World Alzheimer’s Day

Today is World Alzheimer’s Day.

It’s a day not so much to celebrate, but more for a call to Alzheimer’s Awareness.

It’s a day to make more people aware of Early Onset Alzheimer’s.
It’s still thought of as a disease of the elderly. those of us that have it, know this not to be true.

It’s a day to ignore the ignorance of some who use Alzheimer’s as a joke;
“accidentally deleted an e-mail . . . #earlyonsetalzheimers
“Forgot what day my birthday was on for a solid half hour #earlyonsetalzheimers”
Teenagers and young adults will, hopefully, one day, understand how serious this is.
Until then, it’s their right to remain ignorant!

It’s a day to call awareness to the families of individuals with Alzheimer’s.
They sometimes suffer more than the individual with the disease . . . they retain the memories.

It’s a day to remember our loved ones, our friends, our role models who fought the Alzheimer’s fight,
and in who’s honor, we, ourselves, pick up where they left off.

It’s a day to support those who have Alzheimer’s. 

The “First Day of School” Thing

I can still remember the days when the kids were small and how excited they were to start their first day of school, well, mostly Bradley . . . Asheton not so much. The morning would be busy with making sure lunches were packed, school supplies were in the backpacks, the-first-day-of-school-new-clothes were ironed (Shannon doesn’t let anyone walk out the door looking like, as she calls it, a raisin) and then we had to make sure we were ready for work. It was hectic. It was exciting. It was our life!

Thanks to the fact that Alzheimer’s has not yet taken my long-term memory, I can still recall these things.

Flash forward to today. It’s about 7:15am, Shannon is getting ready for work, Dallas and I are sitting in my recliner watching the news. I hear one alarm go off and then another. Doors start to open and close. I know Asheton and Bradley are now up and about and getting themselves ready for the start of a new school year. With Asheton in College and Bradley in his Sophomore year in High School, it’s a far cry from when they were small.

Shannon leaves for work, Asheton and Bradley are talking in the kitchen and instead of cereal and juice, it was coffee and anything in the refrigerator they could either eat standing up or in the car on their way to school. (Asheton now drives Bradley to and from school because my driving is limited to just around the immediate area.) They hug and kiss me goodbye, get in Asheton’s car and away they go.

I know working parents have looked forward to this “First Day of School”  for they don’t have to worry about summer day-care; being concerned with who’s doing what to who and why; settling arguments over the phone and all that goes on at the house during summer break.
Then there are the stay-at-home parents that once the kids are out the door they may breathe a big sigh of relief; dance a jig; excitedly make a grocery list so they can go shopping ALONE; have the computer/laptop/iPad/Tablet to themselves; pleased to not hear, “MOM! / DAD! every 5 minutes.

I know I’m generalizing and this doesn’t pertain to everyone but you get the picture.

I included the sentence above because the above scenarios do not pertain to me.
I’ll tell you why.

I have found with Alzheimer’s, I don’t like being alone. I’m pretty sure I have not liked being alone all my life so I will say instead, Alzheimer’s has MAGNIFIED my desire to NOT be alone.

Having Dallas around has helped me cope with my loneliness a bit but, although Bradley and Asheton spend the majority of their time in their rooms, I’m comforted in knowing they are here. I’m not sure they are as comforted as I am for I sometimes tend to hover. I don’t mean to do this but from researching the topic, I have found that hovering is a side effect of Alzheimer’s. Our loved ones, especially our spouses, tend to be a sort of “security blanket.” I guess when Shannon is not around, I then turn towards Asheton and Bradley.

I tell them to tell me so I won’t do it but since my short-term memory short circuits, I continue to do it. They do tell me at times and they do it politely so as not to hurt my feelings. When I catch myself, I back off on my own. I get mad at myself for doing this because I know they all value their privacy. That makes it a bit difficult when you have 1 person who is dependent upon the other 3. The last thing I want to do is to be more of a burden on them than I already am. It’s a slippery slope this dependent thing.

So, this “First Day of School” thing has me feeling a bit anxious. I know they have told me their schedules and such but if I don’t write it down it becomes like dust in the wind. Well, I forgot to write things down. DUH!!!
Shannon, Asheton and Bradley are very good about keeping me informed of schedules and such so my anxiousness levels stay at a minimum. Since Asheton tends to write these things down for me, I will have her write some things down on my message board when she gets home. (of course I will have to make a note to remind myself to ask her to make a note. Geeeezzzz this gets to be exhausting.)

Anyways, when I am anxious or, experiencing some other emotion, Dallas sticks close to my side. I am more than thankful for his presence.  The link below is a video I made about this subject.

