In the fall of 2022, I began to feel like my brain was starting to heal. I still had some cognitive limitations, including memory, language, balance, and executive function issues. However, I was clearly doing better. I knew and understood my limitations, and I had developed strategies and coping mechanisms. I had become mindful about sleep, diet, exercise, and stress management. I was intentional about trying to learn new things and get enough social interaction. I was reading again and had let go of my need to remember what I had read. I was still curious, open, and honest about my disease. In short, I had come to understand how I had to live, and if I stayed in my lane, I could manage a life interrupted by dementia.

While I was thriving and flourishing, I was confused. Did I still have Frontotemporal Degeneration? Had I been misdiagnosed? Had I arrested and reversed my disease? I needed to know.

My neurologist was retiring from clinical practice and referred me to his successor. I made an appointment to see him. He was gracious and receptive. For nearly one and a half hours, he listened as Emily and I shared our journey of the last six years. After asking thoughtful questions and doing some basic neuro-psych tests, he suggested a new brain scan. I agreed. The doctor reviewed the scan with us and said that my disease had apparently stopped progressing. He had compared earlier scans with the new ones and could see very little difference. He said there was deterioration, but it hadn’t continued as FTD generally does.

He then asked about what happened just before I started noticing my cognitive decline. Had I been sick or hit my head in a fall or accident? I told him that I had, in fact, been very ill in the winter of 2016. I had an extremely high fever, a severe headache, and neck pain for several days. Finally, I called my internist, who said, “Tracey, I think you might have meningitis. You need to get to the hospital right away.” I went to the hospital and was tested for meningitis. It was negative, but my symptoms persisted, so I was admitted and treated for what they thought was “community-acquired viral pneumonia.”

Upon hearing this story, the neurologist paused and said something like, “Thanks to Covid, we’ve learned a lot about viral infection and brain health. Here’s what I think might have happened. While we can’t be certain, you might have had an ‘acute, prolonged, post-infectious encephalitis’ caused by the virus and fever you acquired in the winter of 2016. It had all of the characteristics and symptoms of FTD. Thus, the doctors diagnosed it to the best of their ability. However, FTD is progressive, and since you are no longer progressing, but in fact, are now getting better, you might not have FTD.” He continued. “There is clearly damage to your brain, which has resulted in some cognitive decline, but you’re doing really well. Furthermore, you’ve done everything that we recommend and more to slow and reverse the progress of dementia. Maybe it’s working.”

I think it is working. Two years later, I’m convinced that my brain is even better. And others have seen the change. Call it a remission, a healing, or a misdiagnosis – I don’t really care. I’m profoundly grateful for this new chapter and intend to fully claim its blessings.