Less miffed, less grumpy

Last Friday, I was feeling miffed and grumpy because the pain clinic wasn't getting back to me about the med changes we discussed at my appointment last Tuesday. I'd felt really positive about the appointment: the nurse practitioner had listened very carefully to me, and talked about some med changes and physical therapy stuff, and I thought I would be adjusting my meds that nite after dropping in at Walgreen's. I think it was something like cutting the Cymbalta down to 30mg/day to reduce my need to get up and pee half a dozen times every night, and add a little bit of amitryptaline to help me sleep. There was, however, a question about whether I would be getting too much serotonin, whether I'd have to change my dose of Serzone, and they'd need to get in touch with the psychiatrist who prescribes the Serzone.

When I went to the pharmacy, though, they said they didn't get a call from the pain clinic. So I called, and they said they hadn't gotten ahold of the psychiatrist. That was Wednesday. By Friday, I still hadn't heard, so I called and got the same repsonse. And while it seemed completely plausible that they were having trouble reaching the psychiatrist (who is only part-time at my HMO), I really felt like I needed to be doing something different.

When I got home on Friday, there was our friend L., who has lymphoma that hasn't responded to treatment (2 autologous stem-cell transplants and god knows what else). She'd been at the hospital that day getting fluids, because her gut wasn't working properly, and needed to have somebody look after her. She was pretty miserable, rushed to the bathroom every 15 minutes, and winced whenever she sat down. She ended up back at the hospital yesterday (getting fluids topped off), and my wife spent the day there with her.

Today, I'd really like to hear from the pain clinic. But I'm feeling a lot less miffed and grumpy, even though I had another night of intermittent, unsatisfying sleep.

Are democrats exploiting Michael J. Fox?

You've probably seen or heard about the ads: Michael J. Fox bobs and weaves while talking about a republican candidate's opposition to stem cell research. I guess there's one running in my state, now, too. Initially, Rush Limbaugh claimed Fox was gimping it up in the ads, either by skipping his meds or by simply faking up his Parkinson's symptoms. Later, apparently, he "apologized," but charged that "Michael J. Fox is allowing his illness to be exploited and in the process is shilling for a Democrat politician." Now, a hastily-produced response ad featuring some B-list celebrities is responding, urging that Missouri reject a ballot initiative on stem cell research (main points: initiative creates constitutional protection for stem cell research, poor women will be trapped into donating eggs for money, usable stem cell treatments still 15 years away).

I think the Fox ad is extremely effective, in a way that can't be neutralized by trotting out some pro-life athlete or actor. See, the public has already decided this one: whether they understand the science, whether they understand the work that remains to be done, they're in favor of helping sick people, and just as with in vitro fertilization, they're not as concerned with what happens to the embryos are they are with what happens to Michael J. Fox, because they are not of equal moral worth. And the ad just reminds them of this, in a memorable way. It's silly to think that they only feel this way because Michael J. Fox told them to.

But is Rush right? Is he being exploited? No. I doubt very much that Fox believes that he will benefit from stem cell research. I doubt he's getting paid scale. I doubt he's being held in the chair against his will until he finishes shooting a dozen spots. Is he a shill? Well, no more than anybody else who lends their name and image to endorse a product/service/cause/candidate.

Look, I know there a thousands of sick people who would be happy stand in for Fox; we'd love to tell the folks out there in TV-land about our illnesses, how our lives have changed as a result, and to talk about why it's so important that the government not squelch this research by closing the federal purse. I'm happy, though, that Fox is doing it, because everyone knows who he is, or was; because everybody knows his story; and because he's so darned cute.

And if Fox was exaggerating his symptoms, if he was gimping it up? Fine. I hereby grant to Michael J. Fox the right to supplement his symptoms with my symptoms: he's free to add a couple stutters, wobbles, and tremors, and, if he wants, he should feel free to wet his pants on my behalf, too, because nobody asked me to appear in an ad. If that's the worst distortion or deception that happens in a political ad this season, we can all rejoice.

Link to short NYT piece about the Fox ads.

What does Alzheimer's look like?

NYT has a riveting article and slide show about an American artist in London named William Utermohlen. Utermohlen learned he had Alzheimer's in 1995; the Times shows some of his self-portraits from 1995 through 2000. Now 73, he lives in a nursing home and no longer paints. Snip:

The paintings starkly reveal the artist’s descent into dementia, as his world began to tilt, perspectives flattened and details melted away. His wife and his doctors said he seemed aware at times that technical flaws had crept into his work, but he could not figure out how to correct them.