The advantages of having a pet when you have Alzheimer’s
https://www.youtube.com/watch?v=WX7sWgtiFHA

So, this “First Day of School” thing has changed a bit over the years. This is due the ages of these young adults who live with us and because of my Alzheimer’s. The thing that gets me through it all is my support system, the BRASH System. (BRadley, ASheton, Shannon) Yeah I know, I still have some of my creativity left.
As a side note, if you ever want to see how much of unnecessary knowledge I still have, come by and watch Jeopardy with me. For some reason, I’m really good!  Lol

So, whether you’re a working parent, a stay-at-home parent, or anyone else who has the job of raising these wonderful human beings called children, I hope your, “First Day of School” thing was a good thing.

Until Next Time,
PEACE

I Have Alzheimers, BUT It Doesn’t Have Me!

Attack of the Mean Tweets

I had to wait a few days before writing this for if I didn’t, it would be laced with extremely angry, foul language which I don’t deem appropriate for this arena.

To give you a little background before I get to the topic, I am very active on Twitter, Advocating as much as I can, sharing information that I feel what is worth sharing. I use an application called #TweetDeck which allows me to see multiple trends and searches all in one area. (I do anything I can to make my Alzheimer’s life less complicated.) Naturally, I have searches for Alzheimer’s, Early Onset Alzheimer’s, ENDALZ, and other hashtags related to Alzheimer’s.

I also read other tweets, some of which I find interesting, some I just skim by and then there are the eye catchers. These are the tweets that jump off the computer screen and shouts, “READ ME!” So, I do.
These tweets can be breakthroughs in the pharmaceutical area, they can be funny tweets or they can be, as it was in this particular instance, a mean tweet.

I came across this tweet and it shook me a bit:

Tweet: Up late at ma’s looking up random hashtags and of course most #EarlyOnsetAlzheimers tags are people joking about their memory #NOTFunny.

Here is a young lady at her Mother’s (who has Alzheimer’s) looking up #EarlyOnsetAlzheimers to find information about the disease and she found this. I thought to myself, “This can’t be true. Are there really people using the Early Onset Alzheimer’s hashtag to make jokes?” So, I went searching. This is just some of what I found:

Tweet: When my coworker gets mad at me for asking him the same questions daily sorry I’m like an 80 year old! #EarlyOnsetAlzheimers #Oopsie

Tweet: I just actually had to think about whether it was 2015 or 2016. #earlyonsetalzheimers

Tweet: Why do I keep forgetting that I have food in the oven?! #surpriseditdidntburn #earlyonsetalzheimers #ijustwantsomedinner

Tweet: My dog is on my bed, and I don’t remember how she got up here #earlyonsetAlzheimers

Tweet: Good thing I watched snapchat to remind my boyfriend he has a probate going on like right now. Lmao #EarlyOnsetAlzheimers

Tweet: Sat at the burrito shop for 30minutes realizing I called in at the wrong place …. #EarlyOnsetAlzheimers

Tweet: Literally could not think of the word EBOLA and just wrote the letter E on my test. #killme #EarlyOnsetAlzheimers

I was appalled. I couldn’t believe the ignorance, the insensitivity, the shallowness these individuals were exhibiting.

In anger (yes I know not to send e-mails, tweets are facebook posts when angry…but I did) I posted one of my own and here are a few responses I received.

(I am withholding their names to protect their assholishness)

The ALZ Guy@TheBrianLeBlanc Aug 4
My Tweet: I cannot believe there are people this cruel using #EarlyOnsetAlzheimers to make jokes. REALLY??? 

Reply Tweet: @TheBrianLeBlanc I’m sure youll forget all about my tweet soon #norulesontwitter


Reply Tweet: @TheBrianLeBlanc when you take a joke to seriously… #
Womp

Reply Tweet: @TheBrianLeBlanc I see you play the victim card so well you’ve made a career from it #envy

I then began to see some tweets from others who felt the same I did:

I then began to see some tweets from others who felt the same I did:

Tweet: Do you really have to be such an ass?

My Tweet: I’m not a victim of anything. I have ALZ. I Advocate to make people aware of this horrible disease.

Then the “Twitter Bully” posted this. I felt as if I were back in 3rd grade!

Tweet: @TheBrianLeBlanc  #norulesontwitter #hestartedit #lastword

He may as well have said “Nanny Nanny Boo Boo.” He started it? lol
I realized at that point the type of immature, ignorant bully-type individual I was  dealing with.

I also realized by showing my anger just fuels his little mind and gratifies him.

So, I blocked him.

I started thinking about why this got to me so bad. Yes, I have Early Onset Alzheimer’s and I love a good joke as much as anyone else. Was I being unreasonable? Was I taking this too seriously?

Then I realized I had been surrounded by Alzheimer’s for over 30 years starting with my Grandfather in the 80’s. I saw my Mother go from an extraordinary, church-going, intelligent woman; someone who could sing like an angel; someone who was always there for her children for as long as she was able; to someone who could no longer communicate and no longer knew who her children were. I don’t wish that upon anyone, yet it will all happen to me, just like it did to those who came before me.

I also realized that newly diagnosed individuals use #EarlyOnsetAlzheimers to find out information that may help them cope, help them understand, help them get through to another day. They don’t go there to find people making jokes or pretending to have this disease.

So, for all those “Twitterers” out there who thinks it’s funny to use #EarlyOnsetAlzheimers to make jokes, I ask you to go to you a nearby care facility. Look at the faces of people with #Alzheimers. Look at the faces of their friends and family. Go to my Twitter account and look at my face. Take plenty of mental pictures so the next time you want use #EarlyOnsetAlzheimers to make a joke, use your brain to recall what you saw and realize that each day, those of with Alzheimer’s Disease lose a little piece of our brain each and every day.

There’s nothing funny about Alzheimer’s!

Until next time . . . PEACE

B

I Have Alzheimer’s, BUT It Doesn’t Have Me!

Is It Just About the Money?

As a very active Alzheimer’s Advocate, I scour the Interweb daily looking for glimmers of hope. Whether it be stories of overcoming adversity, the possibility of new drugs that will help people instead of mice or humorous moments, I try to take in the positive.

With that in mind, I came across a story this morning entitled, “Eli Lilly’s big Alzheimer’s bet: Blockbuster or bust?” I thought, “here’s that glimmer of hope I’m always looking for,” but as I started reading, my heart sank. I should have noticed the story was written by NEW YORK (CNNMoney) but I was too involved in the hope that the story was going to be centered around an Alzheimer’s breakthrough.

Although I have Early Onset Alzheimer’s, I still have the comprehension that company’s need to make money to succeed. I get it.

The story started out on a positive note:
Drugmakers are facing an enormous problem — and a huge opportunity — and Eli Lilly is helping lead that high-stakes race. The pharma giant has made an expensive bet on an experimental drug that could be the first marketed treatment to slow the worsening of Alzheimer’s. That would represent a critical medical breakthrough known as “disease modification.”

I was getting excited but my mood quickly turned. The article became more about how much money Eli Lilly would make rather than how much the new drug would help people with Alzheimer’s.

“It would absolutely be a multibillion dollar blockbuster,” 

“The drug companies are willing to spend a lot of money on such a speculative, expensive trial because the market opportunity is massive. The numbers are staggering,” 

“Blockbuster sales possible: If the Alzheimer’s drug is successful, BMO estimates Eli Lilly could generate risk-adjusted global sales of $7.6 billion by 2024. That would make investors quickly put aside Eli Lilly’s struggles to turn the page on older blockbuster drugs whose patents have already expired.”

“Pharma companies are looking at Alzheimer’s disease because they recognize this will be one of the biggest biopharma markets of our lifetime by virtue of demographics,”

Jonas Salk wasn’t thinking about how much money he could make when he discovered the Polio cure.
When Edward R. Murrow asked Jonas Salk who owned the patent to the polio vaccine. “Well, the people, I would say,” Salk responded. “There is no patent. Could you patent the sun?”

One critic of the big pharma called Salk “the foster parent of children around the world with no thought of the money he could make by withholding the vaccine from the children of the poor.”

Where are the Jonas Salk’s of today?
I understand research costs money but it has now become a matter of “how much money will we make?” rather than “how many people will we be able to cure?” It’s so very sad.

Oddsmakers are giving Eli Lilly’s drug a 60% chance of success and believes it could meaningfully boost the company’s profit margins. If the statement would have ended after “chance of success” it would’ve been a great statement. Adding on the rest just proves the point that is really is all about the money.
Others are far more skeptical, putting the chances that either Biogen or Eli Lilly brings an Alzheimer’s drug to market at just 15%.

In the end, the only statement that I found truth in, but at the same time, sadness, was “In terms of drug development, nothing has worked. It’s been one failure after the next.”

I Have Alzheimer’s, BUT Alzheimer’s Doesn’t Have Me!
Until Next Time . . .

PEACE!

Saved by Siri

Since I am no longer able to work, my main focus is making my family comfortable. In between scouring the Alzheimer’s sites for information to post on Twitter, Facebook and/or to update my Advocacy speech, I do laundry, I clean, I unload and reload the dishwasher, it’s what my life has come to be. For all practical purposes, I am “Mr. Mom” and I’m OK with that. It’s not what I imagined retirement to be, but there are things that happen in which we have no control. This is one of those things,

Another thing I try to do is provide evening dinner for Shannon, Asheton, and Bradley. I used to love to cook. I could throw things together and make them taste so good. As long as I didn’t make it too hot (spicy), they would eat it all and eat all the leftovers. The leftovers were the key. It’s how I gauged whether or not they liked what I made. If it stayed in the refrigerator longer than 2 days, they didn’t like it. Jambalaya

As my Alzheimer’s shows signs of progression, I find that leftovers stay in the refrigerator a bit longer than usual. Every now and then I have to throw them away. Hell, even I don’t like what I make sometimes. To play it safe, I now use online recipe’s or recipe’s from the side of the box to make sure all the ingredients are there. I still add a pinch of this or that, and make sure the meal is nutritionally balanced, but I mainly stick to what the recipe calls for.

