Journal: Lyrica update and stuff

As I was doing dishes over the weekend, I was thinking to myself, Self, it's been a while since we thought about pain. Awright. This is a very good thing.

So, subject to the usual disclaimers (MS symptoms come and go, pain is subjective, N=1, etc.), I'm happy with Lyrica. I do still experience some discomfort after long afternoons sitting at my desk, car rides, etc., but it has been a while since I had the overwhelming sensation that I was sitting on a hot cast iron pan. A week ago, I made the 6+ hour trip up to the cabin without getting overly squirmy.

It seems like the dopeyness I felt while on heavy doses of Neurontin (3000 mg/day in divided doses) has eased a bit, and it's great not to have to remember to take a pill every 3 hours. For a long time, I've had a keychain with a little pill jar on it so I'd always have a few Neurontin 600 mg tabs with me, but now the container has some of my wife's pills in it. I'm thinking about switching to carrying around a Leatherman Micro on my keychain instead.

I've also started swimming more frequently. My wife's been coming with me, sometimes bringing along a friend. It's a lot easier to drag myself over to the pool when I've got a buddy. Also, I finally bought myself some goggles and a pair of training fins.

I'd always been frustrated that I seemed unable to keep up a crawl stroke for more than a pool length or two-- it felt like I was swimming at about 95% of my capacity just to maintain enough forward progress to stay above water. By the time I got to the other end of the pool, I'd be tuckered out, and would have to downshift to a backstroke or sidestroke.

The fins allow me increase the efficiency of my kicks, so I can swim faster with less effort. I used to spend about 10-15 minutes swimming before I'd poop out, and now I'm staying in the pool for up to a half hour. Eureka. I was super pleased with myself, until my wife pointed out that there was a bin full of fins available for free at the pool, though they looked more like regular old diving fins (bigger blades, so instead of a 'flutter kick', you end up with a motion like riding a bicycle). The goggles help a lot, too, especially now that I'm doing more crawlstroke.

I've also experimented with a swim buoy a couple of little foam doodads tethered together with a short strap. You stick it between your legs, and it keeps your lower body buoyant, allowing you to swim with just your arms. I need some practice with that one. What tend to happen is I end up twisting my trunk during my stroke creating a fishtail effect. Maybe I need to get myself some swimming lessons. I wonder if the community pool offers one-on-one swimming lessons...

technorati tag: multiple sclerosis

In the news: Impressive Science Meets Unimpressed Patient

I'm not a doctor, nor do I play one on TV, but I think a lot about the limits of the medical profession, about the difficulty of integrating medical science into the real world of skeptical patients. Whatever researchers may learn, whatever the New England Journal may publish, it is up to the doctor to see that individual patients do something (or stop doing something) in order to accrue the benefit of that knowledge. It is up to the doctor to persuade a patient to quit smoking, to abandon ineffective or harmful alternative therapies, to stop drinking while pregnant. Are doctors equipped for this?

Dr. Abigail Zuger writes thoughtfully about this struggle in the NYT. Snip:

It is medicine's eternal quest, these days, to sell impressive science to unimpressed patients, and it is hard to think of a group less equipped to do it than doctors. Doctors are specifically trained not to think like normal people, not to see what others see or to reason as others reason. They er, we come to operate in an atmosphere so thin, so heady and attenuated with the power of statistical analysis, that one might wonder whether we are really on the same planet as the patients we try to convince of our truths.

Link (free req req'd)

Research: Dang

Lancet Neurol. 2006 Mar;5(3):213-220.
Effects of oral glatiramer acetate on clinical and MRI-monitored disease activity in patients with relapsing multiple sclerosis: a multicentre, double-blind, randomised, placebo-controlled study.

Filippi M, Wolinsky JS, Comi G; the CORAL Study Group.

Neuroimaging Research Unit, Institute of Experimental Neurology and University Ospedale San Raffaele, Milan, Italy; Department of Neurology, Institute of Experimental Neurology and University Ospedale San Raffaele, Milan, Italy.

BACKGROUND: Parenterally administered glatiramer acetate reduces the frequency of relapses and the formation of active brain lesions seen with MRI in multiple sclerosis. This study assessed whether two doses of glatiramer acetate given orally could improve clinical and MRI measures of inflammation and neurodegeneration in a large cohort of patients with relapsing-remitting multiple sclerosis. METHODS: 1912 patients with relapsing-remitting multiple sclerosis were screened and 1651 were randomised to receive 50 mg or 5 mg of glatiramer acetate or placebo by daily oral administration over 14 months. The intention-to-treat cohort consisted of 1644 patients who took at least one dose of study medication (50 mg glatiramer acetate [n=543], 5 mg glatiramer acetate [n=553], placebo [n=548]). After baseline investigation, clinical assessments were done every 2 months and MRI was obtained for all patients at baseline and at study exit. Additionally, MRI was undertaken every 2 months for a cohort of 486 patients. The primary outcome was the total number of confirmed relapses observed during the study period. Several prespecified clinical and MRI secondary and tertiary outcomes assessed treatment efficacy on inflammation and neurodegeneration due to multiple sclerosis. FINDINGS: The cumulative number of confirmed relapses did not differ between the two active treatment groups and the placebo group. Relative to placebo, the rate ratio for the 50 mg glatiramer acetate treated group was 0.92 (95% CI 0.77-1.08, p=0.30) and for the 5 mg glatiramer acetate treated group was 0.98 (0.83-1.15, p=0.76). No drug effect was seen for any of the secondary and tertiary endpoints. The study drug was safe and well tolerated. INTERPRETATION: 5 mg and 50 mg glatiramer acetate administered orally on a daily basis do not affect relapse rate or other clinical and MRI parameters of disease activity and burden in patients with relapsing-remitting multiple sclerosis. Treatment with oral formulations of glatiramer acetate at the doses tested cannot be recommended.

Link to abstract
technorati tag: multiple sclerosis

Puppy love: Rufus, the dog show, and everything

Who loves doggies? Who loves the puppies, huh? Are we a little doggy-obsessed? Yes, we are! Yes, we are! We're a widdle dog wubber! Yes, we are!

OK, I didn't watch the Westminster Kennel Club show, mainly because I don't have cable and, if memory serves, the show airs on ESPN for some reason, but I saw a picture of Rufus, the bull terrier who won best in show, and he is adorable. Yes, he is! Yes, he is!

There's something about the the coloration of his face and his perfectly egg-shaped head that makes him look almost cartoonish. The white patch that widens from his crown to his nose make his eyes look very close together, yet very distant from the end of his snout, like a pair of skiers poised on either side of the starting point of a ski jump, no? And his little dark eyebrows hover like single quotation marks: Chuck Jones would draw them hovering a couple inches off his face.

Rufus is so cute that I was able to briefly forget the troubling fact that his cuteness is, in part, a product of humanity's on-going experiment in dog engineering. In an Op-ed piece in Monday's NYT, Ted Kerasote reminds us that this experiment hasn't always been good for the dogs:

Unfortunately, in some breeds, form has trumped function. The Pekingese and the bulldog, whose flattened faces make breathing difficult, are two examples. Such design flaws — often perpetuated by breeders trying to produce a dog with a unique look — have enduring consequences for individual dogs, their progeny and the people who love them.

Of the 180 breeds listed on one popular Web site for choosing purebred puppies, 42 percent have chronic health problems: skin diseases, stomach disorders, a high incidence of cancers, the inability to bear young without Caesareans, shortened life spans. The list is as disturbing as it is long, and poses a question: dazzled by the uniqueness of many of the breeds we've created, have we — the dog-owning public — turned a blind eye to the development of a host of dysfunctional animals?

I often think about how my own dogs--lacking the ability to kill their supper, to let themselves out when they need to pee, to drive themselves to the dog park when they feel frisky, to change the channel when American Idol comes on after the Simpsons--are helpless. I think about it when I take my Yellow Lab to the vet: when the dog feels pain, he communicates with the vet by whining, licking, trying to escape. When I go to visit the neurologist at the pain clinic, I communicate about pain in exquisit, florid detail: I illustrate the location and nature of my pain using a diagram and six different colored markers, I quantify it on a scale of 1 to 10, I talk about burning, stabbing, throbbing, aching.

