Even though I had spent two years trying to find out what was wrong with me, seeing that diagnosis in black and white was a shock.
What it is
Frontotemporal dementia (FTD), as the name implies, is the result of atrophy in the frontal and temporal lobes of the brain. That has effects on personality, memory, language, focus, cognition, executive function, and eventually motor control. There are several different subtypes of FTD
Corticobasal syndrome (CBS) was initially defined as a movement disorder, but is now recognized to result in dementia as well. The first signs are usually a lack of coordination in one of the limbs, which eventually spreads to the other ipsilateral (same side) limb, and then to the other side of the body, and up into the head. The most interesting symptom is “alien limb syndrome” in which one limb, usually the arm takes on its own agenda, and cannot be controlled. Sometimes, it will counteract the actions of the controlled limb, so that you may have your two hands working against each other.
CBS and FTD are caused by a build-up of proteins (usually tau) that aggregate in the cytoplasm of neurons. First it slows down neural transmission and later often kills the neuron.
The end result of either condition is a patient that is immobilized and frequently lacks the ability to communicate. Patients have difficulty swallowing. Death is usually from complications due to immobility, frequently pneumonia. Although the course of disease is variable, on average death occurs about seven years after symptoms appear.
I do not write this to engender sympathy, rather to start a conversation. I have tried looking at FTD forums. Most of these are populated with caregivers venting. So I have a good idea now how my wife is going to feel after awhile.
I know that there are Kossacks my age (68) or older. Some may be in the early stages of dementia. But you still got to live while you can. It’s not like you can discuss dementia in most social situations. It gets awkward in a hurry.
My story
I use to be an adrenaline junky. I loved whitewater kayaking, caving, skiing, playing the stock market, etc. Gradually I lost interest in these activities. It’s like I finally realized they were dangerous. About two years ago, I had a huge attack of anxiety. I couldn’t sleep, couldn’t even sit down. I spent a lot of time pacing back and forth. I was basically afraid to leave the house.
I had been on anti-depressants for years. My Dr. upped the dose and also gave me anti-anxiety meds. Which helped a little. I acquired a mental health counselor and a psychiatrist. After awhile I developed a new symptoms: I started “spacing out” in Sixties parlance. It became increasingly difficult to concentrate. Also, something was wrong with the way I walked. I did some physical therapy and that got better for awhile. Eventually, the psychiatrist put me on Trazodone which helped the insomnia and anxiety tremendously.
I asked the psychiatrist about the spacing out episodes. He suggested I see a neurologist. It can be a long wait to see a good neurologist, so my GP referred me to one in which I could get an appointment quickly.
She gave me a short dementia test, which I passed easily, but then she got interested in the way I walked. She decided I had a degenerating cerebellum (one of the brain segments that controls movement), and scheduled an MRI. According to the radiologist I had atrophy in the frontal and parietal lobes. He didn’t see anything wrong with the cerebellum. The neurologist didn’t want to let go of her hypothesis, despite the lack of support from the MRI. She told me to come back in six months.
That didn’t seem like a treatment plan to me. My M.D. daughter had been telling me to go to Vanderbilt Neurology for awhile by then, and so that’s what I did, though it was months before I got an appointment, by which time I was having serious difficulty walking. They did a PET scan, an EEG, and a neuropsychological exam, and some checking of my reflexes. The PET scan showed hypometabolism (lowered activity) in the parietal and temporal lobes. I scored a little low on the neuropsychological exam, given my background and education level (Ph.D. in biology). They put it all together and handed me my diagnosis. There is no treatment for the underlying disease(s) or even anything that can slow it down. There may be a few things they can do for palliative as symptoms get worse.
The progression from primary care Dr. to psychiatrist to bad neurologist to good neurologist is fairly typical. In my cases, the original symptoms were treated as an emotional disease, because that’s what they were seeing. The motor and cognitive defects showed up a little later. It almost always takes years to get a definitive diagnosis.
I was semi-retired, teaching adjunct courses at a community college, but I’ve had to give that up. Right now, I walk with a cane when I go out in public, mostly to convince people I’m not drunk. I’ve had a couple of falls, one down the stairs (which is when I bought the cane). My movements in general have slowed way down. I still drive locally in my tiny rural town, but I don’t drive long distances or on the freeways. I have extreme trouble focusing. My wife has forbidden me from unloading the dishwasher because dishes were ending up in odd places. I have trouble speaking; either I can’t find the word I want, or I know the words but I am slow getting them out. My spelling, once excellent, has gone to hell. I have apathy so deep it is hard to describe, like nothing I’ve ever experienced before my symptoms started. I think I would be fine staring out the window all day.
I have already had the experience of people talking about me as if I wasn’t there, which is extremely rude, but it’s understandable; I feel like I’m not all there. I think of the person I used to be, and it’s like a faraway dream.
Anyway, that’s my story. I would be interested in hearing yours.