Grateful

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

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

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?

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.

First research testing CCSVI theory

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"

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

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

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

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

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

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

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

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

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.