My dog has so little control over what happens to him, and I feel obliged to try to ensure that what happens to him is what I would want to happen to me, were I a furry creature without opposable thumbs. I hope that Rufus and the gazillion other dogs bred to please fickle human sensibilities are similarly looked after.

In the news: Health clubs and the ADA

The NYT has a great piece on accessability issues and health clubs. What does accessibility mean at Bally's? Snip:

Health clubs are among the last public places in the United States to become broadly accessible to the physically disabled, say advocates for people who are blind, deaf or in wheelchairs. Some clubs lack the ramps and wide doors that they are required to provide — like schools, restaurants, theaters and office buildings — under the Americans With Disabilities Act of 1990.

But even when health clubs have such basic accommodations, the disabled are often shut out because getting through the door is only the beginning. The exercise equipment must be accessible, too. Disabled exercisers face major hurdles at most gyms, according to a survey in November in The American Journal of Public Health, which looked at 16 for-profit and 19 nonprofit health clubs and concluded that all had significant problems. Some had obstacles that prevented disabled members from reaching parts of the club, a violation of the disabilities act. Others lacked equipment that could be used by people with disabilities or staff members who were willing to help such members.

New federal guidelines for enforcing the 1990 disabilities act, now under review by the Department of Justice, would mandate that health clubs provide a clear floor space of at least 30 inches by 48 inches around each type of weight-training equipment so people in wheelchairs can get to them. Swimming pools, depending on their size, would be required to have a ramp or a lift capable of lowering swimmers in their wheelchairs.

Still, while many advocates for the disabled praise the new recommendations as a step in the right direction, the majority of advocates say they don't go far enough. A Justice Department spokesman said the guidelines won't mandate, for instance, that clubs purchase equipment with Braille, or seats that swing out.

Link (free reg req'd)

In the news: God bless the 'standardized patients'

How much money would it take to get you to undergo a digital rectal exam for the sake of helping to train a med student? At the University of Wisconsin, $15 an hour is the going rate for 'standardized patients'; 'teaching associates' get up to $50 an hour. Snip:

'Standardized patients' get $15 an hour to complain about ailments from shoulder pain to fatigue. 'Teaching associates' receive $36 to $50 an hour, depending on their level of experience, to guide medical students through gynecological exams for women and genitourinary exams for men. 'Teachable moments' range from getting students to ask specific questions to elicit specific answers (not 'Do you drink?' but 'How many drinks do you have a day?') to sharpening technical skills that could mean the difference between finding tumors or not. 'I tell the students that they're never again going to have the experience of a patient saying, 'Move your finger a little more to the left if you want to feel my ovary,'' said Jane Crone, director of the teaching associate program.

Link

In the news: Baby's lingering cells

I caught an interesting science story on NPR this morning. Apparently, after a pregnancy, a woman ends up with a bunch of fetal cells in her body, and these cells linger in the woman for decades. What do these cells do? One idea is that they have some connection to autoimmune diseases, which women are more likely to develop. Another idea is that they serve as a supply of therapeutic stem cells, stepping to repair tissue damage when needed:

Some scientists have proposed that when a woman has a baby, she gets not just a son or a daughter, but a gift of cells that stays behind and protects her for the rest of her life. That's because a baby's cells linger in its mom's body for decades and -- like stem cells -- may help to repair damage when she gets sick. It's such an enticing idea that even the scientists who came up with the idea worry that it may be too beautiful to be true.

Link

In the news: NYT on alternative therapies

NYT's series on being a paient continues. This week, NYT looks at the continued rise in the number of Americans who've turned to alternative or 'complementary' therapies. Snip:

48 percent of American adults used at least one alternative or complementary therapy in 2004, up from 42 percent a decade ago, a figure that includes students and retirees, soccer moms and truckers, New Age seekers and religious conservatives. The numbers continue to grow, experts say, for reasons that have as much to do with increasing distrust of mainstream medicine and the psychological appeal of nontraditional approaches as with the therapeutic properties of herbs or other supplements.

This straying from conventional medicine is often rooted in a sense of disappointment, even betrayal, many patients and experts say. When patients see conventional medicine's inadequacies up close — a misdiagnosis, an intolerable drug, failed surgery, even a dismissive doctor — many find the experience profoundly disillusioning, or at least eye-opening.

