It gradually dawned on Brian that he had only three of four years ahead of him of being cognitively aware. “I thought back to my counseling days when I had to show people that their perspective was keeping them trapped,” says Brian. “I had accepted the perspective that Alzheimer’s wants to give you: You might as well give up. There’s no cure. No hope. I had swallowed it hook, line and sinker.”
Brian realized he had a choice. He wondered what would make him happy and fulfilled. “The answer for me was helping people,” he says. “When I help someone, I feel good.”
This shift in perspective led Brian to create withALZmyHEART, a website that walks people through a diagnosis of early-onset Alzheimer’s. Brian says there were no blogs about adapting to dementia and mild cognitive impairment, so he went about changing that. He tells his story on the blog, shares a wide variety of advocacy projects he’s involved with and offers a page of helpful links.
Brian understands hardship. Soon after his diagnosis, he not only lost his job and his fiancée, but he had to give up his home and even his dogs. Because of his limited income, he had to move into a small apartment. He’s also no longer able to drive.
But none of this has stopped Brian from helping others. He attends conferences and reaches out through social media to others affected by Alzheimer’s.
“I stumbled into being an advocate,” Brian says. 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, an advertisement promoting Alzheimer’s researchers and patients that runs on multiple 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.
“Because I present well, people don’t know I have Alzheimer’s when they meet me,” says Brian. But, at home, it’s a different story. Brian leaves notes for himself, sets alarms to help him remember appointments and tries to schedule tasks that demand mental alertness early in the day. He explains to reporters that he might interrupt them in the middle of a question, because he doesn’t want to forget an important thought.
To be continued…Part III: Brian’s Biggest Project — Faith2Care
Connect with Brian through his social media:
I had the privilege of meeting Brian at one of my readings. We connected immediately because of our intimate understanding of Alzheimer’s. I am pleased to be able to share his story.
Brian Kursonis was a father with a fiancée, a good job, a home and even beloved dogs when his world came crashing down around him. At the age of 55 he was diagnosed with early-onset Alzheimer’s.
A former counselor, Brian worked for a large financial company as an analyst for retirement accounts. He crunched numbers all day long and spit out reports. Suddenly, he started “blanking out” on the job. Time would go by and he’d have no awareness of what he’d been doing. It was as if he’d gone unconscious.
He thought it might be Vertigo, so he went to a doctor, hoping for a quick fix. His fiancée accompanied him and mentioned in passing that Brian’s memory was terrible. The doctor ran some tests and eventually sent him to a neurologist. This doctor used the word, “dementia.”
“I was stunned beyond stunned,” Brian says. He didn’t think it was possible. “I considered dementia synonymous with senility, and I knew I wasn’t senile.”
With early-onset Alzheimer’s, the diagnosis comes in stages, says Brian. “The first thing they tell you is you have dementia, then mild cognitive impairment, then you learn you have Alzheimer’s or Lewy Bodies,” he says. “The doctors give you a label, but nobody explains anything.”
Initially, Brian kept his prognosis from his family. He knew it would be devastating. And it was.
It changed the dynamics within the family. Brian’s position, which had been head of the household, dropped to the role of “handicapped dad.” His opinions no longer mattered. Eventually, his fiancée left him.
Brian felt himself slipping into a depression. With his counseling background, he recognized the signs. A former runner, he stopped exercising and gained 30 pounds. “My life consisted of sitting in an easy chair and taking care of the dogs,” says Brian.
To be continued…Part II: From Depression to Action Brian explains how he rejected the perspective that Alzheimer’s wanted to give him and began to make an impact as an advocate.
Connect with Brian through his social media:
After attending the Alzheimer’s Association Dementia Education Conference here in Charlotte, I am lit from within with a fire, a desire to make things better, to provide a sense of hope for the sea of people I saw whose faces reminded me of the Sargasso Sea that I rowed on for so many years while caring for my mother who had Alzheimer’s.
Don’t get me wrong. I didn’t start out inspired. In fact, a part of me wanted to curl up and go to sleep, not face a full day of being reminded what it looks and feels like her to care for someone with dementia.
I didn’t want to go back to that emotional place. It was hard and lonely. I didn’t want to think about other people who are facing this pain. I didn’t want to think about my mother, how I had become an orphan in a sense before my time.
It was easier to simply put a lid on all those emotions and hide them somewhere in my heart.
At the conference, I was one of four writers in the Authors’ Corner. I was there to sell my book, offer people the opportunity to win a free Kindle version of Motherhood: Lost and Found, hand out flyers about AlzAuthors (a group of 100 authors who have banded together to provide resources for caregivers in need) and share pieces of my story – how my mother showed signs of Alzheimer’s when I was in my early 30s at the same time I was trying to become a mother.
On the drive to the conference I prayed that God would lift me out of the swamp of my past emotions and use me as a vessel. I had no idea how this would happen. And to be honest, if I had followed my own feelings, I might have stayed in bed.
After all, going to the conference reminded me of my younger self. Twenty years ago, I went to this same conference, looking for help, seeking those who would understand, picking up brochures about places where my mother might one day be cared for. The landscape of caregiving is so different now — much brighter, with so many more options and offerings.
But what I remembered most from that long-ago conference was the sense of heaviness I carried within me. My mother was not the woman I grew up believing she would be, and I had no way of knowing how to move forward in this dusky night we both seemed to be trapped in.
I came away from that day so many years ago wishing that I had a book to share with the other attendees. I had already begun working on mine, but it was nowhere near finished as my mother’s story continued for at least another decade. But, even then I sensed that my story was what I could share with others. It was the thing that might bring help and hope to people who were suffering, even as I was stumbling on my own path.
This year I came to the conference not as an attendee but as an author with boxes of books as my gift. My memoir was skimmed from the 14 years of pain and loss and grief, distilled in such a way that hope and life and light rose to the surface. My faith evolved over that time period. The hardships filed away certain rough edges of my personality. My heart was changed in ways I am grateful for, even though the process was torturous at times.
The 2017 conference brought some special surprises. I ended up sharing a table with a lovely, warm-hearted author and former nurse, Mary Ann Drummond, who has written Meet Me Where I Am, a compassionate guide about caring for those with Alzheimer’s. Her tender approach was exactly what I would have wanted for my mother. I also met Barbara Ivey and Carol Howell, two other wonderful authors who are supporting others through their books.
Midway through the conference, Mary Ann and I were joined by Brian Kursonis, one of the most inspiring people I’ve ever known. Brian is 56 (my age), has early-onset Alzheimer’s and has become an important spokesperson for those dealing with dementia. Intelligent, soft-spoken and self-effacing, Brian is stepping up to the challenge of reaching millions of people in need.
How could I not be encouraged and deeply moved by these amazing individuals?
I wanted to grasp the hands of all the attendees who walked by whose faces were filled with sorrow, squeeze their palms, look into their eyes and say there is more…. There is hope… This is but a moment in time. I see you, but more importantly God sees you and He sees your loved one. It is okay, even good to cry. Your deep sadness is a stamp of your love. You are not alone, even if it feels that way. Each of us here at this conference has a story, each of these stories must be held preciously. Let us share them with one another and watch our burdens grow lighter. If we link hands and spirits, we will find room for hope.
The evening after the eclipse, Sunny and I take a walk. The sky is mostly clear, except for a few dramatic clouds hovering behind the tree line. The horses are grazing as usual, their coats covered in fine sweat that is just beginning to evaporate as the heat and humidity slowly lift. It is 8 o’clock, four hours after the sun and moon finished their dance through the sky.
Joel, Sydney and I went down to the barn and watched the eclipse from there. We did the pinhole through the cardboard trick and used eclipse glasses to take short peeks at the scooped out sun.
Sydney and I let the horses out because they seemed eager to enjoy the grass under a slightly cooler sky. The temperature gradually dropped from 91 to 87°.
At one point I brought a chair and sat in the shade under a tree. I was surrounded by the shapes of crescent moons created by the sun filtering through the leaves.
As the moon covered 97% of the sun I looked and listened for anything that might be a sign. The cicadas continued chanting, a single bird chirped behind me, the horses eagerly cropped grass. Sydney noticed that one of the cows from next door was looking at us and the herd was slowly making its way toward the neighbor’s barn. Maybe the unusual light made them think it was time to come in.
And suddenly the crescent shapes shifted from one side to the other, and the scrim over the sky seemed to lift.
I thought of all the people looking up – friends and family in the mountains, at the beach, in town, in faraway states. For that one moment, we were linked. Held together by a celestial ribbon, an awareness perhaps of the beauty of our sun – its strength and fragility.
When the eclipse was over, I was exhausted and empty, as if a part of me had been scooped out. I hadn’t expected to feel that way. Actually, I hadn’t thought about what would come after. Maybe I was picking up on the collective sigh from our country.
Tonight, I am grateful for the presence of horses grazing in the fields, the dog who walks by my side, my family and friends who share this wide world with me and the glorious colors left behind by the setting sun.
I was recently invited to join the volunteer management team of AlzAuthors, an online site that has gathered resources for people dealing with Alzheimer’s disease and dementia. Currently, AlzAuthors offers information about books (including memoir, fiction, nonfiction and poetry) and blogs written by over 100 authors. Each of these authors was touched by Alzheimer’s or dementia in some way and desires to give back.
AlzAuthors was founded in 2016 when four daughters of dementia (Jean Lee, Vicki Tapia, Shannon Wiersbitzky and Marianne Sciucco) who had written books met over the internet. They formed a friendship and a mission to create a space where caregivers could find support, and authors with stories about Alzheimer’s could connect with an audience in need.
Shannon Wiersbitzky is no longer active, but Kathryn Harrison has stepped in as the group’s Art Director.
The site says: “We share our experiences to bring knowledge, comfort, and understanding to others on this journey.”
