How symptoms of Huntington’s can stretch to walking and the feet
Reflecting on the ways every step felt uncertain to my father with the disease
“It’s your road, and yours alone. Others may walk it with you, but no one can walk it for you.” — Rumi, scholar and poet
Huntington’s disease has so far affected four generations of our family. We lost our dad to Huntington’s in May 2020 and our grandfather and great-grandmother before him. My brother, Gavin, was diagnosed in January 2022, aged 42. I tested negative for the disease last summer.
Symptoms of peripheral neuropathy include numbness and tingling in the feet and hands; burning, stabbing, or shooting pain in affected areas; loss of balance or coordination; and muscle weakness, especially in the feet. These symptoms can also be found in Huntington’s disease.
Our dad had problems with foot pain, balance, coordination, muscle weakness, and walking gait, and so has Gavin.
My dad’s experience with foot problems
One of the first physical signs I saw of my dad’s Huntington’s was a change in the way he was walking. He developed a pronounced bounce in his step, almost as if he were walking with springs beneath his shoes.
He wore out his shoes in a matter of months; the soles of them had holes. He never realized it and would seem confused that his feet were getting wet when it rained. We watched, concerned, for some time. One of my friends just thought his walk looked jolly and was sure there was nothing to worry about.
After his diagnosis, a physiotherapist helped Dad. She explained that he’d been walking that way because Huntington’s had caused him to lose sensation in the bottom of his feet. She asked me to imagine trying to walk with a duvet wound around my feet. That’s what Dad felt, she said. It caused his feet to push down to the ground harder as he walked, so he’d feel the ground beneath him. He’d been compensating, if you like, for the lack of feeling in his feet.
It went some way to explain his plantar fasciitis and the thick, hard skin his feet had developed. That and neuropathy had been causing him extreme pain.
Dad’s physiotherapist devised an exercise regimen for him to improve his muscle strength. Physiotherapy has also been shown to improve cognitive health. His exercises were repeated three to four times a week with his personal assistant, Graham. My children were small at the time and enjoyed joining in with Granddad’s exercises!
We regularly gave Dad foot care and applied moisturizing cream to remove the hard skin there. Dad was much more comfortable, and I’m certain the physiotherapy and exercise maintained his cognitive and physical health for a longer time.
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