Scarier Than Ebola, Worse than Guns

During the couple of weeks that my wife’s body was building up bacteria from a urinary tract infection, we almost had to turn off our regular news shows because all they could talk about was THE EBOLA THREAT.

What was THE EBOLA THREAT?¬†As I’ve written before, it had nothing whatsoever to do with our personal prospects for dying. The only people who contracted it in this country were health care workers who had the misfortune to fall victim to some small flaw in their Personal Protective Environment (PPEs– the space suits) and thereby come into brief contact with the virus.

But what about the one person who did die of ebola in this country? Thomas Eric Duncan came here from an affected nation to fulfill a long-held dream of marriage and family reunification. When his symptoms appeared, he did what he was supposed to do: isolated himself from his family, and then, as his fever rose, went to the hospital, and told them he had just come from Liberia. And what did they do? They gave him some antibiotics and sent him home, with a fever of 103 degrees.

This kept coming back to me as my wife and I struggled home from our first emergency department visit two weekends ago. She, too, had a fever — very rare for her — and she, too, was given antibiotics and sent home. They had watched her for hours for concussion, but she refuted every possible symptom, every hour on the hour. She flexed her feet, pushed back their palms. Most humorously, although she could not correctly tell them what year it was, she could tell them whose names she had checked on her absentee ballot earlier that week. Perhaps the medical staff do not believe Progressive Democrats need to be able to walk, because when they threw us out at 3 a.m., exhausted and frightened, my wife declined to put even one foot on the floor. What was the person thinking who wheeled her out to the car and pretty much lifted her in?

And a few hours later, naturally, she fell again. Well, even if you’re not dizzy from an advanced infection, if you have Huntington’s Disease, falling is something you can plan on. This weekend was different primarily because she could not get herself back up. So we had to call the ambulance, for a second time in 24 hours.

When we arrived, the nurses and doctors greeted us without surprise. They confused us by asking enthusiastically if we had arrived in response to the neurosurgeon’s phone call. What phone call? Come to find out, that when the morning staff came in, they reviewed her brain scans and discovered a pinpoint brain bleed. As we arrived, they were preparing a room to operate on the same brain that a few hours ago someone had ferried back to our 1998 Corolla.

So what really killed Thomas Eric Duncan, depriving his fiancee and their son of the family life of which they long had dreamed? Was it really ebola? Or did he, as my own wife almost did, succumb to hospital error?

This is when it’s great to live in a small place like Burlington, Vermont. The doctors have time to back each other up and catch mistakes. The nurses — like the one who was the first to detect the infection, while doing the unglamorous task of emptying a bedpan — have our doctors’ full respect. Now that we’re home, the visiting nurse evaluator, even the state benefits adjuster, are all familiar to us and with us. All of them wonder why she was dismissed with only one live-in caregiver when the instructions clearly said she required two person transfers. But we’re managing. We had a few scary hours, but the networks overlap and all is well.

This is rare. For too many Americans, there is no safety net at all. Crappy insurance, or none at all, keeps people from seeking medical care until their diagnosis is acute. Probably one thing has led to another, as in our case, so medical teams might catch two tricky things and still miss that third one.

According to the most recent statistics available, as many as 400,000 Americans die each year of hospital errors — both omission and commission, as we say in the religion business. 17,227 die of falls, 129,476 of cardiovascular disease, 36,000 of the flu and its complications. My wife in that Sunday dawn two weeks ago dodged a passel of bullets that drop all too many Americans (not to mention our guests) out of what should be the normal courses of happy lives.

As things calm down here at home, I finally got an hour to sit down and clean out my old phone messages. There, indeed, was the one from the neurosurgeon. A doctor who had the time and institutional support — the political climate — to start his morning by checking whether the overnight crew had missed anything important. Neurosurgeons aren’t cheap. But to everyone who loses a loved one to hospital error — to the grieving family of Thomas Eric Duncan — doctor money is a very small price to pay.

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.