shoester

Interesting nugget in Montel Williams story

2011-01-07T13:02:00.002-06:00

Turns out he was in Wisconsin because he's participating in a trial at UW-Madison involving "stimulating the tongue with electrical impulses that then flow into the brain stem and enable the brain to more effectively process information in patients with MS, stroke, brain injury or Parkinson's disease." Link.

Interstim for your mouth?

Montel, get a vape!

2011-01-06T14:59:00.002-06:00

Montel Williams was cited for drug paraphernalia at the Milwaukee airport--they found a pipe on him. Two things: 1) Smoking is bad for you; smoking pot isn't as bad as tobacco, but I'm hoping he only smokes when he travels. 2) Um, duh. It's an airport. Rolling papers don't show up on the scanner.

Link to Milwaukee J-S story.

Grateful

2010-10-07T13:40:00.005-05:00

Over the last year or so, it's been hard not to notice that I've been on the receiving end of a lot of help and good will much more often than I've been on the giving end. I hope I remember to say thanks to those who help me out, because it makes a huge difference in my life, especially the kind of help that saves me a few steps or a bit of lifting--I really think it makes a difference in terms of my ability to stay employed and to devote some of my limited energy to taking care of myself.

Honestly, I'm not naturally inclined to be a taker and it's taken some humbling for me to get to a place where I can accept a hand here and there. I'm using a cane more often than not these days, and it seems to bring out the better instincts of people around me.

Thanks.

New toy/tool: iPod Touch 4G

2010-10-05T09:37:00.002-05:00

After my old hard-drive iPod conked out about a year ago, cash was short so I replaced it with a 4 gig Sansa refurb I got from Woot for less than the cost of a tank of gas. When Carmen went back to work, though, I wanted to get back to the iPod, mainly because it's so much easier to manage music with iTunes, but also because I'd gotten hooked on Angry Birds on Carmen's older Touch. When the new iPod Touches came out, I got a 32 gig Touch, and it turns out to work well as a PDA. I use it to keep track of to-do lists and calendars, and it's working well for me.

This morning, on my way out the door, I had the notion that I might get to the grocery store at some point during the day. But I also knew Carmen had the same notion, so I didn't want to take the paper grocery list off the fridge. Solution: take out the Touch and snap a quick, kinda-blurry-but-legible (no flash on the iPod) photo of the paper list. Now, if I happen to have a half-hour to drop by the store, I've got a good-enough picture of the list. If Carmen gets to the store first, she'll still be able to take the paper copy. Bam!

Mindfulness and MS: it works

2010-10-04T08:58:00.002-05:00

Officially, even. If you're looking for an intervention that will make you feel better, as opposed to merely reducing the likelihood of a relapse or reducing the number of spots on an MRI, try mindfulness. Of course, the abstract doesn't detail what exactly constitutes a "mindfulness-based intervention," but it was enough to remind me to take out the John Kabat Zinn books again and get back in the habit of meditation.

Gilenya approved. Now what?

2010-09-23T13:22:00.003-05:00

So the FDA has approved a pill for MS, Gilenya (nee fingolimod). Now all we need is some data that tells us which of the available disease-modifying drugs might work better. Until somebody starts to generate comparative data, choosing a DMD for MS will be like choosing which brand of cigarettes to smoke: "Yeah, I like that Avonex is cheaper, but it's really a woman's brand. Rebif seems to work OK, but only black people shoot Rebif. Me, I'm more of a rugged, outdoorsey Copaxone guy."

If you want to reduce the cost of providing care for chronic conditions like MS, you should probably start by figuring out whether some drugs work better than others. If it turns out that some work better than others, create an incentive for using the drugs that work best. If they're all equally effective, create an incentive for using the drugs that are cheaper.

Another new drug, and stuff

2010-08-13T10:12:00.004-05:00

I found out this morning that my employer's pharmacy benefit manager has approved my request to cover Ampyra. That means I can get a month's supply for $35. I'm excited to try it.

I've been feeling lately like I'm teetering on the edge of having to leave my job. It's an odd time to feel that way--the work flow at my current job is cyclical, and we're at the point in the cycle where there's very little work. But I've got plenty of down time to think about what it will be like when the cycle ramps up again.

As of a couple weeks ago, I've been spending Wednesdays working from home. Because I've got little or nothing to do right now, it's working great: just me sitting around the house checking email/voicemail, basically. While I know there will be busy times when it's just not possible to work from home, I'm hoping that won't happen too often.

I didn't have to kick and scream to get my boss to agree to this arrangement, but he has made it clear that he would not have permitted me to work from home but for the ADA. He also asked me to provide some kind of documentation from a doctor as to why this is beneficial for me, and my neurologist has agreed to prepare a letter to this effect. But I had the impression that my boss wanted something he could wave in the face of an able-bodied coworker who also wanted to work from home. I'm fairly certain that the medical information I provide to back up my need for an accommodation must be kept confidential, except with respect to managers and supervisors who need to know. Not that I fear I might be 'outed'--I think almost all of my coworkers are at least aware that I have some kind of disability.

First research testing CCSVI theory

2010-08-12T10:50:00.004-05:00

Yesterday, my feed from PubMed turned up what seem to be the first couple articles testing Zamboni's CCSVI hypothesis, from the Annals of Neurology:

Sundstrom, et al.:

To test this hypothesis, we studied 21 relapsing-remitting multiple sclerosis cases and 20 healthy controls with phase-contrast magnetic resonance imaging. In addition, in multiple sclerosis cases we performed contrast-enhanced magnetic resonance angiography. We found no differences regarding internal jugular venous outflow, aqueductal cerebrospinal fluid flow, or the presence of internal jugular blood reflux. Three of 21 cases had internal jugular vein stenoses.

Doepp, et al.:

Fifty-six MS patients and 20 controls were studied. [...] Except for 1 patient, blood flow direction in the IJVs and VVs was normal in all subjects. In none of the subjects was IJV stenosis detected. IJV and VV BVF in both groups was equal in the supine body position. The decrease of total jugular BVF on turning into the upright position was less pronounced in patients (173 +/- 235 vs 362 +/- 150ml/min, p < 0.001), leading to higher BVF in the latter position (318ml/min +/- 242 vs 123 +/- 109ml/min; p < 0.001). No differences between groups were seen in intracranial veins and during VM. None of the subjects investigated in this study fulfilled >1 criterion for CCSVI.

So it seems unlikely that MS is caused by CCVSI. Could it nevertheless be true that the "liberation" procedure cures, or at least alleviates, MS? Will anyone bother to find out?

UPDATE: Here's a link to a short Wall Street Journal piece about the impact of this research.

NYT on Zamboni "liberation"

2010-06-29T10:46:00.002-05:00

Today's NYT presents a piece about the Zamboni "liberation" procedure as a case study in patient use of the internet:

The controversy has exposed the deep frustration of many people with this incurable, disabling disease, who feel that research has let them down. It is a case study in the power of the Internet to inform and unite angry patients—which may be a double-edged sword. Pressure from activists helped persuade the Multiple Sclerosis Society to pay for studies of Dr. Zamboni’s theory, but the Internet buzz has also created an avid market for a therapy that is still unproved.

“It’s eye-opening the way this group of patients has grabbed hold of the social-networking technology,” said Dr. Simon, an interventional radiologist at JFK Medical Center in Edison, N.J. “They’ve taken this to a level I’ve not seen in other patients. Patients used to read an article or two. Now, they’re actually seeing procedures on YouTube. Is this the future of medicine?”

If there was a cure for MS, I'd be in a hurry, too. But the only way to know if this CCSVI is for real is to wait for the scientists.

Try Googling 'CCSVI' and you'll find plenty of people who already want to sell you the miracle cure: No waiting! Top docs in India! A woman described in the NYT managed to pursuade an interventional radiologist in the US to perform the procedure, for about $10,000:

Although it was, technically, an experimental procedure, Dr. Simon said he did not have to ask his hospital for permission to perform it. The details were similar to other procedures that interventional radiologists do every day. It is not uncommon for them to take a device approved for one purpose and use it for another, like putting a bile-duct stent into a blood vessel — a practice called “off-label” use, which the Food and Drug Administration allows. Interventional radiology, Dr. Simon said, is an “off-label specialty” that depends on innovation and adaptability.

Eh, not quite

2010-06-13T09:17:00.002-05:00

Let's sum up: the condom catheter, or "Texas catheter" (I wonder why that is) is a pain in the ass to get set up, might lead to a bladder infection, and could be a serious hit to your self-esteem. For me, it isn't right for daily use, but I think there might be occasions for which it would be a big help. Maybe for travel or events where one might not be able to get to the bathroom for long while.

I guess if there were any magic-bullet interventions out there, they probably would have been fired by now.

A few hitches

2010-06-11T14:08:00.003-05:00

1. I am blessed with a dually-dysfunctional bladder: it wants to let stuff out when I want to hold it in, but it won't empty completely when I ask it to. I can usually persuade it to empty most of the way by gently pressing on and massaging it with my hand. That's fine when I'm standing at a urinal, but when I'm at my desk it might look a little weird. The upshot is that the bag will be happy to catch whatever my bladder decides to let out, but in order to truly empty I'll still need to adjourn to the men's room. If I don't, I run the risk of developing a bladder infection--something I haven't had a problem with yet.

2. I need to figure out how to keep the bag up by my knee instead of down by my ankle. As the bag fills, of course, it gets heavier and starts creeping down and pulls at the "condom."

3. Walking with a fullish bag, especially one that's slid down a bit, causes an audible gurgling/sloshing sound.

OK, that was weird

2010-06-11T12:03:00.002-05:00

I suppose after a while, I will learn not to panic at the sensation of something warm running down my leg. It's going to take some time, though.

It felt a little odd to lock myself into a stall in the bathroom, prop my foot on the toilet, pull the cuff of my pants up, and release the valve on the bottom of the bag. But maybe not quite as odd as locking myself into a stall to change my own diaper 3 times during a work day.

It feels, and looks, sorta precarious, just sorta taped on there, connected to some tubing that leads to a bag on my shin.

I'm really, really self-conscious today

2010-06-11T08:57:00.002-05:00

A casual Friday in summer seems like a good day for one's first try with an external catheter, or what the packing calls an "incontinence management device" (IMD). Today, I'm experimenting with a device called the GeeWhiz, an award-winning variation on the condom catheter. In a nutshell, it differs from the usual setup in that the "condom" is held in place not just by taping around the outside but also by a piece of double-sided sticky silicone on the inside as well. (You can see a creepy diagram here) We'll see if this clever design is worth the added expense--a 10-pack of daily use kits plus a leg bag and bed bag costs $59.95 + $10 shipping.

Putting the thing on wasn't too bad, but if I'm going to use this thing on a regular basis, I'm definitely going to need to give myself a trim in that region. And the tube that extends to the leg bag is definitely visible through my khakis.

Summer

2010-06-10T12:06:00.002-05:00

Summer ain't what it used to be. I've still got the fishing boat, mainly because it was easier to ignore it than to sell it, but I haven't been back out since May. My hope is that I'll be able to persuade my wife to join me for a few lazy afternoons when it's not too hot. And I'm resigned to putting a little more money into it to fix a few small annoyances.

I'm also resigned to making some adjustments in my own life. I caved in and ordered a condom catheter set-up, having reached the point where I'm having to change pads 3 or more times a day. I'm hoping it will save me a few trips to the bathroom during the work day. I'm also hoping I can figure out how to keep my gut working properly--I'm going to see a new GI doc next month. If I can get my plumbing issues under control, I think I stand a much better chance of staying in the work force. If not, I could end up trying to get disability benefits based not on crushing fatigue, cognitive decline, or neuropathic pain, but on the basis of a hyperactive bladder and a lazy colon. I can't think of a more annoying end to my career.

Recalibrating

2010-05-05T08:50:00.002-05:00

Fishing season opened last weekend, so Sunday I sallied forth. I lugged the batteries out to the boat, put a beer and some bait in a cooler, collected rods, tackle box, and PFD, and hitched the trailer to the truck. By the time I got to the landing I was exhausted, but I managed to get the boat in the water and the motor started. A few hours later, it was pretty clear to me that I should definitely quit fishing solo and probably sell my leaky, abused boat.

