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!”

 

 

 

Alzheimer’s . . . from the Daughter / Dad Perspective

In honor of World Alzheimer’s Month, my daughter and I were asked to write a few words as to what it’s like to be a Dad with Alzheimer’s and a Daughter of a Dad with Alzheimer’s. Being today is World Alzheimer’s Day, here are our words, our perspectives, our truths.
My hope is that this brings an awareness, some clarity and raw honesty of how Alzheimer’s not only affects the individual with the disease but the family as a whole.  I also hope this shows that Living with Alzheimer’s is still “LIVING”, still “FEELING LOVE”, still being “ALIVE INSIDE!”
B

IMG_2646

Daughter of Dad with Alzheimer’s, from HER Perspective

Being the daughter of a parent living with Alzheimer’s is challenging, unpredictable, and the best way to learn patience. There comes a point where you find yourself, a child, not only wanting to help your parent with the disease, but also being left with no other option but to help. Luckily it doesn’t happen all at once.

It starts with helping them retrace their steps to finding their keys that they put in the fridge, to watching them struggle for a few minutes to find their car in the parking lot, to wondering if they know where a store is five minutes away from home, and then ultimately them not being able to drive anymore at all and having their license taken away. It’s a slow and steady progression, but it still hurts me all the same.

Being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind. Nothing prepares you for that, and when the time comes you have to just accept it and take it with a grain of salt. Conversations are a little harder to have, dinners aren’t as cheerful as they once were and outings have become progressively more stressful. But at the end of the day despite all the challenges, the unpredictable circumstances, and my patience running a little too thin…I still love my step dad, and I know he still loves me. 

Dad, with Alzheimer’s, of Daughter from HIS perspective

Being a Dad to a daughter is special, like a gift. Throw in Alzheimer’s and it complicates the entire situation. Her helping to care for me while I live with Alzheimer’s was nowhere on my radar, but she just jumped in and never looked back.

At 22 years old, she has her own life and will not be here forever. My questions are, will I be around or aware to see her married, become a mother, to hold my first Grandchild? Will I be there to celebrate those moments with her?

I know she tires of me asking questions she has answered before but she doesn’t bat an eye. She just answers. When she comes home at the end of her work day/night, she sits with me for a few moments, asking me questions about my day that most of the time I can’t answer but somehow, she already knows the answers and helps me fill in the blanks. Funny thing is, I don’t always recognize when she does this . . . but she knows, and it breaks my heart.

I realize I must sound the same as my Mother did (she also had Alzheimer’s) when I asked her questions. I’m sure, as confused as I sound, she still treats me with the same love and kindness as I treated my Mother. I couldn’t ask for anything more loving than that.

She states, “being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind.” I don’t know anyone who would want that for any of their children. I know I didn’t and I also know my daughter doesn’t have to do what she does, day in and day out, but she does it.

My one hope is that she is far, far away when I am in need of the type of care I’ll need in the end. Until then, I try to cherish each kiss on the cheek, each moment, no matter how big, small or insignificant we share.​

#WAM2017  #WorldAlzheimersDay2017

Until next time . . .
PEACE!

B

 

“Weighing In” on a Few Things

First, let’s do some housekeeping:

  1. Yes, I still have Alzheimer’s Disease (and no, I’m still not “Faking It.”)
  2. I know everyone wishes for (me as well as everyone else with a Dementia-Related Illness) a cure/prevention/stop of progression (no one wishes that more than me) but there’s still not any of these “yet”, so I live each day as best I can, one moment at a time.
  3. I’m still me and “on most days” you can still talk, joke and laugh with me and I will talk, joke and laugh right back with you.
  4. On the “not-so-good-days”, well let’s just say I have them but don’t remember too much about them, which, when you look at it from my point of view, is actually a fortunate occurrence. 

That should bring everyone up to date, so let’s move on.

I don’t get out too much anymore being I am no longer able to drive. I have to depend on my family and some very close acquaintances to take me wherever I need/want to go. The “need to go” far outweighs the “want to go” because I don’t like asking anyone to take me anywhere. I do have the option to “UBER” anywhere I want to go, but I don’t usually opt for that either.

When I do get out and run into people I know, it’s nice to see them. It just reminds of years ago when I was out and about, being part of the social scene. The only difference now is the way I am greeted. (Please don’t think I am being disrespectful or ungrateful for what I’m about to say, just bear with me.) Now, when people see me, they come up and they get a sort of sad expression on their face and they say, in a very caring tone, “Hey, how are you? You look GREAT!!!” The first thing that pops into my mind is, “WOW! I must have looked like crap years ago. What I didn’t realize is the transformation I have gone through.

Let me explain:
One of the changes that comes with Alzheimer’s Disease and one that I am now experiencing is a change in my taste buds as well as in the way I smell things.

Here are 2 articles I found which may be helpful for you to understand . . . 

How Dementia Tampers With Taste Buds
https://www.everydayhealth.com/alzheimers/how-dementia-tampers-with-taste-buds.aspx
Food, Eating and Alzheimer’s
https://www.alz.org/care/alzheimers-food-eating.asp


Putting 2 and 2 together, when you can’t smell and/or taste the food you are eating, you tend not to enjoy it very much and you also tend not to eat too much.
Growing up in New Orleans, I ate some of the best food in the world . . . and a lot of it. At my highest weight, I was 285lbs. I lost a significant amount of weight and usually kept it between 240lbs and 210lbs, sometimes dipping below, sometimes going a bit higher.

