

Friends! We’ve all had them throughout our lives. We’ve had good friends, school friends, college friends, business friends and BEST FRIENDS!

The Best Friends are the ones that, if you’re lucky, last a lifetime. Sure, life gets in the way and may prohibit you from speaking to one another on a daily basis, but the communication is still there whenever you can make time. You catch up, find out what the other is doing, laugh, reminisce, and try to make a date and time you can talk again. Sometimes it works, and sometimes life and priorities get in the way. Somewhere down the road you’ll catch up and pick up right where you left off.

What happens when “LIFE” gets in the way and includes illness, maybe not to you but to a spouse, a child, a parent or grandparent. What happens to those friendships?

I can speak only of my friendships and I can honestly say, it has been been a mix of being happy, sad, lonely and surprising. I could easily blame it on many things like moving to Florida 30+ years ago, losing touch with folks who have moved and not know where they went or what they’re doing now, and I’m certainly not going to blame it on my Alzheimer’s. That would go against everything I speak about. By using that as an excuse it would make me a liar and I could no longer say “I don’t allow Alzheimer’s to define me.!”

To be honest, I don’t blame it on anything other than time and life! Those are two things that are in perpetual motion, that is until life comes to an end.

I must say, since my diagnosis in 2014, I have made some pretty remarkable friendships. Some are more of acquaintances, some are near, some are far, some are somewhere in the middle and some are re-acquaintances from decades ago. (Thank You Facebbook and other Social Media).

One such friendship I hold near and dear to my heart is with Sandy Halperin. Because of Alexander “Sandy” Halperin, I became an Dementia Advocate, a member of Dementia Action Alliance, a member of the Early Stage Advisory Group of the National Alzheimer’s Association in Chicago, IL, which opened up countless opportunities to speak at the National Academy of Sciences in Washington, DC, The National Institute of Health (NIH), and many other conferences, symposiums, and Educational Presentations.

On September 20, 2016, Sandy “literally” passed the Advocacy baton to me. He knew he was not able to do as much advocacy as he had been doing throughout the years so he passed the baton to me, with 1 requirement . . .
When it comes time that I am not able to continue my advocacy, I am to choose a recipient to pass the baton to. My name will be inscribed on the baton as Sandy did when he passed it to me. Fortunately it will not be ANY TIME SOON for I still have A LOT TO SAY!!!

The passing of the baton from Sandy to me, September 20, 2016
I brought the Baton to the Great Minds Gala in March, 2019 in Washington, DC where I gave a speech about “HOPE” as it pertains to the future of Alzheimer’s. This is where Sandy first presented the Baton as a beacon of hope.

Sandy has given permissions to Maureen and I and a few other folks to post information on his LinkedIn page. He has 30,000 followers on his page and he did not want the page to be empty of current news, stories and Research. So, we utilize his page to continue spreading the word and we are so thankful for him giving us the opportunity to speak to 30,000 of his closest friends.

Our most recent photo from February, 2020.

Sandy’s friendship is more than just a friendship. We are two people from different backgrounds but it was Alzheimer’s Disease that bonded us.
It was Alzheimer’s Disease that taught us ways to live with the Disease as well as we possibly can. It was Alzheimer’s Disease that gave us a platform to speak from.
It is Alzheimer’s that will keep our friendship going.

We both know that it will be Alzheimer’s that will cause other medical issues to take us away, but we don’t worry about that. We still have a lot to say and a lot to write.

Neither Sandy nor I want sympathy from anyone. We often talk about what we don’t want rather than what we do want. What we do want is for everyone to know we lived a full life. A life of passion, a life of hope, a life of love and a life of friendship!

Until Next Time . . . PEACE!
B

Changes in Lattitudes, Changes in Attitudes …

I know it’s been quite a long while since my last blog post but I had a lot of things going on in 2019. Please excuse my absence but know, my posts will now be more frequent.

As Jimmy Buffett sings, “It’s those changes in latitudes, changes in attitudes
nothing remains quite the same.”

When you stay in one place too long (or maybe I should say, when “I” stay in a place for too long,” it’s time for a change.
I spent the first 30 years of my life in New Orleans, LA. It was a great place to grow up. Mardi Gras, Saints, food, friends, phenomenal music, food, family, fun, food . . . (did I mention FOOD?) I mention food because it was a huge part of my life . . . 285lbs of huge and probably the cause of my Type2 Diabetes and Heart Disease, but I digress.

