A year ago we were introduced to Brian LeBlanc. The Pensacola resident was diagnosed with early on-set Alzheimer’s in 2014 and he’s been sharing his story in hopes of raising awareness about the disease.
LeBlanc has been pretty busy lately, especially in November, which is National Alzheimer’s Awareness Month.
On Saturday, November 12, LeBlanc drove himself to Seville Square in downtown Pensacola, where he and others in the community gathered for Covenant Care’s annual Walk for Alzheimer’s.
“We’re here today for a very important reason and that is to walk for Alzheimer’s,” said LeBlanc, keynote speaker at the event that he referred to as the “super bowl” for Covenant Alzheimer’s Care.
LeBlanc is an Alzheimer’s advocate at the national, state, and local levels and is a member of the Covenant Care board. He talked about the importance of raising awareness and funds to support the programs and services offered to local Alzheimer’s patients, who aren’t as recognizable as they used to be.
"Now in case you haven't noticed, the face of Alzheimer's has changed; people are younger and younger," LeBlanc said.
“That’s because Alzheimer’s is no longer just a disease of the elderly. It’s now affecting individuals under the age of 65, individuals in their 30’s, their 40’s and 50’s; individuals like me.”
LeBlanc, who is now 56 years old, recounted his own diagnosis on October 28, 2014 and referenced his extensive family history with Alzheimer’s; on this day remembering his mother Norma who died from the disease.
“Alzheimer’s disease, it’s not pretty," he said. "And, I don’t try to paint a pretty picture of it because, to be quite honest, it’s quite horrible. I know this because I’ve seen what it’s done to my loved ones. I know what it’s going to do for me. I know what it’s going to do to me, but I don’t think about that. If I did, I would cry a lot.”
The Covenant Care Walk for Alzheimer’s in Pensacola was LeBlanc's ninth such event since August, and he did experience sadness. November 12 happened to be his parents’ wedding anniversary and the day before his mother’s birthday.
As the ceremony continued, the time came to recognize loved ones lost to Alzheimer's with flowers. It was difficult. And, just when LeBlanc needed it, familiar faces showed up.
"Bob Kelly; good to see you," said Bob Kelly, as he and his wife Caroline Kelly introduce themselves to LeBlanc.
Mrs. Kelly is beginning her own journey with Alzheimer’s, and she and her husband Bob attend a support group that LeBlanc used to go to.
LeBlanc can’t pull up their names, but he recognizes them and recalls that they named their car. The Kelly's remind him about 'Henrietta' and then they linger for a few minutes to commiserate about how Alzheimer's has affected them.
"I can’t remember what I had for breakfast, but I remembered you named your car," said LeBlanc. "It’s so strange what we can and can’t remember," added Caroline Kelly.
LeBlanc goes on to tell them about watching the TV game show Jeopardy and how he's able to come up with the answers to often difficult questions, when he has difficulties remembering more routine things.
The Kelly's recalled the way Caroline repeats herself. "About five minutes later," says Bob Kelly, "she asked me the same question again, and I said ‘you’re screwing with me aren’t you?’"
They all share a laugh.
Making light of the situation is how they cope because, they say, it beats the alternative.
But, LeBlanc says it’s not always easy. At age 56, he’s in the early stages of Alzheimer’s and he often recognizes the reaction people have when they learn he has the disease but is not bed-ridden or wheelchair-bound and can still function.
“And, it happens every time, you see people kind of whispering to each other saying... I don’t know what they’re saying, but in my mind I’m thinking they’re saying 'Oh my God, look, he has Alzheimer’s and he can talk and he can sound so intelligent;"
LeBlanc explains it's a feeling of somehow being on display, like "I’m the puppy dog in the window.”
He says it’s all part of the stigma of Alzheimer’s; either people don’t believe that you have it or they treat you differently.
As an example, he says people he encounters often will ask his wife Shannon how he’s doing, when he’s standing right there.
"She’ll jump in and she’ll say, why are you asking me? He can talk.” LeBlanc continued, "That’s the whole thing, people don’t understand the fact that I can answer a question.”
He says the result of such awkward interactions have been frustrating and isolating, and so he takes to social media to vent.
"You know, I’ll post a picture of myself and I’ll say, ‘you know, you can still joke with me. You can still laugh with me. I can still understand things. So, just call me, I’ll answer. Ask me for coffee, I’ll go with you. Just don’t ignore me.'"
LeBlanc is doing his part to help people have a better understanding of Alzheimer's just by sharing his personal journey with the disease. Next time, we’ll find out more about his advocacy, including his recent Board position with Dementia Alliance International, which meets on December 6. Also, he's working with the Florida Department of Elder Affairs Dementia Care and Cure Initiative Statewide Task Force, which meets in Tallahassee on Dec. 15.