“The spatial sense kept slipping, and I think he knew,” [his wife] said. A psychoanalyst wrote that the paintings depicted sadness, anxiety, resignation and feelings of feebleness and shame.

I wonder what a portrait of multiple sclerosis would look like. I used to dabble in art, but it gradually stopped being fun: I found I no longer had the energy required for the creative enterprise. Maybe that's what my portrait of MS would look like--a blank canvas, an unmarked sheet of paper, an instrument unplayed.

Living Legends Department: Saxophone Colossus

NYT has a lovely profile of legendary tenor sax player Sonny Rollins, who will be releasing his first studio album in about 10 years. I'm ashamed to admit that I thought he was no longer living; I assumed (and I suspect I'm not the only one) that everybody as good as Rollins was dead. Can't wait to hear the record. Snip:

Until recently, Sonny Rollins practiced his tenor saxophone in a cottage studio a short, loping distance from his house here, on the rustic property he and his wife, Lucille, bought nearly 35 years ago. Mr. Rollins, who has long been lionized, partly for his intense, solitary practicing — or woodshedding, in jazz argot — would often work in the cottage past nightfall. At the house, his wife would turn on the porch light so he could find his way back through the dark.

Lucille Rollins died not quite two years ago, and Mr. Rollins initially turned to his regimen for solace. “So I came out here a few times,” he said in his studio one recent afternoon, “and then I looked, and there was no light on the porch. It just kind of highlighted that, well, there’s nobody there now.” These days, he practices in the house.

Link.

Update on Wal-Mart generics

I seem to be getting a lot of thru-traffic looking for the list of generics included in Wal-Mart's $4 deal, so here's an update: Wal-Mart's expanding the list of drugs included and expanding the states where it will be offering the deal. Snip from WaPo:

The company's plan covers a month's supply of 314 prescription drugs. That number is made up of 143 drugs in a variety of dosages and solid or liquid forms. The program was launched in the Tampa area two months ago, as part of what the company called an effort to save working Americans money on health care.

The program was expanded to the rest of Florida two weeks ago, and yesterday it was extended to Alaska, Arkansas, Arizona, Delaware, Illinois, Indiana, Nevada, New Jersey, New Mexico, New York, North Carolina, Oregon, Texas and Vermont.
....
Health-care experts said any price competition is welcome, but noted that generics are less of a burden to consumers than higher-priced brand-name drugs that remain under patent. Critics, including rival non-chain pharmacies, said the plan covers only a fraction of a prescription drug market that includes about 8,700 FDA-approved generics. "This is a public relations stunt meant to drive foot traffic. Most people will find their prescriptions do not fall under the $4 plan," said Charlie Sewell, senior vice president of government affairs at the National Community Pharmacists Association, which represents about 24,000 non-chain pharmacies.

Here's a link to an updated list of covered drugs, which now includes lovastatin.

I'm still not impressed, and I think it's downright goofy to tout this as some kind of market-based solution to the problem of access to health care. This is a teeny slice of the whole list of generic drugs out there. And let's don't forget that you still need to see a doctor to get these drugs, so you're still on your own for the most expensive part of the transaction.

That said, I think it's brilliant marketing on Wal-Mart's part. It'll get gazillions of people through the doors, at least until they find out their drugs aren't on the list, and it buys some badly-needed good press for Wal-Mart. I'm not a rabid WM-hater, but even if this included one of the drugs I'm on, it wouldn't get me to drive all the way out to Wal-Mart when Walgreen's is just few minutes away.

A gift and a slow start

It's fall for sure, now. On my way home from work last night, about a block from my house, I spied a suspiciously lumpy little pile of leave under a small oak tree in a neighbor's front yard, and pulled a quick U-turn. A closer look confirmed a delicious find: a mushroom known as the hen of the woods. Big, too: about the size (and weight) of a ten-pound sack of potatoes.

My interest in mushrooms goes back to occasional tramps in the woods with my dad in search of morels when I was a kid. Since then, I seem always to keep an eye out for one of the "safe six" that I feel confident enough to eat (shaggy mane, sulfur shelf, oyster, morel, hen of the woods, and giant puffball). I got out of the car, trudged through the drizzle. and knocked on the door. No answer, so I turned and scooped up the big shroom and put it on a towel in the car. I spent about an hour pulling off some nice clean pieces and cutting them into thumb sized-pieces for drying. Hen of the woods makes a lovely creamy soup or stroganoff-type ragout.