When 1990 rolled around, after a divorce, it was time for a change. I had met someone and she moved from New Orleans to Pensacola, FL (her home) and asked me to join her there . . . so I did. Sadly, that relationship ended 7 years later but I had grown to love Pensacola so, I stayed. I made new friends, found my niche in Public Relations and Marketing and was very happy.

Through a few more relationships, a diagnosis of Type 2 Diabetes, 3 heart attacks, a diagnosis of Alzheimer’s Disease, a brief move to Knoxville, TN, questionable decisions, neck surgery, back surgery and a triple bypass in July of 2019, the third 30 years was approaching. I had no idea what waited in store for me. Then, Maureen entered my life, at least that’s when I “THOUGHT” she entered my life.

I say Maureen entered my life in 2019, but unbeknownst to me, I actually met her in 2014 (I was married at the time) . . . again in 2015 (still married) … again in 2016 (still married) … again in 2017 (yup, still married), skipped 2018 (divorced) and then in 2019, well, y’all know how that story ended and is still being written! ūüôā

From what Maureen says, it was all up to me.
I say, “I don’t remember meeting her until 2019″.
She says, (“WOW, guess you weren’t impressed”)
I say, “I have Alzheimer’s.
She says, “Your subscription for using the Dementia Card has expired and can no longer be used” and she wasn’t kidding.
I say, “WHATEVER” and roll my eyes!

What I’m trying to get at is I moved to Largo, FL in December of 2019 to start my life with my LIFE PARTNER. It’s ironic that in 1990 and 2019 (almost the 30-year mark) I made yet another move. What I can say is being a stone’s throw away from Tampa, St. Petersburg, Clearwater and an hour and 14 minutes away from the “Happiest Place in the World”, I have finally found my forever home and my forever person.

When I told some friends and family that I was moving 700 miles away, let’s just say I was “cautioned and reminded” about my past moves by those same friends and family. I was once quoted as saying, “if I ever say, ‘HEY, I’ve got a great idea. I’m going to pack all my stuff, drive hundreds of miles to a new place, to a city I have never been to, and start my life over again . . .” just reach over and slap the CRAP out of me and say, you stupid, stupid man, haven’t you learned anything?'”

Well, no one did that and I’m thankful for I am sure it was not going to be an easy slap. I also know they all meant well and I hold no negative feelings towards any of them. They were doing it all out of love and I appreciated their support . . . and still do.

So, here I am, starting over, AGAIN, and as you may have heard others say, “BUT THIS TIME IT’S DIFFERENT!”  this time, it really is different.

We are approximately the same age (“I won’t say who’s older by 7 months but it’s not me), we both love music, movies, family, we work out at the gym (she more than me but I’m improving), we love one another but we also like each other. We started out as friends and that friendship, as well as our love, strengthens daily. Has it all been a bed of roses? NO, but I have learned that sometimes, the hard/difficult things in life are so much more rewarding when they are conquered than the easy things.

For all the folks who were worried about me making this move, look at it from Maureen’s perspective. She was questioned also by the people who loved and cared about her.
“Are you sure you know what you’re doing?”
“You know he has Alzheimer’s, right?”
“Do you know anything about being a 24/7 Care-Partner?

Funny thing is, I also wondered if she knew what she was getting into. I told her:
“life with me can change by the day, the hour and the minute.”
“I forget stuff you may have told me yesterday, or an hour ago, or a minute ago!”
“I have Alzheimer’s anger which may or may not be directed towards you. I may not even know why I am angry.”

Her response to me solidified my decision to move.
She replied, “I love you. You are going to have to put up with me as well. I’ve been living on my own for 13 years! We’re just going to have to get used to it. Failure is NOT an option. Plus, now that all your stuff is unpacked, I ain’t helping you pack it up again unless we are both moving to a new place!
I just love it when she gets all sweet on me!

Just this morning, I came up with an analogy of who we could be compared to.
Maureen is like a Cheetah.
(The cheetah is the fastest land animal in the world, reaching speeds of up to 70 miles per hour. They can accelerate from 0 to 68 miles per hour in just three seconds.) As soon as morning comes, she is up, moving at lightning speed, moving in circles around me as I try to figure out what day it is.

As far as me, I’m more like a Sloth.Image result for sloth I move at an extremely slow speed for it takes some time for my brain to kick in, some days longer than usual. I just like to take my time, taking in the beauty of the day, taking photos and sometimes, just sitting and listening to music, letting the memories float in and out depending on the song I am listening to.

