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. 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 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.

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 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:

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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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.”

What town are you in?”

“I don’t know.”

“Well, where are you now?”

“I’m in a phone booth!” she replied in an angry voice. (Phone booths still existed then.)

Was my mother with a tour group? Did she have enough money? When would she be home? I didn’t have a chance to ask these questions because Mom blurted, “But I can’t talk to you now because the boat is going down the Colorado.” Then she hung up.

I stood in the kitchen, with the phone in my hand, and started laughing. Always interested in the world, I pictured Mom in a pith helmet, clad in waterproof gear, sitting in an inflatable boat with tourists, and shooting over rapids. Minutes later my laughter turned to tears. During our regular phone calls I realized the intelligent, dependable, funny mother of my childhood had become a different person—confused, impatient, and angry.

On the morning of my father’s funeral Mom had suffered a mini stroke. The strokes continued in Florida. When she was found wandering in a Sears store (Mom was looking for her car), I moved her to my hometown, Rochester, Minnesota. I found an apartment for her in an assisted living community. Mom was quite happy there, but, as the years passed, her dementia worsened. According to her doctor, Mom’s mini strokes added up to Alzheimer’s.

He didn’t order cognitive tests for her because, as he noted, “We already know the results.” Cell-by-cell, my mother was dying right before my eyes. Witnessing her decline was heartbreaking. I felt like a black cloud followed me everywhere I went. A friend of mine, who is a certified grief counselor, asked how I was feeling. I told her I was stressed and exhausted. “You’re going through anticipatory grief, and it’s very powerful,” she explained.

Her comment led to my research on anticipatory grief, and my research continues to this day. What is anticipatory grief?

Anticipatory grief is a feeling of loss before a death or dreaded event occurs. Everyone goes through anticipatory grief, yet many have never heard the term. I decided to write a book on the topic and worked on it for a dozen years. I sent the outline, along with a cover letter, to my New York City publisher, and waited anxiously for a reply. Nothing. Finally, I called the acquisitions editor. Yes, she had read my letter and outline. “I don’t get it,” the editor said. “I just don’t get it.”

From the sound of her voice, I could tell the editor was young and hadn’t experienced anticipatory grief yet. There was no way I could make her “get it.” Still, the editor gave me some smart advice: get a medical co-author. I followed her advice and contacted Dr. Lois Krahn, a Mayo Clinic psychiatrist who lived in my neighborhood. Dr. Krahn was willing to read the manuscript, vet the contents, and contribute to it.

With patience and skill, Dr. Krahn wove her points into the existing manuscript. We tried to find a publisher, but struck out. The traditional publishers weren’t interested in grief, so we turned to CreateSpace, Amazon’s publishing company. After the book was released Dr. Krahn called me. She said she hadn’t thought about anticipatory grief before working on the book. “Now I realize it walks into my office every day.”

Anticipatory grief may have walked into your life. Smiling Through Your Tears may be just the help you need. It focuses on anticipatory grief’s uniqueness, grief of terrorism, anticipatory grief as a reaction to change, factors that shape this grief, symptoms and stages, responses to anticipatory grief, complications, coping tips, and how early grief may help you. Each chapter ends with Healing Steps you may take.

Amazon reviews of the book are rewarding:

  • A life changing book.
  • Anticipatory grief is very hard. Good guide to get through it.
  • They have provided a guide for the emotional dynamic and healing path to wholeness.
  • Very good book about a painful subject.
  • If you are a long term caregiver, as I am, this book is a must.

You don’t have to go through anticipatory grief alone. Smiling Through Your Tears may serve as your guide and companion. Most important, it can lead you to the future. I give workshops about this form of grief. At the end of a workshop an audience member thanked me for doing it. “I didn’t know what was happening to me,” she admitted. “Now I know and can give it a name.”

harriethodgson2014-websize-squareWriteLife   http://writelife.com/product/the-family-caregivers-series/

Amazon https://amazon.com/Family-Caregivers-Guide-Harriet-Hodgson/

Twitter https://twitter.com/healthmn1

Facebook   https://www.facebook.com/harriet.hodgson.7

Linked In   https://www.linkedin.com/pub/dir/harriethodgson

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Contributing writer www.thecaregiverspace.org/authors/hhodgson

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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.

That same husband and son had to go work in Asia soon after she arrived, leaving me alone with Gummy for a short but difficult while. His parting words were, “Do whatever it takes to survive it.”

What do writers do to survive? They write.

Even then I didn’t plan to write a book. I had my next fiction book lined up. My grand plan was to get Gummy settled, on medication, and used to her life here. Then I’d get back to writing. I’d blocked off a couple months to accomplish this.

Is it even possible to get someone used to losing their memory? I was so young and naïve last year. Gummy couldn’t remember where she was or why. She packed to go and asked questions non-stop until she’d drop from exhaustion, and later wake up panicked and deep into sundowning in the middle of the night.

At some point I wrote a desperate post on Facebook. The tsunami of support that came from others who were going through the same thing, or had, surprised me. It helped knowing I wasn’t alone. I continued writing about Gummy privately. Eventually I told my publisher the expected book wasn’t going to happen. I could barely take the time to go into the bathroom alone, let alone write.

Saffi? Saffi? Where’d you go?

     I’m in the shower, Gummy! I’ll be right out!

Hello? Is anybody here?