Had a bad night and morning, though, and I'm dragging ass pretty badly today. Went something like this:

10:15 Rebif, pills, and bed. Mmmmm, cozy.
11:39 Wake up, pee. Back to bed.
1:24 Wake up. Hip and shoulders sore (swimming?). Sigh. Pee. Back to bed.
3:42 Wake up. Sore, again, hip and calves. Sigh. Gotta pee, but don't wanna get out of bed. Sigh. Pee.
5:15 Wake up. Sore. Fan making annoying little rattle. Sigh. Roll over.
5:38 Wake up. Gotta pee. Sigh. No, maybe not. Well, actually, yeah. Sigh. Pee.
6:05 Alarm goes off. Wake up, sigh. Dawn simulator has bedroom light up to 25% or so. Listen to NPR, doze back to sleep again.
6:30 Wake up. Dawn simulator has bedroom light up all the way. Listen to annoying clip from Rahm Emanual interview. Sigh. Wife opens door, dog stands up and comes over to sniff my hair. Out of bed, into sweats and bathrobe.
6:37 Let dogs out. Rub eyes. Sigh. Feet hurt. Too much standing up to pee in bare feet? Let dogs back in.
6:46 Coffee. Mmmmm. Sit down and stretch a little. Still sore.
6:52 Feed dogs. Sit on recliner to make sure alpha dog doesn't interfere with yellow dog's breakfast. Sigh.
7:01 Shower. Brr. Yellow dog barks, has to poop right after breakfast. Wish I could do that. Hurry out of shower. Let dogs out again.
7:11 Stand in front of closet. What to wear? Only clean trousers are itchy wool ones. Dang.
7:22 Stalled after sitting down to tie shoes. Am I really gonna go to work? Yes, I am going to work, because today is not yet The Day. Sigh. Am I sure it's not The Day? Yes, I'm sure.
7:37 NPR says somebody in the state won $15M lottery jackpot last night. Bastard. Bet he or she isn't going to work today.
7:43 Stalled again, this time on futon. Think about looming home improvement project and hail-damaged roof. Sigh.
7:49 No milk left for cereal. Dang. Sigh. Brush teeth. Sit down at computer, check email. Goofy joke message from kid sister. She's a funny kid. Wait, am I stalled again? Dang. Sigh.
8:08 What can I take for lunch? Gaze into fridge, sigh. Grab apple and bag of prunes. Sneeze.
8:16 Final approach. Where's the phone? Charging. Where's the iPod? Charging. Locate car keys and wallet, unplug phone and iPod. Sigh.
8:21 I'm late. Yellow dog knows I'm leaving for real now, and follows me into bathroom. Pee. Glance in mirror, check for sleep drool, boogers. Clear for take-off.
8:25 Finally in car. Sigh.

Pool at noon

I've been trying to get to the pool to swim a few laps at least twice a week. Up until a couple weeks ago, I was doing pretty well, but two busy weekends kinda got me off track. Fortunately, the pool (at the high school near where I live) is open for lap swimming from 11:30-1:30. Today, I ditched work at 11:40 and met my wife at the pool. I got to school promptly at noon, swam half a dozen laps, showered, and got back to my desk at 1:00. Pretty slick, and at $1.50 a visit, deeply satisfying to my inner cheapskate. I hope I can keep it up through the winter, because a 20-25 minute swim really feels good without leaving me legless for the rest of the day.

Aquaman: "Shyeah."

So it's Monday, and I had a nice weekend goofin' around with some old friends who know me from way back when I was a strapping young man fresh out of law school, and thinking about how times change and people change and we got to hang onto each other because we could all, like, vaporize or melt or disappear without warning at any time onnacounta any little freaky midget head-of-state can get his/her hands on a nukular bomb, when I stumbled over this piece at McSweeney's by Glen Weldon. It's Aquaman, see, and he's pissed about all the snickering about him and his not-so-cool powers, because it's a bigger deal than you understand to be able to control sea life. Snip:

If I want, you know, a pod of Burmeister's porpoise to ram the hell out of Black Manta's Manta Sub, that shit gets done. If I totally want, like, a southern minke whale to go hump a giant squid (its most hated enemy, by the way), I just go doodoodoodoodoodoo and it's like Show World down there. Not that I would, because, you know, gross, but I'm just saying: I don't ask. I'm not going to be all, If you wouldn't mind terribly much, please, Mr. Southern Minke Whale, go get your nasty freak on with that giant squid.