I just don't have the energy, and it's not fun anymore. I need to readjust my life and do less. I want to quit some stuff and have more juice available to do what's left. I want to leave fewer things half-finished, half-assed. While I was out not enjoying fishing, my tomato, onion, and pepper seedlings for the garden were wilting in the sun. My new guitar's gathering dust. I've never even taken the nifty condenser mic I bought a couple years ago out of the box. There's a used Soloflex machine in pieces in the basement. There are a dozen bags of compost and peat in the garage waiting to be mixed into the garden. I've still got skiing equipment in the house somewhere--I haven't used that for at least 6 years. The printmaking inks and art supplies in the basement, the unopened yoga book, notions about road trips and vacations abroad, get rid of it all--it's unbearable to think about.

Let's have a big garage sale, liquidate everything, and start over.

Beginnings, middles, and ends

2010-04-23T08:48:00.002-05:00

It's spring, and change is in the air.

At work, colleagues are announcing departures and retirement. There will be cakes and the obligatory speechlets and talk about hiring replacements or not and people moving to new offices and jockeying to score coveted office furniture and to ditch disfavored assignments. And in the fall, we'll regroup and cowboy up for another go-round. In the fall, I'll give some thought to whether I'm prepared for another go-round, and while I'm still thinking about it I'll notice that I've started going around again. That's the way it works, because when I leave this job, it will almost certainly not be because I'm retiring or moving to another job.

Carmen's graduating from nursing school in a few weeks. She's done really well, and I'm so proud of her. The job market's not great right now, but I'm guessing she'll find work right away--it just might not be exactly what she wants to do, or where she wants to do it. In any event, it might at last be fiscally possible for me to reduce my work hours.

Change gets a lot of attention. Beginnings and ends register in a way that middles can't; that's just how we're wired, at least initially. But I'm trying really hard to cultivate my awareness of, and appreciation for, the middles. Meditation is a great tool for that. So is a canoe.

In the spring, I try to make it out to a certain creek when the water is high to float downstream through the damp woods. The first time I paddled it, I was maybe 11 or 12, and my dad and I fished for trout with the grasshoppers we collected from a field by our house. These days I need to be accompanied by others strong enough to get the boat to and from the water, but it's still a magical ride.

Right up until the point where we tip over the canoe.

Today's lesson in perspective: open defecation

2010-03-16T15:08:00.004-05:00

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

2009-08-03T12:56:00.003-05:00

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

2009-05-24T09:02:00.002-05:00

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

2009-04-16T09:17:00.005-05:00

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

2009-03-26T10:01:00.004-05:00

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

2009-02-19T10:58:00.003-06:00

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

2008-12-03T15:04:00.002-06:00

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

2008-11-29T10:56:00.005-06:00

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?

2008-11-03T09:12:00.002-06:00

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

2008-10-06T09:15:00.003-05:00

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!

2008-08-30T12:09:00.002-05:00

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

2008-08-26T13:50:00.003-05:00

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

2008-08-06T08:41:00.003-05:00

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

2008-08-05T09:10:00.002-05:00

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

2008-07-28T09:32:00.006-05:00

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

2008-07-28T09:10:00.003-05:00

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

2008-07-24T09:02:00.004-05:00

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

2008-06-24T13:10:00.004-05:00

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?

2008-06-18T16:19:00.003-05:00

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

2008-06-11T10:34:00.004-05:00

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.

That darned National MS Society slogan

2008-05-05T02:23:00.002-05:00

Remember how I whined and whined about the National MS Society's lame new slogan ("MS stops people from moving; we exist to make sure it doesn't.")? It showed up in an odd way in an article about a local MS walk fundraiser. Snip:

MS interrupts the flow of information from the brain to the body and stops people from moving. It is an unpredictable, often disabling disease of the central nervous system.

As lame as the slogan is, it's even lamer as a description of the disease. Someone who reads this could be excused for developing a fear that a family member, coworker, or employee with MS might some day, without any warning, suddenly be frozen motionless like some kind of neurological Pompeian. Should they be permitted to venture out in public unescorted? What if MS struck as they were crossing a busy intersection? What if MS struck as they were driving a car? Would the car freeze too?

Might scare up a few more research dollars...

In the news: gas tax holiday plan makes silly season sillier

2008-05-01T12:03:00.004-05:00

Even though I'm a pinko treehugging liberal pantywaist, like many others of my kind, I've had a kind of soft spot for John McCain. Even though we'd prefer to see a democrat in the White House, we secretly think to ourselves that he'd be a huge improvement over the current administration, that he's somehow above the kind of right-wing pandering that was, at least until the 2006 mid-terms, the Republican's ace in the hole. Well, if there were a number of thinking people out there that might have been potential McCain democrats, that number should be significantly lower in light of his proposed federal gas-tax holiday.

There are all kinds of reasons why it's lame in terms of economic policy and absolutely moronic in terms of energy policy. Tom Friedman explained them well in his NYT piece yesterday. Snip:

[W]e borrow money from China and ship it to Saudi Arabia and take a little cut for ourselves as it goes through our gas tanks. What a way to build our country. No, no, no, we’ll just get the money by taxing Big Oil, says Mrs. Clinton. Even if you could do that, what a terrible way to spend precious tax dollars — burning it up on the way to the beach rather than on innovation?

The McCain-Clinton gas holiday proposal is a perfect example of what energy expert Peter Schwartz of Global Business Network describes as the true American energy policy today: “Maximize demand, minimize supply and buy the rest from the people who hate us the most.”

I'm not surprised that Hillary Clinton would get on board with this (remember how her husband drew down the Strategic Petroleum Reserve back in 2000 when oil was going for $40 a barrel?), but somehow I expected better from McCain. Will Obama be able to explain to ordinary Americans why saving them maybe $50 on gas is such a stoopid idea?

Interstim update

2008-05-01T11:20:00.003-05:00

As they used to say of Ragu spaghetti sauce (or was it Prego?): It's in there. Last Monday, we woke up at 4:45 a.m., so we could be at the hospital by 6:00. I was still on the fence as whether to put in the permanent device, but it seemed like there wasn't any downside to going ahead (except possibly for the cost to my HMO), so I did. Unlike the initial implant, I got to be under general anaesthesia, which put me a bit more at ease. By 8:30, I was waking up in the recovery room and thinking about how great that first cup of coffee would taste.

To control the permanent device, I received the small blue gizmo in the picture. It's got a small LCD screen on the front and a plug-in antenna for communicating with the Interstim device. I place the end of the antenna over the small bulge in my tush where the device lives, hit the 'Sync' button on the blue gizmo, and if I've positioned the antenna correctly, the blue gizmo beeps and I can switch between the 4 stimulation programs stored in the blue gizmo, as well as increase or decrease the stimulation level by small increments. Cool.

The four programs stored in the blue gizmo were put there for me by the Medtronic guy, based on what worked for me during the trial period. Because the permanent set-up is more sophisticated than the trial device, it can do some additional tricks. Most notably, the permanent device can be programmed to cycle from full stimulation to no stimulation and back to full stimulation over a short period of time. This prevents the nerves from acclimating to a constant level of stimulation, which would diminish the device's effectiveness. The 4 programs on my blue gizmo were all set up this way. Unfortunately, though, this ended up being a significant annoyance, because I was feeling the stimiulation not just in nether regions, but also in my right foot. When I'd be off my feet, say at work, I could feel and even see my foot flexing and relaxing as the level of stimulation cycled up and down.

This cycling wasn't something I could control from my device, but yesterday I had the urologist's nurse Jenny (or possibly Jenni) turn it off. See, the urologist has an even cooler big blue gizmo for controlling my little blue gizmo. It looks a bit like an overgrown Palm Pilot, complete with stylus. Jenny (or possibly Jenni) taps on the big blue gizmo's screen, and it wirelessly transmits instructions to my little blue gizmo, turning off the cycling in my 4 programs. Again, cool.

The thing that's less cool is that I'm still not sure if it's helping or not. I still pee as often as I used to (maybe 15 times in an ordinary day?). I still have to go urgently. I still can't quite empty completely, even if I spend ten minutes in the can pressing my hand into my lower abdomen. I'd say the urgency is somewhat lower, meaning when I feel like I hafta go, I have about 8 seconds to get to the bathroom instead of 5. But I also feel like my bowel function has improved slightly as well, though that has at least something to do with my more regular (get it? regular?) use of Miralax (which I am pleased to be able to now purchase OTC, which allows me to use the brand-name stuff instead of the generic stuff I got when it was prescription-only, which seemed to have a bitter taste and which seemed to leave me comically flatulent).

I got my staples out on Tuesday, and by next week I'll be able to bend, stretch, and swim as much as I like. This is good, because since getting the trial device a few weeks ago, I haven't done much by way of physical activity, and I can tell: I'm a bit wobblier, stiffer, and flabbier than I was a few weeks ago.

So the jury is still out on this thing, but at least I feel like I'm close to getting back to ordinary life, such as it is/was. This is good, too, because it's finally spring, and not a moment too soon.

On the bubble

2008-04-17T19:58:00.003-05:00

Today's the 11th day of my Interstim test drive; on Monday, I either get a permanent implant or I get the wires removed. I'm still not sure which way it will go. The very helpful gent from Medtronic has taken me through maybe ten different configurations, but to my mind, there hasn't been a 50% improvement in my symptoms.

I've gone over my pee-pee journal to count how many times I was going in a day before as opposed to after, thought about changes in urgency and frequency, and with this last configuration I started yesterday, I reckon I'm maybe 40% better. I couldn't explain exactly how I come up with that figure, especially since I really can't remember what it was like to have a well-trained bladder. When I was 18, how often did I pee? Except I didn't drink either coffee (my favorite brown hot beverage) or beer (my favorite cold brown beverage) then. What, exactly, is better? For one thing, when I went in to get my staples removed yesterday, my post-void residual (the amount of pee left in my bladder after peeing as much as I could pee, as measured by ultrasound) was about 175 ccs-- about the same as it was before I got the device.

I talked to the Medtronic guy tonite, and he said that we've really tried out all the settings we could achieve with the temporary external gizmo, that the permanent gizmo could be configured in more ways, but suggested that I stay with the current setting until tomorrow evening, and then just disconnect the thing, to refresh my recollection of where I started. That makes sense to me. As much as I am attracted to the sheer niftyness of having a super-special gizmo implanted in my butt, I really only want it if it's going to work.

On the other hand, my pee-pee diary shows that I last went at 4:20, and it's now almost four hours and two beers later. Hmm.

On the other

In the news: big copays for MS drugs

2008-04-14T13:25:00.002-05:00

Today's NYT reports on the increasing prevalence of big, fat copays for expensive drugs like Copaxone, Avonex, and Betaseron. Snip:

The system, often called Tier 4, began in earnest with Medicare drug plans and spread rapidly. It is now incorporated into 86 percent of those plans. Some have even higher co-payments for certain drugs, a Tier 5.
Now Tier 4 is also showing up in insurance that people buy on their own or acquire through employers, said Dan Mendelson of Avalere Health, a research organization in Washington. It is the fastest-growing segment in private insurance, Mr. Mendelson said. Five years ago it was virtually nonexistent in private plans, he said. Now 10 percent of them have Tier 4 drug categories.

By way of an example, a woman insured by Kaiser Permanente who had been paying $20 per month for Copaxone, was asked to pay $325. Kaiser's suspended the increased copay for now, but next year she'll need to change plans or pay up. Raising copays for a few sick people means many healthier people will pay less (duh), but, as a practical matter, also means the health insurance safety net is getting smaller.

Between Rebif and the various other drugs I take for the symptoms of MS, I pay about $120 a month in copays. That's pretty easy to manage-- it's money we might otherwise use to go out to dinner or to save for a vacation, but it's not a big sacrifice. But if that went up to $500 per month, we'd be in some trouble. My wife probably wouldn't be able to go back to school for a nursing degree. We probably wouldn't be saving as much for retirement. If it went up to $1,000 per month, we'd be in serious trouble. I'd start thinking about which meds I could live without. We'd probably think about selling the house and moving somewhere substantially cheaper.

On one hand, this makes me nuts: the only way I can afford the care I need is if healthy people subsidize it, and it seems perfectly rational for you healthy people to want not to subsidize my care. On the other hand, I'm reasonably confident that I'd probably be just fine, because the quality of my life and everybody else's doesn't have much to do with how much money or stuff we have, as long as we can take care of the basics. Which, of course, is exactly what a sick person is supposed to say, because it's one of the best arguments I can think of to explain why Joe Healthypants down the hall should pay in insurance premiums twice what he actually uses in services, instead of buying himself a new snowblower.

