Huntington’s Disease belongs to a group known as “neuro-degenerative” — meaning parts of the brain are dying — and it belongs, as well, to a group called “movement disorders.” Most people, if they know anything about HD at all, know its strange involuntary motions. Long before the chorea (known to earlier eras as St. Vitus’s Dance). The neuro-degenerative part begins long before that, and aggravates tendencies to anxiety and depression. As it progresses, it eats into executive and administrative functions — often leaving intellect fairly intact. With the decline of speech, locked-in syndrome is looking more and more like a possibility. But as my wife and I close in on her thirteenth year since diagnosis (February 2002), we’ve learned that this disease, like any other, has enemies in the cluster of habits and practices known as physical self-care, mental stimulation, and spiritual discipline.
In particular — now that there is a medication (from Europe, not Big Pharma) — that can help calm the chorea, we make daily, sometimes minute-by-minute use of our lifetimes of sports, yoga, strength-training, and just going out for walks. Deep Gym, let’s call it. Deep Gym started for me as a child, when my mom would get my father off to work, clean up the breakfast dishes, march into the living room and break out her Bonnie Pruden exercise records. There we would all be on the floor, looking at the fold-out book of stretches, sit-ups, push-ups and who knows what else. She took us to the Y for swimming lessons, and my dad drove us into the mountains on weekends for long hikes. In school I was a klutz at games and sports, but healthy activity played a happy part in our family culture. Through the years, I added some light yoga from an old hippie paperback, and kept up occasional visits to the local gyms or Y. Sometimes the repetition bores, because my muscles would prefer a bit more adventure. And then something hurts and I relish the muscular wisdom of Deep Gym.
For my wife, athletics centered her social and spatial life. Basketball, softball, boating, hammers and saws, long walks for watching birds. For a long time, as her disease started cutting into peak activities, she simply scaled down. Bicycles too tippy? Old Spokes Home will make a tricycle. Kayaking too risky? Easy enough to switch to a flat-bottomed row boat. Boating and rolling not possible? Time for a good long walk — or a short one, to the bluff above Lake Champlain, two blocks away. Like mine, her muscles love reaching into their Deep Gym however they can.
Last week, she started falling inexplicably. It turned out not to be Huntington’s Disease, but a urinary tract infection that made her dizzy. (Warning to Boomers — the burning sensation doesn’t happen as often, so the infection might not announce itself until you’re really sick). Once the antibiotics stabilized her chemistry, HD still complicates her recovery. Especially when tired, her muscles and limbs seem to have forgotten such simple tasks as rolling, bending, lifting. For the moment, she has to use a wheelchair, just to be safe in the house. And she’s staying int the house, until her strength and coordination get back to normal.
We’re on our own this weekend. She weighs 129, I weigh 124, so when she slides off a target platform — a seat or bed — I need her to participate in self-levitation. Yesterday, she couldn’t do it. We had to call the fire department for a lift. (This is expensive, and they already took us to the hospital twice last weekend.) Today, when she slid down, we calmed ourselves and I showed her that it would help me if she would do a “squat thrust.” I marveled to have remembered the term. And then I marveled even more, as she watched me demonstrate it once or twice, and then — she followed suit. Deep Gym to the rescue.
Tomorrow, we begin five days of intensive physical and occupational therapy, with who knows how much more to follow. Tiring, but exhilarating. Because I choose to be her main caregiver, it often reminds us of dancing.
Someday, you or someone you love, might find yourself/themselves facing one of the movement disorders — Parkinson’s,, MS, ALS, HD, etc. Perhaps you/they will have a neuro-degenerative. So let our experience encourage you. Keep working on that Deep Gym treasure chest — and someday, it will show up to work for you.