Just, you know, FYI.

It's part of a serious of short imagined monologues, it's laced with profanity, and it's a great Monday read. Link.

MS, depression, and the future

I read an abstract this morning about MS and depression. Like depressed folks generally, MS patients who are depressed tend to have trouble anticipating future positive experieces; it's not so much about anticipated future negative experiences.

That fits. My own frequent visits to the blue side find me not so much dreading the future as struggling to find something to look forward to along with the dread. Of late, I've found myself thinking about my job, and how it's getting harder for me just to sit still at my desk, much less get anything done, and how the seemingly inevitable end of my career will no doubt be much, much worse: increasing difficulty precipitates crisis and confrontation, inevitable struggle with insurance company and SSDI, followed by years of financial woes.

Yesterday, when they announced the winner of the Nobel for literature--a Turk--I thought about how I used to fantasize about traveling to Turkey, and adventurous travel in general, and I thought, Well, I can't imagine going to Turkey in my present condition. Even three days at the cabin over the weekend was about a day and a half more than I found myself capable of enjoying (Jeez, I sure miss my own bed and big ugly recliner, etc.).

I'm sure that part of the solution is to carpe the diem and create things to look forward to, schedule and plan for things that feel good; that way, not only do you have stuff to look forward to, but you're doing something in the present. But how do you plan when you find yourself struggling to enjoy the stuff you know you enjoyed in the past?

Link to abstract.

First snow!

Right now, the first snow of the year is falling outside my office. For some reason, it still thrills me to see the first few flakes, just like it did when I was a kid. Of course, it will be weeks before this stuff stays frozen after it hits the ground.

Seems maybe just a wee bit early--usually we hafta wait until at least Halloween. I bought a little electric snowblower this year, and I can't freakin' wait to plug it in and throw some snow around!

Feds OK 90 days of Canadian meds

Hurrah for cranky old and sick people! The federal government will no longer seize prescription meds imported from Canada for personal use. Snip from WaPo:

Customs spokeswoman Lynn Hollinger confirmed the policy change Tuesday, saying the agency would no longer intercept the drugs or issue letters to postal carriers indicating it is illegal to import prescription medications. She said the policy change was due to political pressure from lawmakers and people who complained they were no longer receiving their medicine.

[Sen. Bill] Nelson said that the new policy will allow Americans to import small amounts of prescription drugs - roughly a 90-day supply.

"It's a great victory, particularly for the senior citizens who are having difficulty making financial ends meet in a time in which, sadly, some senior citizens have to make a decision between buying their prescription drugs and buying their groceries," Nelson said.

The change means that the U.S. Food and Drug Administration will resume oversight of the importation of prescription drugs. Before Customs took over enforcement the FDA largely ignored the importation of small amounts of prescription drugs. It is still illegal to import prescription drugs from abroad, but Nelson said he received assurances from the FDA that the agency will not act on small drug shipments for individuals.

Link.

I presume you will still need to import your 90-day supply of pot from BC in the trunk of your car.

When pooper-scoopers attack!

A woman with a history of alcohol abuse and drug use was sentenced Monday to two years in prison for attacking a Waukesha couple she didn't know with a metal pooper scooper and scissors in a bizarre middle-of-the-night assault. Snip about the incident in June:

It took five police officers, three hits with a Taser gun, leg straps and a spit bag to subdue a 5-foot tall, 105-pound woman who entered a Waukesha home and attacked a couple she didn't know with a metal pooper scooper and scissors, authorities said. Still kicking after being strapped and handcuffed, the woman was carried by police out of the home in a bag, and she looked "like a sack of potatoes," the homeowner said.
....
Waukesha residents John and Linda Dormer said they do not know [attacker Leisa] Reed and kept telling her she was in the wrong house, John Dormer said Monday. Reed kept saying that someone was going to kill her and threatened to kill the Dormers, he said. "I tried to reason with her," he said. She then hit him with the pooper scooper and armed herself with two scissors, he said. He said he feared for his life and the lives of his family. Two of the couple's children, 12 and 13, also witnessed the attack. The Dormers are OK but still shaken up, he said. They credit their dog, rescued from a shelter in Oshkosh, with alerting them to the intruder and saving their lives.