Link to NYT.

Convalescent

2008-04-09T10:50:00.003-05:00

That's me resplendent in red sweat pants and tighty-whities, sporting my Interstim test unit. Aside from whatever benefit I get (or don't) from the device, I feel like my post-op convalescence is giving me an advance peek of what it might be like if my MS progresses in a significant way.

I'm needing significant help getting dressed and undressed, and I'm not able to provide much help taking the dogs out or making dinner. And because I just happen to have some work that's well-suited to doing at home, I'm home alone except for the dogs. I was a little weird to say goodbye to Carmen this morning as she headed off to school for the day, not intending to be back until 6 tonite. If for only a few days, I'm getting a taste of being a needy, grateful, self-conscious care-givee.

I'm incredibly lucky to be married to a natural-born caregiver. Even so, I wonder about how long she'd be able to look after me, how long her incredible loyalty would hold up. This less than 48 hours after surgery. Illness must have an incredible power to alter the dynamic of a marriage. It's obvious, I know, but it seems true to me in a new way today.

Interstim: further down the rabbit-hole

2008-04-08T14:44:00.002-05:00

I'm at work, hiding out in my office. I had the initial surgery yesterday, and today I'm wearing on my belt the garage-door-opener-sized test gizmo. I'm almost over the initial weirdness of being hooked up to the gizmo via a wire that disappears into my lower back, and the dull ache from the incision sites is fading into the background. I've got two of the wires back there, but I'm starting out with only one wire connected, and the box is delivering a very low level zap to the wire coming out of the right side of my back. The sensation from the zap is a rapid, gentle kind of tapping in my crotch. I'll receive my next instructions from the Medtronic rep tomorrow.

I spent a while thinking up a goofy lie to explain the box to any coworker who asks: I'm a product tester for a new kind of iPod, one that connects directly to your nervous system. Actually, the wire connecting my crotch to the test gizmo is iPod white, but the gizmo is decidedly not a sleek, stylish Apple invention. It's brown, with a couple dials on top, some switches and dials hidden under a removeable little door on the side, and little blinking green LED.

Bladder blather

2008-03-12T09:30:00.004-05:00

Lucky me, someone else cancelled their Interstim procedure, so I'll be getting mine April 7 instead of some time in July. That's good news, because the more I think about it, the more it seems as though I'm a hostage to my bladder.

I've been perusing some of the patient information/promotion materials I got about the device from my urologist, featuring accounts from patients who've gotten an Interstim. Many of them describe how their bladders were essentially ruining their lives, causing constant anxiety, preventing them from doing things they wanted to do, and leaving them isolated and grumpy. That sounds familiar. I spend a lot of time and energy thinking about peeing: Where's the nearest bathroom? How far away is it? How soon am I likely to need to use it? Can I make it there in time? If not, will I be able to put on a new pad? Do I have a new pad? Did I remember to leave some in this car?

Here's a frinstance: before I get the Interstim, I have to get an ultrasound of my kidneys and bladder. I'm having it done on Friday morning. The instructions are to fast for 12 hours before the ultrasound, and to drink 32 ounces of water an hour or so before going to the clinic. Drinking the water is supposed to help me arrive for my ultrasound with my bladder "uncomfortably full," according to the friendly people at the lab who called yesterday. It didn't really occur to me until after I'd hung up that I haven't really had an uncomfortably full bladder for a number of years, that my bladder tends to empty itself long before that point. So now I probably need to call back and bring to their attention that the reason I'm coming in for an ultrasound is that I'm more or less incontinent.

If this thing works, it will be very interesting to see just how different life becomes when I don't have to worry about pee and peeing.

Worm eggs for MS?

2008-03-07T11:30:00.003-06:00

I think I blogged on it a while ago, but my neurologist is conducting a teeny tiny study of whether ingesting the eggs of itty bitty worms can help MS patients. According to this newspaper article, a similar study in Argentina had encouraging results:

The eggs hatch into larvae, the size of an eyelash, that stick to the inside of the intestine. In killing the larvae, the body unleashes an extra dose of regulatory T cells, which dampen overactive immune cells. Existing multiple sclerosis treatments, all of them injections, also try to block overactive immune cells. But with the worm therapy, "instead of knocking down the bad parts of the immune system, we're pushing up the good parts," Fleming said.
....
A study in Argentina backed up that hunch. It compared a dozen multiple sclerosis patients who were naturally infected with a similar worm with a dozen worm-free patients. Over four years, those with the worms had 90 percent fewer flare-ups and brain lesions.

What's new, what's old

2008-03-05T14:42:00.005-06:00

Hello, again. I've been on hiatus for a while because over the last five months or so, I've either not really had anything interesting to say (often) or I've been too wrapped up in the business at hand to step away from it and blog (much less often).

It won't really take that long to catch up. Since last October, I stopped smoking pot and started baking and eating pot brownies, my dog developed Addison's disease and almost died, we broke a record for total snowfall in a season, and my mother-in-law was diagnosed with, and had surgery for, breast cancer.

What brought me back was this morning's visit to the urologist. Over the last couple years, my bladder symptoms (urgency + frequency) have gotten worse, although it's happened so slowly that it almost hadn't registered. Today, though, the urologist told me that he's pretty much used every pharmaceutical trick in his bag and doesn't have any new drug options for me. Instead, he said he thinks I'm a good candidate for getting a gizmo called Interstim (a.k.a. "the bladder pacemaker") implanted.

Interstim delivers a contant, mild electric charge to nerves near the base of the spine. What good will that do? The urologist explained that Insterstim fixes bladder function similar to the way a good hard smack fixes an old TV: it's not clear why it works, but it does. Here's how the process goes: First, they would implant the wires in a procedure during which I'd be sedated but awake. There are 4 wires, and they go in near some nerves at the base of the spine. After that, I'd go thru a two-week trial period during which the wires would be connected to a pager-sized control gizmo. The control gizmo can turn each of the four wires on and off independently and, I think, change the polarity of the charge sent to each wire. For two weeks, working with someone at the hospital, I'd go through different settings on the gizmo while keeping a pee-pee diary. After two weeks, they look at the results. If I've gotten at least a 50%benefit from the gizmo, they replace the pager-gizmo with a device that would be permanently implanted under the skin just north of my behind. If I haven't gotten a 50% benefit, the wires come out and I go back to my non-bionic bladder.

Cool, huh? There's a waiting list right now, so I wouldn't be able to get hooked up until July, but I told them to put my name on the list. The urologist says there's about an 80% chance that I'll see a dramatic improvement and a 20% chance that it won't do a thing for me. There's slightly larger than an Oreo under my skin, but not nearly as much as the Botox injection. And supposedly, my HMO will pay for it with minimal fussing (we'll just see about that).

So now we're all caught up. That wasn't so bad.

I don't like your phraseology

2007-09-26T10:56:00.000-05:00

In every discussion about health care reform, at every level, it's inevitable that somebody is going to use the phrase "socialized medicine," and it makes me crazy. Why are these same right-wing ideologues not up in arms about our nation's socialized education system or our socialized air-traffic-control system? Why don't we hear them taking brave, principled positions against Medicare?

Disaboom: New commercial site for disabled community

2007-09-26T10:44:00.000-05:00

The other day, I did something I can't really remember doing before: I actually clicked on a banner ad, something for a site called Disaboom.com. Disaboom, which will premiere this weekend, promises to be "the revolutionary solution to the difficulties faced by an untapped market of more than 650 million adults worldwide living with disabilities and a valuable resource for their caregivers, families, rehabilitation providers and employers."

I'm not sure how I feel about being characterized as a part of "untapped market," but the site appears to offer disease-specific medical information and discussions, plus news, reviews of products and services, job listings, and classified ads. Something to watch, I guess.

Fla. pardons MS patient

2007-09-21T10:14:00.000-05:00

A disabled MS patient in Florida was convicted on drugs charges after forging prescriptions for large quantities of pain meds. Prosecutors argued he must have been selling the drugs because of the quantities involved, but presented no evidence of actual sales. A judge bound by a mandatory-minimum law sentenced Richard Paey to 25 years in prison. After 4 hours in prison, Governor Charlie Crist pardoned Paey. Snip from the AP article:

Paey and his supporters have argued that he never distributed any drugs — that he purchased and consumed huge amounts on his own for constant pain. Paey has been debilitated by a 1985 car accident, suffers from multiple sclerosis, and uses a wheelchair.

He refused to accept a plea because he didn't want to be branded a drug dealer.

The case illustrates flaws in the law and how people who are dependent on strong pain medication can get tangled up in the government's effort to combat drugs, Paey's attorney, John Flannery of Leesburg, Va., said. Because of mandatory minimum sentences, the judge in Paey's case had no choice but the 25-year sentence after he was conviction.

The board — Crist, State Attorney Bill McCollum, Chief Financial Officer Alex Sink and Agriculture Commissioner Charles Bronson — voted unanimously to approve Paey's release, overriding the recommendation of the parole commission that his application be denied.

State Attorney Bernie McCabe, whose office prosecuted Paey, said he had no reaction to the news.

This kind of thing really makes me crazy. There's lots to rant about in this story--our insane approach to drug policy and crime in general, limitless prosecutorial discretion--but today, I choose to rejoice, because after everyone else in the system failed Richard Paey, the last little safety valve in the system actually worked. Huzzah.

Doubling down: a second mortgage

2007-09-14T10:58:00.000-05:00

Tuesday morning we'll be at the credit union to close on a home equity loan for home improvements. After aborting a more expensive plan last fall, we've been working on a more limited plan for a small covered deck and some new windows. It's something we've known we'd need to do almost since the moment we moved in almost 5 years ago, and it's going to be a big improvement, but it makes me a little queasy just the same.

With Carmen out of work and back in school, we're doing fine, but the margins for error are going to be tight for a while, especially until we finish paying off the car in March. I just can't really think of a better way to do it. We can't really put it off longer, for various reasons, and I'm not sure there's a good way to do it for less money. Until Carmen gets out of school, I guess we've got to keep all of our eggs in one slightly disabled basket.

Biogen's MS simulator

2007-09-05T15:28:00.000-05:00

No, really. Snip from the press release:

With Step Inside MS, participants interact with cutting-edge media and technology to simulate a realistic approximation of the MS patient experience. Accompanied by a trained attendant, participants enter a small theatrical simulator that houses a treadmill where they will be outfitted with goggles and sensory gloves so they experience many of the symptoms that people with MS often encounter, including unpredictable loss of muscle control and coordination problems, numbness and tingling in the hands, hot flashes, and visual and cognitive impairment such as memory loss and decreased verbal ability. The simulation also illustrates social hurdles that a person with MS often faces.

If it wasn't already 3:30 in the afternoon, I might have been able to come up with a decent joke for this, but it's that time of day when I get a little dopey and distracted by the burning sensation in my butt/thighs. Does the simulator simulate that? How about bladder trouble? What about depression or loss of sexual function?

I guess the point is that if you created an accurate MS simulator, nobody would show up to experience it.

Dad and I are okay.

2007-08-30T09:40:00.000-05:00

Is blood thicker than water? Hard to say, especially when the water is as green and goopy as the water at the lake this year. Thickness aside, blood does allow one to leave the door open while peeing, and both dad and I do a lot of that.

I think it's probably just his 65-year-old prostate, but dad does complain about having to pee often and urgently. This means not having to explain why the cooler with the bait in it also contains an empty cottage cheese container, or why I sleep with one next to my bed at the cabin. Actually, I came close to telling my dad that I've been wearing Depends Guards for Men for the last 5 years and that I highly recommend them. Why didn't I? Well, I told myself that he doesn't sound quite as bad off as I am, that he would never put himself in diapers, that it would complete his journey to geezerness in the eyes of his wife, who's twenty years younger, and god forbid his two tweener kids should find out. But it was hard to hear him talk about how he, like me, finds himself avoiding social situations in which he might find himself unable to get to a bathroom. Still, there are probably worse things to regret about one's relationship with one's father.

Usually, when dad's up at the cabin, he seems to do a lot more work than recreating. Last weekend, though, I was proud how little work he did and how much time we spent sitting in the boat together. Fishing was good, and we spent an hour filleting crappies after a couple glasses of wine. I think both of us realize the extent to which we are cut from the same cloth. At the same time, I think we both realize the extent to which I, as a result of MS, cannot live a life that looks like his: I'll probably never be able to live with the self-sufficiency and independence that he and I both seem to prize.

