Brian Kursonis: Early Onset Alzheimer’s Patient and Advocate Has a Heart to Help

by Ann Campanella

Brian Kursonis, who has early-onset Alzheimer’s, and I met for the first time back in April of 2017. 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.

AlzAuthor Ann Campanella with Brian Kursonis

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 with one of his dogs

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.

Brian with Alzheimer’s advocate Ann Tillery

“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.

Faith2Care

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 working on his most important project: Faith2Care.

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 will 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 joined the management team of AlzAuthors last year. 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:

Websites: withALZmyHEART and Faith2Care

Facebook: https://www.facebook.com/kursonis

Instagram: https://www.facebook.com/kursonis

Twitter: https://twitter.com/WithAlzMyHeart

 

Harriet Hodgson writes a new book, “Smiling Through Your Tears: Anticipating Grief”

Layout 1Anticipatory Grief: Powerful Feelings for Alzheimer’s Caregivers

By Harriet Hodgson

After my father died, my mother moved to Florida to be near her older sister. Two years later her sister died, and Mom felt lost without her. To fill her days, Mom went on a variety of trips, often with a friend. One day she called to tell me she was “out West.”

“What state are you in?” I asked.

“I don’t know.”  Continue reading “Harriet Hodgson writes a new book, “Smiling Through Your Tears: Anticipating Grief””

Meet S. R. Karfelt, author of “Nobody Told Me: Love in the Time of Dementia”

By S. R. Karfelt

Writing about memory loss wasn’t something I’d planned to do. I’m a fiction writer. But when my mother-in-law could no longer live on her own she moved in with me and my husband, her son. Continue reading “Meet S. R. Karfelt, author of “Nobody Told Me: Love in the Time of Dementia””

Meet Crissi Langwell, author of “Come Here, Cupcake,” a novel

 By Crissi Langwell

Come Here CupcakeThe story of Come Here, Cupcake focuses on an aspiring baker, Morgan Truly, and the magical ability she’s discovered that allows her to infuse her baking with feelings. If she feels sad while baking, anyone who eats it will feel sad. If she feels happy, her baking will make people feel happy. And if she bakes while feeling romantic…well, you can guess what happens to anyone who tries it. This new ability, along with finding new love, is confusing enough. But adding to Morgan’s life changes is caring for her mother, Karen Truly, who is suffering from Alzheimer’s. Continue reading “Meet Crissi Langwell, author of “Come Here, Cupcake,” a novel”

Meet Irene Frances Olson author of “Requiem for the Status Quo”

Requiem for the status quo eimageMy name is Irene Frances Olson, and I survived being an Alzheimer’s caregiver for family members…twice.

My father, Don Patrick Desonier, to whom my novel Requiem for the Status Quo was dedicated, was the first such family member. Continue reading “Meet Irene Frances Olson author of “Requiem for the Status Quo””

Meet author and blogger, Wendy Mitchell

By Wendy Mitchell

Wendy Mitchell at her home in York. 2015

Imagine yourself being given a diagnosis of Young Onset Dementia. Your life falls apart, you feel worthless, and of no use to anyone any more. Services are nonexistent, so you feel abandoned. Continue reading “Meet author and blogger, Wendy Mitchell”

Meet Dr. Don Wendorf, author of “Caregiver Carols”

Caregiver Carols front coverBy Don Wendorf

I wrote CAREGIVER CAROLS: A Musical, Emotional Memoir to cope with my own emotional struggles as a caregiver for my late wife Susan with her strokes and vascular dementia and to help other caregivers deal with their feelings. I wanted them to see that their emotions, while often complex, intense or unpleasant were normal; to know they were not alone, while encouraging them to ask for even more help than they thought they needed; and to suggest very practical things for them to try to manage their feelings better.

Meet Richard L. Morgan, PhD

Listening to the needs of caregivers as a facilitator of Alzheimer’s support groups for many years, I became aware that care giving and receiving are opportunities for mutual spiritual growth.

Morgan cover 1Collaborating with gerontologist, Jane Thibault, Ph.D., we wrote, No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia. It is our belief that caregivers have two basic needs: affirmation that caregiving is not in vain, and reassurance that the lives of those for whom they care are not being lived in vain. We also believe that care receivers need more than medical attention; they need tender care, involvement in the community, and a sense of connection with a loving God. Continue reading “Meet Richard L. Morgan, PhD”

Trip to Florida, Part II, An Amazing Author Connection

Ann, tears in my eyes reading this…what a lovely time we had…

Fields of Grace

(This is a four-part series. Click here to read Part I.)

Once I made the decision to go to Florida, I felt a magnetic pull through the next several weeks of preparations. Jean Lee of AlzAuthors stayed in touch and shared details about flying, car rentals, the weather in Naples and what to expect.

I had originally planned to fly in and out of the Fort Lauderdale airport because it was inexpensive. But something niggled at me. A few weeks before the trip, I learned that my daughter had a basketball game the night I was planning to leave. I thought about my flight to Fort Lauderdale, and how I would be arriving at night. I could either stay in a hotel near the airport or drive across Alligator Alley, a desolate stretch of highway late at night.

I looked online and found an inexpensive flight to Fort Myers…

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Meet Lynda Everman, editor of “Seasons of Caregiving: Meditations for Alzheimer’s and Dementia Caregivers”

 

unnamedBy Lynda Everman

“To all of you, I repeat: Do not let yourselves be robbed of hope! Do not let yourselves be robbed of hope! And not only that, but I say to us all: let us not rob others of hope, let us become bearers of hope!” – Pope Francis

I really can’t tell the story of our book, “Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers” without first telling the story of ClergyAgainstAlzheimer’s and the Faith United Against Alzheimer’s Coalition, as they are the result of the following loosely connected series of events. Continue reading “Meet Lynda Everman, editor of “Seasons of Caregiving: Meditations for Alzheimer’s and Dementia Caregivers””