Now, don’t worry, this is not a food blog. I am just trying to set the stage for what today’s entry is really about.

Shannon works very hard to keep all things together. When she comes home at the end of the day, she is physically and mentally exhausted. I try to make sure everything is done so she can just relax.

Every Wednesday, there’s a place near our house that runs a special on their “BANG-BANG SHRIMP,” $6 for the order along with bread and a small bed of lettuce.  Although the shrimp have a bit of a kick, Shannon loves them. Since Wednesday was the 1st, and the 1st of the month is her busiest time, I decided to surprise her with dinner.

I called ahead, ordered the shrimp and left to go on my 6 mile, 14-minute round trip to get the food.

That’s where it went all wrong.

3 miles there, 3 miles back. I felt comfortable enough to drive that route by myself. After all, I was going to do something nice for my wife. So off I went.
About 10 minutes into the drive, I realized I was nowhere near my destination. Nothing looked familiar. As Yogi Berra would say, “It was Deja Vu all over again!” 

Since I have used “My Alzheimer’s Story” so many times recently, I immediately went to the part when I got lost going to my Dr.’s office. I had this. I pulled off to the side of the road and started putting info into my phone. The only thing wrong was, I couldn’t remember the name of the place I was going, I couldn’t remember what the Google Maps app looked like, I couldn’t remember a damn thing. The only thing I could remember was, “CALL SHANNON!” “CALL SHANNON!” However, stubbornness, pride, embarrassment and the fact that she had a horrific day prevented me from calling.

So I just sat. I hope no one reading this EVER has to face the feeling of not just being lost, but not knowing how you got there or how to get back.

siriBack to me sitting in the car in a complete blank state of mind. I don’t how long I was there. I again went to my phone to try and look for the Google Maps app. I pushed the main button on the phone and I guess I held it for too long. I heard a sound and the words, “What Can I Help You With” appeared on the screen. It was my friend Siri.

Embarrassingly I started to cry, uncontrollably, you know the point in a movie where someone is stranded on a small, uninhabited island in the middle of the ocean and they see a ship headed their way to save them? THAT kind of uncontrollable crying!

Although I couldn’t remember the name of the restaurant, I could remember Bang Bang Shrimp. So I asked Siri where to find Bang-Bang Shrimp. Bonefish Grill came up with directions.

SIRI SAVED ME!!!

I went to the restaurant, got the food and drove back home, with GPS directions of course. Pulling into the driveway, I realized what should have been a 15-minute trip had turned into almost 45 minutes. Going inside and seeing what my little journey had to done to Shannon was worse than anything.

She was angry with me that I didn’t call, and rightfully so. I explained that being she had a rough day, I didn’t want to bother her. She explained that if I had called her, this could have been resolved in less time and a lot less stress. She was right of course. My good intentions had bad results.

I realized at that point that my days of driving may be nearing the end. I remember when both my parents had to give up their keys. It wasn’t pretty. My Dad, although he couldn’t remember too much, held a grudge against my oldest brother for taking his keys.  I don’t want to put Shannon in that position. She has enough to deal with, dealing with me on a daily basis with just day-to-day activities.

What I’ve learned through all of this and what I hope to remember is, having Alzheimer’s means you have to lean on others for help. I have the 3 people I love the most on which to lean . . . Shannon, Asheton, and Bradley. I have my sister and brothers and I can’t forget my furry, faithful, stuck-to-my-side companion…Dallas. I have friends and family from coast to coast and all points in between that offer their support daily. I consider myself lucky and loved and I say that with tearful pride.

Thank you Siri, and Apple. Making an app to be used as a personal assistant, in my opinion, was the best thing you’ve apple_logo_dec07
ever done. I sincerely hope people like me will use this feature instead of just asking:
What is 0 divided by 0?

Until Next Time,
Brian

“I Have Alzheimer’s . . . Alzheimer’s Doesn’t Have Me!”

Thank Goodness My Long Term Memory is Still Intact

This past weekend, I attended a reunion of sorts. We celebrated 75 years of educational achievements St. Agnes Parochial School accomplished. Thousands of boys and girls passed through the doors of St.Agnes, boys in their tan khaki shirts and pants, girls in white blouses and navy blue skirts. (the uniform code was changed later on, but that was long after I left) Unfortunately, due to low enrollment over the past several years, the decision was made to close the school.
Like anything else that happens in New Orleans, whether good, bad, happy or sad . . . IT WAS PARTY TIME! Thus, The Final Bell Has Rung Celebration was created. I’ll get to the celebration in just a bit.