I had the privilege of sitting in on a five-way conversation this week with the managers of AlzAuthors. It was inspiring to see how Jean, Marianne, Vicki and Kathryn work together, leaning on each other’s strengths and dedicating themselves to their mission. I was warmly welcomed into the fold and treated with kindness and respect. I’m honored to be joining this big-hearted management team.
My first project is to create and administrate a new Facebook page for AlzAuthors where we can showcase the great books and resources for those living with Alzheimer’s and their caregivers. Take a peek by clicking here and feel free to like and follow! We hope you’ll share this page with anyone who is in need of this kind of support.
Coming soon: “Alzheimer’s Support, Part II: A Window Into Caregiving” where I share some of my own story.
Today we had the vet out for the horses’ annual shots. It was a routine visit, one that snuck up on me as I had scheduled it weeks ago. But what surprised me even more was the emotion that came over me after the visit.
The story actually begins back in the spring. That was when I heard the news that the large animal vet that we usually use was no longer practicing. I was sorry to hear this because he was someone we liked and respected, and (as a horse owner) it’s a big decision to find a new vet.
A few weeks later, I learned that Dr. Bob Gochanauer, a dear friend and wonderful vet, had passed away unexpectedly. My heart ached for his family who used to have a farm just a few miles away from us. Dr. Bob had also been my primary vet for Crimson for 13 years.
Between the time that Crimson passed away and we purchased Foxie for Sydney, Dr. Bob and his family moved further out in the country, about 45 minutes away. He was still practicing, but because of the distance, I had decided to use a closer vet for the sake of convenience.
After our other vet left the practice, I took some time researching vets. I’d heard it said that we had a “shortage of vets” in the area.
I decided to call Dr. Mary, who is Bob’s daughter. Yes, their office was farther away, but something tugged at me.
She and her assistant pulled up to the farm today in their big truck. I hadn’t seen Dr. Mary since she was a kid, when I used to give her riding lessons. Her face held the same open kindness that I remembered. We embraced for a long moment, and I whispered in her ear that I was so sorry about her dad. She nodded and smiled, her eyes filling.
When she entered the barn, I was blown away by how much she reminded me of her dad. Her mannerisms around the horses were spot on. She stood like him; she asked questions; she wasn’t in a rush. He had been an old country vet with gut wisdom about animals and true kindness.
I had forgotten how deeply I felt connected with him when he worked with the horses. Shady tends to get nervous around new experiences, and Dr. Mary helped him through his rotation of shots calmly and beautifully. Then she went on to treat Foxie, who stood quietly in her stall.
Before Dr. Mary left, I gave her a copy of Motherhood: Lost and Found, and told her there was a chapter that included her dad. He had euthanized Little Bit, one of my school horses, and he did it in such a gentle and loving manner that it always chokes me up when I think of it.
I’d been wanting to give her a copy of my memoir for some time, but it was one of those things I hadn’t got around to. (She lived far away, I didn’t know her address, yada yada yada.) She held the book to her chest and her eyes filled with tears. We embraced again, and I cried with her.
Later, with the horses turned out to graze, after their non-eventful vet visit, I found myself still full of emotion, thinking of Dr. Mary – on the road treating horse after horse, today and every day, the way her father did. I am so grateful for the kind of compassion they bring to this world.
I was just chatting with a “friend” on Instagram. We were connecting about our love of animals and nature, and our conversation suddenly took a turn. She told me that her mother’s birthday was tomorrow. I knew that her mother had died and sensed that she felt this loss intensely.
I felt a sudden deep empathy. My mother is gone too, and her birthday was in late June.
My Instagram friend is a writer like I am and her words made me pause. “We never fully stop grieving. It is an ever evolving process, and through writing they live on with us and through nature and animals communicate to us. Never the same, but comforting.”
As a poet and a nature and animal lover, I know this to the core of my soul, though I’m not sure I’ve spoken it out loud. My mother was deeply in tune with nature. I remember her awe over the spectacular winter sunsets on the North Carolina coast, her silent reverence for the beauty of Lake George and its wildlife as we paddled her green canoe, her passion for protecting undeveloped land.
Like nature, she was never in a rush. Mom taught me to appreciate the mountains around the lake and the long stretches of damp sand along the coast. With her eyes, I take in the tall pines that line the bay, and I scan the ocean’s dark grey green waves for the fins of dolphins.
I follow her footsteps as I hike the rocky hills of the Adirondacks. Is it her feet or mine that sink in the sand as I search for shells beside the ocean as the salt air caresses my cheeks?
Each time I walk on the beach or return to my ancestral home in upstate New York, I am soothed by visions of her.
To read more about my mother and her influence on me, order a copy of The Beach Poems, a collection of poetry about the Carolina coast and the crescent of sand we called “the beach” at Lake George in Upstate New York. To receive the pre-publication discount, click here.
Also, check out my friend @meditatingwithanimals on Instagram and learn more about her lovely book here.