Reed told authorities she doesn't remember being in the Dormer's home. She told police that a friend picked her up at her apartment in Milwaukee on Saturday evening and took her to her friend's apartment in Waukesha. Reed's husband, Matt, was also there, the criminal complaint says. Reed said she drank a 12-ounce can of beer and purchased $40 in crack cocaine, which she smoked at her friend's apartment in Waukesha, the complaint says.

Link.

36

A gorgeous fall weekend: unnaturally blue sky, cool air so dry and crisp it crackled in your nose, the ash tree dumping the first load of spent leaves onto the yard and into the gutters. This is what the weather is supposed to be like when my birthday comes around. We cancelled our reservation at the fancy restaurant and roasted weenies over a fire in the back yard instead. But when the beer wore off the next morning, I was miserable.

I'd bumped up to 40 mg Cymbalta on Thursday, which also meant cutting my daily dose of Lyrica to just 150 mg. Most of my body was either aching or burning, and I hadn't been able to sleep most of the night. I was also having more trouble walking. The day before, my legs seemed to have gotten twice as heavy, especially the left one, and I seemed to be using my trunk muscles to help hoist myself around.

At 10:00 am (on a Saturday!), my neurologist called to say that my head MRI from Wednesday looked pretty good: some characteristic MS lesions, sure, but the burden of disease on my brain looked quite light considering I developed MS more than a dozen years ago. We'll do a C-spine MRI sometime soon, but things look good up there. "No excuses now; you'll have to win every case," he joked. I could feel myself getting prickly, and reminded him that I no longer worked in court, but forced myself to say something like "That's great news."

I didn't really think it was great news, though. I think I'd been secretly hoping that my MRI would show that my brain had turned into butterscotch pudding, that it was a miracle I was able to tie my own shoes, that it was only by virtue of my miraculous determination and strength of character that I still managed to function as well as I do.

For whatever reason, I spent most of my birthday weekend in a funk, watching birds at the feeder from my recliner or staring at the TV or the computer. Yesterday, I did more or less the same thing at work, thinking about the impending end of my working life and the great unpleasantness that will no doubt happen as it starts to become apparent to my supervisors and coworkers that I'm not carrying my own weight. Today, like yesterday, I'm walking slowly and stiffly, coasting on this morning's caffeine buzz, wondering if my bowels are still doing their job, thinking about the impending up-tick in my workload, thinking about home improvement projects that have stalled, thinking about the new strain MS is throwing into my marriage, thinking about a planned weekend at the cabin that could be spoiled by my inability to haul my sorry ass down the hill to the lake to watch the wobbly, noisy V's of geese on their way to somewhere else.

Journal: One week on

It's been a week since my latest go-round with Cymbalta. As of tonight, I'll be down to just 150 mg of Lyrica and up to 40 mg of Cymbalta. So far, so good, I guess. I can definitely tell that I haven't had a serving of Lyrica this morning: thighs are on fire, so I'm slouched way down in my chair to keep my weight on my back and butt and off of my thighs. But over the last seven days, I only wet the bed once, which is within usual limits. We'll see how things go when the dose goes up tonight.

technorati tag: multiple sclerosis

In the news: What health care crisis?

In the news lately, there's been lots of ink spilled about the 7.7% rise in the cost of health coverage over the past year. But the first thing I read after my MRI this morning was a piece in the NYT by David Leonhardt arguing that the increased cost isn't really a problem, because most of the increase is attributable to the deployment of new technologies that have extended and improved life. According to Leonhardt, there may be some waste in the system, but the only way to achieve real savings is to limit care. While he acknowledges that the current trend is unsustainable, Leonhardt argues we should, as a society, acknowledge that better care is worth paying for. Interesting read. Snip:

Somehow, going to the mall to buy clothes has come to be seen as a vaguely patriotic way to keep the economy humming, and taking out a risky mortgage is considered to be an investment in one's future. But medical care? That's just a cost.

It's easy to be against high costs, and it will no doubt be hard to come up with a broad health care solution. But the way to start is by acknowledging that an affluent society should devote an ever-growing share of its resources to the health of its citizens. "We have enough of the basics in life," Mr. Cutler, the economist and author, points out. "What we really want are the time and the quality of life to enjoy them."