22205_10205504736592081_2017706285402144758_n
I must admit, when I first read about the closing of the school, it saddened me. So many memories came rushing into my head; teachers, classmates, activities, school plays, field trips, etc. I had my own personal movie playing in my head. I also visualized the layout of the school. (Spending 8 years in the same building, you get to know your way around) I could see the cafeteria and remember the smells of the lunches Mrs. Jeansonne prepared for us each day. I think we were all too young to appreciate how good her food was. How I would love to taste her chicken and rice again.
(Friday nights, all 3 of my brothers, at one time or another, as well as myself, attended Boy Scout meetings in the cafeteria. Although smaller in numbers, Troop 36 is still in existence today.)

It amazed me how much I remembered and how clearly the memories were. Most of the time, I have trouble recalling 11219047_10205504736072068_5639772073333305210_nevents from the day before or even 5 minutes ago, however, Alzheimer’s, if there is such a good thing about this damned disease, still allows me to recall memories of long ago.

One of my fondest memories was due to the huge enrollment in the 60’s (we were the Baby Boom Generation). The school ran out of classrooms. So, my 1st Grade class (1966) was in an old house behind the school. The next year the portable buildings were completed and they housed Grades 1-4. The main building was for the upper grades.

Moving into the main building for the 5th grade took a little getting used to. The hallways of the second and third floors always seemed so dark, long and daunting. I guess anything would look like that at such an early age. Now, still a bit dark, everything looks so small.

11247074_10205504736912089_1971133805939850598_n

Flash forward to the present and the “not-so-clear-memories.”  If not for the photos that my wife took, as well as others, at The Final Bell Has Rung Celebration, I would not have remembered who I ran into. Those who I did manage to see, although I hadn’t seen some of them in 45 years, I still recognized them. They still had the same faces, just a little bit older, sometimes grayer (like me), but I knew exactly who they were.

Some of them knew I had Alzheimer’s and were amazed how well I looked and that I remembered them. I’m not sure what they expected, but it goes along with the stigma of having Alzheimer’s. You’re supposed to be elderly and sickly looking. Don’t get me wrong, I’m not complaining or insulting anyone. I’m probably the first young(ish) person they have seen with Alzheimer’s. I totally understand and appreciate every one of them. I also ignore the stigma. Like Popeye says, “I yam what I yam!” and as I always say, “I’m Still Me!”

My wife, Shannon, stated in one of the pics she took, “Brian having a great time at the St. Agnes reception. He has seen and talked to so many old friends….he is so happy and in his element….this is ‘my Brian'”

It made me realize that she saw me as I “used to be” and it made me happy that she could see that. On the other hand, it saddens me that I am not that person all the time anymore. I want to be, and sometimes I am, but I want to be that person all the time, if not for any other reason than for her. She married a man who was funny, lively and outgoing and I still am at times, but I’m not as spontaneous as I used to be. It makes me extremely anxious and that pisses me off.

Anyways . . . as I said before, if it weren’t for the pics, I would have a hard time remembering a lot of what happened and 10416617_10205504735472053_8447422720410854227_nwho I ran into. I can be reminded of something if someone prompts me or brings up a certain situation but unfortunately, I’m not able to remember those things on my own.

As long as my long term memory stays intact, I can recall many memories, have many movies play in my head and still recall those dear friends from 40+ years ago. I just can’t remember the present too well. And that my friends is the beginning of a long, horrible road that I know I will travel, but I will travel that road with all my memories of yesteryear and those memories will include those of you whom I have had the pleasure of making your acquaintance.

Until next time,

PEACE
B

A Day in the Life

Busy Sidewalk
Picture yourself in a movie. You’re standing on a sidewalk…in a big city…at a busy intersection. You look around, everyone and everything around you is flying by at the speed of light. You try to concentrate but everything is “blurry-like,” happening so fast, concentration evades you.

Well, if you’re like me, you’re not in a movie. You’re in reality, under the age of 65, living with Early Onset Alzheimer’s Disease or some other form of Dementia.

I know I can’t speak for everyone, for everyone’s situation is specific to that individual, but I’m pretty sure certain similarities can be found.
For instance, you’re at a family gathering. These are people you grew up with, spent most of your life and time with, laughed and cried together, supported one another in times of need. You get the idea. Now, you’re sitting on a sofa, surrounded by these very familiar people and you cannot get into the conversations. You hear what’s going on and, under “different circumstances,” you would’ve jumped right in to add a comment, an insult or a funny remark, however, by the time you are able to form a complete thought, the conversation has continued at light speed and your comment or funny remark would’ve made no sense. Or worse, when you do try to jump in, you stutter so bad, everyone turns and stares at you. So you just sit . . . and listen . . . and try to keep up.
I experienced this at Easter this past year. One of my brothers-in-law noticed my embarrassment when I stuttered trying to jump in the conversation. ” He came up to me and said, “Hey, we’re all family here. Nobody’s going to judge you. Stutter away!”

