Wednesday, March 29, 2006

Research: Capricorns favored?

Does birth month influence MS progression? This article says yes, for a data set composed of patients in British Columbia. I haven't read the article, and I'm not a scientists, but it sounds strange to conclude that it is the month of birth that is the operative factor. Interesting stuff, nevertheless. Here's the abstract:
Neuroepidemiology. 2006 Mar 28;26(4):195-198 [Epub ahead of print]

Does the Season or Month of Birth Influence Disease Progression in Multiple Sclerosis?
Tremlett HL, Devonshire VA.
Department of Medicine, University of British Columbia, Vancouver, Canada.

We investigated the influence of season and birth month on sustained progression to Expanded Disability Status Scale 6 (requires a cane) through a database review of 2,319 definite multiple sclerosis (MS) patients followed for a mean 19.3 years, until July 2003 in British Columbia, Canada. The season of birth had a marginal effect on disease progression (p = 0.051), with winter babies exhibiting the slowest progression (p = 0.048). Birth month had a significant effect on progression (p = 0.038), mainly due to those January born having a 40% (95% CI 32.9-47.4) chance of requiring a cane later than those born in other months. There was some evidence to suggest that the gestational period had a small but long-lasting effect on later disease progression in British Columbia, Canada. Copyright (c) 2006 S. Karger AG, Basel.

Link to abstract

Tuesday, March 28, 2006

Journal: Sprung, and restless

Over the weekend, we got a nice sunny day, and the crocuses came out to play. The yellow ones by the birch tree first, then a few of the purple ones I planted near the lilacs a couple years back. On Sunday morning, I was out front with the camera, kneeling on the lawn with my rump facing the road while some neighbors walked by. I took a few pictures and rooted around to find other bulbs trying to poke out of the dirt: tulips down by the street, daffodils at the foot of the maple tree. I assessed the likelihood that the honeysuckle and white forsythia survived the winter (honeysuckle, yes; white forsythia, not so much).

It doesn't take much crouching, kneeling, stooping, and standing to make me tired and start to teeter and stumble, and I think it must be apparent to our neighbors that there's something not quite right about me. We don't know most of our neighbors very well, and I wonder if they think I'm a drunk or I'm dying and why it matters to me what they think.

Work is slow, and will continue to be slow for a few months. We had planned to take a vacation this spring or summer while we could get away from work. First, it was going to be a week on a houseboat on Lake Powell in May with my brother and his girl, which seemed like an ideal sort of trip for my needs, but the girl decided she didn't want to go, so that got scrapped. Then we decided we would take two weeks in June and take the train out to Seattle and spend some time kayaking on Vancouver Island, but it became apparent that we couldn't really afford to do that in high season. Then I started looking at renting a lakeside cottage in Sweden, where we could do some outdoorsy stuff and see some sights and revel in the excitement of being somewhere foreign and far away. But airfares in high season seem so expensive, and Scandinavia seems pricey whatever time you'd go, and if we wanted to go to a cabin on a lake, why wouldn't we just go up north to my dad's cabin, and wouldn't it be nice to use the money we save to finally get our shit together and do the remodeling we've been talking about for the last couple years?

So the question is, what is the value of travel for me, and how does it compare to the value of some home improvements? And the consideration of this question over the weekend (and for a long time before the weekend, too) drove me deep into a funk from which I have not yet emerged. See, MS has left me with little energy for the sort of backpack-toting/train-hopping/walking-a-mile-to-the-hotel travel that I used to do. Now, I do a lot of sitting: sit at work all day, then do some sitting and home, and then lay down in bed. Repeat.

It’s nice to sit somewhere else: a different view, different surroundings, maybe the sound of chatter in a foreign language. Nice. But is it worth a few thousand dollars? I dunno. My wife recently said, of our travels together, that she seems to enjoy the memory of a trip much more than she remembers enjoying the trip itself. That rings true, I think, at least for our recent trips together. And since our last big adventure (going to France three years ago) I’ve gotten a little weaker, a little more wobbly, the bladder thing is a little worse. I’d probably have to pack a separate bag full of bed- and undie-pads. Bleh.

Sure, it’s a nice problem to have: figuring out how to spend a little money and two weeks away from work. But it feels like the resolution of this problem will be a sort of mile-post in my illness: 2006, the year I stopped traveling, after which I never went anywhere but had some nice new windows to look out of.

Update 3:29 pm:
Oh yeah- also, Lyrica's making me fat. At my most recent neurologist visit, I learned I'd gained 10 lbs. since starting Lyrica. I need new pants.

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Thursday, March 23, 2006

In the news: Kids as caregivers

This morning, I caught part of a story on NPR about a 15-year-old girl who finds herself in the role of caregiver for her mom, who has MS. Young Ashleigh has quite a positive take on her experience, though research says that more than a fifth of the kid-caregivers drop out of school. Snip:
[Ashleigh is] 15. Her mother, Valerie, has multiple sclerosis. She needs daily injections and sometimes more serious care. Like many people, their insurance doesn't pay for a nurse to do all this, so Ashleigh has had to step in.
A survey last year found that 1.4 million children between the ages of 8 to 18 provide care for a parent or family member. Nearly half say they help someone eat, get in and out of bed, get dressed, take a bath or go to the bathroom. A third of the kids help with medications. The caregiver role can be hard on the children. More than a fifth of them drop out of school. The youngest, between 8 and 11, are more likely to feel no one loves them.

Link to NPR page on the story, which includes a link to audio.

Research: Cannibinoids and urge incontinence

This research appears to square with my own experience: cannabis helps reduce the bladder spasms that are responsible for those little wet spots on my khakis. Snip:
The effect of cannabis on urge incontinence in patients with multiple sclerosis: a multicentre, randomised placebo-controlled trial (CAMS-LUTS).

