Wednesday, August 31, 2005

Yay herring!

Coming from Swedish stock, I have a soft spot for that fish-of-all-trades, the herring. For me, it's just the pickled stuff in wine sauce, with a pinch of fresh dill. I also take fish oil pills, on the odd chance that it's good for MS or heart health generally. Someday, I hope to try surstromming (fermented herring!) Just try and stop me.

Link to article about herring in The Independent.

Biogen seeks stronger Tysabri label warning

The head of Biogen Idec says his company will recommend a stronger warning label for a multiple sclerosis drug it hopes to return to the market. James Mullen, Biogen's chief executive and president, told The Associated Press today that the company will recommend that regulators include a warning about Tysabri's link to a rare but often-fatal brain disease.

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Journal: Feeling dull

After a streak of good weather like we've been having, it's so easy to forget just how easy it is to go from feeling chipper to feeling shredded.

Last night, I went a little manic. After work, I went out and mowed the front yard, dashed off to do some volunteer stuff, and came home by way of the grocery store. Then I stayed up too late reading about the tragic destruction caused by hurricane Katrina. Went to bed at about 11:30, ending up on the futon because the bed was in a state of disrepair. Woke up at 2:30, realized I'd forgotten my evening meds (serzone, baclofen, sanctura, neurontin, and melatonin), decided it was too late to take them, and spent the next four hours getting up to pee every half hour or so. Where in God's name did my kidney's get all that pee from?

Now I'm at work feeling sleep-deprived, stiff, sore, and stupid. I spent Monday and Tuesday procrastinating at work, so I've got lots to get done, but I'm not sure that's going to happen today. Perhaps a second dose of Provigil at noon is in order.

Tuesday, August 30, 2005

Tysabri update

I've got the WSJ article (by Sylvia Pagan Westphal) now. Here's the gist:

Stephen Harr, a Morgan Stanley analyst, prepared a note based on adverse-event (AE) reports submitted to FDA, which the analyst obtained by a request under the Freedom of Information Act. In addition to the already-publicized fatalities from progressive multifocal leukoencephalopathy (PML), Harr noted the AE file documented 7 additional fatalities among Tysabri patients. One was attributed to pneumocystis pneumonia, another to herpes encephalitis, and four others to sepsis. The Tysabri AE file also documented "numerous" nonfatal infections.

Biogen, who markets the drug with Elan, has downplayed the significance of the data in the AE file. A Biogen spokesman said a Biogen/Elan analysis found no statistically significant differences in serious adverse events between Tysabri and a placebo in several clinical trials.

FDA has declined to comment.

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Monday, August 29, 2005

Regulating access to medical pot in Palm Springs, CA

In what some view as a pre-emptive strike against the statewide marijuana use registration program, Riverside County has temporarily banned all medical marijuana dispensaries in all unincorporated areas. County leaders say the 45-day prohibition, which has the potential to become permanent, will allow the county to put zoning in place that regulates where dispensaries can be placed. They predict that the county will see an influx of such locations as it prepares to locally implement the state ID card for patients...

But medical marijuana advocates like Lanny Swerdlow say that the broad definition of "dispensaries" will also outlaw cooperative groups of patients who grow their own.

Link to story in The Desert Sun.

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Stock analyst "uncovers" unsurprising information about Tysabri

UPI says:
A stock analyst has uncovered information suggesting that a recently withdrawn multiple sclerosis drug suppresses the immune system.

It sure doesn't seem like it would be necessary to file a FOIA request to learn that Tysabri suppresses the immune system. Unless this intrepid stock analyst learned some details about this suppression, I'm not sure why this is news. If the stock analyst did learn details, then let's have 'em.

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Sunday, August 28, 2005

MS risk in relatives of people with MS

For first-degree relatives, add 2.5% to the risk to the general population (0.3% for men, 0.5% for women). No additional risk for spouses, though.
By modeling the individual incidence rate of MS as the sum of a familial component and a sporadic risk component, the familial excess lifetime risk was found to be 2.5% (95% confidence interval: 2.0, 3.2) among first-degree relatives of MS patients, irrespective of the gender of the proband and the relative. This percentage should be added to a sporadic absolute risk in the general population of 0.5% in women and 0.3% for men. Spouses of MS patients did not experience an increased risk of MS, suggesting no major role for environmental factors acting in adulthood.

Link to abstract.
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Friday, August 26, 2005

What Morgan Stanley says about Tysabri's future

For what it's worth, Morgan Stanley thinks Tysabri will return to market, but its commercial impact "may be limited." Can someone explain why Morgan Stanley knows more about the drug's future than you or me?

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Thursday, August 25, 2005

MS patient denied medical pot at VT nursing home

A man who qualified for the state's medical marijuana registry cannot use marijuana to ease the pain of multiple sclerosis because he lives in a nursing home, pointing to a potential flaw in the state's 2004 law...

Starr Farm Nursing Center administrators said in a statement Wednesday that they cannot allow marijuana on the premises because the federal government doesn't recognize Vermont's medical marijuana law and the nursing home receives federal funding. That advice came from state registry officials at the Department of Public Safety, the statement said.

"A registry representative informed us that because our facility receives federal funds, and federal law prohibits the possession and use of marijuana, its possession and use in our facility is against the law, and therefore is strictly prohibited," the statement said.

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Wednesday, August 24, 2005

Doctor, are those leeches and maggots FDA-approved?

Ick. From the NYT:

Leeches, it turns out, are particularly good at draining excess blood from surgically reattached or transplanted appendages. As microsurgeons tackle feats like reattaching hands, scalps and even faces, leeches have become indispensable. And maggots clean festering wounds that fail to heal, as among diabetics, better than almost anything else, although their use in the United States has been slight, in part because of squeamishness.