Me and dad, up north

2007-08-24T11:42:00.000-05:00

I'm just recently back from a lovely week at my dad's cabin up north, a week of fishing, reading, and gin and tonics. Today, I'm going back. This time, though, it'll just be me and my dad.

He bought the place maybe 8 years ago, and has put a lot of time into making improvements (hooking up water and electricity were the big ones). But he seems to spend most of his time up there alone. His tween-aged kids aren't crazy about the place, and my step-mom gets there maybe once a year. I talked to him a couple days ago when he was home alone between his usual duties as chef and chauffeur, and he sounded just plain lonely.

He's a kind of solitary person, like me, and I get the sense that he's increasingly afraid of getting old and dying. It's not something his second family can really relate to (my step-mom's in her early 40s), but I feel like I might have some insight into what he's feeling.

So we'll go up north, do some fishing, maybe install a new screen door, probably drink too much, and maybe continue to become friends. It's good for me, too.

This glass is half full.

2007-08-06T09:13:00.000-05:00

Sure, it sucks to be diaper-dependant at the age of 36, to be allocating money to your section 125 account for the substantial amount you will spend over the course of the year on Depends, to fret over whether to pay a few bucks extra to get them shipped from Amazon instead of going through the grocery checkout line with them.

On the other hand, when, on occasion, you roll over in bed just a little too far toward your sleeping spouse, such that when you wet the bed, as you do maybe 1 out of every 3 nights, thereby actually wetting the bed and not merely the waterproof pad on which you sleep , consider this: the perfect cleaning product for the task is an enzymatic spray that is available at your local pet store, and the packaging of that product features a sheepish-looking beagle, not a picture of the sheepish-looking 36-year-old man that you see in the mirror.

Hey, look at that

2007-07-31T13:42:00.000-05:00

Factoid: the NYT story on a recently published study about genes linked to multiple sclerosis (with the somewhat Onionesque title "Advances Cited in Research on Multiple Sclerosis") is currently #5 on the site's list of most-emailed stories. More support for the notion that everybody knows someone who has MS or knows someone who knows someone who has MS. Again, I ask you: Why haven't we been able to find our Michael J. Fox, our attractive, young spokesperson, who raises the disease's profile a couple notches?

One mystery solved

2007-07-30T12:28:00.000-05:00

Last Wednesday, I started feeling really crappy: achy, tired, and a little dizzy. It was a familiar feeling. I'd last felt it the day a few years ago when I'd mistakenly taken my bedtime pills in the morning. This time, though, I was certain that I'd taken my AM pills (after the last med mix-up, I bought a pill case of an entirely different color and design for my AM pills). The only thing I could think of was that I had probably missed a couple days of amitriptyline after forgetting to pick it up at Walgreen's.

Well, Friday morning, I figured it out: yes, I had correctly taken the pills from the AM pill case, but I had mistakenly portioned out the elongated, white nefazodone tablets, instead of the elongated, white Provigil tablets. So I wasn't getting the Provigil boost, and was instead giving myself more than double the correct dose of nefazodone and getting most of it in the morning. So I sorted out the right pills, and started feeling better almost immediately, although I woke up with really sore hips on Saturday.

It sure would be helpful if the makers of ordinary-looking white pills would give them some kind of obvious distinguishing mark, like a wacky shape or some kind of color. Flomax is good: orange/green capsule; Cymbalta is good, too: blue/green capsule. But Provigil kinda looks like nefazodone, which kinda looks like Tylenol. Baclofen and amitriptyline are both ordinary-looking round pills. I guess I can understand why the generics might forgo fancy shapes and colors, but Provigil? That stuff is expensive. My HMO pays good money for the stuff. You'd think a Schedule IV drug would have some flashy color or something. Oh well.

By the by, you've probably seen the articles about the discovery of three genes that are linked to MS. See the WaPo article here. According to the Post, these findings give you and me "new hope." I think that's hyperbole, of course, because this kind of study seems more to suggest how much we don't know about MS. After all, the Post article quotes one of the investigators as saying, "We suspect there will be dozens, perhaps hundreds of gene variations associated with MS."

Speaking of new hope, I have officially concluded that I received no benefit from the Botox procedure. No change in urgency, emptying, bedwetting, dribbling, or any of the bladder-related indignities. Too bad. On the other hand, I got to see what the inside of my urethra looks like, so it's not a total loss.

Blushing at history

2007-07-23T13:08:00.000-05:00

Spent a lovely weekend at my dad's place. Did a little fishing, a little grilling, and a little just sitting and watching: watching the dogs (our 2, plus my brother's 2, plus my dad's 1), watching the hummingbirds at the feeder (surprisingly aggressive, chatty things), watching my 65-year-old father trying to get a wireless network functioning, watching my 13-year-old half-sister change from a cute, dreamy little kid into a startlingly beautiful, startlingly bright, er, woman, I guess.

About a month ago, Dad and brother made a trip out East to see Uncle Crabby Weirdo and to recover some materials for the family archive from the Ancestral Home in eastern PA. I would have liked to go, but work kept me at home. Fortunately, they returned with tales of Uncle Crabby Weirdo's scary house crammed full of crap and his diet of frozen pizza and microwaveable "entrees." The real jackpot, though, was the cache of old letters sent from my grandma to my grandpa on board various cargo ships at exotic ports of call (Port Said, the Canal Zone, Jakarta, Karachi, etc.) and the telegrams and letters from him to her, first to Miss S.R. on Adelphia Street in Brooklyn, then to Mrs. G.S. at the Ancestral Home.

The letters and telegrams filled a large duffle bag purchased especially for the purpose of bringing them home. We sat around reading excerpts from letters, from V-Grams sent during WWII, from Western Union telegrams, just scraping the surface but finding little jewels--in my grandma's functional, legible script, and in my grandpa's indecipherable but gorgeous fountain-pen scratchings--that hinted at some great stories. Confirmation that Uncle Crabby Weirdo was conceived out of wedlock. Grandpa insisting that he loved her and would have married her even if she wasn't pregnant. Grandma's chuckling account of my dad's insistence at age 2 on running around the neighborhood naked from the waist down. Grandpa's fear that he would never amount to anything, his longing to be home with his family. Everyone agonizing over money and the war. Good Lord, discussion of birth control and some startlingly raunchy bits of postal erotica, which someone had tried in vain to obscure with ink scribbles.

The photos were icing on the cake: rowing a wooden boat at Harvey's Lake, kids displaying little bitty fishes, picnics, gathering huckleberries, presents under the Xmas tree, and some cheesecake shots of grandma topless on a beach.

"Grandma topless." Just try saying that out loud; it won't come out, will it?

Fishing season ends, self-pity season begins

2007-07-05T10:13:00.000-05:00

It had been maybe a month since I'd last been out in the boat, so I'm not sure why I expected it to fire right up or why I actually took the can of starter fluid out before hooking up the trailer. Anyway, I left work a couple hours early on Monday, intending to spend a few quiet hours on the lake. I've been working too much lately, coming in on Saturdays and such, so I was anxious to get out on one of the few cool days we've had around here.

Of course, the motor wouldn't start. I think I might know why, but I'm feeling less like fixing the situation and more like pouting about it for a while. After spending ten minutes cranking the starter (electric, thank god) and fiddling with the gas line, the mixture, the choke, I had to haul myself up on the dock and stumble back to the car and get the boat back on the trailer. Which usually isn't a problem, but somehow becomes another 15 minutes fighting with the boat, shoving, tugging, cranking, while a woman and her son skip rocks on the lake from the dock. By the time the boat is finally on the trailer, I'm fully discombobulated, and steady myself against the car as I try to get from the trailer to the driver's seat, and the woman and her son are looking at me, probably trying to decide what particular chemical I've been abusing.

In truth, I don't think I'm quite ready to give up on one of the few activities that still provides me with some transcendent moments of bliss. I'll probably get the boat running when the weather starts to cool off a bit and, in a few years when my wife's new career as a nurse is well underway, maybe we'll have enough scratch to replace the leaky piece of shit with something newer and nicer. For now, though, I choose to stay a little bitter about this small indignity.

Yuk: working on a weekend

2007-06-09T11:06:00.000-05:00

It's a gorgeous day outside and people are absolutely mobbing the farmer's market, so parking is a hassle. But I don't get to browse the produce and people-watch, because I am here to work. It's crunch time at the office, and I've got some serious work to do. Which I am not currently doing, seeing as how I'm blogging about how much I resent being here. Which means I will be here that much longer.

I'm a little sleepy, a little dopey, and my thighs are burning up after an hour and a half in my desk chair. Maybe it's worse because it's Saturday, or maybe it's because I'm wearing shorts and the upholstery of the chair is right up against my skin. It helps that on a Saturday in the office the radio is just a little bit louder and the clothes just a little more comfy. Still, this is the kind of thing I worry about: sure, I can keep up on a regular workday, and at the end of the day, especially on Friday, I'm thoroughly whupped and cranky and ready for a bit of R & R over the weekend, but can I still keep up with the workload when I have to get up on Saturday and drag my sorry ass to work? Fortunately, this probably won't happen next weekend or the weekend after that. But it does make me think.

OK, back to work.

Especially for Stephen: More about my urethra

2007-06-07T10:50:00.000-05:00

Well, like most of my run-ins with the medical establishment, getting Botox injected into my sphincter wasn't as bad as I feared. It will be a couple weeks before I'll be able to tell if it helps.

A few hours before I was due to have the procedure, I was still waiting to hear back from the HMO about whether they'd cover it or not. I'd called them as soon as I scheduled the procedure, but played phone tag for a few days until yesterday, when I finally got hold of the woman who is apparently my "case worker." At first, she said they would not pay, because as of their most recent review of the literature (last March) the procedure was still considered experimental. So I figured I'd have to call off the procedure and wind my way through the appeals process, and I told her so. She told me she would double check with Dr. So-and-so, and would call me back.

As soon as I hung up, I dialed the urology clinic to ask if they could give me any ammunition to support the necessity of the procedure, but the PA I talked to acknowldged that they knew some insurers--particularly Medicaid--took this position and there wasn't anything definitive in the literature. At this point, I was also cruising PubMed for anything recent on the topic, but without real success: just a review published a little less than a year ago, with an abstract that didn't really say anything.

At that point, my case worker from the HMO called back and told me to go ahead, keep the appointment, and they would pay for it. She didn't exactly say why, but she said she'd be contacting my urologist so that they could get more current information about the procedure. She offered a nice apology--We're sorry, we promise we'll do better next time--and called me "Kiddo." I imagine this woman probably feels like she knows me pretty well, knows all about my MS, who I'm seeing and what drugs I''m taking, and why.

So the procedure took about a half hour. Strip nekkid, get on the table, put your legs in the stirrups, and wait for the docs while the nurse sponges iodine all over your bits. Then, a little bit of lidocaine in the pee-pee, you might feel a little chill, then a clamp is gently attached to the family jewels, and you stare up at the ceiling while you wait for the doctor to show up.

Twenty minutes later, here comes Dr. A with Dr. B in tow. Dr. B is a resident and he'll be doing the procedure. Between my elevated knees, I see young Dr. B fiddling with the thing that will be shoved down my urethra like a sharp stick through an Oscar Myer wiener at a cook-out. At this point, my pulse escalates from the already elevated dumpadumpadumpa to hummingbird-speed wheedleeedleeedle, and I blurt out, "Oh, that's just great," and immediately regret it. Dr. B is unfazed and tells me he's inserted catheters maybe 600 times and I won't feel a thing.

And God bless him, Dr. B is right; I didn't feel a thing. Dr. A points at the monitor and shows me what the inside of my urethra looks like: it looks like the inside of a water slide, except it is a sort of blotchy pink and there are no screaming half-naked children whooshing through. When, a few seconds later, we get to the sphincter, I shut my eyes.

Dr. A is now addressing Dr. B, telling him where ("there, right at twelve o'clock") to do the injection, and a couple seconds later, I feel a jab somewhere where I have never been jabbed before, and I jump a couple inches off the table. It's dulled by the lidocaine, though, so it's like when the dentist puts the giant needle of novacaine deep into your skull. They do this a couple more times, then suddenly I feel a trickle of something run down my bottom, and the catheter's out, and the doctors are out the door. Somebody brings me a few towels, and then I'm left alone to wipe off the iodine, dress, and go home. I eat a big piece of carrot cake in the car while my wife drives me home through rush hour traffic.

