November is Alzheimer’s Awareness Month. Locally, the annual Walk to End Alzheimer’s is this Sunday afternoon at 3, at Community Maritime Park. This year’s event benefiting the Alzheimer’s Association features almost 700 participants on 96 teams. One of those teams is Brian’s Brainstormers captained by Brian LeBlanc.
Since his own early diagnosis five years ago, Brian has shared details of his own journey as one of nearly 6 million Americans living with Alzheimer’s disease.
This latest installment features a look at how Alzheimer’s affects his everyday life.
“I live where everything is convenient for me; everything is within walking distance,” said Brian, highlighting the importance of location, location, location, as a now single person with Alzheimer’s disease, in choosing where to live.
A lot has changed in his life and more changes are coming. But, when he returned from Tennessee last spring, he picked a place near Cordova Mall, close to shopping, restaurants, and a hospital.
“This place is quiet. They have everything that I need. And, it’s just a perfect location for me since I don’t drive anymore,” Brian said.
It’s been about two years since he stopped driving because of his condition. He’s also unable to ride a bike because of issues with his balance.
He has a nice apartment. He thanks me for the compliment, “I tried to make it homey with pictures and just little knickknacks around just to try to make it, make it my own.”
Looking around his apartment, it’s evident that this New Orleans native loves the Saints. He loves Disney World. And, music is very important to him.
The album wall in his living room highlights not only the music that he loves, but also music that his parents loved.
“My Dad built this beautiful stereo that he had set up in the living room and his favorite piece of music was the 1812 Overture and you see I have that album cover over there,” Brian recalls as he talks about the collection of album covers. He says his father also liked Herb Alpert and the Tijuana Brass.
“My mother is the one that liked musicals,” he said pointing to the covers for "Fiddler on the Roof," "The Sound of Music," and "South Pacific."
While his short-term memory loss is progressing, Brian can remember his Mom singing along with those classic musicals while cleaning the house on Saturdays. He also recalls the very first time he ever went to a movie theater.
“Now, yes, I remember this because it’s way stuck in my long term memory and I’ve been reminded of it so many times,” he declares in reference to a common misperception some people have about Alzheimer’s disease.
That first big-screen movie was "The Sound of Music."
“It was on a Sunday. It was at the Lakeside Theatre, which is no longer there in New Orleans, and it was raining and my great grandmother took us to go see that movie,” he recounted.
For Brian, who for years sang lead in a local band, music is his happiness, as it was for his mother until the end of her journey with Alzheimer’s.
“We could put the headphones on her and her and her face would just light up,” he reminisced. “My mother couldn’t speak the last part of her life, but she could “la la la,” right on pitch.”
To reinforce the “absolute need” for music in his life, Brian shifts to the important role of smart technology, including his “little girlfriend,” Alexa!
“She’s programmed two times during the day, one at 10 in the morning and one at 2 in the afternoon, she’ll send me a reminder to play music,” he says. These particular times, he’s learned, are when he usually tends to fall into what he calls his “fog.”
“And, so listening to music brings me out of it. But, when you’re in the middle of a fog, I can’t sometimes tell her to play music, and so that’s why I have it scheduled.”
The kind of music he listens to at those set times depends on his mood. On this day, he feels like hearing some hits from the 1970s.
He asks Alexa to play KC & The Sunshine Band.
From his dining table, where we’re chatting, we’re listening to the music and enjoying the moment.
Of course, there are many other practical benefits from the use of smart technology, as I learned just minutes earlier. Brian was sharing a story, that I’m sure I’ve heard before, about a friend who talked him about losing his keys, when Alexa chimed in to remind him to check his blood sugar level and take his insulin shot.
“Check my blood sugar and take my shot, because I’m also diabetic and without reminders that this, I won’t do what I’m supposed to do,” he said.
Brian also gets reminders about taking his medications, eating and bathing; and Alexa reads his calendar to remind him of his many speaking engagements and appointments, like this one with me.
And, when he can’t locate his iPhone, no problem.
“Alexa, find my phone,” he commands.
“So, she’ll call my phone and wherever it is, I hear it ring and I go searching through the apartment and I go find it, which helps me tremendously,” Brian declared.
By the way, as a person living with Alzheimer’s disease, he gets a kick out of the play on words with his ringtone, “Who are You” by The Who.
“Look, if you have Alzheimer’s or other dementia-related illnesses and you can’t find humor, it just makes things more realistic. And, I know how bad this thing is, but I have to have things that make me laugh during the day.”