DIARY OF A FIERCE WOMAN 10/17/2026 SECOND NEUROCOGNITIVE ASSESSMENT

In 2024 I underwent a second neurocognitive assessment to assess the mental struggles I was experiencing. I was concerned after worsening the last few years following a Mild Cognitive Impairment diagnosis in 2019. It was the same process I had gone through five years before. The test was harder than I remembered but I thought I was fine. When we got to the results appointment, I wasn’t overly concerned. I didn’t know my world was about to tip.

At the appointment to review the results, the neuropsychologist dropped the bomb: I had Major Neurocognitive Disorder/Frontotemporal Dysfunction. She thought I had dementia, (FTD). She told me to apply for disability. She wanted me to see a neurologist to discuss the diagnosis, but she wanted me to see the original neurologist that had seen me in 2019 instead of the doctor who had ordered the second assessment. I was told the original neurologist was one of the best in the state.

 So, I made the appointment. She was booked out and since it had been years since I’d seen her, I had to wait for a new patient appointment. Fortunately, I only had to wait two months. Two months of worrying. Two months of fearing the worst. The fear was debilitating. What would I do with this information? What would she say?

It was hard waiting but finally, the day arrived. I had my wife come with me. That’s what you’re supposed to do when you have dementia, right? So, we sat together, waiting to see what this doctor would say. She came in, looked over the doctor’s notes and said, “You don’t have dementia, your brain just thinks you do.” Then she said the surprising words, “I don’t need to see you again.”

I was stunned. The neuropsychologist was clear. My brain was impaired. I had worsened considerably over the last few years. Something was very wrong. But I took those three-minute cognitive assessments in the neurologists’ office and I passed. They were challenging but I passed. I went back to the neurologist who had ordered the second neurocognitive exam scared. Something was wrong. I didn’t know what was happening to me. She agreed to more testing and ordered a PET scan.

I went to the hospital for the exam scared out of my mind, wondering what it would show. I sat in the waiting room scared. I was called back scared. I was given an injection of a radioactive tracer into my vein. The tracer traveled through my bloodstream and was absorbed by my brain. I sat quietly for 30 minutes, not moving, as that would affect where the tracer went. It was boring but not troublesome. Then I lay down on the table that slid into a donut shaped scanner (similar to a CT machine). Again, I lay very still so the images weren’t blurry. It didn’t take long. Waiting for the results was the hardest part.

The results came back. It also showed frontotemporal dysfunction. I emailed my cousin who is a doctor and asked him. Yes, I was reading the results correctly. The neuropsych exam showed frontotemporal dysfunction. The PET scan showed frontotemporal dysfunction. My behavior showed frontotemporal dysfunction. I didn’t understand why it was under debate.

Partly, I believe it was because I didn’t fit the mold. Frontotemporal dementia causes personality changes more than memory loss while my memory loss is more prominent. I suspect it was a combination of the ECT and psych meds that were also in play, exacerbating the memory loss. I was also able to pass those in-office tests, but when I joined an FTD support group, I learned that was common.

I had multiple instances of disinhibited behavior. I blew up at church! Once in a meeting with two other board chairs. We were working on the merger of our two churches: Morning Star Lutheran Church and Monroe United Methodist Church. One minute we were having a conversation and the next I was storming out of the room, getting in my car and driving away. My friend, one of the chairs, said she had never seen me act that way. She was right. I don’t blow up at people. Especially not at church.

In another instance, I disagreed with the pastor and worship leader because I wanted to have the women in our congregation wear hats to advertise an upcoming tea and was told I couldn’t. I got so angry I was shaking. I threatened to leave the church. I told the pastor they could stop me from making an announcement, but they couldn’t tell me I couldn’t wear a hat! It wasn’t that I was in the wrong in these situations, just that my reaction was way out of proportion. The behavior was so out of character I worried about other situations that could arise. We were just starting a children’s ministry at our church, and I was terrified of acting out with the kids. Instead of being a Children’s Sunday School teacher, I’m a runner. Children’s Church lasts from the passing of the peace at the beginning of the service until the kids return in time for communion. My job as runner is to text the teacher before prayers with a first warning and then a final warning before the offering – the last thing we do before communion. I get confused sometimes about when to text, but we manage.

The scariest outburst was when I was talking to my wife about pet insurance. Such an innocent conversation. She was asking me questions, and I just couldn’t understand them. I got so angry I shoved my laptop away from me nearly hitting her in the head. She calmly said, “don’t throw the computer at my head.” It would take a trigger to set me off but then I exploded, unable to control my emotions.

But the doctors said it wasn’t frontotemporal dementia. The PET scan ruled out Alzheimer’s and Lewey Body Dementia. I didn’t understand. I told the neurologist I was scared. There was something going on. She referred me to a women’s brain health specialist in Seattle. It took nine months to get an appointment. So, I waited, scared, worried, frustrated.

It made me think of a train. I’m standing, staring at the train tracks. I can just make out the outline of a train coming toward me – slow but imposing. I’m confined to the train tracks, unable to move. I have no control over the train and no one can help me. No one can tell me how to stop the train even when I’ve begged. It’s coming. It won’t be stopped. It won’t be diverted. I just have to wait for it to hit me. There are no brakes on the train. I can’t simply get off the tracks. It will destroy me and there’s nothing I can do about it.

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Photo by Marissa Beletti on Unsplash