Since his diagnosis of early on-set Alzheimer’s in 2014, Brian LeBlanc of Pensacola has been sharing his personal journey with the disease. In the past two years, his local advocacy has reached an international level.
“Alzheimer’s Advocacy is, is my, my job,” said LeBlanc after last month’s Covenant Care “Walk For Alzheimer’s in Pensacola. “It’s the best job I’ve ever had that I don’t get paid for.”
LeBlanc was one of the featured speakers, and was set to do the same thing at an event in Niceville the next day, his ninth such event of the year.
He calls it a gift to be able to share his story and possibly touch someone’s life.
“Either something you say to them where if they’re experiencing some things they’ll go see their doctor, or if they have a family member or friend or somebody, who’ll go back and say ‘I heard this guy and he mentioned something and I’ve noticed you were and have you ever thought about getting that checked?’ And if they go to the doctor, then I have done what I set out to do is reaching that one person.”
From an organizational standpoint, LeBlanc started speaking to groups on behalf of the local Alzheimer’s Association. He became part of the Early Stage Advisory group for the National Alzheimer’s Association in Chicago. He’s traveled the country on behalf of the Dementia Action Alliance out of Falls Church, Virginia. And, he recently accepted a nomination to the Board of Dementia Alliance International.
“The advocacy and educational value is pretty much immeasurable,” said Leslie Johnson, executive director of Covenant Alzheimer’s Care in Pensacola and her mother battled dementia for over 10 years.
Johnson says LeBlanc, who serves on their local board, is in the unique position of being able to humanize Alzheimer’s by talking about what having the disease is really like.
“So many people see this as a disease of someone else, of an older person, someone in a long-term care facility,” she said. “I think that’s the first step in trying to devote funding and research opportunities toward finding a cure is making people stand up and pay attention to what’s happening and the best way to do that is to make it as an issue that could potentially impact their lives.”
Part of LeBlanc’s mission is to help eliminate the stigma of dementia and Alzheimer’s and to assist others they encounter in better recognizing their symptoms.
“People tell me I look kind of drunk,” LeBlanc said, explaining what he’s like when he’s having a bad day “because I can’t talk, I don’t have good balance, and so they might think there’s something really wrong with this guy.”
That brings us to his recent affiliation with the Florida Department of Elder Affairs Dementia Care & Cure Initiative Statewide Task Force, which was formed in August 2015.
It was initiated by three individuals who were residents of Westminster Oaks Retirement Community in Tallahassee who were each having their own experience with dementia. Sandy Halperin was waging his own battle with Alzheimer’s (his story was chronicled on CNN). At the same time, Everett Yarborough and Pat Hogan were serving as caregivers for their wives, who had been diagnosed with various forms of dementia.
With over a half million people in the state diagnosed with dementia, Hogan says Florida is experiencing a “public health crisis” that’s expected to get worse.
He believes people like LeBlanc are well suited to help the state address the issue.
“That they’re seated at the table that’s making policy, that’s making recommendations and progress from the standpoint of those actually living with the disease and can make a much better contribution there than just from the occasional answering of a question,” said Hogan.
The panel meets this Thursday, Dec. 15 in Tallahassee, which in April was named the state’s first Dementia Caring Community. The agenda will include an update on their comprehensive dementia training program that’s now underway.
“We’re training first responders, firemen, policemen,” Hogan said, noting that locally they’ll begin training people in the medical and business communities. “All the people in the community to raise awareness and become dementia friendly so we can make life easier for people living with dementia and their caregivers.”
With Brian LeBlanc’s help, the goal of the Dementia Care & Cure Initiative Statewide Task Force is working to expand the number of individuals certified as Dementia Friends. Also, their goal is to have at least 30 Dementia Caring Communities in the state by the end of 2017.