Link. And see this post about the future health care economy.

Research: Nabilone for spasticity pain

Some promising results in a test of a synthetic cannabinoid for spasticity-related MS pain:

J Neurol. 2006 Sep 20; [Epub ahead of print]
Low dose treatment with the synthetic cannabinoid Nabilone significantly reduces spasticity-related pain : A double-blind placebo-controlled cross-over trial. Wissel J, Haydn T, Muller J, Brenneis C, Berger T, Poewe W, Schelosky LD.

About 30% of patients with chronic upper motor neuron syndrome (UMNS) suffer from disabling spasticity-related pain not sufficiently correctable by conventional treatment. Delta9-tetrahydrocannabinol (Delta(9)-THC) was reported to add benefit in the treatment of pain in patients with multiple sclerosis (MS). The question arose whether synthetic cannabinoids with lower potential for psychotropic side effects could be effective as well. To evaluate the safety and efficacy of low dose treatment with the synthetic cannabinoid Nabilone (1 mg per day) on spasticity-related pain a placebo-controlled double-blind crossover trial was performed.11 out of 13 included patients completed the study. The 11-Point-Box-Test showed a significant decrease of pain under Nabilone (p < 0.05), while spasticity, motor function and activities of daily living did not change. 5 patients reported side effects: one moderate transient weakness of the lower limbs (Nabilone phase, drop out), three mild drowsiness (two Nabilone, one placebo) and one mild dysphagia (placebo). One patient was excluded from the study due to an acute relapse of multiple sclerosis (Nabilone phase, drop out).Nabilone 1 mg per day proved to be a safe and easily applicable option in the care of patients with chronic UMNS and spasticity-related pain otherwise not controllable.

Link.

In the news: Wal-Mart's $4 generics list

Here's a link to a list of drugs included in Wal-Mart's $4 generics menu. I see only one that I'm currently taking on the list: baclofen. Also on the list are an assortment of tricyclic antidepressants, antibiotics, and generic Prozac. Seems pretty underwhelming.

In the news: Cladribine on FDA's fast track

Snip from CBS news:

Swiss biotech firm Serono SA, which earlier Thursday agreed to sell a majority stake in the company to German drugmaker Merck KGaA for $13.31 billion, said its oral cladribine treatment for multiple sclerosis has received 'fast-track' status from the U.S. Food and Drug Administration. This designation covers patients with relapsing forms of multiple sclerosis.

Serono's oral form of cladribine is currently being evaluated in a multi-center, multi-national Phase III study called CLARITY. It is a two-year, double-blind, placebo-controlled study involving more than 1,200 patients. Patient enrollment is planned to be completed by the end of 2006.

This kind of news used to get me all excited, but not so much anymore. I'm not sure, but I think I'm probably more secondary-progressive than relapsing-remitting. (Is this something I need to know, what form of MS I've got?) It's been years since I had a recognizeable exacerbation. These days, I'm more interested in finding pain relief than in reducing the number of enhancing lesions or whatever clinical measure is used to tout the latest MS drug.

Not that I'm complaining about the way things have turned out for me: I'm about 14 years out from my initial MS symptoms, 13 years past diagnosis, and I'm still mostly upright. On Wednesday, my neurologist told me that at this stage in the game, most MS patients aren't doing quite as well. Neurologically, my grades are pretty good, I guess, except the pain.

Last night, I started Cymbalta again. Third time's the charm? We'll see. The urologist says double up on the Flomax to counteract Cymbalta's retention effect. For the last couple days, I've left the office at 4-ish, because the burning and squirming left me completely unable to get anything done. Here's hoping Cymbalta will improve things, because my work load is steadily ramping up.

Link to CBS story.

Journal: Neurologist visit, and Segseat

Yesterday morning, I woke up, threw on some clothes, and raced over to the clinic. I'd forgotten to set an alarm, and it's been a long time since I managed to get out of the house so quickly (no shower, no shave, no coffee, no stretching, no letting out and feeding dogs, etc.). I made it with a couple minutes to spare, so in the waiting room I opened up an issue of the MS Society's magazine Inside MS. I think there was a time when I got it in the mail, but at the time I was put off by the images of smiling people in wheelchairs. "Soon, you'll be one of us," they seemed to be saying, cheerfully. "We're saving a little red scooter just for you." This time, though, I found myself flipping through the little ads near the back for MS-related products and services: cooling vests, lap pools, lifts, etc. One caught my eye: a seat for use with the Segway.