Maureen had to get used to that.

We also realized, upon watching the new (and old) episodes of “Mad About You” with Paul Riser and Helen Hunt, that our interactions are very similar to theirs. We laugh at them and then realize we are seeing ourselves in their characters and laugh even harder.

That is one thing we do a lot of . . . we laugh A LOT!

And so, the story of our lives continues to be written, one page, one chapter at a time, full of love, laughter, tears, and smiles. We still learn a little something new about each other every day and can’t wait for what awaits us tomorrow.

Now that 2020 has rolled around and we are both turning 60 this year, we realize the time we have remaining is NOT going to be spent just talking about the things we want to do. We are going to get out and DO the things we want and have dreamed about doing.
Yes, there will be pictures and stories to share on facebook and Instagram (thebrianleblanc)

Until Next Time,
PEACE!

B

 

Hope for the Future?

Scanning the headlines under the topics of Alzheimer’s, Alzheimer’s Disease, Dementia and other related topics, I see a trend. The trend is for the future and that’s awesome. My hope is that no one will have to go through what I and millions of others have gone through and are going through¬†now.¬† Trust me when I say, you DON’T want to experience Alzheimer’s Disease.

This is why, towards the end of every single presentation, I make this statement, “I made a vow to myself to share Alzheimer’s¬†Education and Awareness for as long¬†as I am able, in order to benefit those that come after me. I do this in the memory of the loved ones I have already lost, for the new found friends I have recently lost, and for the friends and loved ones I will lose.”

Scouring the headlines, as I do most every day, I see  I see things like:

  • Eat Healthy¬†¬†(newsflash … we’ve been told to eat healthy for decades now. People have followed these programs exactly as they were laid. Some people still developed Alzheimer’s. My Mother ate healthy¬†all her life,¬†measuring her food on a food scale and eating her veggies and she still died with Alzheimer’s Disease.)
  • Excessive alcohol use linked to early-onset dementia risk¬†(I have yet to see an Alzheimer’s / Dementia health warning posted¬†outside a bar, restaurant, sports stadium or any other establishment that serves liquor. Even if these types of postings would¬†start popping up, do you think it would make a difference?)¬†

  • Head injuries may lead to early Alzheimer’s¬†(The NFL has made a difference by imposing new¬†rules and bringing Dementia / CTE awareness to the forefront. However, pay close attention to the sidelines as to when a player makes a great play. Everyone gathers around the player and¬†SLAPS HIM IN THE HEAD!¬†and it’s not a little soft tap, and it’s not just once. Maybe they should¬†look into that also. Just sayin’.
  • How daytime sleepiness may raise Alzheimer’s risk¬†(This is my favorite. Do you know how many people may decide they need a nap during the middle of the day because they are tired but don’t do it now because¬†they feel it may lead to¬†Alzheimer’s Disease? So instead, to relax, they head to their favorite Sports Bar and have a beer.)¬†

There are a lot of things floating around right now appearing in the News Feeds, but in my humble opinion, it’s all speculation. This headline sort of summed it up for me and is also¬†the most honest headline I’ve seen in a while:
Alzheimer’s Drug Trials Keep Failing —
It May Be Because We Don’t Understand the Disease

There is hope though. While Pfizer made the decision to back out of the Alzheimer’s Drug Research arena, enter Bill Gates and Warren Buffett, each contributing $100,000,000. It’s refreshing to see individuals like Gates¬†and Buffett step up and do something like this, not for the glory¬†but for the good¬†of humankind.

Living Well with Alzheimer’s Disease is hard but as the saying goes, nothing worthwhile ever comes easy. Throw in the fact that there is no way to prevent it from developing, to stop the progression or to cure it, it has not stopped most of us from living somewhat of a positive, purposeful life.
It has also not stopped the countless number of researchers, drug companies, and benefactors from doing what they do each and every day to search for a cure.

I am confident that one day, there will be a cure. Before that, a way to stop the progression of the disease. Before or after that, a way to prevent from developing. Finally, after that . . . THE CURE.

Until then, I’m just going to continue living, as best I can, day by day, in the moment.

Until next time . . . PEACE!
B

NEW YEAR‚ÄôS RESOLUTIONS: Make Them BUT, Be Smart About It!!!

Once again, a New Year is approaching. In my mind, I‚Äôm thinking, ‚ÄúWell, I made it through another year so I should be thankful for just that!‚ÄĚ I also think, ‚Äúwhat am I going to do in 2018 to stay both physically and mentally fit?‚ÄĚ Well, the two go hand in hand.

