Deep Gym

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.


Late Night Bombshells

I’m a night person, and I like to see how things end. So over the years, I’ve stayed up for a number of television presentations that my mother — my usual viewing companion — has walked away from. Sometimes she just couldn’t stand what she was seeing. More often she was determined to get to bed at a reasonable hour because she hates sleeping late, loves that quiet time before the large family swirls into her quiet kitchen.  Her crossword puzzle. Classical radio. Coffee and a modest breakfast. Then we come in, and her work begins.

The first big thing I heard and she didn’t, was LBJ’s speech to the nation, March 1968, which ended with his stunning withdrawal from the presidential race. As unhappy with him as I was, it still threw me off. When Kennedy was shot, we knew what was going on: a violation of the natural order. Now LBJ was walking away. Were presidents really still the pillar? (Come to think of it, wasn’t the next one Nixon’s resignation? Then the Ford-Carter diminution? No wonder people admired Reagan!)

The next big late night thing — and here we switch pretty completely to baseball — was Carlton Fisk’s iconic home run. Heck, we lived in Cincinnati, we listened to the Reds every night after dinner, often ran down to the ballpark nothing was on tv. And now she was worried about getting up on time, with the World Series on the line? As we say on Facebook: WTF?

Brief skip forward to the Kirk Gibson home run. Iconic, yes. But not my team. Same with some of the other great World Series home runs — including Mr. November’s.

10:30 isn’t as late as some of those were, but somehow, since the sun sets so damned early in Vermont after the Equinox, it feels like the middle of the night. And now it’s not my mother but my wife who keeps me company. She’s a Yankee fan, but always nice to the Red Sox. And I’m not just being nice about Derek Jeter. He has been a true class act, a steady character and talented professional. Someone who partied a lot but never went over any lines. As with Mariano last year, the team doesn’t really matter when it comes to saying good-bye to an immortal. When his single shot through the infield (a better throw would have gotten that runner), I whooped and hollered like everyone else who ever wore a baseball cap. Even the Orioles stood and applauded until The Captain departed.

In Cincinnati, our immortals were mostly traded away. No small market could pay Big Red Machine-level money as revenues grew with television, Yankees don’t have that problem. They face the opposite challenge: a player has to be good enough to justify the money that team will pay. (The Red Sox will pay you that whether you’re worth it or not, snark snark.) But few are able to be that good that long. So we treasured every moment. And there it was. The fairy tale ending to the fairy tale career. What can we say? Is God a Yankee fan, or just a Derek Jeter fan? Maybe it was a present to Joe Gerardi, who joked that the best way it could end would be a walk-off.

Whatever the explanation, my first impulse was to pick up the phone and call my mother. To hear her complain that it’s way too late, she’ll find it all out in the morning. And like Derek’s, my story has a happy ending: my mother is still alive. Well. Indeed, I will call and describe another late night milestone that she missed.
But not too early: she really likes that crossword puzzle.


What happened to all that energy I had last week? Autumn hits the far north/south far harder than it impacts those closer to the Equator. I’m not ready to be cold again: the heat didn’t bake last winter out of my bones. I remember another recent Vermont autumn that brought this same fear of winter, due to the same sequence of a long, deeply-cold winter, followed by a cool summer that showed no stamina resisting autumn’s winds and shadows. I was more active then, and it didn’t help; an eight-hour day is supposed to refer to work, not light. With any luck this cycle will pan out like that one did, with lots of heat and light the following summer.

Of course, my spirits aren’t just subdued by the autumn. My wife just fell getting out of the shower. Always terrifying. She hit her head; how hard? She might have scraped her back; what does that look like? (Both seem sort of okay). She’ll need help getting off the floor; how much will it be? Can I do what she needs?

She got herself up pretty well, I dried her as fast as I could, and now she’s listening from her glider as Derek Jeter plays out the last of his illustrious career. Football scores crawl beneath the panorama of batter, pitcher, and field boxes. Jeter has played hard, but the Yankees will need a miracle to play into October.

She was an athlete all her life, my wife was. Time and again we rely on the training of her muscles, the daily-nurtured determination to beat back physical challenge with grit and grip and a body that knows how to find its hidden reservoirs of strength. Today too many kids spend too much time with screens and chairs, too much bad food, too few opportunities to play team sports. What will they do when they get old? If my wife hadn’t done all that basketball and sailing, if I hadn’t spent my twenties doing yoga in my parents’ living room, if my mom hadn’t taken us all for swimming lessons at the Y, and is still doing her own water aerobics at 85 — well, all I can say is, we’d be beat. Beat. Not by the Huntington’s Disease, but by not knowing how to fight off the premature autumn it wants to wrap around our ambitions.

Time to hang the Halloween flag. And this weekend, they say, we might have one last shot at eighty.

Big Day in Sports Injustice

Yes, Politywonk is a solid Red Sox fan.  2004 is a dear date to me, and the League Championship Series far outweighed that little postscript against — was it Colorado?

But today, my heart goes out to some very fine men in the pinstripes. Derek Jeter, Mariano Rivera, Robby Cano, Curtis Granderson, Mark Texiera, Andy Pettite have been joined by a bunch of “who’s that!” call-ups who have embraced the chance to add to the legends in the Bronx. This group is not in last place in all of Major League Baseball, not even in the hyper-competitive AL East.

These legends and leaders are the ones who today have to witness the desecration of their uniform, their tradition, their personal standards by sharing the locker room, the dugout, the field, with a player who has lied to them over and over, who has disgraced the game at a level not seen since Shoeless Joe Jackson. My heart goes out to them. Yes, they must be hoping this man brings a big bat and solid glove, but they’ve also got to be wondering what they’re going to get, between his age and his lack of self-medications. So much of the hope A-Rod emanates on this occasion, after all, came from both his lost youth and his relinquished medicine case. So the worst of this could be that these very fine Yankees, these Hall of Fame sure-shots — will not be helped as much on the field as they ought to be able to hope.

The feelings of all Yankee fans — one of whom sits right next to me, sleeps next to me, eats next to me — can only be imagined. Yes, Yankee World, Red Sox Nation grieves for you today.

And what about those fans in Chicago, the ones whose grandparents lost a World Series championship to a few who cheated and several others who got cheated. So many believe Shoeless Joe merited no lifetime ban. How must it feel to see someone who clearly does take a field from which Shoeless Joe was forever excluded? Having grown up on Pete Rose’s brilliant career, I know how you’re feeling tonight. If I lived in Chicago, I believe it would be worth the price of a ticket just to boo and throw shoes at the Yankees’s (temporary, we hope) third baseman. Not just on behalf of Shoeless Joe, but on behalf of every fan who lost a hero in the meat grinder of hypocrisy which whirls the Office of the Commissioner on one side, and the Players’ Union negotiators on the other.