Freeman RM, Adekanmi O, Waterfield MR, Waterfield AE, Wright D, Zajicek J.

Urogynaecology Unit, Derriford Hospital, Plymouth, Devon, UK,

Objective: To test whether cannabinoids reduce urge incontinence episodes without affecting voiding in patients with multiple sclerosis. This was part of the multicentre trial of the Cannabinoids in Multiple Sclerosis (CAMS) study. Subjects and methods: The CAMS study randomised 630 patients to receive oral administration of cannabis extract, Delta(9)-tetrahydrocannabinol (THC) or matched placebo. For this substudy subjects completed incontinence diaries. Results: All three groups showed a significant reduction, p<0.01, in adjusted episode rate (i.e. correcting for baseline imbalance) from baseline to the end of treatment: cannabis extract, 38%; THC, 33%; and placebo, 18%. Both active treatments showed significant effects over placebo (cannabis extract, p=0.005; THC, p=0.039). Conclusion: The findings are suggestive of a clinical effect of cannabis on incontinence episodes in patients with MS. This is in contrast to the negative finding of the CAMS study, where no difference was seen in the primary outcome of spasticity.

Link to abstract.
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Thursday, March 09, 2006

In the news: F.D.A. recommends Tysabri return

An FDA advisory panel has unanimously recommended returning Tysabri to market. From the NYT:
In making its decision, the scientists and doctors advising the Food and Drug Administration said, in effect, that patients and their physicians should have the right to decide whether the considerable benefits the drug offers outweigh risks that can perhaps be reduced but not totally avoided. If the F.D.A. goes along with the recommendation, as it is expected to by the end of the month, the approval would be only the second instance of a drug being returned to the market after having been withdrawn for safety reasons.

Bravo. I'm not sure why there was quite so much handwringing about whether to allow patients and doctors to make this decision. Per the NYT story, the risk of developing PML is about 1 in 1,000. Also per the NYT story, Tysabri is more effective than the CRAB drugs. Assuming this is true, any rational cost/benefit analysis would have to conclude that the MS-related misery prevented in Tysabri patients exceeds the risk of developing PML.

Just about every medical intervention (drugs, surgery) involves some level of risk. As a society, we've decided to allow patients and doctors to sort that out for themselves, up to a certain point, beyond which we figger we need to step in and say, "No, that's not a rational risk." The problem, from the patient's standpoint, is this: in this case, it is relatively easy to quantify the risk. We know how the proportion of Tysabri patients that developed PML, and we know that PML is fatal. That's pretty concrete. The potential benefit to Tysabri patients, however, is much squishier. Maybe we can come up with some numbers, maybe EDSS scores. But the real meaning of those scores, the reality to an MS patient, cannot be represented by a number. Effective treatment for MS might mean the difference between working vs. disability, going out with friends vs. watching TV, making it to the bathroom vs. peeing your pants. If it were possible to know, on an individual level, what Tysabri (or Betaseron or low-dose-naltrexone or hyperbaric oxygen) made possible (and it's not possible), what's that worth?

Which is why I am glad that at this meeting of scientists there were, according to the NYT, some two dozen MS patients who "pleaded at the meeting, some tearfully, for the return of the drug they called their best or only hope." Let us make this decision by hashing it out with a doctor and, daring a little bit of optimism, taking a risk.
Link to NYT story (free reg req'd)
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Journal: iPod repair

Since I got my 4G 40gig iPod for Christmas of 2004, my relationship with it has been characterized by long stretches of intense love and intimacy interrupted by brief episodes of intense frustration and alienation. A few times, it has gone on the fritz, with no logical explanation that is apparent to me, and no obvious fix, even after hours and hours of time invested. Suddenly, however, last night, my iPod and I made a breakthrough.

I'd plugged it in to my PC (Win 2K, firewire port), and it started to happen again: the iPod whirred to life for several seconds, made a clicking sound, then fell silent for a few seconds, then started the process over again. This is how my iPod problems start. I plug it in to sync and recharge, the clicking starts, and iTunes never acknowledges the iPod. Further, I can't get Windows to stop the process and disconnect from the iPod. The only way to stop it is to reboot the computer and the iPod at the same time.

So last nite, it started again, as I was about to go to bed. I restarted the computer and rebooted the iPod and unplugged the thing, and started over. When Windows finished restarting, I plugged in the iPod, and it started again. What I did next I did on the basis of the hours of research I'd already conducted and on my keen knowledge of engineering principles: holding the iPod in my right hand, I smacked the thing sharply against the palm of my left hand, as a smoker smacking a pack of cigarettes. The clicking stopped, iTunes happily acknowledge my iPod and it synced up. I went to bed, feeling as if I'd just won $400 (the original price of the iPod) on a scratch ticket.

I'd read, on an Apple support forum and a couple other places, that people had "fixed" their iPods by dropping them or smacking them, read speculation about stuck drive heads and so forth, but I was convinced that it had something to do with upgrading to the latest version of iTunes. The last time I'd had trouble was after upgrading, when I'd ended up trying to do a full restore. I'd get a few hundred songs onto the iPod, and suddenly get a 'delayed write failure' message or other stuff that suggested a hard drive problem, but the HD check with the iPod's diagnostic mode always came back OK.

So after hours of frustrated Google searches, hundreds of restarts, and some marital strife occasioned by my obsessive attempts to fix the thing, it turns out that the way to fix my iPod was to use the technique one might have seen one's father use with the 1968 RCA black-and-white TV in the family room: whack that sucker and show it who's boss.

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