Recently, I did notice that my clothes were not fitting me like they used to. Some were literally falling off of me. What I didn’t realize, until I started seeing recent photos of me is how much weight I had lost. Then I stepped on the scale . . . I saw it steadily drop from 180 to 170 to 160 and now to 155lbs. (I have no recollection as to the last time I was even close to 150lbs but i think it was around the time of my birth.)

I can still recall my Mother taking me to JoAnn’s Husky Shop in New Orleans to shop for clothes. I wanted to wear “normal clothes” but my body had other plans, which usually included the delicious, mouthwatering donuts and pastries from Haydels Bakery and McKenzie’s. I can still taste those delicious buttermilk drops, hot glazed donuts and every pastry you could ever imagine. It was a little fat boys dream for they were both in a “bicycle ride” distance. (All that sugar could be why I have Type II Diabetes today, but I digress.)

ANYWAYS, back to the present . . . I started looking at recent photos of me wearing clothes that were the correct size for me and THAT is when it really hit me.

(Here are 2 photos I took right after my walk this morning August 23rd, 2017, in case any of you haven’t seen me in a while.
And yes, I know I have NO BUTT, but even at my heaviest, I still had NO BUTT! Thanks Dad!

The reason I posted these photos is because if someone hasn’t seen me in a long time and they see me now, looking like I do, no wonder I’m greeted like I am. I would probably do the same if I saw me.

Don’t worry, I still eat, I just don’t eat nearly as much as I used to. I eat healthier food,  I don’t snack a lot and now I’m walking every day (or when it’s not raining or due to scheduling conflicts) .

What I’m trying to say is, I’m sorry if I thought badly of anyone for having that sad tone in their voice or for telling me I “look great” which is what you tell a sick person to make them feel better about the themselves. Ironically, looking at me now and looking at me a year ago, I kinda-sorta do look sick.

I guess another reason I didn’t see what others see is because in my mind, I’m still me, or at least a version of me.
I know I’m not as sharp as I used to be.
I know I can’t remember too much from yesterday or the day before.
I know I still have to rely on electronic devices to tell me what to do and when to do it.
I know there are things I can no longer do, but I also know why I think like I do and I also know you’ve heard it before, but it’s what I live by . . .

I Have Alzheimer’s BUT . . . it Doesn’t Have Me
for I Don’t Allow it to Define Who I Am!

That’s it for now.
Until Next Time . . .
B

PEACE!!!

 

Still Riding that High

Still Riding that High

Have you ever gone somewhere or had an experience that stuck with you for days, weeks or months after? I describe that type of feeling as a high (not drug induced) or a euphoric feeling, like catching the perfect wave and you ride it all the way to the shore. THAT kind of feeling.

Well, I’ve been in my “euphoric state of mind” for the past week and it was all due to a conference I attended in Atlanta, GA. The “Dementia Conference and Technology Showcase” was put on by Dementia Action Alliance of which I am a member of the Advisory Board. (being I’m a member of the Board has nothing to do with the way I’m feeling) The conference theme was Re-Imagine Life with Dementia . . . Engage – Empower – Enable. To you, they may be just words but to me, they were so much more.

I’ve been to Dementia conferences in the past and they have been great, informative and educational, but the one ingredient that was missing was inclusion. For those of us Living with Dementia, we are often spoken to or spoken about, but not heard from. Other times, we are there for other people to say, “Oh look, there are the people with Dementia! It’s so nice to see them out and about!”  Kind of makes us feel like a side show at the circus. 

This conference was all about us. Hearing from US! Listening to US! Learning from US!

DAACon4


We were not only included from the very opening of the conference, we were a big part of what the conference was all about, and then we closed out the conference. 

 

DAACon5


We were on panels, we were part of break-out sessions. 
We were even part of an Improv event at the Buckhead Theatre with “30 Rock’s and voice-over actor ‘Jack McBrayer’.”

And the individuals we worked with, the Dementia Action Alliance and ALL the wonderful sponsors of the event . . . THEY GOT US! They Got “IT”!

I’ve given my “Alzheimer’s: Up Close and Personal” presentation to an audience in Washington, DC at the National Academy of Sciences. I’ve spoken at a conference, In Chicago, IL for a national Insurance company about what type of decisions to be made before the end of life. I’m honored to teach“Crisis Intervention Team Training” to Law Enforcement  Officers and First Responders. These types of instances are what I hold near and dear to my heart. 

Not to downplay anything I’ve done in the past, however, to not only attend but be a part of this conference was life changing. It wasn’t the participation as much as it was meeting others like me, others who I’ve been speaking to for years either through teleconferencing or video conferencing but have never met in person, people I have come to know and love, people who I call friends. THAT was the highlight.) 

DAACon1

We weren’t gawked at or talked about. We were celebrated. We were spoken with. We were asked questions. We were INCLUDED in the conversation. WE MATTERED! Our Dementia-Related Illnesses were still there, but they were not what was seen.

WE WERE SEEN!   WE WERE HEARD!   WE WERE UNDERSTOOD!

I guess the best way to sum it up was something I tweeted a day after the conference ended. It simply stated:
“You know why #DAAcon17 was such a success? THEY GET IT!”
#dementiaawareness #dementia #livingwellwithdementia #dementialife 

THEY GOT IT! There was no other way to state it other than that. 

DAACon2

And . . . somewhere along the way, we had some fun, just being ourselves, so much that a comment was made, “I’m having so much fun ‘I FORGOT I HAVE ALZHEIMER’S’!”
I may or may not have been the one to say that, but I forgot! 

Until next time . . .
PEACE!
B