Huntington’s Disease impacts people differently. The more I read, the more I realize that this disease affected Mom much earlier than I’d first thought. For many years, she complained about having “Blue Days.” Never bad enough or frequent enough to seek treatment, Mom would call sometimes near tears. These lonely days would end quickly, and I internalized the lesson that mild depression “just happens” and you weather through it. Looking back, I believe these downturns may have signaled the early changes HD brings into a person’s life.
By the time my mother was in her sixties, she began complaining about never going anywhere or doing anything. My father would plan some kind of activity or outing, and my mother would shoot the idea down for some nebulous reason. Dad’s frustration resulted in him giving up on suggesting things they could do together, and Mom grumbled even more about being stuck at home. When they bought the land in the Hill Country, Mom’s enthusiasm returned. She loved planning and tackling each project for the cabin.
Around this time, her first motor symptoms emerged. While she watched television or sat in the car, Mom would shuffle her feet restlessly. I asked her many times if she could stop, and she’d reply, “Of course. I’m just exercising my legs and ankles.” Then she’d rotate her feet around deliberately for a moment or two and settle down. Sometimes, Mom would suffer from bouts of anxiety. These spells of worry didn’t last long, and again she never even mentioned them to her doctor.
After my father died, Mom moved to San Antonio and took her own apartment about a mile from our house. She would walk over some mornings and spend the day. She didn’t like driving, though, and began saying that she felt like her perception was “off" when driving. Gradually, other signs of HD surfaced. Mom complained about being “askew” and off balanced. Several times her leg would simply fold beneath her. She went to the doctors about these symptoms, but no one knew exactly what was happening. One neurologist suggested genetic testing because Friedrich’s Ataxia had already been documented in her family (her niece had the disease). He felt it was possible Mom was a carrier and expressing the gene for some reason as she aged. At that point, Mom decided she didn’t really want to know.
Eventually, a very slight stroke kicked Mom’s HD into temporary overdrive. A young lieutenant at BAMC made the diagnosis when she witnessed Mom’s movements. This physical therapist had worked with an HD family in her short career. The neurologist handling Mom vanished with her for over an hour and came back stating that he really didn’t think she had HD, but he suggested we do the genetic testing anyway. Mom went to a rehab facility to work on her motor skills, but her balance never fully returned. The physical therapists and doctors suggested she “furniture walk” when in her small apartment and use a walker whenever she went anywhere.
Of course, the genetic testing showed that Mom is a carrier for Friedreich’s Ataxia, that she has 40 CAG repeats, and that there is a third defect on another gene that has unknown impact. This diagnosis, made five years ago, gave us labels. Now we could help Mom make knowledgeable decisions and prepare for her future.
Over the last five years, HD neurodegenerative course has touched every aspect of our lives. Mom’s gone from living independently in her own apartment, to an assisted living facility, to our home. Her ability to walk a mile has vanished. She can only take two or three steps with assistance. Her infrequent “Blue Days” gave way to daily battles with depression that medications attempt to control. If she’s gotten enough rest, her personality remains the same gentle, intelligent woman she’s always been. However, insomnia strikes at least once a week, and during those endless nights she morphs into Mr. Hyde. Her usually sharp intellect muddles into confusion.
St. Patrick's Day 2012
The care Mom needs now involves twenty-four hour a day, seven days a week aid. Fortunately, she can still use her hands and arms for eating, but we must do everything else for her. She needs help moving into and out of her wheelchair, which we must push. In recent weeks, Mom’s developed a need to “pace.” She will start in her bedroom, request that we take her to the family room. Within fifteen minutes, she’ll want to go back to her bedroom. This up and down routine continues for hour after hour. By the end of the day, her legs barely move at all, becoming rigid sticks. Mom cries because she cannot stop this compulsion to go from room to room. On these days, she’s certain that she’s dying and wants me to call her doctor to see if there’s something that he can give her.
This new symptom, the compulsion to go back and forth from room to room, lasts only one very, very long day. By the next day, Mom settles into her usual routine. Next month, she sees her internist for her six month check-up. If this new behavior increases in frequency, we’ll ask if there’s some medication that may curb the obsessive-compulsive urgency. Her next appointment with her neurologist isn’t until September, but we can always give him a call to see if any of her current medications need adjustment.
Every time a change occurs, I am forced to accept that HD will win in the end.
Copyright 2012 Elizabeth Abrams Chapman