This also happens in everyday life. Conversations with your immediate family are often interjected with, “you’ve told me that before,” or “oh, I remember when you asked me about that yesterday.” They do it in a way that is not insulting, but just as a way of saying, “we understand and we love you.” At least that’s what my family does with me.

I try to find humor in this by saying things like, “I know I told/asked you yesterday, I was just double checking. DUH!” Or when my wife and I are watching a movie and I get so excited or crack up laughing at a certain part, she will turn to me andLaughing say, “do you not remember seeing this movie a couple of weeks ago?” I say “no” but then I say, “you know, me having Alzheimer’s will save you a lot of money. You can buy me only 1 movie and I will watch it every few weeks and it will be like seeing it for the first time!”

Some people don’t understand humor when it comes to Alzheimer’s but, when you’re making fun of yourself and not others, well, I don’t see anything wrong with that.

I have always loved and embraced humor. Thankfully, my friends and family know and understand this and laugh right along with me. They send me jokes, funny sayings, cartoons … all Alzheimer’s related.
When I sent an e-mail to my brothers and sister, telling them of my diagnosis, my oldest brother sent back a response saying, “just letting you know, you sent this yesterday also.” After laughing hysterically, which I needed to do in such a bad way, I knew things were going to be OK.
One of my childhood friends will say, “hey, do you have that $20 you owe me?” Of course, I immediately go into panic mode, trying to remember whenI borrowed $20. This is a friend that will drive 3 hours, each way, just to come spend a few hours with me.

Then, as the saying goes, “Along with the GOOD comes the BAD!”
This is what I call my dark or foggy times. It happens with no rhyme or reason. It just comes along, punches me in the face and, well, things get a little dark.
AloneIt’s sort of like spontaneously combusting, except I burst into tears instead of fire.
I’ve always been an emotional person but since developing EOAD (Early Onset Alzheimer’s Disease) it has heightened the emotion. Something could set me off as simple as a baby or puppy video. Or, a fond memory will pop into my head of “happier, more normal times.”
Watching a sad or emotional movie? FAGHETTABOUDIT!!!! I literally fall to pieces. I cried for about 20 minutes after watching “American Sniper” with Bradley Cooper. (if you haven’t seen it, it’s a must see, but, I digress)
Then there are the times when I don’t know why I’m crying or even when I’m crying. Tears are now just so commonplace, I don’t even recognize that they are streaming down my face. Bizarre, I know, but Alzheimer’s is a very bizarre disease.

I know I’ve probably said this a lot (and yes, I do remember saying it over and over again! lol) but I am not saying all of this to gain sympathy.

I DO NOT WANT SYMPATHY NOR DO I WANT ANYONE FEELING SORY FOR ME!

I am merely trying to give you a perspective of what a day in my life is like.

DO ALL OF THESE THINGS HAPPEN MULTIPLE TIMES A DAY? YES!
EVERY SINGLE DAY? NO! (but more than not)
DO I WISH THIS ON MY WORST ENEMY? NOT “NO” BUT “HELL NO!!!”

I took on the responsibility of becoming an Advocate for Early Onset Alzheimer’s Disease. I don’t have the world stage of a Maria Shriver, Seth Rogen or other folks who are able to advocate in a much bigger way than me but, I do what I do for it is my passion.
In my Advocacy speech I say, “this is the best job I have ever had in my entire life . . . that I don’t get paid for!”
Trust me, due to my Alzheimer’s Disease, I’ve met some of the most wonderful, courageous, artistic, compassionate, beautiful people that a paying job would have never allowed me to do.

You gotta see the positive!!!

Until next time . . .
PEACE

B

Mother’s Day

(With Mother’s Day coming up, I wanted to pay homage to ALL MOTHER’S ((and this means all individuals who fit the role of a Mother regardless of gender)) who selfishly give of themselves, day in and day out. I wrote the following Blog Post 2 years ago. I re-read it for I didn’t want to re-hash anything I had already written. I am reposting this with a few additional words and photos. The additions will be in italics and bold.)

Holidays. There are so many holidays on the calendar that it’s difficult to keep track of them all. Some of them are legitimate and some are just made up for some reason or another.
The one holiday that I truly believe is the holiday of holiday’s is Mother’s Day. The reason I say this is because, without Mother’s, none of us would be here. Sure, the Father’s had a little something to do it with it but the Mother’s are the ones that carry the burden.

In an effort to explain the importance of Mother’s, I went to merriam-webster.com to look up the definition of “Mother.”Mother's Day
This is what I found:
a :  a female parent
b    (1) :  a woman in authority; specifically :  the superior of a religious community of                      women
      (2) :  an old or elderly woman
First off let me say I believe Merriam-Webster needs an update.
Second, I apologize to all Mother’s, both female and male (who assume the role) for the insincerity of the definition.

