Our Brains Keep Working, Even in Illness

I made a special trip to see my Mother for a few days around her birthday. Her brown eyes always get big and round with excitement when I walk into the Renaissance wing of Remington House, the assisted living facility where she lives in northeast Georgia about fifty miles from Atlanta. She usually walks herself, using her blue aluminum walker for support, around and around and around the nurses' station in the center of the wing and is often seated at one of the colonial-style sofas in the entrance way, watching all the comings and goings of visitors, residents, and staff. She concentrates, intently, purposefully. Her back is bent with severe arthritis but she lifts her upper body and chin and manages to seemingly observe everything and everyone. She never speaks except when spoken to although she is always polite, her good Southern upbringing never failing her.

I asked her, very specifically, "what would you like for your birthday? Something special to eat?" I imagined myself running all over Atlanta trying to find gourmet goodies. Mother always enjoyed trying new things and loved good food.

She wrinkled her brow and whispered, simply "oysters, fried oysters." Whenever I'm there, I always ask, "want to go to a movie, want to go for a ride, want to go to a restaurant, want to go to an art museum?" And my mother always nods yes, her eyes brightening.

So I did race all over Atlanta to find fresh, shucked oysters, along with tartar and tangy tomato sauce. And we had really fresh, lovely oysters breaded in corn meal and fried in the Remington House kitchen. A very special birthday dinner.

When I left the next day, Mother escorted me, slowly moving her walker along, to the double doors of the entrance way and stood there, balancing one hand on the walker and raising the other. She waved as I drove down the long drive to the highway, until we could no longer see each other. Just as she always used to, my entire life, as I have returned and left again, over and over. I've missed her sweet waving, I realized, in these last years. And this time, more poignantly, I felt the familiar tear well up in the corner of my eye. I was seeing a remnant of my deeply feeling, emotional, articulate, intelligent, creative Mother, who loved me with great affection and suppport. I was remembering that person, who I haven't seen in a long time.

My mother has frontotemporal dementia, or FTD, little known by the general public but well known among physicians as the second most prevalent kind of dementia, trailing only Alzheimer's in the US with as many as 4.5 million people afflicted. A recent article in the San Francisco Chronicle Magazine stated: "Though many similarities with Alzheimer's disease exist, the key difference is that FTD patients display only limited memory loss. Results of intelligence tests can remain normal, and individuals with unimpaired motor control can stay athletic for a long time, conveying the illusion of good health." My mother has almost perfect long-term memory, even today. She can look at a photo and tell you the time of day it was taken (along with the date and the middle names of the people in it).

In typical FTD pattern, my mother was struck in her early 60s (many show signs in their 40s and 50s). Always an excellent money manager, my mother began compulsively subscribing to magazines, with piles of at least 30 different ones around the house; she became positive she would win Publishers' Clearinghouse. She then began writing checks for every imaginable contest on TV and in the mail, followed by checks to anyone who asked. She supported Democrats and Republicans, pro-life and pro-abortion, and orphans in Central America.

My mother had a wry sense of humor and loved all things intellectual and artistic. She rarely missed giving a strong opinion, which she voiced, in most conversation. We noticed that for a person who always laughed and cried easily, she began to have little facial affect, no sense of humor, and in fact, very little emotional reaction to anything, no matter how deeply it must have affected her. She simply stared at the casket when my father was buried, never shedding a tear, never reacting at all in any way. We thought she was depressed, as many family members and even doctors do when FTD appears.

Dr. Bruce Miller at the University of California at San Francisco has been studying FTD for a number of years and has found another interesting pattern in many patients with FTD, one which my mother also experienced. His team's research has found that FTD ". . . has been traced to a mutation in a gene called tau, which leads to the destruction of a part of the cortex used for speech and social skills but which may spare regions for visual perception." As a result, "patients stopped talking, withdrew socially, became irritable, developed odd obsessions and failed at memory tests. But . . . the most severe problems were preceded by a period of exceptional creativity. " Dr. Miller notes that many people with FTD became prolific artists in many different media.

My mother's decline in judgment, language, and social skills was definitely preceded by a burst of creativity. She had always been creative, playing the piano, writing, decorating, designing, drawing. But she suddenly began obsessively composing music and painting oils, which now decorate the high wall of her Renaissance House room. Experts believe that "creativity may not be so much a direct product . . . but rather part of a person's way of coping with the disease."

How amazing that our brains continue to compensate for weakness, always seeking to learn and grow, even in the midst of grave illness.