Yes, afterward it hurt when I peed, hurts a little less today. Last night, I remember that somebody said something about getting a dose of Cipro to make sure I don't get an infection, but somehow I left without it. All in all, sorta unpleasant (like going to the dentist, except you're wearing no pants and everybody's attention is fixed on your crotch), but less unpleasant than the hated pressure flow study (smaller catheter but no anaesthetic, plus the butt-plug and electrodes).

If it works (how do I know if it's working?), I'd do it again.

Bad idea

2007-06-06T11:28:00.000-05:00

Going on a fishing trip off the coast of Iran is like going deer hunting in the DMZ between the Koreas.

Big day?

2007-06-06T09:47:00.001-05:00

Today, I get my Botox injection. Maybe. I'm still waiting for my HMO's Care Management Department to tell me whether they'll pay for it. I guess anything involving Botox gets extra-careful attention. Because, you know, it might not really be about improving my bladder function, it might just be costmetic. Because, I don't know, I have a wrinkly urethra?

Botox on tap

2007-05-31T16:27:00.000-05:00

I called my urologist and scheduled the Botox procedure for next week. As it turns out, I won't be getting it in the bladder detrusor, but in the, uh, pee schincter (just now, I can't remember what you call that gizmo). The immobilization of the bladder detrusor is for those who are self-catheterizing, because you can't pee without the detrusor. I'll be getting the sphincter muscle immobilized, which won't do anything to stop the detrusor spasms that send me running for the potty. What it will do is stop my pee sphincter from closing up when I try to get my detrusor to contract, permitting me to empty properly.

I need to get clearance from the HMO, but the urology department reports they haven't had any trouble getting my HMO to pay.

What's really in my fridge?

2007-05-25T09:02:00.001-05:00

I like to cook, and like a lot of foodies I know, my fridge and freezer are littered with little bits of the miscellaneous ingredients that make for interesting food creations and experiments. In the freezer, there are little bags of assorted nuts in various shapes: filberts, pecans, walnuts, almonds (sliced, slivered, whole, raw, roasted and salted). There's a bag full of fist-sized lumps of homemade chorizo, a smallish baggie of keffir lime leaves (essential to a good Thai-style curry), bread yeast, some beef short ribs for soup. The door of the fridge contains the usual assortment of condiments: mustards, jellies, pickle relish, homemade maple syrup, olives, pickles, Worcestershire sauce, curry pastes.

The fridge door also contains a dozen bottles of assorted Asian staples, all of them picked up at one of our local Asian groceries. I love wandering around these stores and sifting through the endless varieties of sauces, noodles, teas, fungi, and what-have-you. I don't really buy the exotic stuff, but I do keep on hand some of the basics: Thai fish sauce, a couple kinds of soy sauce, oyster sauce, hoisin sauce, chili sauce, black bean paste. All of this is imported. I haven't really paid attention to where it comes from.

This morning, I laid in bed listening to a story about the growth of foods imported from China and the questions about the safety of some of that food. It's not just pet food, of course, it's people-food, too, and it's not always possible to tell when you're consuming imported food. This is because in addition to finished products, China exports a lot of ingredients used to make the stuff we buy. FDA inspects only a tiny fraction of the foods we import. Without going into detail, it was a little spooky.

So I'm thinking about placing more importance on buying food from closer to home, even though it might cost a bit more. I can't give up oyster sauce or curry paste, but there has to be a domestic source for the stuff. That might not guarantee the safety of the product, but maybe it improves my odds.

Link to NPR story.

Michael Moore's new movie

2007-05-23T14:59:00.000-05:00

So Michael Moore's new movie Sicko is being favorably received in Cannes. Sicko is about how bad the American health care system sucks and why it is that we seem to like it that way. Snip from the LAT:

"I don't have to convince the American public that there is something wrong with our health care system. I think most American people already feel that way," said Moore, who enjoys great coverage himself through the Directors Guild of America. "That's why I don't spend a lot of time in the film on the healthcare horror stories. I wanted to propose that there's a different way we can go with this. I'm hoping that the American people, when they see this film, will say, 'You know, there is a better way, and maybe we should look at what they are doing in some of these other countries..."

Link.
I appreciate Moore's viewpoint, but not his confrontational approach. I didn't see Fahrenheit 911, not because I think the present war is good public policy, but because I think instead of starting a conversation at the political center, the movie just added to the shouting match already in progress between the people at the fringes. So when I heard that Moore was making a movie about an issue that affects me deeply in a very personal way (which is not to suggest that I consider terrorism/war/foreign policy/everything else to be a garnish on the garnish of our great political ham), I was nervous, even though I'm all for single-payer and figure he is, too.

The LAT reports, however, that Moore has, in Sicko, forgone some of the confrontational episodes that marked his other films. Snip:

"When people say there is no confrontation in this movie, to me there is a big confrontation in this movie," Moore said in an interview here. "Because I am confronting the American audience with a question: 'Who are we, and what has happened to our soul?' To me, that's maybe more confrontation than going after the CEO of Aetna or the CEO of Pfizer." The reason Moore feels compelled to ask this "Sicko" question is because, he feels, the country unthinkingly settles for substandard and ruinously expensive medical treatment, especially when compared with countries with universal healthcare.

I'm looking forward to seeing Sicko, but mostly, I'm looking forward to an invigorated popular conversation about the issue. Hold the chest-poking, though, please.

3d ventricle?

2007-05-23T10:10:00.001-05:00

These are coronal views from MRI head-shots last fall. I think the third ventricle is the little opening indicated by the red circle. Hard to believe you could tell much about the size of the little guy from a sonograph, but I'm not a professional. I've also got some MRI films from way back (1993?); I wonder how they'd compare.

Thinking about grandpa and physical therapy

2007-05-22T14:14:00.000-05:00

One of the MS-related abstracts last week was something about multiple sclerosis and Guillan-Barre Syndrome. I don't remember anything about the abstract, but it got me to thinking about my late grandpa, who had GBS and died when I was a freshman in college.

He was an interesting guy, from the little I know of him. He was born in Sweden and, along with a friend, ran away to sea as a kid, in part to escape a troubled family life (troubled like Dickensian troubled, I guess). Eventually, he became a ship's captain of, among other vessels, liberty ships during WWII. On day, maybe in his fifties, he woke up while he was at sea and couldn't move. That was the end of his working life.

As a kid, I knew him as a frail-looking old guy who shuffled around a big old house in old-guy Hush Puppies and spoke heavily-accented English, which made him hard to understand. I can remember picking up the phone as an adolescent and being so unable to understand him that I thought it was a crank call. He had a passion for gadgets, mainly photographic or electronic, and liked James Galway and Miller High Life. He didn't smile or laugh much, except occasionally at the dog, an Airedale named Bingley (there were a few different dogs who played the role of Bingley). I think he was probably an alcoholic at some level.

He had about a gazillion photos he had taken during his life at sea, of places he had been and ships he had sailed. I have a copy of his picture of the Steel Maker in my office. There were plenty of pictures of him, too: a trim but muscular, stern-looking guy in a uniform, who looked like someone not to be fucked with. I remember him talking about the time he had a lion or tiger or something like that on the ship in a cage as cargo, and the lion or tiger got out of the cage and jumped overboard in the middle of the ocean.

If he was still around, I'd like to think that I would have some kind of insight into who he was, how his life had been changed by his illness, what it meant to go from sailing around the word to tending to the geraniums hanging on the porch.

I got a little taste of that feeling at my last physical therapy appointment. The thing about physical therapy is that the exercises prescribed for you will do one or both of the following: 1) make you intensely fatigued, because the whole point of PT is to find those motions that are most difficult for you, and 2) make you feel like a big sissy, because you know that the exercise you are supposed to do is something that most people do every day, maybe all day long, and think nothing of it.

Actually, PT is going pretty well. I think my therapist is very smart and conscientious, and she has been very adept at zeroing in on my weaknesses and modifying exercises if necessary. The problem is finding the stamina to do my exercises and all the other things I must do or enjoy doing. During the work week, do I do them in the morning before work, such that I arrive at the office already pooped out, or do I try to do them after work, when I've already burned most of my energy for the day and would really prefer to just veg out in front of the TV? The answer is, I do the exercises when I can, in the morning with a cup of coffee, during the work day while sitting at my desk, and I do them in the evening while watching the cast of Grey's Anatomy struggle with their screwed-up lives. I don't do them as often as I should, but I do what I have time/energy for, and I think about what it will be like in the future, when and if it becomes my full-time job to try and take care of myself and possibly the geraniums hanging on the porch.

Neuropsychological impairment and the 3rd ventricle

2007-05-16T10:24:00.000-05:00

In today's batch of MS-related abstracts from PubMed (which, by the way, you can get as an RSS feed, which I do) reports that the width of the brain's third ventricle, as measured by transcranial brain sonography, has a "good correlation" to cognitive impairment in MS patients. Here's a link to the abstract.

I've never had a transcranial brain sonograph, but I've got some relatively recent (6-9 months old) MRI images. I wonder what my third ventricle looks like- maybe I'll try to post a picture that shows my third ventricle. Unfortunately, the abstract doesn't really say whether it's larger-than-normal or smaller-than-normal ventricular width that correlates to cognitive impairment, so I'll probably just end up torturing myself unnecessarily, but hey, that's what science is all about, right?

Dazed and bemused

2007-05-14T15:22:00.000-05:00

This morning, I was so pleased to have remembered my 9:00 am PT appointment and to have actually made it there on time, notwithstanding crappy traffic, that I stopped at Whole Paycheck and picked up a box of spicy tuna rolls. A couple hours later, though, I started feeling unusually sleepy and realized I'd skipped my morning meds: Provigil and Cymbalta. Drat. Too late to take the Provigil, I think, and no Cymbalta in my desk-drawer minipharmacy.

I really, really like the Provigil, and when I forget it, I remember how dopey, listless, and bummed I felt without it. The cash price for 200 mg Provigil tabs at Walgreens is $9 and change. So help me God, if I lose my insurance for some reason, I will take to sticking up liquor stores if I have to so I can get my fix.

Three awful weather words for May

2007-05-13T20:45:00.000-05:00

"Near record highs."

More good news on Botox for bladder issues

2007-05-11T09:30:00.000-05:00

New research shows Botox injections in the bladder detrusor remain effective after multiple injections. My urologist has mentioned this as an option a couple of times, and I'm thinking that I might give it a go some time in the not-so-distant future. My pee-pee problems are still pretty manageable, but I have noticed that things got a little worse over the last year or so. I'd say there's been a 25% decrease in the time between "I gotta go" and "I seem to be going." According to the study, participants receiving Botox got a mean maximal cystometric capacity increase of 144 ml. That's about half a beer, right?

Link to abstract.

Another go at physical therapy

2007-05-04T09:56:00.000-05:00

I went back to the HMO physical therapy clinic on Wednesday afternoon, having been told that the HMO would not pay for a second visit to the University Hospital's PT clinic to complete an evaluation. The HMO's PT clinic is, of course, all the way on the other side of town from where we live, so it takes 30-45 minutes to get there, depending on traffic. It's at the edge of the sprawltastic land of shopping malls and big, big box retail, and it's a part of town that I just don't have any reason to go to.

I'd asked to see the therapist who had the most expertise with neurological rehab, but one of the first things out of J. the therapist's mouth was that next time, I'd be seeing a different PT, one who has more neuro experience, and, in fact, used to work at the University Hospital's PT clinic. Right off the bat, J. seemed to be aware that I'd seen someone at the University Hospital PT clinic, and that I'd wanted to go back. J. had read the notes from my visit to the other clinic, and said a few times that they hoped I'd give the HMO clinic a shot, but that if I thought after a few visits that I wasn't getting what I needed, they'd support my request to go back to the University Hopital's PT clinic. That seemed reasonable to me.

So we did some basic strength and balance testing. As at the U's clinic, J. decided I had some definite weaknesses in my legs: dorsiflexion of the feet, esp. on the left; hip abduction on both sides; and whatever you call it when, from a seated position, you rotate your leg and bring your left foot up towards your right knee. We also did some balance stuff, which was okay with my eyes open, but went to crap once I had to close my eyes.

I left the office after 45 minutes with three more appointments set up with V., the other therapist; a printout with some exercises to work on strength and balance; and a realization that things had gotten decidedly worse for me, strength and balance-wise, since my last visit to PT. I also got a free pass to the huge gym complex at the building where the HMO PT clinic is located. It's on the wrong side of town, but it has this neat donut-shaped pool with a strong current in it, and when I last went to PT, I really enjoyed bobbing up and down and walking around and around against the current. I'm thinking about dashing out there this afternoon.

