by Ann Campanella
Brian Kursonis, who has early-onset Alzheimer’s, and I met for the first time back in April. He showed up at the memory care facility where I was doing a reading from Motherhood: Lost and Found, a memoir about my mother’s descent into Alzheimer’s. He had reached out to me a few months earlier after seeing some posts on social media about my mother’s illness.
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.
At the time, Brian was 55 and I was 56. We connected instantly, perhaps because I had experienced 14 years of my mother’s Alzheimer’s, and he was at the beginning of his journey. According to research studies, he may only live 8 to 12 more years, and his cognitive function will likely decline within 2 to 4 years.
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 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. Men’s Health Magazine and The L.A. Times ran stories on him, and he’s been interviewed by CBS Evening News and for a PBS documentary coming out in 2018.
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.
Ann Campanella recently joined the management team of AlzAuthors. She is the author of Motherhood: Lost and Found, a memoir that tells the story of her mother’s descent into Alzheimer’s at the same time Ann was trying to become a parent and experiencing infertility.
Connect with Brian on his social media: