Today's lesson in perspective: open defecation

NYT has a little piece today about a Unesco and WHO report concluding that 1.1 billion-with-a-b people "practice" open defecation. That means about 17% of all humans poop on the ground, though NYT helpfully adds that "[c]overed pits and outhouses are not considered 'open defecation,' while buckets and long drops over running water are." Way back in 1990, the figure was 25%. So compare any hits to your standard of living to the millions of people who no longer have to poop on the ground.

Research confirms: men are jerks

According to this study, men are 6 times more likely to leave a seriously-ill spouse than women. Not really surprising, but this plays right into my primary making-sense-of-having-MS story, which is, more or less, that among those with the crappy luck to develop MS, I am a very lucky guy.

Conquering Everest, or maybe the lawn

Lori Schneider, a 52-year-old retired teacher with MS, reached the summit of Mt. Everest on Thursday, May 21. "She said, 'I'm here Dad, I'm on the summit, I made it,' " Neal Schneider recounted. "She was very, very happy, as you can imagine."

Congratulations, Lori.

That same evening, Doug Lee-Knowles, a 38-year-old lawyer with MS, mowed the back yard. "He said, 'The Office was a re-run,' Doug's wife recounted. "He looked like he was gonna pass out, as you can imagine."

Congratulations, Doug.

As I've said before, I don't get much out of the adventures of super-crips like Lori. But I bet Lori gets plenty out of her climbs. I get a similar, if smaller, charge out of doing ordinary stuff that has gotten increasingly difficult for me over the last half-dozen years: mowing the grass, washing the dog, and, a while back, replacing a dodgy distributor rotor.

I suppose I've given up on doing the kind of stuff that other people would care to read about in the newspaper. But I'm still fighting hard to hang on to the trappings of ordinary life. Nobody wants to read about a guy with MS making dinner or continuing to drive a manual transmission, but stuff like that sure makes me feel good.

Honda develops robotic mobility aids

Kewl! Today, gearhead blog Jalopnik reports on a pair of gizmos from Honda that could be really useful to people with MS. Does the 7-lb. Honda Stride Management Assist (in the Jalopnik photo at left) sound like something you could use? Snip:

It's designed for people with weakened muscles that can still walk on their own, but could use some help getting back in shape after an injury or tackling difficult tasks like walking up steps. Basically, a motor sits on each hip and helps lift the leg using and arm and strap connected down by your knee. Its your own movement that activates and controls the length and degree of assistance, so you won't find the device trying to force you into movements you didn't already want to make.

The other gizmo is called the Honda Bodyweight Support Assist. It helps support the wearer's body weight in a variety of positions; Jalopnik says "It's like your very own seat that walks around with you wherever you go." It's wonkier-looking (kinda like a robotic dancing coach?) and weighs 14 lbs. Both devices are powered by batteries good for 2 hours of use.

The last time I got excited about a mobility aid was when the Segway came out. These seem to have a lot more potential for use in the real world (I think the lightest Segway, the p Series, weighs 70 lbs.). If American automakers were coming up with stuff like this, I'd have an easier time seeing the importance of maintaining a domestic auto industry.

Putting on your game hair

Interesting piece in NYT by Dana Jennings reflecting on the "buzz cut" hairdo he got shortly before undergoing surgery for prostate cancer. Jennings says he needed the "primal ferocity" that a buzz cut conveys. More generally, Jennings says that style or fashion or appearance is an important way for sick people to communicate with themselves and the world around them:

It was only after the fact that I learned that my hair-shearing reaction to having cancer wasn’t so unusual. I understood that the buzz cut spoke of a new me. It still reminds me that I’ve been tempered in the crucible of cancer, that I have changed. But it’s also part of a muted tradition that’s consistent with the transformation, transition and trauma that I’ve gone through.

I can dig that. I've been sporting my own buzz cut for the last couple years. Every two weeks, I sit down with the clippers and a #2 guard and trim off the half-inch or so that's accumulated. (For the record, Jennings goes with a much closer 1/0 cut every 3 weeks--dude, that's badass.)

I'll concede that my 'do had more to do with my thinning hair than it did with MS, but it has changed my own sense of who I am. I think it conveys the sort of no-nonsense practicality that I aspire to. It's low-maintenance, a little severe, and recession-friendly (not that I ever spent more than $20 on a haircut, but still).

Dear blog: I'm just not that into you

It's not you, it's me. I don't know what my problem is, but I'll make it up to you somehow. Really.

