DIARY OF A FIERCE WOMAN 10/21/2026 NEUROLOGISTS
All told, I saw four different neurologists for my cognitive impairment. The first in 2019 who ordered the first neurocognitive exam. The second in 2024 who ordered the second neurocognitive exam. Back to the first neurologist who told me I didn’t have dementia, my brain just thinks I do, and there was no point in seeing me again. Back to the second neurologist who then ordered a PET scan. She referred me to a third neurologist at Seattle Women’s Brain Health and then finally the last neurologist at the same practice, but who specializes in neurology and psychiatry.
Each doctor didn’t doubt what I was saying. They agreed SOMETHING was going on but didn’t know what was happening because I wasn’t a typical case. I had memory loss which tends to appear later in FTD but the ECT and psych meds I take likely influenced that as well. I could pass the in-office cognitive assessments. (Through a support group I learned this is common with FTD.) Scared of the lack of a consistent diagnosis, I reached out to the second neurologist:
To Kathleen Brown Neurology ARNP: I have an appointment with you Thursday. Thank you so much for reaching out on your vacation. I've been really scared trying to figure out what I'm dealing with. The PET scan seems to say the same thing as the neuropsychologist's assessment. Do you doubt the FTD diagnosis? I know I don't fit the picture but is that because I'm an outlier or is that not the correct diagnosis - at which point I would like to know what the correct diagnosis is. I'm getting steadily worse. My wife and best friend are noticing behavioral changes. What is likely to happen? Will I get worse or plateau? The PET scan said it was "moderate". Is it still safe to drive? I got cleared to drive locally. We can talk more Thursday but I'm really scared and confused so any information you can provide is appreciated. Dr Google is only so helpful.
Kathleen Brown response: Hi Jasmine, Your PET scan showed evidence of frontotemporal dysfunction, which would correlate with a diagnosis of FTD. These scans are not diagnostic, but as delineated, can be highly suggestive. There are currently no medications approved for treatment of FTD as we have discussed, and management is centered around Speech therapy which you have participated in, as well as healthy dietary habits and regular exercise. I know you have an upcoming appointment with Swedish Neurology in September, but I would be happy to see you prior to this for more discussion if you would like. Please let me know. ~ Kathleen
I appreciated her willingness to work with me but frustrated there were no answers. Four doctors and no one could tell me definitively what was going on. For a while, I stopped turning to doctors. If I did have some form of dementia – especially frontotemporal dementia (FTD) – I would continue to get worse. At some point there would be no denying it – a state I’m approaching rapidly. I knew there was something wrong. I knew I was getting worse. I didn’t need to spend money on doctors just so they could watch what was happening. I decided there was no point in seeing any doctor beyond my primary care provider. She could monitor me. I decided to stop all life-extending medications. She wanted to start me on cholesterol medication, but I refused. I kept taking my thyroid medications because that would affect my quality of life.
I still seek answers. My decision to stop doctors alternating with an obsessive need to understand what was happening. I send MyChart messages to doctors weekly, I ask ChatGPT questions daily about my PET scan results, my symptoms, and any prognosis that might fit. I used AARP’s Staying Sharp assessments. My recognition memory tested around 20%, sustained attention 60%, working memory 40%, processing speed 35%, cognitive flexibility 50% with assessments made over the course of a year. I didn’t see a significant drop but even my higher scores were lower than most of my life. I generally test around the 97th percentile on cognitive assessments so seeing a substantial drop seemed significant to me.
I watch these medical shows where the doctor doesn’t stop until they find answers. My doctors dismiss me and send me on my way. I alternate between accepting what is happening to me with needing answers before I can move on. Diagnosis or not, I’m not getting better. I’ve developed swallowing difficulties which can lead to aspiration pneumonia – one of the leading causes of death for people with FTD. I struggle to swallow food, and my unconscious swallowing is hampered. I choke on saliva. There are times I “forget” how to swallow. I’ll go to swallow a pill or take a bite and the muscles don’t move. It takes several seconds for the reflex to step up. Apathy alternates with rage as the areas of my brain that control inhibition is impaired. I’m watching my world come crashing down around me. My wife and I have booked an Alaskan cruise and I’m trying to arrange a family vacation for August. I’m asking God for one more year, scared I won’t make it. I’m working on a bucket list. I’m trying to do what’s important to me and to make positive memories while I still can.
I hope you find this journey interesting and if you find my writing thought provoking, consider subscribing to my blog on Substack: https://jasmineraysymms.substack.com/
All previous posts are available on Substack and my website.
Photo by Hush Naidoo Jade Photography on Unsplash
Comments