Brian had attempted to meet me at two earlier book signing events. The first one came and went because, well, he forgot about it. The second one, there was some confusion about which Barnes & Noble I would be at, so we ended up missing each other.
The third time was the charm. When Brian walked into the dining room of the memory care facility, I recognized him immediately from photos I'd seen on Facebook and Twitter. I asked him to join our group that had gathered around a long table. I was struck by Brian’s kind smile, his intelligence and wisdom and the fact that he and I were almost the same age.
During the reading, I asked Brian tentatively if he was comfortable talking about his condition. He cleared his throat and said, “Sure. I’d be happy to.”
Brian told the story of being diagnosed after “blanking out” repeatedly at his job where he was a process analyst of retirement accounts. The work load was heavy, with lots of number crunching, and he was used to being good at it. But suddenly he was on the verge of being fired.
He went to the doctor for Vertigo, expecting an easy fix. Brian’s fiancé, who accompanied him, mentioned in passing to the doctor that his memory was terrible. This led Brian to a seeing a neurologist. The diagnosis came in stages, and his doctor used the word, “dementia.”
“I was stunned beyond stunned,” said Brian. “I didn’t even know that was a possibility.
Brian’s life changed dramatically. Suddenly, he was no longer working and, instead, spent his days in an easy chair, caring for the dogs. Gradually, Brian realized he could waste the rest of his life feeling depressed with nothing to live for, or he could move forward. He began reaching out and connecting with others (like me) in the Alzheimer’s world.
By the end of the evening, I felt as if I’d met a sibling, someone who knew what it was like to stand on the precipice of Alzheimer’s and still have hope.
Recently, I set up an interview with Brian, and he shared more of what happened after his diagnosis.
After the Diagnosis
After his period of grief and adjustment, Brian realized that helping others made him happy. So he set about finding ways within the Alzheimer’s world to do just that. He drew from his experience in a former line of work as a counselor and created a website called withALZmyHEART. The website walks people through an early-onset diagnosis and offers hope.
“I stumbled into being an advocate for Alzheimer’s,” Brian said. He met people online and at conferences. With the awareness that he was running out of time, he reached out to more people through social media. Because of his unique ability to articulate about a disease that is a mystery to many, he has been offered speaking engagements and interviews with national publications.
Brian has become the face of Alzheimer’s in PhRMA’s National GoBoldly Campaign, a public service announcement that runs on many television channels. See it here:
However, the project dearest to Brian's heart is Faith2Care, an innovative plan to connect caregivers, people of faith, and those in need. The idea came to him after spending time on several Facebook caregiver groups. “The posts broke my heart,” he said. “I had to find a way to help.”
Brian wants to find all the caregivers that need help – anything from mowing a lawn to giving someone a ride or providing respite care – and match them up with those in the faith community who want to help.
“Caregivers are a hidden group,” said Brian. “They don’t have time to have a voice. The faith community wants to help, but they don’t know how to find the caregivers.”
“I want to do this on a grassroots level,” said Brian, “bringing people together.” His Faith2Care website would be the hub, and he has hired a company to help him manage all the data.
Brian has not allowed his disease to define him. “I don’t care how people see me,” he said. “I just want to help.”
The future does not concern Brian. He’s focused on the present and doing everything he can to make the world a more compassionate place for caregivers and those who are living with Alzheimer’s.
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