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

 

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