"Huntington's Disease Scars"

  

 

            Huntington’s disease ravishes the human brain like no other disease. Like fingerprints, this inherited disorder presents differently for each patient. For Mom, we overlooked her earliest symptoms—apathy and anxiety. She loved spending part of her days cross-stitching intricate patterns. Anyone who’s ever sat with needle and thread knows the delicacy of this work. When she set aside an unfinished piece, she told me that she wanted to try a different craft. I purchased a few possibilities from our local Michael’s store, but nothing drew her interest. Around the same time, she stopped reading. Always one book in hand and several on her nightstand, she shifted to barely reading the newspaper. She frequently complained that my dad never took her any place, but whenever he made suggestions, she tearfully nixed his ideas. Anxiety, something many people battle, became part of her daily routine. Sometimes when I called her, she’d cry. My suggestions that she talk to her doctor got the same response, “It’s just a blue day. It always goes away.”        

            When Mom’s feet began dancing during car drives and her fists clenched wadded Kleenex, she’d answer my worried questions with assurances that Dad’s driving drove her crazy. She spent tons of energy controlling her movements when in social situations. Dad finally found a project she loved—land outside of Leakey, Texas. They spent most of their 60s with plans and trips that filled their days. Mom’s anxiety drifted away, but her clenched fists and restless legs appeared whenever she was stressed or tired. I realize now how easy it was for all of us to minimize her early symptoms.

            Right after Dad’s 71^st birthday, a massive heart attack killed him. Within a year, Mom found an apartment walking distance to our home and signed a six month lease to see if San Antonio would fit her needs better. Over a period of eight years, her abilities melted away so slowly that we missed the changes. Once driving on her own, she began handing the car keys to one of us. Her weekly walk to our house became less frequent and then stopped altogether. Her anxiety kicked up again, and she began obsessive behaviors to counter her worst fear—her retirement deposits not being credited to her account. I discovered that she stayed up until midnight to begin calling her bank until her money arrived each and every month. I never could convince her that it was fine to wait until later in the morning.

            None of us noticed that Mom cooked fewer meals for herself. Somehow, I began swinging by her place daily on the way home from work to bring her over for meals we cooked together. When her leg began buckling out from under her, tumbling her to the ground, we scheduled a doctor’s appointment. Fortunately, she had it happen while with the doctor, who scheduled Mom with a neurologist. He suggested several possibilities, and when we mentioned my cousin had Friedreich’s ataxia, he wanted to order genetic tests. Before that could happen, Mom suffered a TIA, landed at Brooke Army Medical Center and her Huntington’s disease went into hyper drive. All of her subtle symptoms blossomed and others surfaced. Her balance evaporated, she couldn’t hold a cup of water or walk unaided. A young lieutenant’s experience with an entire family battling Huntington’s disease insisted to her superior that Mom be tested for it as soon as possible. The neurologist at first resisted the idea because Mom’s cognitive abilities were so sharp. She always recited the “remember these words” drill flawlessly, knew the date, all of our names and birthdates, counted forward and backward without fail.

            The tests, though, never lie. Mom’s Huntington’s disease snuck into our lives without notice and took over everything during her final four years. The stages are recognizable and yet still unique for each patient. Our lives narrowed down, too, as caregivers. I raced to retire from teaching because we knew she’d need care twenty-four/seven. We removed the wall between one bedroom and the bathroom to create a wheelchair wide access point. We structured our days and nights to accommodate her ever increasing needs. When Mom moved into our home, she could get into and out of her wheelchair on her own. She could cook with me, help with laundry, and take trips to see my siblings. She would discuss the news, watch movies with me, and chat about plot lines. By the end, we did everything for her.

            Caregivers don’t talk about having to handle impacted bowels. Caregivers don’t share the horrors of watching a loved one go from eating meals to being unable to take a syringe of water. Caregivers don’t reveal the heartache whispering, “It’s time to go. We’ll be fine. We love you, but you need to let go.”

 

            Mom died in November 2012 after living with us for two years, but we were her caregivers for many years before she moved in with us. Huntington’s disease changed our family forever. We have a resilience now that prepares us to handle new crisis situations with a comparison point—“It’s NOT as bad as Huntington’s disease.”

Copyright 2025 Elizabeth Abrams Chapman           

“Another Round of Up and Down”

         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's 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.

Edna Abrams
St. Patrick's Day 2012
age 82

         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