Shoulda stayed in the recliner/QALY

I've noticed a decrease in the distance I can walk before getting tuckered out. Last night before bed, I took the big yellow lab for a walk around the block. Our usual circuit is probably a bit less than half a mile, and has a little incline to it. Halfway through, I started getting really tired, and noticed I was compensating for my tired legs with some odd body mechanics. Primarily, I could tell I was trying to swing my right leg forward using my hip and back muscles. We made it back eventually, but I was pretty close to getting down on all fours and crawling up the driveway.

I think I might benefit from using a cane (on an as-needed basis), but I worry that once I start, there's no going back. Is that dumb? Maybe it would be a big help. Maybe instead of being another descent into the funnel that is MS, it would end up as a net benefit to my quality of life.

Speaking of quality of life (QOL), I'm intrigued by the ways in which MS and non-MS research attempts to measure and quantify QOL. People who make decisions about allocating health care resources often attempt to guage costs and benefits by speaking in terms of "quality adjusted life years," or QALYs. Here's how it works: one person spending one year in perfect health = one QALY. Illness reduces the value. For example, a year in which one person experiences a burning sensation when he or she urinates might = .94 QALY. As you travel down the continuum from perfect health to, uh, death, the fraction continues to decrease. The measurement of the value of a given health state may be determined by gathering data from patients, who may be queried in any of a number of ways to supply data about Q.

There's a part of me that applauds this kind of thinking as potentially supplying a healthy dose of rationality to decisions about how to allocate health care resources. I'd love to be able to wave a magic wand and create a rational health care system for the US: collect all the available resources in my magic bucket, and dole them out according to my benevolent utilitarian instincts. On the other hand, as someone who lives each year as something less than 1.0 QALY, I teeter on the edge of the rational health care fence: my care isn't cheap. I use more resources than I contribute by way of premiums. For the last dozen years, I've been on either Avonex, Rebif, Copaxone, or Betaseron. Figure about $1,000 a pop per month, or about $144,000 and counting just for injectables, never mind the neurologist bills, MRIs, antidepressants, and physical therapy. What would that money buy if it was spent according to what would buy the most QALYs per dollar?

Make that a veinti latte

If you have MS, you should drink more milk. If a decade of milk-mustache billboards and magazine advertisements hasn't convinced you, the research probably should. Here's another study to throw on the pile. From the abstract:

[Bone density] is significantly lower in MS patients than in healthy controls, vitamin D deficiency is prevalent in MS, and ambulatory status is a determinative factor for osteoporosis in MS. Patients should be encouraged to have adequate sunlight exposure and to increase their mobility. Specific strengthening exercises for hip and back muscles in MS patients would have a substantial impact on bone density, osteoporosis, fracture risk, and mobility.

Botox for all

I was watching PBS the other night; they were documentarizing about a concert pianist who had, for 35 year or so, lost the use of one of his hands (right?) to some sort of nerve disorder. Recently, docs were able to pinpoint a nerve that was causing his hand to contract involuntarily, and Botox it into relaxing.

The last time I saw my urologist, he mentioned that I could try getting a Botox injection in one of the muscles that inferes with peeing freely. I declined, but I reserve the right to reconsider at some point when the eeeeeeeeeew! factor fades a bit. The's procedure's legit, according to this study.

Shoe

I've been crazy busy at work for the last week. In order to blow off some steam, I will relate another amusing pee-related episode.

One of the problems of my MS-related neurogenic bladder is peeing at night. It's not uncommon for me to get up three times a night. I also happen to have flat feet (fallen arches, pes planus, overpronation, what you will), so I've found it convenient to stash a little plastic urinal next to the bed. When I gotta pee in the middle of the night, I reach down and grab the urinal; do my sinful, filthy business; and get back in bed.

This happens often enough that I almost do it on auto-pilot. That is to say, sometimes I'm not fully awake during the process. One night, I got up to pee, reached down to grab the container, and started peeing before most of my faculties were online. At some point, I realized that what I had grabbed was not, in fact, a urinal, but was a shoe that was in the general vicinity of the urinal. I had peed in my shoe. Actually, I did this twice (same shoe, fortunately) before I start getting careful about where I put my shoes at the end of the day.

The best part of this story is that I actually wore this shoe for some time after the afore-mentioned incidents. (For the record, the shoe was a rather comfortable Rockport oxford.) I rinsed it out and filled it up with uncooked rice (I had some notion that this would cause the shoe to smell less like pee) and let it sit for a week. Then I threw out the rice, polished the shoe and its unpeed mate, and put them back into rotation. I stopped wearing the shoe recently, because I got a nice, new pair of brown Hush Puppies. I've still got the shoe, and it smells like feet, but not pee.

This is kind of a funny thing, because my family tells this great story (true, I think) about how once, when I was a kid, somebody discovered me half-asleep peeing in the corner of the living room. I think I only did that once.

Humiliation and the blogosphere

I can't rememer who said it, but there's a great quote out there about the problem with autobiographies being the lack of humiliation. That's probably true of the blogosphere, too: almost nobody blogs their own humiliations (examples, anyone?), but almost everybody blogs the humiliations of others. That's too bad. It seems useful, if not essential, to own up to and figure out a way to laugh at one's humiliations. Heck, David Sedaris makes a living doing it.
Here's a good one: About four years ago, I peed my pants inside an MRI machine. Until that moment, I hadn't fully acknowledged the extent to which MS had compromised my bladder functioning. I remember trying desperately to hold it without squirming, because squirming ruins the picture. During a break between scans, I thought they'd let me out so I could take a leak, but I was wrong. They insisted that it would render the scan pretty much worthless. I told them I was peeing my pants, and they let me out. I remember the guy operating the machine got really mad at me, like I was ruining his lovely picture of my brain. I had to take the train back to my apartment after the scan; I tied a jacket around my waist to hide the pee spot.

I remember thinking, I am 31 years old, and I'm going to start wearing an adult diaper. I only managed to live about 28 years as a potty-trained grown-up. Worse, I only managed about 20 years as a non-bed-wetter.

Scout's honor

I solemnly swear that I will never entitle a post My So-Called Anything. I don't really remember seeing the show that's responsible for so many So-Called Things. I think it happened when I was in college, when I was too busy doing other stuff that seemed really important at the time but in retrospect seems much less so.

Speaking of college, this weekend, to celebrate my wife's 35th birthday, we're headed back to our alma mater. She's a huge fan of rough-hewn folkie Greg Brown. I am also a fan of Greg's music, but my wife is much more a trufan, perhaps onnacounta the sex appeal thing.

I've never felt the be-true-to-your-school loyalty that some people feel for the school where they earned their sheepskins. Being kind of a loner by nature, I was inclined to find alienation even in the warmest settings, and I found some in college. But I'm anxious to get back to the town, which is about 60% Main Street USA and about 40% enlightened midwestern college town. At least that's how it felt ten years ago. Mostly, I'm anxious to get back to the river, which flows from woods and bluffs outside of town, past the college, through the town, and then wanders off into the sticks again.

My most indelible memories of my college years involve this river: paddling it with the babe who is now my wife, fishing it, wading in it, and driving the gravel roads that criss-cross it.

Bush on Mark Felt

Q: Is he a hero?

PRESIDENT BUSH: He was -- it's hard for me to judge. I'm learning more about the situation. All I can tell you is, is that it's -- it was a revelation that caught me by surprise, and I thought it very interesting. I'm looking forward to reading about it, reading about his relationship with the news media. It's a brand-new story for a lot of us who have been wondering a long time who it was.

link to transcript at whitehouse.gov