Memberships for gyms and fitness centers explode in January because I believe, people really want to do something positive for themselves and being physically fit is a positive thing. However, it’s not for everyone. I know it’s not for me, but that doesn’t stop me from doing it on my own.

My resolution for this year is to stay ‚Äúphysically healthy‚ÄĚ. I have enough ‚Äúdoohickey‚Äôs and ‚Äúwhatchamacallits‚ÄĚ I can use to make myself more physically healthy (hand weights, resistance bands, etc‚Ķ). I also have a dog as well as my own two legs to take me for walks. Last, but certainly not least, I also have my great-niece, Alexis, who is enrolled at LSU(GEAUX TIGERS!) majoring in KINESIOLOGY with a focus in Fitness Studies. (KINESIOLOGY is an academic discipline that involves the study of human movement, especially the role of physical activity and its impact on health, human performance, society, and quality of life.)¬† Alexis prepared a fitness plan that specifically meets my needs. (SHE‚ÄôS AWSOME!!!)

In addition to staying physically healthy, I‚Äôm also vowing to stay ‚Äúbrain healthy.‚ÄĚ A recent study published in the¬†American Journal of Preventative Medicine states that doing physical exercise in combination with cognitive engagement can enhance brain health.

Having Alzheimer’s Disease makes it difficult to remember to do both the physical and mental exercises, but, that’s where technology comes in. In other words, I set reminders on my phone to alert me.

One of the things I do is to play ‚ÄúWords with Friends‚ÄĚ on Facebook. Some people will play it for fun or for competitive reasons. I do it for brain health. Many of you who I‚Äôm connected with on Facebook may see an invite (or 2 or 3 ‚Äėcuz I forget if I‚Äôve already invited you or am already playing a game with you) to join me in a game of Words with Friends. Yes, I do it for the social interaction, but I also do it to utilize my brain. (NO, I don‚Äôt use any of the cheats. That would defeat the purpose) You will find that I lose A LOT of games but I don‚Äôt do it to win. I do it to push my brain to think.

There’s also an app called WordBrain where you try to make as many words as you can in a certain amount of time.
You can also play BOGGLE, Tetris, Word Search (either on an app or using a word search book). Word Whizzle is another game where you will see words spelled backward and forward.

I’m sure there are other games you know that can test your brain function and if you would like to share them with me, I would be happy to share with my readers.

My main message is to treat your brain as a muscle. It needs to be ‚Äúworked out‚ÄĚ in order to stay healthy. Will working out your brain stave off any type of cognitive impairment? Who knows? Will it erase Alzheimer‚Äôs or any other dementia? Not that we know of yet but, hey, it may help slow it down a bit.

What I’m trying to say is, not trying, at least for me, is not an option. I explore many options in hopes that I can slow my Alzheimer’s decline.

So, in 2018, don‚Äôt forget to work out that ‚Äúbrain muscle‚ÄĚ as often as you can, because, ya neva know!!!

Until Next Time . . .
I wish you PEACE and a HAPPY NEW YEAR!

B

“Hey, Alexa . . . THANK YOU!”

“Hey, Alexa . . . THANK YOU!”

The Amazon Echo Dot can assist individuals with a dementia-related illness get¬†through the day a little bit better. At a time when some folks are going tech-free, I’m discovering technology is actually helping me to live a better life.

Alexa

 


(I am in no way associated with Amazon and I have not been compensated in any way to write about the Amazon Echo Dot.

 

My reasoning for writing this is two-fold: 
1) while I appreciate humor, there is a fine line between laughing with people and laughing at people. 
2) I want to point on out how this device can really help those of us living with a disability, including cognitive decline.

Recently, I saw a Saturday Night Live skit regarding,¬†as they put it, “people of a certain age” using the Amazon¬†Echo Dot. ¬†At first, I thought it was going to be funny. That ended when I realized they were actually making fun of older adults experiencing hearing loss and cognitive decline.
I’m including a link to the skit so you can make the determination on your own.¬†

https://www.youtube.com/watch?v=YvT_gqs5ETk

After watching the skit, I know some of you will find it funny and some of you will not.
In reading the comments made about the skit, I found one to be enlightening.

It read,¬†“Laughing at the video. Then I realized this is video is about me in 30-40 years.”
How true those¬†words may be. I sincerely hope, for this young man’s sake, they don’t come true.