I hafta say, after reading this one, I still don't get it. I'm not sure, though, if it's because people who turn to complimentary and alternative medcine (CAM) are beyond explanation, or if it's because the article fails to tell the story in a way that makes sense. Snips:

"I do partly blame the drug companies and the money they make" for the breakdown in trust in the medical system, said Joyce Newman, 74, of Lynnwood Wash., who sees a natural medicine specialist as her primary doctor. "The time when you would listen to your doctor and do whatever he said — that time is long gone, in my opinion. You have to learn to use your own head."

And so ended the relationship. With help from friends, Ms. Paradise raised about $40,000 to pay for the Arizona clinic's treatment, plus living expenses while there. "I had absolutely no scientific reason for choosing this route, none," she said. "I just think there are times in our life when we are asked to make decisions based on our intuition, on our gut instinct, not based on evidence put in front of us, and for me this was one of those moments."

"We pray with patients, with their permission," said Mr. Wood, who also works with local medical doctors when necessary. "If patients would not like us to pray for them, we don't, but it's there if needed." He added, "Our goal here is to help people get really well, not merely free of symptoms."

Maybe I'm missing something.
Link (free reg req'd)

Money: Thirty and broke

Business Week puts some ink into "the economics of being 30." The gist of it: we thirty-somethings are just starting to do the kind of things that grown-ups do (getting married, buying a house, having kids, etc.), and it has everything to do with money. Snip:

In myriad ways, the economics of being 30 have changed for the worse. A college degree is now the minimum required to find a place in the working world that affords some job satisfaction and material comfort. But it doesn't offer protection against turmoil in the labor market, as it once did. Nor does it guarantee such things as health insurance or a retirement plan. And real earnings for college graduates without an advanced degree have fallen four years in a row, for the first time since the 1970s.

The cost of higher education, however, has increased so dramatically in the past decade and a half -- up by 63% at public schools and 47% at private -- that more students have to borrow tens of thousands of dollars to attend, ensuring that many of them are paying off those loans well into their 40s. The median debt-to-income ratio now is about 8%. But fully one-quarter of graduates are paying more than 12% of their income, a level many financial experts regard as worryingly high. That burden will only grow: Interest rates on student loans are going up for the first time in five years.

I'm 35, but I don't quite fit the pattern BW's onto: I got married young--just 21 years old (wow!)--shortly before (wow!) graduating from college. My undergraduate debt of about $10K was significant for the time. A year later, I started law school. I figured the added debt from law school (another $40K) would be justified by the significant jump in earning potential, and it's worked out well for us: we were able to buy our first house in 1999, a couple years after I got out of law school. We've decided not to have kids, which has made things even easier for us, money-wise.

The wrinkle for us, though, is my illness. I was given a "probable multiple sclerosis" diagnosis in my last year of college, and it's had a significant influence on the economic choices I've made ever since. First off, it was a significant factor in deciding to get married. Without getting too far into it, I think I felt like, OK, time to grow up and get with it. Same thing with law school: my undergraduate degree was in philosophy, mostly because I didn't have any particular vocational plans, and philosophy was the major that required the fewest credits. After getting sick, law school was a pragmatic decision aimed at getting employed, having health benefits, making a decent salary. And since law school, my job choices have had a similar focus.

I feel like I've (we've) more or less done everything right, from a planning perspective. I gave up fantasies about being a rock star, poet, artist, iconoclast, or drifter at an early age. And yet, because of MS, I (we) are never too far from financial disaster. Sure, I've got disability coverage, but as a lawyer, I know that it isn't a great fit for someone with a degenerative illness, for someone who may be slowly losing the ability to work. Disability coverage works much better for somebody who falls off a roof, for someone with a sudden injury. For me, the question will always be, Is it time? And my answer to that question will have to factor in my best guess about how my employer and my employer's lawyers will answer that question.

So at 35, I'm contributing to a retirement plan, trying to make intelligent decisions about long-term finances. I use the Internet calculator gizmos to determine whether we're saving enough, and I plug in a retirement age of 65, but in the back of my mind, I'm thinking, What if I have to "retire" next month? I feel like crap this morning. Is there a calculator that factors that in?
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