Back when the Segway was introduced, it seemed to have a lot of potential as a mobility aid. At the time, walking was getting more difficult for me, and I imagined rolling around on a Segway as a way to extend my range. But as it got difficult just to stand in one place for any length of time, the Segway seemed a lot less appealing, and it drifted out of my daydreams. Seeing the ad for the Segseat has it back in again.

The Segseat is a nifty little gizmo that allows you to sit on a little bike-type seat while operating your Segway. It seems pretty well designed: it mounts on the post that the 'handlebars' are attached to, and it slides back and forth so as you change the angle of the Segway, your butt remains in approximately the same position. You can flip it up and out of the way if it's not in use. It's a little hard to describe, but there's a video at the web site. Problem is, it adds another 750 clams to the $5,000 price tag of a Segway, so it's unlikely to appear outside my
daydreams any time soon. But it would really be lovely to go for a 'walk' that takes me more than a few hundred yards from home base. Here's the fantasy: heading out to a state park with wife and dogs on a crisp October day, and wandering into the woods (on a very well-groomed trail) a mile away from the parking lot. That would be dreamy, almost like the good old days.

Not much new at the neuro: let's not try Novantrone yet, let's see if we can find a way to get good pain relief and get a brain MRI just to see if there are any active lesions. Observed by a young intern who sat quietly through the whole visit until neuro mentioned something to do with fMRI, and which point she lit up and starting talking about this research and that research, prompting the neuro to get a little exasperated and cut her off. It was somehow very appealing to see someone have a little geek-gasm about neuroscience. Makes one a little more hopeful about the prospects for a cure someday.

Journal: Tough luck

In the NYT today, an essay about medicine and luck (or chance, or what you will). The gist: medical science may have improved your chances of a positive outcome, but there's still plenty of room for failure, and the occasional lucky break. Snip:

Luck seems to have become particularly anathema in an era of evidence-based medicine, in which physicians and patients are encouraged to learn the latest relevant data to guide decisions. Dr. Peter A. Ubel, a University of Michigan internist and author of "You're Stronger Than You Think," believes that his patients prefer biological explanations of why they are sick, rather than hearing that they have bad genes or bad luck. But given the biological variability within given diseases, like cancer, and the fact that variable genetic makeup leads different individuals to respond differently to diseases and therapies, even better scientific knowledge will not eliminate the role played by luck. Chance, the British physician R. J. Epstein wrote in the Quarterly Journal of Medicine, ensures different outcomes within given sick populations.

I would guess that MS patients, as a group, probably understand this idea better than others. It starts with that consult with the neurologist where he show you some blurry little patches on the MRI, and tells you that you might have MS, or you might be fine, but it's impossible to say at that point. It continues with every new tingle, tremor, tic, every new symptom or disability. And every new drug you get: studies indicate that subjects who took the drug were 30% less likely to have new exacerbations/were 25% more likely to remember where they put the car keys/were 12% less likely to punch the bus driver/were 66% groovier/were 72% more likely to fit into their jeans/were 17% less likely to miss a mortgage payment/were 59% less likely to chew off their own feet.

Then there's the subset of those of us with pain. We are exquisitely conscious of our rising and (mostly) falling fortunes. We fill shoeboxes with drugs that didn't work, or stopped working, or that we tried because our insurance companies wouldn't pay for the drug the doctor prescribed until we tried the half-dozen cheaper alternatives. Anyone need Neurontin? I have buckets of the stuff, plus a bunch of pills with names that end in -amine, and some Lyrica that will probably be left over when I switch back to one of the losers to give it another try.

Nobody needs to explain to us that medicine is partly science and partly art. We are the canvas upon which medicine doodles: Drug not working for you? Try playing around with the dose. If that doesn't work, we'll try something else, something we're studying, something off-label, and feel free to play around with that, too. If that doesn't work, put all your meds into a blender with some yogurt, some orange juice, a banana, and some honey, and make a smoothie. Feel free to play around with that.

When it still hurts, the artsy side of medicine -- the side that we haven't had good luck with -- looks to us like Jackson Pollack, or de Kooning. Art? we scoff to ourselves. Shit, a four-year-old could have come up with that.
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