Huntington's and the History of Sleep.

Abstract

Long before I first heard the words Huntington’s disease, I had trouble sleeping: difficulty falling asleep, problems staying asleep. Even as a kid I worried about sleep. My therapist father would comfort me, telling me not to worry; resting in bed, he would say, was almost like sleeping: not the advice sleep experts give today. He too had trouble sleeping. My sister Nancy, on the other hand, has been a gifted sleeper most her life. From the time she was little, she could fall asleep instantly at night, in the car on road trips, and on planes during long flights. Mostly she stayed awake and alert during the day. Her sleep changed as Huntington’s symptoms emerged, long before her diagnosis. She began falling asleep during the day, dozing off at meetings or in front of her computer. I attributed her daytime sleepiness to her overbooked schedule and lack of time in bed due to heavy professional and social commitments. With her diagnosis—followed several months later by the pandemic—she began staying up extremely late; she awoke more often during the night and had more difficulty returning to sleep; she slept late, sometimes past noon, though once awake, she usually remained so. No matter if her partner without Huntington’s followed a regular timetable, going to bed and awakening at more or less his typical workday hour, Nancy’s pattern did not adapt. Even as her Huntington’s progresses, my sister remains a free spirit. With few externally-imposed commitments, she can follow her circadian rhythms wherever they take her, though not without pressures from others in the household to follow a more conventional