Drugs and money: tough choices

Today's NYT has a great article about how Britain decides which drugs it will pay for through its National Health Service. An entity called the National Institute for Health and Clinical Excellence (NICE) has the job of undertaking a cost/benefit analysis for new drugs. It compares a given drug's price with the drug's ability to improve or extend a patient's life. Some drugs make the cut (like Betaseron); others don't (like Avonex).

This makes some people really mad, natch. The value of adding, say, one year to the life of a 75-year-old male smoker is likely to be reckoned much higher if you happen to be the 75-year-old male smoker in question. But if the NHS's budget is finite, what is the alternative?

A cook's manifesto: I'm no chef

Marcella Hazan, who has taught bazillions to make the great eats of Italy in their own kitchen, has an op-ed in the NYT today. She argues that our fascination with food as entertainment and artistry, and with the chefs who create that kind of food, has caused us to devalue the importance of food as family- and community builder, and the people who do the more humble home-cooking. Snip:

I am my family’s cook. It is the food prepared and shared at home that, for more than 50 years, has provided a solid center for our lives. In the context of the values that cement human relations, the clamor of restaurants and the facelessness of takeout are no match for what the well-laid family table has to offer. A restaurant will never strengthen familial bonds.

A while ago, my dad gave me a chef's jacket with my name embroidered on it. I've worn it on occasion while making some fancified food for friends, but after reading Marcella's column, maybe I'll just stick with an old-fashioned apron.

Unexpected cutbacks?

Anybody who's been paying attention has noticed that increases in the prices consumer goods have increasingly taken the form of decreases in the amount of product you get, instead of increases on the price tag. What used to be a half-gallon container of ice cream became 1.75 qts, then (for Breyers, anyway) 1.5 qts. Well, caveat emptor--you gotta keep your eye on the ball and look at the little shelf tags that give per-ounce prices, or do some quick math in your head.

But Kimberly-Clark may be taking this trend to strange new places: my underwear. When I opened my last shipment of Depends Guards for Men, the package announced that I was getting a new, more comfortable fit. I also noticed the package looked a little smaller. After a couple weeks of product testing, I've come to the conclusion that the new, more comfortable fit must have come at the expense of, uh, capacity. So sure, reduced lumpiness in the area in question is bound to increase comfort, just like a 25% smaller cheeseburger makes for a burger with just 75% of the fat in the previous product.

Here's the kicker: if you want the properties of the old product, Kimberly-Clark helpfully offers Depend Boost inserts, which allow you to soup up your existing disposable absorbent garment. In other words, you're welcome to buy the missing 25% of your cheeseburger. Somebody get Ralph Nader on the phone...

Catching up

I've been pleasantly suprised at how many old friends I've bumped into on Facebook--seems like it's achieved the sort of critical mass of users that made eBay the only auction site worth looking at. Anyway, last week I connected with a guy I'd known since I was 6 and went to school with until I went to college.

When you catch up with someone like that, what do you say about MS? Anything? Here's what I said:

Now, the juicy bit: back in 1992, I developed the symptoms of what was diagnosed a couple years later as multiple sclerosis (MS). I’m not sure how much you know about MS, but I’m doing pretty well for someone who’s 15 years into it. I have a lot less stamina than I did 10 or even 5 years ago, which has been frustrating for a guy who’s inclined to be a do-er. I use a cane maybe 50% of the time, mostly for balance, and I’ve had some trouble with chronic pain as a result of nerve damage, but rest of my symptoms are mild-to-moderate indignities. I’m not sure what else to say about it. I think in the last few years, I reached a point where the disease is always with me. At first, it just meant giving myself a shot every couple days and checking in with a neurologist a couple times a year. But now, I’ve got a visibly funny walk and a disabled parking tag, I take a startling assortment of pills, I had a sort of neurological pacemaker implanted in my hip this spring, and I go to bed around 9:00 every night. There aren’t many places I go or things I do without MS coming along with me. It’s almost easier now, not trying to pass for a healthy person.

What else? My mom lives in Madison, but my dad and his second family are in West Salem, so I get back to La Crosse fairly often. Um, turn-ons include comfortable shoes, gin & tonics, and plentiful public restrooms, turn-offs include people who talk too fast, area rugs (tripping hazard), and the McCain health care plan.

Woohoo! Three-day weekend! sinus infection!