Rituxan looks good in Phase II

2007-05-01T14:59:00.000-05:00

Just read a Reuters story reporting on promising results of a Stage II clinical trial of Rituxan, a drug developed for treating lymphoma:

The number of lesions at weeks 12, 16, 20 and 24 was statistically far lower in the Rituxan group. At week 24, the total number of lesions was reduced by 91 percent -- to an average of 0.5 per patient in the Rituxan-treated group, compared with 5.5 lesions in the placebo arm of the trial.

"In addition, the proportion of patients with relapses over 24 weeks in the Rituxan-treated arm was 14.5 percent compared to 34.3 percent in the placebo arm," representing a 58 percent relative decrease, the drugmakers [Genentech and Biogen] said in a joint release.

Link.

More data on Tysabri: MRI outcomes

2007-04-25T09:13:00.000-05:00

New data indicate that Tysabri reduces both quantity and volume of lesions showing up on MRI examination, as compared to placebo. Here's a link to the abstract.

I wonder how that compares to the CRABs.

A craptacular weekend

2007-04-23T08:31:00.000-05:00

TGIM. The weekend began nicely enough. Friday was beautiful, and I took the day off. My in-laws had come to town to help us with the demolition of our old, rotten 3-season porch. I had promised myself not to pick up a crowbar, but intended to see that those wielding crowbars were properly fed, etc.

The dumpster arrived late Friday morning, and God bless 'em, my sixtyish in-laws went right out and started taking out the window, pulling off the siding, and so forth. I made lunch, did the dishes, and looked after the dogs, and that was fine.

On Saturday, we'd asked a couple friends to come over to help, but before they arrived, my wife and her dad were out wrestling with the deck. It was sunny and warm, and I thought I'd go out and help for a bit before the heat of midday. Bad idea: after 20 minutes trying to convince some decking screws to come out, I was bushed and barely able to stand or walk. That pretty much set the tone for the rest of the weekend, which I spent wobbling around trying to get a few things off my to-do list, at the same time being frustrated that everyone but me was steadily moving the old porch and deck from the back yard to the dumpster in the driveway. Even my mother-in-law was outside swinging a sledgehammer around.

The culmination of my weekend was my unsuccessful effort to get out in the boat on Sunday to do some fishing and sulking. I spent a half hour at the landing trying to get the motor running, then had to get the boat back on the trailer. Later efforts at home to get the thing started also failed, leaving me feeling like I had burned up an entire sunny spring 3-day weekend without managing to accomplish either work or recreation. I am now relieved to be in my office at my computer, at least getting a bit of blogging done.

My in-laws are just about the nicest people on Earth, but I can't help but wonder what they think of their increasingly disabled son-in-law. While they were no doubt pleased to see their son-in-law graduate from law school and find gainful employment, I imagine they must worry about what the future holds for him, and for their daughter, who must increasingly take on the role of caregiver.

Study: More GA is better

2007-04-17T10:20:00.000-05:00

A recent study found that doubling the dose of Copaxone resulted in a 38% drop in enhancing lesions when compared to the current 20 mg standard dose, though injection-site reactions were worse. Take two, they're small.

Link

Study: Tysabri reduces MS vision loss

2007-04-17T10:07:00.000-05:00

Forbes.com reports that a new study finds Tysabri (which the report describes as "controversial") reduces vision loss by almost half. Snip:

"Vision loss is probably one of the most disabling things that happens to people with MS," said lead researcher Dr. Laura J. Balcer, an associate professor of neurology at the University of Pennsylvania School of Medicine. "The exciting thing is, first, that we now have an eye-chart test that can pick that up and can show if treatments help vision. Second, this particular drug appears to help prevent vision loss."

I haven't had much noticeable vision trouble, though I remember several years ago I had a bit of vision loss in my right eye when I got overheated. Seems like it mostly resolved after a month or so.
Link.

Managing managed care: PT

2007-04-11T09:12:00.000-05:00

I've been covered by a local HMO for the past 4 1/2 years, and for the most part, I'm a satisfied customer. I've have been disappointed, though, with the HMO's physical therapy services. Since 1999 or so, I've encountered PT three times.

The first time, I went on the recommendation of my neurologist. This was shortly before I started to feel like MS had significantly affected my life. I went in for an evaluation, and got a workup that took a couple of hours to evaluate strength and balance, including a spin on a computerized gizmo that evaluated my balance. They prescribed some exercises for me, which I nibbled at for a few weeks and then forgot entirely.

The second time was with a PT who works for my current HMO. The PT, who has a Ph. D. and who I'm pretty sure is the head of their clinical PT department, spent maybe a half hour evaluating muscle strength and tone in my legs, then prescribed some exercises, including some stuff I could do in the pool that is conveniently located in the same building as the PT office. After the initial visit, I came back maybe a dozen times. In the subsequent visits, the PT would spend 15-20 minutes chatting with me while he did some things to stretch out my hamstrings, and then I'd go down to the pool and work out there for another 20-30 minutes. After a dozen visits or so, the HMO told me they wouldn't cover additional visits because they had determined I was only getting "maintenance therapy" (i.e., therapy that was intended to prevent further disability), which they don't cover. So I stopped going, and didn't think much about it.

Then, maybe a year and a half ago, both my MS neurologist and my pain clinic neurologist, started to talk during my visits about how I might benefit from additional PT. I told them that I'd had some PT from my HMO, but that I didn't think I'd gotten much out of it. Both of them suggested that I try to get my HMO to cover an evaluation with a PT affiliated with the local university hospital. They said they'd had some good experiences with patient getting PT from the university hospital folks, so I contacted my primary care doc, who said it seemed like a good idea, and put in a request for a referral.

The "care management" department at the HMO, though, refused to allow me to go to an outside PT, because they said they'd talked to the in-house PT folks, who said they they thought they would be able to provide appropriate care. So I told my pain clinic neurologist this, and he said, Well, you're entitled to get a second opinion on the program you got from the HMO PT, so we'll get you in to the university hospital PT clinic for a second opinion. After initially denying a visit to the university PT clinic, the HMO approved one visit for a second opinion.

Three weeks ago, I went to the university PT clinic. They spent an hour doing a careful evaluation of muscle strength and tone, and did some initial evaluation of my balance. Based on that initial evaluation, the university PT said she'd like me to come back for another visit to put me on the computerized balance-testing gizmo. She knew I'd only been approved for one visit, though, so she said she would contact my HMO, explain the situation, and obtain authorization to complete her evaluation.

A week ago, the university clinic PT called to say she'd spoken to the nurse who works in my HMO's care management department, but that the nurse had refused to authorize another visit. The PT explained that she thought the care management nurse had been unusually negative about a second visit, but suggested that I talk to my primary care doc.

So I called the primary care doc's nurse, explained the situation, and asked to have my doc call me back. My primary care doc called back the next day. She said she'd looked at the initial information from the university clinic PT, and gushed about how the PT had written an "awesome" 6-page note detailing her findings thus far and her intentions for further evaluation. My primary care doc told me she thought it made a lot of sense to send me back to the university clinic PT to finish what she'd started, especially because she was so impressed with her work so far.

Yesterday, my wife had an appointment with her primary care doc, who happens also to be my primary care doc. Our primary care doc reported that her request to send me back to the university PT had been denied, and that she was somewhat surprised by this decision.

So today, I'm trying to figure out what to do next. On one hand, I'm pretty sure I have the right to appeal the decision to deny additional visits, and I know that my two neurologists and my primary care doc would all support going back to complete the university clinic PT's evaluation. On the other hand, though, I'm pretty sure I'm only legally entitled to go outside the HMO for care if the HMO is unable to provide care that is medically appropriate, and the HMO seems pretty sure its PTs are just fine.

The way I see it, I have a few options. First, I could step up to the plate and challenge the denial, mustering whatever arguments I can come up with, and generally being a squeaky wheel. Second, I could go back to the HMO's PTs for a fresh evaluation and exercise program, and then ask for a second second opinion, which would permit me to go back to the university clinic folks one more visit and hopefully finish what we started. Or third, I could bide my time until this fall, when I'd have the opportunity to switch to an HMO that uses the services of the university clinic PTs.

The first option sounds like it could require a lot of energy--phone calls, letters, parsing the insurance contract--with an uncertain chance of success. The second option is probably the path of least resistance, though it galls me to let the care management nurse's opinion supersede the medical judgment of my posse of physicians. And the third option means a long wait, untold administrative hassles, and leaving behind a primary care doc that both my wife and I like a lot.

Any suggestions?

Could pot ease MS progress, not just symptoms?

2007-04-05T09:37:00.000-05:00

If a couple of stories on PR services are correct, the new issue of Nature Medicine will report that researchers believe that cannabis could protect against nerve damage, thereby slowing the progression of disability. Snip:

Cannabis works because it stimulates molecules known as cannabinoid receptors within the body. The group had previously reported that THC could alleviate disease symptoms, and also save nerves from the damaging effects of the disease - thus potentially, via the cannabinoid receptor CB1, slowing down the development of progressive disability. They had not previously examined the influence of cannabinoids on immune aspects of the disease.

Now their most recent study has successfully separated the roles of cannabinoid receptors CB1 and CB2 on neurons and T cells, and investigated their effect in controlling central nervous system autoimmunity. It showed that CB1 receptor expression by nerves in the brain, but not T cells, could suppress the development of an experimental MS-like disease, by stimulating the release of anti-inflammatory molecules, whilst in contrast direct stimulation of CB2 receptors by T cells was also able to control inflammation associated with the condition. This suggests that cannabis-like drugs may have the potential to block the autoimmune response which drives disease development.

The researchers also say that it might be possible to get the neuroprotective benefit from THC without the high associated with stimulating the CB1 receptors. Dang.
Link.

St. Joan's relics fail smell test

2007-04-05T09:17:00.000-05:00

An item at the journal Nature's website tells how professional perfume-sniffers helped researchers prove that alleged bits of the burnt saint were actually bits of an Egyptian mummy. Snip:

The researchers used a battery of techniques to investigate the remains, including mass, infrared and atomic-emission spectrometry, electron microscopy, pollen analysis and, unusually, the help of the leading 'noses' of the perfume industry: Sylvaine Delacourte from Guerlain, and Jean-Michel Duriez from Jean Patou.

Odour analysis is a new technique for palaeopathology, but Charlier says that he hit on the idea after being struck by the variety of odours of other historical corpses. Delacourte and Duriez sniffed the relics and nine other samples of bone and hair from Charlier's lab without being told what the samples were. They were also not allowed to confer. Both smelled hints of 'burnt plaster' and 'vanilla' in the samples from the relics.

The plaster smell was consistent with the fact that Joan of Arc was burnt on a plaster stake, not a wooden one, to make the whole macabre spectacle last longer. But vanilla is inconsistent with cremation. "Vanillin is produced during decomposition of a body," says Charlier. "You would find it in a mummy, but not in someone who was burnt."

Link.

Lame contest

2007-03-28T09:36:00.000-05:00

I've poked a little fun at the National MS Society's new marketing campaign slogan--"MS stops people from moving. We exist to make sure it doesn't." But I think it would be helpful if we could lend a hand to the Society and its marketing geniuses. So, in the interest of being part of the solution, being team players, I'm announcing a contest to come up with a better slogan. Here's how it works: we're going to stick with the format of the current slogan. So your suggestions should fit the following model:

MS stops people from _____. We exist to make sure _____.

Here, I'll get the ball rolling:

MS stops people from playing in marching bands. We exist to make sure there's something to watch during halftime at high school football games.

MS stops people from joining the army. We exist to make sure every American platoon in Iraq has at least one guy who always has to pee.

MS stops people from attempting 58 of the 64 sexual positions described in the Kama Sutra. We exist to make sure you get a chance at those other 6, including the one known as "the barking rabbit".

Prize? I haven't decided. Rules? I reserve the right to make them up arbitrarily. Go nuts.

Signs of spring

2007-03-28T09:35:00.000-05:00

1. Robin.
2. Crocuses.
3. End of maple sap.
4. Smelly asparagus pee (you know what I mean).

Is big pharma paying your doctor?