My publisher is the first one who said, “Why don’t you put those Facebook posts into a manuscript and see if you can turn it into a book?”

It makes me laugh now to remember my thoughts then. Wow. I could do that. I’ll just whip out a little memoir, and fulfil my publishing obligation in no time. That won’t be too hard. Talk about naïve. I rewrote that book eighteen times before it even went to the editor. Then there were another ten revisions with her. I cried over that book, and occasionally laughed like a lunatic.

Trying to help Gummy during the day and then write about it at night was an emotional bloodbath. Pawing through my memories of us and laying them bare for the world made this the hardest thing I’ve ever written.

Gummy is one of my favorite people. I adore her. As I say in the book, I’ve been married to her son for eighty billion years. I know her. She knows me. Even now, as bad as the disease has progressed, I cannot look her in the eye and lie. She knows. Over the years we’ve had little in common but our dry humor and stubbornness, and that is the one thing that hasn’t changed. That’s why it took so long to write.

By the time I began writing the book, Gummy had gone into a local memory care facility. Then I turned my focus and time into helping her get comfortable there. At night I wrote and rewrote that book until I found hope and humor in this godawful situation. It may have taken a few years off my life, but I found it.

* * *

Update: The humor Gummy and I shared feels like it went with her because she died at Thanksgiving. Her ending came abruptly. A UTI took her down a notch and she quickly lost the ability to swallow and then breathe. It was the worst of times and the echo of it is still very fresh. I remind myself that we were lucky to have had such a good-natured soul in our lives, lucky the very worst didn’t drag on, lucky the disease (Alzheimer’s and vascular dementia they say) didn’t make her mean. I almost believe me.

Now my hope lies in the future and a cure for everyone else’s Gummy.

About the Author

An entrepreneur, wife, mother, and novelist, S.R. Karfelt helps care for her mother-in-law, Gummy. S.R. authored a memoir about their relationship, for better or worse—a daughter-in-law’s journey, it’s entitled NOBODY TOLD ME: love in the time of dementia.

Amazon: Nobody Told Me: Love in the Time of Dementia

Website: http://www.srkarfelt.com/

Blog: http://www.theglitterglobe.com/

Twitter: @SRKarfelt

Instagram: srkarfelt

Google+: S.R. Karfelt

Pinterest: S.R. Karfelt

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

email: Author@SRKarfelt.com

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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 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. The second family member was my sister-in-law, who was diagnosed with mixed dementia just one month after my father’s death in 2007. My brother was an extraordinary caregiver for his wife; I was just the go-to person for advice, direction, and the occasional caregiving day. I guess having been front and center on my father’s three-year Alzheimer’s path gave me an “edge” on experience. Continue reading

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

That’s what happened to me in July 2014, when I was diagnosed with young onset dementia at the age of 58, and still working full-time in the NHS. I retired at the age of 59, due to ill health, thinking there was no alternative. Then I sat waiting for services to kick in, but, of course, nothing happened. There were no services.

I could have given up and gone into a deep state of depression, but I knew there must be more. We all had talents before a diagnosis of dementia; we don’t suddenly lose all those talents overnight when we get a diagnosis.

Opportunities started to come my way, first with research. That was once I’d gotten over the barrier of health care professionals thinking it was their right to deny me the option. Taking part in research gives me hope and I need hope. I could be helping create a better future for my daughters, so taking part in research was a no-brainer for me. Many people, when they hear the word ‘research’ have an image of men in white coats handing out dodgy drugs. That couldn’t be further from the truth. Social and technological research is equally important while we await that elusive cure. I’ve taken part in drugs trials, but also social research to find the best ways to live with dementia and care for those no longer able to care for themselves. I’ve tested apps, I’ve commented on web sites. Yes, me a person with dementia. After all, how do the so-called ‘experts’ know they’re getting it right if they don’t ask the real experts – those of us living with dementia now?

My blog, whichmeamitoday.wordpress.com is for me, simply “my memory.” I couldn’t tell you what I did yesterday unless I read my blog. That other people all over the world choose to read it is humbling, plus it’s enabled me to raise awareness. All I’m doing in my own little way is to show others what can be achieved and not to give up. I also hope it will help others look at dementia differently.

Oh, and I’ve just finished writing my book, Somebody I Used to Know, which is due out in the UK in the New Year and America in May, along with a little “firewalking” in October for my local Hospice.

So, as you can see, I’m a great believer in concentrating on what I still CAN do and not dwelling on the issues that dementia throws at me.

About the Author

I was diagnosed with Young Onset Dementia on the 31st July 2014 at the age of 58 years young. I might not have much of a short-term memory, but that’s one date I’ll never forget.

I have two daughters and live happily in Yorkshire.

Website/Blog: www.whichmeamitoday.wordpress.com

Twitter:  @WendyPMitchell

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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. Continue reading

Meet Richard L. Morgan, PhD

Morgan cover 1

By 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.

Collaborating 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 Continue reading

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

By 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

“The Beach Poems” by Ann Campanella

CvrBeachPoems_AdExpressing the Inexpressible through Poetry

By Ann Campanella

When I was in my early thirties, my mother began showing signs of Alzheimer’s. She was 41 when I was born, so I suppose it shouldn’t have been a shock to see her aging in this way. But it was.

I always knew she was an “older mom.” She had been a fount of wisdom for me during my adolescence and early years of marriage. Continue reading