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?