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.
Wednesday, April 25, 2007
Monday, April 23, 2007
A craptacular weekend
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.
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.
Tuesday, April 17, 2007
Study: More GA is better
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
Link
Study: Tysabri reduces MS vision loss
Forbes.com reports that a new study finds Tysabri (which the report describes as "controversial") reduces vision loss by almost half. Snip:
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.
"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.
Wednesday, April 11, 2007
Managing managed care: PT
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?
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?
Thursday, April 05, 2007
Could pot ease MS progress, not just symptoms?
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:
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.
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
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:
Link.
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.
Wednesday, March 28, 2007
Lame contest
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:
Here, I'll get the ball rolling:
Prize? I haven't decided. Rules? I reserve the right to make them up arbitrarily. Go nuts.
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
1. Robin.
2. Crocuses.
3. End of maple sap.
4. Smelly asparagus pee (you know what I mean).
2. Crocuses.
3. End of maple sap.
4. Smelly asparagus pee (you know what I mean).
Wednesday, March 21, 2007
Is big pharma paying your doctor?
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:
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.
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.
Tuesday, March 20, 2007
Pool running
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.
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.
Monday, March 12, 2007
Early spring ritual
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.
Monday, March 05, 2007
Orange, apparently
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:
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?
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?
Wednesday, February 28, 2007
Happiness is...not breaking the skin
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.
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.
Monday, February 26, 2007
After a weekend blizzard, TGIM
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.
On top of everything, it's pledge week on public radio.
Wednesday, February 14, 2007
Study: treadmill training for MS patients
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.
Tuesday, February 13, 2007
States address health care; feds, not so much
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:
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.
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
A study involving HIV patients demonstrates that smoking pot is effective at relieving foot pain from peripheral neuropathy. Snip:
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.
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.
Thursday, February 08, 2007
What not to eat
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.
Wednesday, February 07, 2007
Education, money, and artificial milestones
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.
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.
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