On Tuesday, I had a momentary ache in my lower back. It passed, but I recognized that ache from when I was 12 or so. Back then, I noticed it while swimming with my dad at the ancient pool at the local tech school (it was down in the basement of a building that's long since been remodeled into something else, but I remember thinking it reminded me of the pool in Lex Luthor's hide-out in the first Christopher Reeve Superman movie). Then I got another one yesterday evening. And by the time I went to bed last nite (we put our old futon out on the back porch and listened to the amazing whine of the crickets), I had a sore, swollen throat and a nose full of goo. Sinus infection.

It's not uncommon for me to get them in the fall allergy season. I'll gargle with salt water, suck some up through each nostril and spit it out, and I'll be fine in a couple days. But I was all set to charge out and go fishing bright and early this morning, and now I'm achy, tired, and sorta depressed. I should be feeling better just in time to go to work on Tuesday morning. Crap.

What I did this summer

1. Ate lots of peaches. I wish they grew locally, but they don't. In early summer, they come from California (meh). In June and July, they come from Georgia (mmm). In August, they come first from Missouri and Illinois (mmmmmmmmm). About now, they come from Michigan and Colorado (can't talk- eating).

2. Read some books. Le Carre's "Single & Single," Russo's "Empire Falls," and Pelecanos's "Shame the Devil." Quit on De Lillo's "Falling Man." I can't seem to stay focused unless there's a lot of "Then what happened?" moments to hold my attention. It's a shame, I guess, that I've lost my attention span for Serious Literature; on the other hand, it's nice to be reading something: I think there was a period of maybe five years where I couldn't read anything longer than the New Yorker's "Talk of the Town" pieces.

3. Listened to some audio books. Black's "Silver Swan," and Fforde's "Eyre Affair."

4. Peed-- lots. Summer ain't summer without a gin and tonic or a nice hoppy ale, but what goes in also comes out. Despite the Interstim, and even at work (where I generally stay away from booze), it feels like I've had to make an inordinate number of express trips to the WC (leaking most of the way and staggering like a sailor on shore leave) and changed an inordinate number of pads.

5. Bought a new car. After the Prizm was totalled, we spent a couple months or so looking for a similar cheap, efficient used car, only to find $4 gas had made that kind of car far too expensive. Example: we almost bought a 2001 Toyota Echo. Nice enough car, great mileage, possibly even less fun to drive than the Prizm, but $6000 for a 7 or 8 year-old car with 107,000 miles on the clock? Eventually bought a new 2008 Civic sedan. With tax, it was pretty close to $20,000, but in my book it's at least 5 times as much car as a 2001 Echo that's already been driven 107,000 miles.

I'd initially been thinking we'd get a Civic with an automatic tranny, but in the course of looking at used cars, we drive a sporty little Mazda Protege 5 with a stick. Wasn't interested in the car--not great gas-wise--but we both found we liked driving a stick. I'd kinda given up on a manual after driving one in heavy stop-and-go traffic left me rubber-legged, but I figure I can drive the car with the automatic in situations where I'm likely to get stuck in stop-an-go traffic. Frinstance, getting to work after a blizzard. We had a couple of those last winter, and it took me about an hour to drive what is usually a 15-minute commute. Let's just say the sporty stick-shift is a good motivator for doing one's PT exercises on a regular basis.

6. Blushed, or maybe flushed. For some reason, I seem to have developed a tendency to develop, from time to time, a hot, red, right ear. It's happened a couple times a week or so, and it doesn't seem to be connected to any particular trigger. Last week it happened (1) while eating really good pizza and (2) after reading a short prayer at my kid brother's bar mitzvah. I asked my neurologist if it might be MS-related. His response: "Maybe. Pretty much anything can be MS-related, because your brain pretty much controls everything."

7. Nothing. At work and at home, I've had less to do this summer. At work, because of the cyclical nature of my job, I had lots of time when I didn't have work on my plate. At home, with Carmen not working or going to school, I found myself with more time when I had (or at least felt like I had) no pressing household duties. More free time means more time for naps, crosswords, books, dogs, meditation, sex, and other fun things. I'm hoping I haven't developed lazy habits I won't be able to break once things get busier. Caryn starts classes again tonite, and work has been starting to heat up a little bit lately.

Dogs can 'catch' human yawns

Researchers in the UK report that pet dogs can 'catch' human yawns, the way humans can 'catch' yawns from each other:

The team found that 21 out of 29 dogs yawned when the stranger in front of them yawned - on average, dogs yawned 1.9 times. By contrast, no dogs yawned during the non-yawning condition. The researchers believe that these results are the first evidence that dogs have the capacity to empathise with humans; although the team could not rule out stress-induced yawning - they hope to in future studies.