While I am not an expert, and not a recent guest of a Holiday Inn Express, I would like to give my own definition, or explanation, of what a Mother is.

A Mother is someone who:
– can soothe anything, no matter what the age, with a hug and a kiss
– will fiercely protect her family like a lioness protects her cubs
– praises their children for the good they accomplish but also holds them accountable for any and all of their wrongdoings
– can make your favorite meal impossible to replicate because of her “secret special ingredient.”
– can assume the role of sole provider when no other support is available or not given
– can assume the role of caregiver of a spouse/significant other, parent or grown child when that individual is no longer able   to support or provide for themselves.
– rises from her sickbed to take care of her family no matter how bad she feels
– consistently puts others before themselves
– loves unconditionally

A Mother's Love

I could go on and on, however, I think you can see that a Mother cannot be defined by any one definition, especially by the definition provided by our friends in the dictionary profession. A Mother’s definition (can change on a daily or hourly basis or at a moments’ notice.) Defining a Mother is almost impossible because of the infinitive person she is.

In addition to caring for her children, most Mother’s are also wives, which involves taking care of a bigger child with a different set of issues altogether. Most of the time, that bigger child has no clue as to what his wife does on a daily basis because he is too busy complaining about his day, playing golf, getting together with his friends, playing X-Box, Fantasy Football, etc. (Just to be clear, I am not grouping all Men/Husbands into this category, but YOU know who you/they are.)  😉

In my definitions of a Mother, one of the things I stated was, A Mother is someone who: rises from her sickbed to take care of her family no matter how bad she feels.
When my Mother was stricken with Alzheimer’s, over time she forgot how to do things, forgot what things were but still tried.

 She still had that Motherly Instinct inside trying to get out. Finally, when she lost her ability to speak, she would sing. (She sang in church for over 40 years and she loved movie soundtracks, especially The Sound of Music. When she would clean, she would put that soundtrack on and just sing away as she cleaned the house.)  Although Alzheimer’s took away her speech, she kept the perfect pitch. No longer knowing the words she would make up words or say la la la la, but I could recognize the song. I truly believe it was her way of saying, “Here, let me make YOU feel better by singing to you!.” Even if that wasn’t true, I don’t care. No one can disprove it so I believe it to be true because that’s who my Mother was . . . and although no longer of this earth, STILL IS!

(As a side note, in the last few hours of her life, I was the one singing to her. My sister held the phone up to her ear and I sang her a song.
There was eye movement as I sang as if she was actually hearing my voice. My sister and I will ALWAYS believe she heard the music she so loved. A few hours later, she passed away. With that said, NO ONE will ever tell me the power of music does not matter.) 

Mom's Hands
(I’m not sure of the date of this photo but I do know this is the last photo I have of my Mom and I. She NEVER, EVER went out of the house without make-up on let alone take a photo with no make-up on. Plus, I wanted everyone to remember her how she was . . . BEAUTIFUL!
At one point during my visit, she reached for my hand with both of hers and we just held hands in silence, looking at each other, she towards the end of her Life with Alzheimer’s and I, just starting out. I’m so glad I was able to capture this moment. 

So to all the Mother’s in the world, regardless of whether you’re married, divorced, single, an adoptive Mother, a Father filling the role of a Mother, I hope your Mother’s Day is everything you want/need/hope it to be. We all know you deserve much more than just 1 day a year and hopefully you receive it.

Until Next Time . . .
Peace

Mother's Day

An Alzheimer’s Poem

Tomorrow I may not recall,
The things I should have said today.
I can’t help it, it’s just how it is,
So I don’t hold back saying what I want to say.

I may not always remember your name,
But somewhere inside, there’s a memory.
With a little coaxing it comes to the forefront,
Slowly appearing, again becoming a reality.

I hate that I don’t appear to be who I once was,
But inside, I’m still me.
My reality may be a little skewed and bent,
My speech a little stuttered, not flowing and free.

These are just minor setbacks,
So I don’t need nor want your sympathy.
Yes, I’ll get worse over time,
But don’t worry, Alzheimer’s isn’t contagious, you can catch it from me.

Just remember, life is short and unpredictable,
You never know what tomorrow may bring,
So express the love you hold in your heart,
Belt out that song you so badly want to sing.

Brian – 4/26/15

Eat THESE! Take THAT! Look at THIS . . . Fact or Fiction?

As an Alzheimer’s Advocate, I’m always searching the news feeds for anything new in the Alzheimer’s world. Some of things I find are really interesting and what I believe to be helpful.

The latest being a new app called, Life in the Moment“The full concept will launch in late spring. She hopes it will not only help families manage the disease but help monitor its progression. Life in the Moment will have “a variety of really practical daily life activity support tools, she said, “so that families just have one place to go.”
They even have the support of Glen Campbell’s family behind this app and will feature his song, “I’m Not Gonna Miss You.” It seems to be a very good piece of technology and will hopefully do what it says it will do.

