Brian Kursonis and Early-Onset Alzheimer’s, Part II: From Depression to Action

In Part I, Brian faced the devastating diagnosis of early-onset Alzheimer’s. To read about it, click here.

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

To read Part I: A Devastating Diagnosis, click here.

Connect with Brian through his social media:

Websites: withALZmyHEART and Faith2Care

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

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

Twitter: https://twitter.com/WithAlzMyHeart

 

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Brian Kursonis and Early-Onset Alzheimers, Part I: A Devastating Diagnosis

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:

Websites: withALZmyHEART and Faith2Care

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

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

Twitter: https://twitter.com/WithAlzMyHeart


AlzAuthors eBook Sale Begins Today!

I’m so excited to announced the AlzAuthors eBook Sale that starts today! You can find lots of great memoirs, fictional stories, caregiving guides, etc. at fantastic prices!

The Kindle version of Motherhood: Lost and Found will be available at its lowest price: 99 cents! starting at 11 a.m. Eastern Standard Time. And, as a special bonus, you can get the audiobook for only $7.49 (a discount of almost 70 percent) if you purchase the eBook.

Click here to go to the sale! It lasts through Saturday, Sept. 30th, the last day of World Alzheimer’s Month.

Happy reading!


Receiving Gifts and Letting Go

As part of “Transformational Tuesday,” I am blogging with Divine Phoenix Books today.

This time of year always makes me pause. I want to hang onto the beauty of Indian Summer days, yet I feel the urgency of the falling leaves pressing me forward. September is World Alzheimer’s Month, and I’m reminded of the years my mother struggled through Alzheimer’s at the same time I was yearning to become a mother.

To read the rest of the post, click here: divinephoenixbooks.com.

http://www.divinephoenixbooks.com/receiving-gifts-and-letting-go/


World Alzheimer’s Day and the Gifts of September

This time of year has always been special to me. Typically in the Carolinas, on the first day of fall the summer heat begins to ease and we get a hint of the cooler weather that is to come.

World Alzheimer’s Day and my birthday happen to fall side by side, which somehow seems appropriate.

Tomorrow is my birthday. For the past 16 years, I’ve also had the joy of celebrating with Sydney. Motherhood for me arrived three days before my 41st birthday. My daughter couldn’t have been more welcome, especially as she was delivered in the midst of my own mother’s long descent into Alzheimer’s.

Me, Sydney and my mom.

The years before Sydney was born were tough and filled with loss. I had a series of miscarriages and every day my mother seemed to lose more of herself. There were times I forgot how to hope, which is one of the reasons I feel compelled to reach out to those who are traveling their own difficult path of caring for someone they love.

But grief passes…like the seasons.

I didn’t know that after close to a decade of infertility, I would be blessed with a beautiful daughter.

I didn’t know that six years after my mother passed away, my memoir would be released.

I didn’t know that last year, on my birthday, the eBook of Motherhood: Lost and Found would be distributed internationally by Divine Phoenix and Pegasus Books.

I didn’t know that my audiobook would come out on the day of the Kentucky Derby (this past May) where years ago Secretariat, the grandfather of my beloved horse Crimson, won the first leg of his Triple Crown.

Me with Crimson.

There was so much I didn’t know.

This September, I’m honored to be working with a group of passionate and generous women who have created AlzAuthors, a blogsite with over 100 resources for people living with Alzheimer’s and dementia.

Next week, as World Alzheimer’s Month comes to a close, AlzAuthors will be holding an eBook sale from September 27th – 30th to honor those who are living with this disease.

In memory of my sweet Mom, the eBook of Motherhood: Lost and Found will be available at its lowest price on Wednesday, Sept. 27th, and deeply discounted through Sept. 30th.

As a special package, if you buy the eBook, the audiobook is available for only $7.49, instead of $21.95, a discount of almost 70 percent.

Last, but not least, my publisher is offering a drawing for a free audiobook on Twitter. To enter, follow Laura Ponticello https://twitter.com/lauraslist and Ann Campanella https://twitter.com/authorAnnC on Twitter and follow Laura’s instructions.

I like to think of Motherhood: Lost and Found as my love letter to those who are dealing with grief. Without support, it’s a lonely road.

Please feel free to share this post with anyone who is in a season of caretaking. Sending out prayers of hope to all.

My mom, Sydney and me on my birthday 15 years ago.


Finding Hope in the World of Alzheimer’s

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.

The Author’s Corner

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.

There was a heaviness inside as I cared for my mother.

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.

It was so inspiring to talk with Brian and Mary Ann.

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.

 


After the Eclipse

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.