Anyway, this post is not about SNL, this is about the Amazon Echo Dot and how I believe it can assist individuals with a dementia-related illness get through the day a little bit better.
At a time when some folks are going tech-free, I’m discovering technology is actually helping me to live a better life.

“The Amazon¬†Echo Dot¬†is a device that uses speech recognition to perform an ever-growing range of tasks on command.¬†Amazon¬†calls the built-in brains of this device “Alexa,” and she is the thing that makes it¬†work. Her real smarts are on the Internet, in the cloud-computing service run by¬†Amazon.¬†The name Alexa¬†can¬†be changed by the user to “Amazon”, “Echo” or “Computer”.”
Amazon Echo Dot info

 

If you don’t know what the Amazon Echo Dot does, here’s how I use mine:

  • I use Amazon Echo Dot¬†for a lot of things, like setting alarms to eat, reminders to take a bath, tell me the weather forecast … she will usually understand what you are trying to ask. If she doesn’t, she will let you know.
  • It can hear you from across the room or from upstairs with voice recognition, even while music is playing
  • I haven’t gotten to this point yet but if you really want to get fancy, you can purchase additional components that will allow you to control lights, switches, thermostats, etc.¬†

For those of us who are living well with a dementia-related illness, we may find ourselves being a bit more forgetful than what we used to be. I will only speak for myself and what I go through, for most of us have similar symptoms, but are affected in different ways.

One of the things I most like is the news feature, or “flash briefing”. Just say, “Hey Alexa, read me the news!” and she does, giving you headlines from all over. If you want her to stop, just say, “Alexa, stop reading news” or some other form of a command. My favorite is, “Alexa, when is the next Saints game” and she tells me the date and time. “WHO DAT!!!”

Alexa will also play music from your Amazon Prime Music selection. You choose the genre or something from your own personal playlist and she will play it. For example, at this time of year, I say, “Alexa, play Christmas music!” (I sometimes ask please without even thinking. I think she appreciates it!)

Although I have alarms and reminders on my phone to alert me as to what I should be doing at a particular time, I also use Alexa to remind me verbally. For example, I’ll say, “Alexa, remind me at 1:00pm to get ready for my speaking engagement at the Alzheimer’s Association at 2:30pm.!”¬†She says it verbally and also sends a message to my phone. (by the way, if I don’t say am or pm, she will ask me.)

There are many other features the Amazon Echo Dot uses but I just wanted to highlight some of the features I use most often. Since this is the holiday season, for only $29.99, this would be a great gift for someone who may be starting to have some memory decline, someone who has had a dementia-related illness diagnosis or just something to have handy to make your life a little less complicated. Just an FYI, it also has a built-in bedtime story function for the kids . . . or even for you!

As a side note, you may also want to check with your cable provider. Their new remotes are now voice enabled. If you’re like me, I remember the network but I forget the channel number. Now, I just press the little microphone thingy (yes, that’s a real term, at least in my vocabulary), and say “NBC” or “FOX NEWS” or “HGTV” or “ESPN” and it goes directly to that station.

As I go further along my Alzheimer’s path, I’m always looking for ways to make my life a little less complicated. When I find something that works, I put on my Dementia Advocate hat¬†(yes I have one but only wear it in private)¬† and share it with as many people as I can. I know that it may not work for everyone but if¬†it works for a few, then . . . HOORAY!

As far as SNL goes, I know they will continue making fun of people. It’s what they do. I just hope they keep in mind that when they make fun of people with cognitive issues, it’s really not that funny.

Until next time . . .
PEACE and Merry Christmas!

~ Brian
“I have Alzheimer’s BUT it doesn’t have me,
for I don’t allow it to define who I am!”

 

 

 

Part II So . . . You Think I‚Äôm Faking my Alzheimer‚Äôs Disease, do you?

Part II      So . . . You Think I‚Äôm Faking my Alzheimer‚Äôs 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.

‚ÄúBut you LOOK good‚ÄĚ
‚ÄúYou just want attention‚ÄĚ
‚ÄúBut you don‚Äôt 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

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

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

90 going on 3 ‚Ķ

90 going on 3 ‚Ķ what does that mean? There is a fine line for caregivers to take as their loved one‚Äôs dementia progresses.  To honor and respect the person  you want to treat them as an adult, capable of making decisions for themselves.  Reality often comes to bite you when you realize their choices [‚Ķ]

http://simplyhomecaregiving.com/2015/09/25/90-going-on-3/