Life in the Moment

There is also an app that states:

App That Helps Patients Sing Their Favorite Songs Slows Dementia, Alzheimer’s Disease, Improves Memory

This advertisement features an image of Gene Kelly from “Singing in the Rain” to help promote the app.

singingintherain01

While I understand the idea behind this app, and it is “FREE” to download, instead of choosing the songs they have on their app, there are tons of places to download free songs on your phone or tablet that can be tailored to your loved one’s tastes.
One of my brothers made a CD for my Mother (who recently passed away on January 14, 2015 from Alzheimer’s)  and played it for her when he visited. My Mother loved music and had a beautiful singing voice. Our childhood was filled with music, especially the “Sound of Music” soundtrack, which my mother would sing along with Julie Andrews.
Anyway, she seemed to respond favorably to the music.
Since I have Early Onset Alzheimer’s, I also find listening to music extremely comforting, as well as emotional. To me, it is a healing tool.

But like I said, the app is free so, it may not be so bad.

So that’s 2 of the good things I have found on the Interweb. I’m sure there are more, but those were the most recent I came across so I used them as examples.
Now onto the other things.

Let’s start with Coconut Oil.
can-coconut-oil-prevent-alzheimers

As the caption on the picture says, “Can Coconut Oil Prevent Alzheimer’s?”
Well, let’s face it, if Coconut Oil could prevent Alzheimer’s, every Neurologist in the world would be prescribing it. Drug companies would be making their version of it and the future would be Alzheimer’s free.
Don’t get me wrong, Coconut Oil does have some great health benefits. My sister and brother-in-law take it religiously and it has helped them in a nutritional way, but, they don’t have Alzheimer’s. Coconut Oil has slightly improved brain function in people with Alzheimer’s, but only for a short period of time. I call it the band aid effect when it comes to Alzheimer’s.
I spoke with my Neurologist about Coconut Oil and he said the jury was still out and there was no concrete proof of its curability capability.

Then I came across this:

Turmeric: ‘Remarkable Improvements’ For Alzheimer’s Disease

NM 2754 L300 Turmeric_150x280

The first thing I read was, “A turmeric treatment on patients with Alzheimer’s disease symptoms has revealed “remarkable improvements. A recent study found three patients with Alzheimer’s disease (AD) saw reduced severe behavioral symptoms if they consumed less than a gram of turmeric each day, for three months.”
Read more at http://bit.ly/1IHZfAk

I’ve been taking Tumeric for more than a year. I haven’t seen any improvement. As a mater of fact, I have gone from Stage 3 to almost Stage 4. Maybe it works for people in earlier stages or maybe it is just me. I’m just saying what it has done for me,or better yet, what it HASN’T done for me.. Maybe it will work better for you.
Then there’s this . . .

Can What You Eat Help Prevent Alzheimer’s Disease?
http://on.wsj.com/1DAJzui

organic-vegetable-of-the-month-club-5-lbs-per-month-1

The MIND diet was developed by researchers at Chicago’s Rush University Medical Center, whose recent study found that certain foods could help prevent the onset of Alzheimer’s disease.

Although I grew up in New Orleans (the worst place to live if you want to eat healthy but some of the most delicious food you have ever eaten. OMG how I miss that food!) my mother always served us balanced meals. We always had a salad, a vegetable, a protein and a starch. Sure, back in the 50’s, 60’s and 70’s, there was a lot of grease or other fats mixed into the food to make them taste absolutely wonderful. However, my Mother was the poster child for eating low cholesterol, low carb, low fat and high protein. She would even weigh the meat to make sure her and my dad only ate 4oz’s per serving, yet, she developed Alzheimer’s and my Dad developed Dementia.

I guess what I am trying to say is, the way I developed Alzheimer’s was because of the gifts of proteins and genes passed down from my Mother and Father which they received from their parents, and so on. I could have been a Vegetarian or a Vegan. I could have exercised every day and been the picture of health but I would have still have developed Alzheimer’s.

I’m now on Aricpet and will soon be on Namenda. These drugs are to help slow the progression of Alzheimer’s, giving those that have it a little more time time to enjoy the good parts of their lives. But, after a while, it no longer stops the progression and, well, you know what happens after that.

So, I am in no way trying to say that it’s a waste of time for people and companies trying to come up with ways to prevent this disease or cure those of us that have it. There have been some breakthroughs but still there is no sure fire way of preventing or curing this disease.

More funding is needed to come up with a sure fire prevention and cure. Without that, everything else is just fluff, or as I previously called it, a band-aid.

You and I both know that after while, band-aids come off and something else then has to be applied.

Until next time . . . .
PEACE!