Well, duh.

I'm pretty sure most dog owners have had the experience of passing a yawn along to Fido, and, for that matter, catching a yawn from Fido. And while I confess to being one of those folks who are apt to anthropomorphize dog behavior, it seems unlikely to me that this could possibly be the first evidence that dogs empathize with humans. Whether you call it empathy or a "sweet disposition," we humans have been selecting for this kind of dog for as long as we've been sharing our lives and homes with them.

Maybe signs of dog empathy are stronger or more frequent when they live around people whose body language frequently telegraphs fatigue, pain, or other distress. Our yellow lab seems particularly skilled at picking up when my MS is kicking my ass.

2 PML deaths scare investors, not MS patients or docs

As the WSJ reports, Elan and Biogen shares were hit hard by news of two additional cases of progressive multifocal leukoencephalopathy (PML) among the 31,800 MS patients on Tysabri. According to the article, though, doctors and patients are "unfazed."

Of course they are. That's because investors can put their money in any of a zillion other places, but an MS patient's available alternatives are pretty limited, especially given that Tysabri is "generally recommended for patients who have not been helped enough by, or cannot tolerate" the interferons, glatiramer, or mitoxantrone.

Patching a hole in the Americans With Disabilities Act

Over the last ten year or so, the employment protections afforded to disabled Americans have shrunk as a result of federal-court decisions (notably the Supreme Court's decisions in Sutton v. United Airlines, 527 U.S. 471 (1999) and Albertson's, Inc. v. Kirkingburg, 527 U.S. 555, 565 (1999) focusing on who is a "qualified individual with a disability" and what is an "impairment." The gist of the rulings is that a person is not disabled for purposes of the ADA if the person can eliminate substantial limitations on major life activities by mitigating measures such as drugs, devices, and coping mechanisms. The National Council on Disability has a nice summary of the role of mitigating measures in ADA cases.

The House of Representatives recently passed a bill (HR 3195) to revamp some of the statutory language of the ADA in order to undo what the Court has done with Sutton and Kirkingburg. Both major-party presidential candidates have indicated their support (scroll down to "Broader scope for disabilities act") for such legislation, so maybe it has a chance of enactment.

Hey, didja know Michelle Obama's dad has MS? It's too bad that the causes of disabled Americans are fragmented into individual "disease lobbies," but wouldn't it be great to have someone in the White House who knew first-hand what it's like to live with MS?

More on worm therapy for MS

A while back, I mentioned that my neurologist was conducting a small study to see if ingesting the eggs of teensy little worm might benefit MS patients. It's been pretty well-documented that such intention infections have immunomodulatory effects, and now a recent study has identified specific effects that hold promise for MS. Snip:

Helminth infections in MS patients created a B-cell population producing high levels of IL-10, dampening harmful immune responses through a mechanism mediated, at least in part, by the ICOS-B7RP-1 pathway. The IL-10-producing B-cell phenotype detected expressed high levels of CD1d and was similar to the one observed in mature naive B2 cells (namely, CD11b(-), CD5(-), CD27(-), and IgD+). Moreover, B cells isolated from helminth-infected MS patients also produced greater amounts of brain-derived neurotrophic factor and nerve growth factor compared with those of normal subjects, T. cruzi-infected subjects, P. brasiliensis-infected subjects, or uninfected MS patients, raising the possibility that these cells may exert a neuroprotective effect on the central nervous system.

MS in the US vs. MS in the UK

NPR has been airing stories comparing the American health care system to systems in other countries. This morning, a story used MS as a way of illustrating the differences between the US and the UK. Here's the gist: In Britain, Linda starts having odd feelings in her legs. Her GP refers her to a specialist, who promptly orders an MRI and other tests, which are performed the same day. Linda starts taking Copaxone, though the NHS does not cover it at the time. Later, the NHS approves Copaxone and refunds Linda's out-of-pocket costs. Her only complaint is that she has to pay for physical therapy. In the US, Jeffrey gets diagnosed with MS and loses his job due to disability. With no job, Jeffrey has no health insurance and can't afford his meds. He loses his house and declares banko. His doctors don't take Medicaid, and he ends up in the 2-year waiting period before Medicare will kick in. He attempts suicide, but fails. He now has coverage through his wife's employer, but it isn't as good as what he had when he was working.

Lucky Linda. Lucky Doug, too: I was studying in the UK when I developed the numbness in my legs that sent me to a GP, who sent me to a neurologist.