2007-03-21T10:43:00.000-05:00

Very interesting piece in today's NYT about records showing drug company payments to Minnesota docs. See, Minnesota is one of a few states with a law requiring drug makers to disclose what they're paying providers. Snip:

The Minnesota records begin in 1997. From then through 2005, drug makers paid more than 5,500 doctors, nurses and other health care workers in the state at least $57 million. Another $40 million went to clinics, research centers and other organizations. More than 20 percent of the state’s licensed physicians received money. The median payment per consultant was $1,000; more than 100 people received more than $100,000.
....
There is nothing illegal about doctors’ accepting money for marketing talks, and professional organizations have largely ignored the issue. But research shows that doctors who have close relationships with drug makers tend to prescribe more, newer and pricier drugs — whether or not they are in the best interests of patients. “When honest human beings have a vested stake in seeing the world in a particular way, they’re incapable of objectivity and independence,” said Max H. Bazerman, a professor at Harvard Business School. “A doctor who represents a pharmaceutical company will tend to see the data in a slightly more positive light and as a result will overprescribe that company’s drugs.”

I have a great deal of respect for the handful of doctors who make up my medical posse, and it would never occur to me that they might be influenced by whatever goodies Serono, Berlex, Biogen, or Teva might be passing out. And I'm sure that my posse honestly believe that they haven't been, and couldn't be, influenced by goodies from drug companies. But there are dump-trucks full of money at stake for the drug companies, and you have to believe that there are lots of really smart people working very hard to influence my posse and your posse in very subtle ways, so that more of those dump-trucks end up headed in their direction.

So what's a patient to do, especially if you don't live in Minnesota or another state that requires disclosure? Is this something worth asking your doctor, even if it might be offensive? Over the last 13 years, I've been on each of the CRAB drugs for a while, switching drugs when I switched neurologists, based on their advice. And now I wonder whether any of my switches were influenced by drug company marketing efforts aimed at my neurologists.
Link.

Pool running

2007-03-20T14:21:00.000-05:00

Just got back from the local high school pool, where I've doing some pool running and lap swimming. Over lunch, I can drive to the pool, get a good 20 minutes in the water, and get back to work without unduly stretching my lunch hour, although I'm sorta pooped when I get back to work.

I'm especially pooped when I first get out of the pool. This means that it's sometimes hard to haul myself out of the water, and I'm rather wobbly on the way back to the locker room. It also means that my brain may not be functioning correctly for several minutes. This happens to me whenever I get fatigued, and it's especially apparent in my speech, which becomes labored and occasionally garbled, like my penmanship when I try to write left-handed.

So I get out of the pool today, and, as is often the case, it's just me and the lifeguard. As I walk by her, she picks up the punch-card that I use to pay for admission, and sees that it's got my wife's name, which she doesn't recognize. She asks me, "Is this yours?" I look at the card, then say something like "Ohio
lunchbox, apparently." This has happened to me before: a lifeguard will ask me if I had a good swim, and I reply, "Frozen pancakes in the boot, Helen."

It's a little embarrassing.

Early spring ritual

2007-03-12T10:13:00.000-05:00

Last Friday was a beautiful day: sunny and warm, maybe in the low 40s, so I left work early to tap the trees. We've got a few good sized sugar maples in the yard, enough for five taps that, in a good year, produce enough sap to give us a gallon of real maple syrup. This is our fifth year of back-yard sugarin', and drilling that first hole and watching the sap start to drip down the trunk of the tree brings back some bittersweet memories.

Our first try was in March 2002. Back then, we lived up north, had just bought our first house. The house sat on a couple acres, maybe half of which was wooded with a mix of popples and maples and birches. Up there, hobby-level maple sugaring was common enough that you could buy the taps and stuff at the corner hardware store. That first year, spring came early, and I remember seeing little beads of sap on the very tip of every little twig on the big old maple out back. I also remember sitting on the back stoop, sipping a beer and watching the kettle boil as the sun set, and thinking I never wanted to live anywhere else.

But after that second year, we sold the house and moved to Chicago. We left the taps and the burner in the garage for the new owner. After a miserable year in Chicago, we moved to our current digs, where we restarted our early spring hobby. I think we missed last season for one reason or another, but it was good to fire up the kettle on Saturday and smell the familiar smell of boiling sap.

This year, there was still several inches of snow outside when I headed out with the drill, which made it tougher to get where I was going, but easier to avoid stepping in the dog turds out back. I'm a little weaker and a little tippier than the last time I did this, and I was ready for a rest when I finished. As I slouched in my big ugly recliner, where I seem to spend more and more time slouching and thinking, I thought about where I was and who I was the first time I drilled into a leafless maple tree.

I still miss living up north, but I think mostly I miss the person I was then, seven or eight years ago: active, fairly fit, and optimistic about my ability to control my own future. A couple weeks ago, I thought about heading out to the ski hill to see what would happen if I put on my skis and pointed them downhill. I used to ski a lot up north, but I haven't been out for a few years now. I just ran out of energy and stayed home, though. Gravity is much less of a friend than it used to be; I spend a lot more time fighting it and a lot less time enjoying it. But it still makes the sap drip down into the jugs in early March.

Orange, apparently

2007-03-05T14:33:00.000-06:00

It's National MS Awareness Week, and I forgot to buy you a present. Last night, there was a woman on the local news talking about what it's like to have MS. Today, the National MS Society announces its new MS 'branding' initiative. Snip:

In an effort to help make MS more relevant to busy people in a busy world, over the past year, the advertising agency Wieden+Kennedy New York, whose corporate clients include Nike, Coca Cola and Starbucks, has worked pro bono with the MS Society to develop a campaign to totally transform the way MS and the National MS Society is viewed right down to the very color that has been associated with the disease for the past 60 years. The ground-breaking initiative introduces a new way of talking about MS that focuses on the universal elements of what it means to live with this chronic and unpredictable disease. The agency donated over $1 million in time and creative talent.

This outpouring of creative talent has given the Society a new tag line ("MS stops people from moving. We exist to make sure it doesn't."), and a new color: orange. That's right, orange. See, all your really cool diseases have their own colors (pink for breast cancer, red for AIDS, yellow for testicular cancer, for some odd reason), and we really want a piece of that action. So start thinking about what in your wardrobe will look really smashing with a little orange ribbon.

Well, whatever. I guess I'm resigned to the idea that effective PR is an important component of the fight against MS, mainly because this country has not made access to healthcare or funding for research a priority. On the other hand, I'm not inclined to politely applaud Wieden+Kennedy's creativity for the new color and Society logo (which consists of the capital letters "MS" in orange with a black slash through them) just because they use a plus sign instead of an ampersand. Really, how long did they sit around thinking about the new logo before they came up with that one?

Happiness is...not breaking the skin

2007-02-28T13:46:00.000-06:00

I experience the greatest muscle dysfunction at the very end of the day, when I'm too beat to stand up straight, and at the very beginning of the day, when the process of getting myself out of bed is like trying to get a very big, very comfortable dog off of the couch. In the morning, it starts with the sort of horizontal stretch that we are all accustomed to making before swinging our feet onto the floor. Often, that first stretch ends up as a whole-body spasm where my arms and legs go simultaneously stiff and jumpy. It's hard to describe, that brief sensation of being both uncontrollably rigid and uncontrollably jumpy.

This morning, the clock radio went off at the usual time, and I turned over to give my wife a snuggly good morning hug. She'd been out of town for a while, and it was really nice to wake up and remember that she was there with me. But in the process of turning over, I triggered that weird shuddering spasm, and kicked her in the shin with my big toe. "It's OK," she said, "I don't think you broke the skin."

Speaking of love and illness, I really enjoyed reading this article in WaPo about what it's like to be a young breast cancer survivor.

After a weekend blizzard, TGIM

2007-02-26T15:56:00.000-06:00

More than a foot of snow over the weekend: a spectacular work of nature and, on a weekend when I'm home alone, a spectacular pain in the ass. Thank heavens for the little electric snowblower, which exceeded expectations in wet, heavy snow. Still, it turned into a weekend when my energy went into the driveway, leaving me rubberlegged and too tired to do anything interesting. Even today, I'm feeling tired and unfocused; I can't seem to get much done.

On top of everything, it's pledge week on public radio.

Study: treadmill training for MS patients

2007-02-14T09:10:00.000-06:00

Today, there's a passle of new abstracts to peruse from the journal Multiple Sclerosis. Lots of stuff about depression, cognition, and pain, and a report from a small study investigating the impact of treadmill training on walking effort and fatigue. Bottom line: for the study's 16 participants, 12 sessions of up to 30 minutes on the treadmill improved comfortable walking speed and endurance. We just got our basement tidied up; maybe there ought to be a treadmill down there. They're expensive little buggers, but maybe a used treadmill?

Link to abstract.

States address health care; feds, not so much

2007-02-13T09:03:00.000-06:00

Today's NYT highlights states' efforts to expand health coverage through current programs like SCHIP and Medicaid, even as the Bush administration calls for returning those programs to their "original objective" of providing coverage for people with incomes at twice the federal poverty level or below (that's about $41,000 a year for a family of four, or about $27,000 a year for a two-person family like mine). Snip:

In Washington, health policy debates highlight the ideological divide between Republicans and Democrats over the proper role of government in helping the uninsured. Governors and state legislators tend to be more pragmatic.

“There is such a political divide in Washington that many people believe that the only reasonable chance to succeed is at the state level,” said Jeffrey S. Crowley, a senior research scholar at the Health Policy Institute of Georgetown University.
...
In his budget, Mr. Bush said the way to transform the health care system was by “subsidizing the purchase of private insurance,” not by expanding public programs in a way that would increase costs to the federal government.

I've got two basic problems with the administration's position. First, isn't it inevitable that 'subsidizing the purchase of private insurance' will increase costs to the federal government just as surely as the expansion of public programs? Sure, we can argue about which costs more, but if an 'ideological divide' separates the two, I just don't see it as about cost; it looks a lot more like a preference on the part of the administration to assure a role for commercial health insurers.

Secondly, and more importantly, I can't see that the administration's tax deduction proposal would cause anything like the transformational change needed to fix the problem. We can trim all the fat out of the current system through republican ideas like eliminating the tax incentive for Cadillac plans, tort reform, and cost transparency, but you can't really escape the fundamental principle that we need healthy people to help pay to care for sick people.

Link.

Marijuana effective for HIV-related peripheral neuropathy

2007-02-13T07:41:00.000-06:00

A study involving HIV patients demonstrates that smoking pot is effective at relieving foot pain from peripheral neuropathy. Snip:

The study, conducted at San Francisco General Hospital from 2003 to 2005 and published Monday in the journal Neurology, involved 50 patients suffering from HIV-related foot pain known as peripheral neuropathy. There are no drugs specifically approved to treat that kind of pain. Three times daily for nearly a week, the patients smoked marijuana cigarettes machine-rolled at the National Institute of Drug Abuse, the only legal source for the drug recognized by the federal government.

Half the patients received marijuana, while the other 25 received placebo cigarettes that lacked the drug's active ingredient, tetrahydrocannabinol. Scientists said the study was the first one published that used a comparison group, which is generally considered the gold standard for scientific research. Thirteen patients who received marijuana told doctors their pain eased by at least a third after smoking pot, while only six of those smoking placebos said likewise. The marijuana smokers reported an average pain reduction of 34 percent, double the drop reported by the placebo smokers as measured with a widely accepted pain scale.

That jives with my experience with pot's effect on my MS-related peripheral neuropathy, I guess, but I can't really see myself functioning particularly well on 3 joints a day. I wonder whether this study was able to prevent the unmasking of pot vs. placebo by participants who could tell they were high, or not.
Link.
Update: here's a link to a WaPo story on the same study.

What not to eat

2007-02-08T15:49:00.000-06:00

Just heard an interesting piece on NPR about a woman who studies mushrooms, in particular Amanita phalloides, the death cap. I've got a thing for mushrooms, both the 6 species I'm comfortable picking and eating, and the gazillion others I like to look at and poke and photograph. It's an interesting piece, and I was surprised to learn that phalloides isn't in fact a native species. Actually, it's a European invader. Whatever its origin, it's the reason I stomp any white mushroom with a veil (the ringey thing on the stem) when I'm up at the cabin.

Education, money, and artificial milestones

2007-02-07T12:01:00.000-06:00

I've been paying on my student loans for close to 10 years now. I've always told myself that going into debt to the tune of $50,000 total for my undergrad degree and my law degree was a fabulous investment in my own earning potential. After 10 years, I think I finally believe that's true.

