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‘I’m 55, I’m healthy and I’m articulate’ – and have Alzheimer’s disease

‘I’m 55, I’m healthy and I’m articulate’ – and have Alzheimer’s disease
Brian Kursonis plays with his three dogs on his back porch at his home in Charlotte, NC. He says that being a caregiver for his dogs brings him lots of joy and prevents him from laying around all day. (Dillon Deaton / Los Angeles Times)

A lot of people don't believe I have Alzheimer's. I'm 55, I'm healthy and I'm articulate. But I fight dementia every day.

I was diagnosed with early-onset Alzheimer's in May of 2016. Before that, I was an analyst at a company that manages retirement plans. My boss had called me in to say that my work had been slipping. My cubicle was covered with Post-it notes. I was masking my problems, but I couldn't keep up.

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I can feel my brain deteriorating. It's getting worse week by week. If you asked me what I did three hours ago, I couldn't tell you. I blank out all the time. I smell chemicals that aren't there. My vision is dimming. I can't focus or concentrate. I get angry easier than I used to.

I have to go out to the car four times before I have everything I need. I thought it would be a good idea to put a list of reminders on the door to the garage, but I keep forgetting to make the list. I put a magnet on the door but that's as far as I got.

I live with my fiancee, my two daughters and my two dogs in Raleigh, N.C. My fiancée and I have been together a long time, since before the diagnosis. She's been through every stage of grief. We've had a lot of heart-to-hearts that lead to tears.

Many people lose everything financially because of this disease. I don't want that to happen to her. I told her that when the time comes, I want to go off on my own so she won't have to take care of me. I'll exit stage left.

I can feel my brain deteriorating. It’s getting worse week by week.


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Brian Kursonis browses on his computer at his kitchen table where he runs his website, WithALZmyheart.com. Kursonis was diagnosed with early onset Alzheimer's disease at the age of 55.
Brian Kursonis browses on his computer at his kitchen table where he runs his website, WithALZmyheart.com. Kursonis was diagnosed with early onset Alzheimer's disease at the age of 55. (Dillon Deaton / Los Angeles Times)

When I was diagnosed, I didn't know anything about dementia. It was a surreal thing to hear. Now I'm committed to spreading awareness. I share my story on my blog, WithAlzmyheart.com. And I just went to Washington, D.C., to advocate for the Alzheimer's Assn. I got to talk with a senator and a congressman face-to-face. They were so polite and kind, but I was too muddled to say much.

When I went to D.C., I had to be honest with my fiancee. I told her: You are going to be out of sight, out of mind. Don't expect any phone calls or texts because I won't remember you exist. I did call her once. That's because I saw her face while I was scrolling through my phone.

I figure I have four or five years left to still be who I am. If it was 10 years, I could look forward to grandchildren. But I can't do that. I'll still be alive in 10 years, but I won't be myself.

I don't use Post-it notes anymore. I'd forget to look at them.

As told to Chris Woolston

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