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’S RESOLUTIONS: Make Them BUT, Be Smart About It!!!

Once again, a New Year is approaching. In my mind, I’m thinking, “Well, I made it through another year so I should be thankful for just that!” I also think, “what am I going to do in 2018 to stay both physically and mentally fit?” 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 “physically healthy”. I have enough “doohickey’s and “whatchamacallits” I can use to make myself more physically healthy (hand weights, resistance bands, etc…). 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’S AWSOME!!!)

In addition to staying physically healthy, I’m also vowing to stay “brain healthy.” 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 “Words with Friends” on Facebook. Some people will play it for fun or for competitive reasons. I do it for brain health. Many of you who I’m connected with on Facebook may see an invite (or 2 or 3 ‘cuz I forget if I’ve 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’t use any of the cheats. That would defeat the purpose) You will find that I lose A LOT of games but I don’t 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 “worked out” in order to stay healthy. Will working out your brain stave off any type of cognitive impairment? Who knows? Will it erase Alzheimer’s 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’t forget to work out that “brain muscle” 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’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

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