God help me, for the first year, I actually paid on the 10-year schedule, because the idea of being so far in hock annoyed me. After a year, though, I went ahead and consolidated to lock in what seemed at the time to be a ridiculously low interest rate: 5.25% (although the rate eventually went even lower than that). Around the same time, I started putting $50 per month into an IRA.

Since then, I've kept hacking away at the student loans at $300 a month, watching how they've gone from paying almost all interest and principal to maybe half and half, taking advantage of the student loan interest deduction as it was phased in. At the same time, I've tried to keep contributing a bigger and bigger chunk of my earnings to retirement savings, initially just to the IRA, then to a 401k, and now to 403b. I'm up to $500/month, which is about 8.5% of my gross salary. In the last year, I've also bought a few individual stocks, too.

Thanks to the interwebs, I can, at any moment, watch my savings go up (or down) and watch my student loan balance go down. Recently, I realized that I had passed the point where the balance on my student loans was about equal to the amount in savings. So in a sense, I guess I've finally got myself back to zero (although in a different, more real sense, I'm still plenty in hock, onnacounta a mortgage, another year of car payments, and some outstanding debt for the purchase of a couch and a couple chairs, not to mention the fact that my retirement savings are pretty damn illiquid).

Then, there's a distinct possibility that the family educational debt stands a pretty good chance of going up. My wife is pretty seriously thinking (with my not-so-subtle encouragement) about going back to school to get a nursing degree. Seems like a good fit for her. The only problem is that despite an abundance of nursing programs in the area, there seem to be significant waiting lists to get in. So despite the acknowledged shortage of nurses, we're not so much short of people who want to be trained as we are short of people to do the training, at least that seems to be the story around here.

Do/be, doobie

2007-02-02T09:08:00.000-06:00

It's cold and sunny today, the kind of cold that almost explodes your head when draw in that first outdoor breath of the morning. Over the weekend, we might not make it above 0 (that's Fahrenheit, folks), which means that this weekend is unlikely to be the weekend when I finally get out and enjoy some kind of winter fun like ice fishing or skiing. That's kind of disappointing.

For the last few weeks, I've had the annoying feeling that my life had become dramatically less interesting than it had been just a couple years ago. Last Friday, I drove to see an old friend who lives an hour and a half away, partly because I wanted to borrow his sausage grinder attachment, and partly because I just felt like doing something alone. It was good to see him, as always. He's one of just a few people that I think of as close friends. But it felt sorta strange to be doing something without my wife. And the more I thought about it, the more I realized how unusual it has become for me to be out and about, hanging out with a friend, and not accompanied by my wife.

These days, it feels like my life has shrunk down to basically 1) getting ready for work, 2) being at work, 3) watching TV after work, and 4) sleeping. The occasions on which I am alone are generally the times when I am engaged in activity #3 and my wife is doing stuff with a friend. It didn't used to be that way. It used to be that I spent a considerable amount of time alone but doing stuff, and I felt like the stuff I did other than working was the stuff that more or less defined who I was as a person. A former teacher of mine used to say, "The more you do, the more you are," and it seemed right.

But now, I do less. I just don't have the juice after work to do much of anything except occupy my big ugly green recliner. Last night, my wife went with a friend to go see "The Queen" with the very fabulous Dame Helen Mirren. I stayed home, fired up the bong, watched old episodes of "Connections" with shaggy old James Burke, and ate a pint of ice cream. And the kicker is that even going to work doens't really feel like doing much of anything. My job is not particularly demanding, my work is generally not subject to real deadlines, so I sort of plod along for 8 hours, get back in the car, and go home. None of the anxiety, the excitement, the ego-inflating opportunities to demonstrate one's brilliance that I had in private practice.

Again today, I will wander my way through 8 hours at the office, stopping frequently to check out the latest news/stock prices/Amazon.com Friday Sale items or to play a game of Solitaire, maybe answering the phone a few times, then I will get back into the car, drive home, open a beer, and watch the news. My wife will be out for cocktails with former coworkers. I will probably bake a loaf of bread and eat several slices of it while watching through googly eyes as James Burke explains how the discovery of earwax in ancient China led to the development of the modern cellular phone.

MS prevalence up?

2007-01-30T13:48:00.000-06:00

A number of media outlets (e.g., CBS News) are reporting on a study published today that indicates MS prevalence is up 50% since 1982 to .9 cases per thousand. Are more people getting sick or are more people getting diagnosed? Don't know, but it's starting to seem like there really ought to be at least one charismatic, young A-list celebrity with MS who can do for this disease what Michael J. Fox has done for Parkinson's. Annette Funicello's too old; Squiggy's too old and kinda obscure; Teri Garr's too old and kinda flaky; Montel Williams is close, but still a bit too old (sorry guys, it's strictly business).

What we need is someone who, like Michael J. Fox, has been in the mainstream public eye so pervasively that he or she feels like somebody we all know and grew up with. What are we doing wrong?

Doing some math on the Bush tax plan

2007-01-24T09:18:00.000-06:00

Here's how the Bush tax plan for health insurance works out for me, I think: The total premium for my employer-provided family HMO coverage is $1050 per month (of which I pay $68 per month). If the value of my coverage is computed based on what my employer pays, $982 per month or $11,784 per year, that yields a deduction of $3,216 ($15,000 - $11,784). At our marginal tax rate of 15% (last year, anyway), that means we'll pay about $482 less in taxes than I would have without the deduction.

So that's nice, I guess. But the question I have is, what's the government getting in terms of its stated goal of expanding health coverage for that outlay? Well, I guess it's discouraging the kind of Cadillac plan for which people are going to end up losing some tax deductions. And I guess the argument is that by penalizing the Cadillac plan, we're somehow discouraging the rising cost of health care in the country. So, OK. But as I understand it, the deduction for people like me with Hyundai plans won't be totally offset by the deductions lost by Cadillac people for a number of years. In fact, the only reason the Cadillacs will eventually zero out the Hyundais is because the $15,000 figure won't go up as fast as my Hyundai policy goes up. So eventually, even the Hyundais will end up losing the goodies they'd get early on, and end up being contributors to the tax subsidy (sorta the way families with moderate incomes have been swept up by the alternative minimum tax).

And what about that subsidy? In the beginning, I get a nice little piece of that action, even though it's going to cost the government in the beginning. But eventually, me and fellow Hyundais are going to be kicking in money to subsidize somebody else's tax deduction. The thinking is that the tax subsidy is going to make it possible for somebody who isn't presently covered to get coverage.

I don't think it's a bad idea to quit using the tax code to subsidize Cadillac health coverage, and I don't think it's a bad idea to use the tax code to subsidize Hyundai coverage for people who don't have any. I just think it's another example of too little, too late. There are millions of people without coverage, and many of them aren't going to benefit in a meaningful way from a tax deduction.

For a different take on the Bush plan, check out Ruth Marcus's piece in today's WaPo. And for an interesting peek into Bush's SOTUs, check out NYT's interactive feature that lets you search the text of Bush's SOTUs for keywords. Search for "health" and watch the 6-year evolution of the Bush health policy agenda.

Bread: It takes a village

2007-01-23T16:09:00.000-06:00

For the last six weeks or so, I've been baking two or three loaves of bread a week. It's Mark Bittman's No-Knead Bread recipe, and it's sweeping the nation, or at least the bread-loving segment of the nation. Most of my loaves have come out lovely, with the exception of the loaf I tried to make with the bran-speckled organic stuff my wife brought home. My standard loaf is now Bittman's recipe with the addition of a generous handful of sesame seeds on top. For those of you keeping score at home, I put them on the towel before setting the shaped dough on the towel for the last couple hours.

A few loaves have, however, tended to look a little flat, spreading out to maybe 10" wide. I did a little poking on the Internets for a solution, and you really would not believe how many people are talking about and baking this very recipe. It looks like I'm just making a wetter dough by spooning flour into the measuring cup (you get less flour smooshed into the cup) rather than just dipping the measuring cup into the flour bag (squashing a larger quantity of flour into the cup). The solution, of course, is to measure by weight, but I'm not sure I have an accurate scale.

The really cool find, though, is the gazillion-odd pictures you get from Flickr when you search for "No-knead bread". Seriously, every shape and color and defect of bread you could imagine, from mouth-watering perfection to some blobby, vaguely bread-like objects. Is it possible that we're all reading the same recipe? But how totally great that so many people are making time for the ultimate slow food!

Cheers, my bakin' homies.

Universal health care: maybe later?

2007-01-22T09:44:00.000-06:00

Today, WaPo's got a piece on the state of the health care debate. To sum up, Washington is starting to figure out what the states already know: somebody's gotta do something to expand coverage, preferably to everybody. But the feds don't have the money or the political will, so until the next election all the action will happen at the state level. And it's completely unnecessary to point out that we're currently investing trillions in Iraq, where the return on our investment is dubious at best. (A couple days ago, NYT offered a helpful graphic that compared the estimated cost of the war to the estimated cost of some crazy social-programmy things like universal health care, which was incredibly depressing, but I can't seem to find the link right now. Good.)

For the last couple days, I've been reading about a plan the president will announce in the SOTU Address tomorrow night. Yesterday's story in WaPo indicates that the plan will be to impose a tax on plans a tax on the value of employer-provided health plans that exceed more than $15,000. The tax would be used to subsidize health plans for those who buy coverage out-of-pocket:

Under the president's proposal, workers who receive employer-provided health insurance would have to pay a tax on the cost of their benefit above $15,000, the threshold proposed by Bush for the tax break. For instance, if a person's health insurance costs $16,000, he would pay a tax on the $1,000 difference.

People with families who buy low-cost policies, meanwhile, would have their taxable income reduced by $15,000, regardless of the cost of the plans and whether they itemize deductions on their tax returns. The deduction would be $7,500 for single individuals. The deduction, to be indexed to account for inflation, would also be extended to those with employer-provided plans, to be offset by the cost of their coverage.

"This is a huge incentive for the uninsured to get coverage, but, also, the vast majority of people with employer-provided coverage will benefit as well," a senior administration official said. "This is essentially a standard deduction for health care, and the size of the deduction will be significantly higher than the cost of an average policy."

The Bush administration estimates that 80 percent of people with employer-provided plans would see their tax liability fall because the deduction would be larger than the value of their insurance plans.

It sounds like a good idea. But it sounds less like a first step to solving the nation's health care problem and more like a first step to doing away with the enormous regressive subsidies in the tax code. Why not do both?

There's no way around it: fixing health care isn't just a matter of redistributing some money, we're going to have to spend more. Trimming all the waste out of the system--the corporate profits, the expensive emergency care that could have been prevented by cheap preventive care, whatever saving you might realize from tort reform--won't be enough to pay for quality care for everybody. One good way to pay for it would be to gradually cap the enormously regressive tax deduction for home mortgage interest.

The house behind ours just happens to be an enormous mansion with lake frontage. It has a garage that's bigger than our house. What public policy is served by allowing my neighbor to deduct every cent of the interest he pays on the mortgage for his mansion?

Snowing again

2007-01-21T10:30:00.000-06:00

We waited, and last weekend, it finally came: snow, 6" or so. It felt, at least for a little while, as though our little blue and green planet was not in fact spinning out of control. Gas prices dropped down to $1.99 per gallon. Two lost boys were found, apparently unharmed. Things got busy at the office, and it made me feel useful and productive to leave a week's worth of crossword puzzles empty, untouched. On Friday, when I left the office, there was still a little purplish-orange glow in the sky.

But here it is again, Sunday morning. It snowed again last night, and it's beautiful to look at. But it's so quiet, just me and the dogs and the hum of the refrigerator and a couple of dusky little juncos at the bird feeder.

New year, old problems

2007-01-02T10:01:00.000-06:00

In the early morning hours of New Year's Day, I was staying at my dad's house, laying awake, watching the sun rise, and composing a short speech. Here's the gist of the speech, which I delivered to my dad over coffee:

This morning, I laid awake, watching the sun rise and composing a short speech, and here goes: In our live, all of us must learn a very painful lesson, namely that there is no occurrence, no sequence of events, that is so awful that God does not let it happen. If we are fortunate, God allows these things to happen to us while we are with people whom we love. It is in this spirit that I report the following:

Last night, I knocked over my urinal and spilled a generous quantity of urine on the carpeted floor of the room where your 13-year-old daughter usually sleeps.

Other than that, my Xmas vacation was okay.