Every weekday, I silently curse the alarm clock when it goes off at 6. Then I thank my lucky stars that I'm lucky enough to still be working.

One-car family, for now

Saturday nite, I was going to finish up a big batch of chili for the freezer but needed a couple poblanos. I got into our little Chevy Prizm, started toward the Vietnamese grocery, and was promptly (as in 50' from our driveway) smacked in the passenger side by something big, red, and heavy. It turned out to be a kid driving a red Impala who may or may not have blown the stop sign on the corner.

It's pretty ugly, body-wise, and there's some off-green goo (not engine oil, not antifreeze, so transmission or brake fluid?) dripping under the engine, so I'm pretty sure it's totaled. So the question is what we'll get from the kid's insurer and what we can buy in a market where reliable, fuel-efficient econoboxes like the Prizm are much more in demand than they were when we bought the Prizm a couple years back.

I'm still feeling a little out of sorts, neurologically speaking. Carmen and I went to my neurologist on Friday, but he didn't think I was having a flare. My theory is that it's a consequence of wasting too much time at work playing Super Bounce-Outor too much THC (I'd been increasingly foregoing brownies in favor of a more immediate intake apparatus). This week, brownies only, and we'll see how it goes.

My anxieties about unfinished projects have diminished substantially. Carmen's been getting a lot of the staining done on the porch, and we've done some nice landscaping. If any good came of our recent flooding, it was the certainty that even if we had put down grass seed it would certainly have washed out in the weekend we got 7" of rainfall. I think it has also helped that I've not been out fishing for 5 or 6 weeks, what with the no-wake restriction and the vast quantities of raw sewage that ended up in the lake.

Dizzy + foggy + tippy = dizzippoggy?

For the last couple days, I've been feeling a little dizzy, especially in the morning. Both yesterday and today, it hit me when I got to the office and sat down at my desk. I had some trouble reading stuff on my monitor--my eyes didn't seem to want to follow text in an orderly left-to-right fashion--and when I'd get up to walk down to the bathroom, I seemed incapable of walking in a relatively straight line. By mid-afternoon, it passed for the most part, but I haven't really gotten anything done this week. This is partly because I haven't got much to do, just some ongoing summer projects, but it's made for interminably long, boring work days punctuated by occasional spasms of self-consciousness and worry.

I'm not sure what, if anything, to do about it. The timing's kinda bad: Carmen just found out she was not accepted to the nursing program she wanted to start in the fall, and I'm still a year away from qualifying for my employer's long-term disability benefit, so I'm worried about our long-term finances and was planning to ask my boss for a raise. Now I'm afraid to sit down with my boss lest he notice my somewhat addled state.

I wonder if it's something ear-related, at least the balance stuff. I've had moderate tinnitus for the last few years and lately have noticed a few times that my left ear has faded out briefly.

Interstim after two months, and other stuff

Two months after getting hooked up to the device, I'm still trying to decide whether I made the right call. I'm pretty sure it has improved my frequency/urgency situation, but it's an incremental improvement, say 25% or so. It seems to give me a few extra seconds to get to the bathroom, but I'll still be purchasing Depends by the case from Amazon (fellow cheapskates take note: Amazon will cut 15% off the price if you sign up for regular shipments, which you can always delay or decline). I still feel the device causing my right foot to flex slightly, which can be annoying when I'm stuck behind a desk at work. The incision has healed nicely into a rather bad-ass-appearing scar, but it remains somewhat sensitive to pressure.

On the down-side, though, I feel like I still haven't recovered the level of strength and stamina I had before the procedure. Which I guess shouldn't surprise me, seeing as how I went about a month before I could get into the pool. I'm trying to be pretty aggressive about getting back into shape, but I still feel wobblier on my feet, more prone to a stiff Frankenstein gait after sitting for a while. I've got some knee pain when I flex my right leg or when I try to get up off the floor. And it's starting to get too hot outside for a 15-minute walk around the block.

Bad timing, too: we've had a really nice new porch built that needs to be stained before the wood suffers water damage. We've also got several new windows that need at least 2 coats of polyurethane, and a muddy back yard that needs landscaping. On top of it all, last weekend we got 6" of rain, so the basement is wet (again). Since finishing classes a few weeks ago, Carmen has gotten heaps of stuff done around the house, but I wish we had the money (we spent our stimulus rebate on veterinarian bills last winter) to have somebody else do a big chunk of stuff.