My Dementia Diagnosis: A Personal Story of Early-Onset CTE

For this article, we interviewed Steven Barbieri. Steven is an AlzheimersDisease.net community member who is sharing what it is like to be diagnosed with early-onset dementia, specifically chronic traumatic encephalopathy (CTE) dementia, at age 51. Steven was 60 at the time of this interview.

What ultimately led me to a neurologist

Steven: I used to have problems with my wife, Tracy. We used to fight from time to time over things. These fights seemed to all revolve around her telling me something and me not doing it. Sounds like a normal husband, right?

My wife, Tracy, was a schoolteacher. One morning, she asked me if I would be in town for work and if I could pick up our girls from school. Well, later that afternoon, she got a call from the school. The girls had not been picked up.

Tracy called me, very upset. I told her I was in Fresno for a meeting and there was no way I could pick them up. We fought about the fact that we had talked about it that morning. She asked why I didn't tell her I was going to Fresno. Of course, my answer was, "You never asked me to pick up the girls from school."

Tracy was fed up with all the misunderstandings we were having and said she was going to have my hearing tested. During the hearing test, I kept asking the person to repeat what they wanted me to do. I was acting very slowly to follow the directions. Because of these symptoms, the doctor referred me back to my doctor, recommending that I see a neurologist.

Steven and his wife Tracy, along with their 3 children: Grace, Brittany, and Steven.

My dementia evolution: Mild cognitive impairment to CTE

Editorial team: How has your life changed since your dementia diagnosis?

Steven: I was first diagnosed with mild cognitive impairment (MCI), then pseudodementia. Later, after a PET scan, where they found damage in my frontal temporal lobe, it was changed to frontotemporal dementia (FTD).

Finally, I was sent for an 8-hour test. Someone asked about my lifestyle – what I like and dislike, and what I do for fun. I have 40-plus years of old-school martial arts and several head injuries. Someone finally knew me. My diagnosis was changed to probable chronic traumatic encephalopathy (CTE) dementia.

Finding support after a dementia diagnosis

Editorial team: Do you experience stigma when you tell people about your dementia diagnosis?

Steven: Yes, I experience stigma when I tell people about my condition. They say, "I have memory problems, too," or, "That happens to me all the time."

Editorial team: Do you feel well supported by your doctors and family?

Steven: I didn't feel supported by my doctor at first because she was just saying I had dementia. I was not informed enough to ask what type of dementia I had until I did some of my own research. It's important to ask what type of dementia you have; they are not all the same.

What others should know about living with dementia

Editorial team: What do you want other people diagnosed with dementia to know?

Steven: There is life after a diagnosis. Quality of life is still very important. Don't put your life on hold. I hit the fast-forward button. The best time to do something for me is NOW. Get busy living or get busy dying.

Still do what you love. Maybe make some changes, but still enjoy what you love to do. It's just a change of life, not the end of life. Don't stop, just adjust.

Editorial team: What should caregivers know?

Steven: That I am still here. Don't make decisions without me. ASK ME!

Editorial team: Is there anything that you would like to add?

Steven: Yes, I have dementia, but dementia doesn't have ME. This is just my new normal. Read and educate yourself about your type of dementia so you know what to expect and what questions to ask your doctor.

Write down your questions before your doctor's appointments. Make sure all of your questions are answered before you leave. Share your story with others, and remember to ask them about their story, too. Sad to say, but most people have a story to share about the dementia of a family member or close friend.

Steven uses the hashtag #LivingStrongWithDementia on social media.