Huntington’s disease has caused my brother harsh sensory impairment
Here's how his diagnosis seems to affect each of his senses
My brother, Gavin, was recently diagnosed with Huntington’s disease. It has affected his sensory processing of vision, hearing, taste, smell, touch, and the proprioceptive, vestibular, and interoceptive systems. With Huntington’s disease, this sensory information becomes muddled, leading to many impairments and frustrations.
Gavin has unusual eye movements and seems to dislike too much visual stimulation. This has caused him to throw away many of his belongings, and he hates when there are too many pictures on the walls. Having too much stuff around him at home seems to be visually busy and confusing for him. He used to love family photos but now has no interest in them. He becomes angry and says he’s not interested if we try to show him pictures.
He dislikes listening to music, though he used to enjoy it. He seems to struggle to hear his television and turns the volume up loud. His voice suddenly changes from normal to high volume and back again. His voice can be very high-pitched, particularly when he’s angry. He struggles in restaurants if there are lots of people and different conversations going on around him. He doesn’t like having too many people in his home at one time. The different conversations are likely to be confusing for him, leading to sensory overload, anger, and shouting.
Huntington’s appears to have affected Gavin’s sense of taste, causing him to crave sugary, fatty foods and eat them in excess. He has gained a lot of weight as a result.
My brother refuses to take a shower. We think he may dislike the feeling of water hitting his body or feel too enclosed in the shower cubicle. He avoids haircuts, which could be a dislike of having his hair and scalp touched.
He also refuses to do his laundry, as he can’t tell if his clothes are wet or dry when he touches them. In addition, it seems he can’t judge the air temperature, which means he wears inappropriate clothing for the time of year. When anyone mentions an odor developing, he says he can’t smell anything. He believes we are too fussy.
He struggles to know where parts of his body are without looking at them, which suggests issues with proprioception. He accidentally broke his toes by kicking the baseboard in his narrow hallway. He then refused medical help, despite having so much swelling and pain in his foot that he couldn’t leave his home for three weeks.
He can’t judge how much force he applies to things. He accidentally kicked a ball too hard at his son, breaking one of his son’s toes, and has unintentionally broken a lot of his furniture and belongings.
Gavin has problems with his coordination, posture, and balance. His gait is affected, and he looks unsteady when he walks. He looks slumped when sitting on the sofa, as Huntington’s affects his core strength, which also makes transferring on and off the sofa difficult. He struggles to coordinate his movements to perform everyday tasks like wiping down a tabletop.
He has difficulty with interoception, or understanding what is going on inside his own body. He seems to struggle to realize he’s in pain; perhaps pain feels like a different sensation to him. He ignored a rotten tooth for a long time, only receiving help from a dentist when we made an appointment for him. The dentist couldn’t understand how he had put up with so much pain for so long. The tooth had to be removed.
Avoiding sensory stimulation has made my brother resistant to change and reliant on rigid routines. This makes life predictable for him, with sensory input he can tolerate. He can become overwhelmed, withdraw, and appear lethargic with too much sensory stimulation.
Because Gavin struggles to articulate any problems he is having, navigating life is difficult for him and for our family. Still, we try to anticipate and adapt to his difficulties, and keep things as calm and as manageable as we can for him.
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David McDonagh
He is certainly suffering Becky. I have seen all of his symptoms with others but he certainly has more than most HD people. One thing I have seen with quite a few HD people is that some can take an enormous amount of pain and not feel it. My sister and brother and another chap I helped never seemed to get any pain yet they have had serious things happen like head trauma, car crashes, knife injuries, stabbing, being run over by a car twice, serious suicide attempts, all without showing any pain whatsoever. Keep well Becky
Becky Field
Yes, David. It does seem to be an extreme case. That's amazing your sister, brother and one other, could experience that level of pain and not feel it. Keep well too, David. Thank you for reading and commenting.