But neither leeches nor maggots have ever been subject to thorough regulation by the Food and Drug Administration. So the medical advisers are being asked to create general guidelines about how they should be safely grown, transported and sold.

Link (free reg req'd)

There's a brain in your gut, too, smart guy.

Today's NYT has an interesting piece on the enteric nervous system, which is in charge of running your gut:
Two brains are better than one. At least that is the rationale for the close - sometimes too close - relationship between the human body's two brains, the one at the top of the spinal cord and the hidden but powerful brain in the gut known as the enteric nervous system.

The connection between the brains lies at the heart of many woes, physical and psychiatric. Ailments like anxiety, depression, irritable bowel syndrome, ulcers and Parkinson's disease manifest symptoms at the brain and the gut level.

Can MS-related demyelination can affect the enteric nervous system? If so: yuk.
Link (free reg. req'd)

Convicted U.S. felon's "Cures" tops book charts

Who are the people peddling, and profiting from, natural "miracle cures"? One of them is Kevin Trudeau, author of the best-selling "Natural Cures 'They' Don't Want You to Know About."
Trudeau, who for years sold snoring remedies and memory enhancers through long-format commercials dressed up as talk shows, says he is a consumer advocate battling the "unholy alliance" of drug companies and government regulators. "It's all about money. The drug industry does not want people to get healthy," he says in a commercial for his book. Trudeau says he has sold about 4 million copies of the book in less than a year, a huge amount for a self-published book marketed initially only through the Internet and television infomercials.

The book -- whose back cover says "Never get sick again!" and "Learn the specific natural cures for herpes, acid reflux, diabetes ... cancer ... and more!" -- has topped the Publishers Weekly nonfiction bestseller list for the past three weeks.

Trudeau, 42, was jailed for 22 months in the early 1990s over credit card fraud -- something Trudeau dismissed as nothing more than a youthful indiscretion.

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Experts agree: it's now OK to talk about your bladder problem

Once unmentionable, the problem of bladder control has finally come out of the water closet, and is getting much-needed attention from health-care and pharmaceutical companies, experts say.

Link to story at Grand Forks (ND) Herald.

Starbucks will now be sponsoring special Incontinence Hours when people will be encouraged to talk about their "leaky water works," with $1 off espresso drinks. (Just kidding.)

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Tuesday, August 23, 2005

What is appropriate physical therapy for MS? Who decides?

I recently stumbled on a compilation of a number of abstracts on MS and physical therapy collected in the 10/04 issue of the medical journal Multiple Sclerosis. Unlike most of the journal's content, this was available for free. Glancing at the abstracts, I started thinking about my own experience with PT.

My current neurologist suggested PT a couple years ago. I think we had been talking about ways to manage my increasing physical fatigue and leg pain; I don't remember exactly. He had specifically suggested going to the PT clinic that is affiliated with our local university hospital, where he practices and teaches. My HMO, however, has its own physical therapy clinic, located on the other side of town, and wouldn't approve the university PT clinic.

So I went to the HMO clinic, where I saw 'Frank,' a very nice Ph. D PT. At my initial visit we talked about my symptoms and history, and he moved my limbs about a bit to guage spasticity and flexibility, or whatever. He also bent my legs a bit to gently stretch my hamstrings. He then printed out a list of exercises to do and gave me a stretchy cord to use in performing the exercises. We scheduled another appointment a week later, and Frank told me to bring my swimming suit. One of the touted benefits of the HMO PT clinic's location is that it's inside this gigantic fitness club with machines and a track and a pool and 20 flat-screen TVs on the wall. So I showed up the next week and after stretching my hamstrings briefly, Frank and I went down to the pool where he showed me a number of exercises I could do in the water. And he gave me a card that let me use the fitness club for free.

For the next year or so, I did my home exercises (with diminishing frequency) and went across town to the fitness club (with diminishing frequency) to do the water exercises. Every three weeks or so, I went to see Frank, who would spend 10 minutes stretching my legs in various ways and then send me down to the pool. After a year, my referral ran out, so I called the HMO.

I asked if they would extend the referral; they gave me half a dozen more visits to Frank, but that would be the end, because they don't pay for "maintenance therapy." Would they approve a referral to the university PT clinic? No. So that was the end of PT for me.

Now, I'm having more trouble with balance and strength, and it's showing up in things like sometimes using my hands on the wall to steady myself while going around a corner, sometimes using an ersatz walking stick to help with balance, tending always to use my right leg to get up from the floor after yoga, and so forth. From the research I glanced at, PT has much to offer the MS patient.

Did I get what I should have got out of PT the first time round? Who decides? When can I try going back to PT, given the "no maintenance therapy" rule?

Link to free content from Multiple Sclerosis (free reg req'd?)
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Monday, August 22, 2005

So much for the hygiene hypothesis?

From Reuters:

According to the hygiene hypothesis, being too clean is not a good thing. Infections at an early age actually trains the immune system to respond appropriately to the environment, and this protects kids against certain diseases like asthma and MS, so the argument goes. Having older brothers and sisters should raise the odds of such infections, and therefore reduce the risk of MS...

Late birth order did not cut the risk of MS, the researchers report in the online issue of The Lancet Neurology medical journal. In fact, in large families with only one affected sibling, there was some evidence that late birth order actually raised the risk, as affected siblings were slightly younger than unaffected siblings. "This study does not support the prediction of the hygiene hypothesis," the team concludes.

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Sunday, August 21, 2005

Article about autologous stem cell transplants for MS

Kim from Mandatory Rest Period and the MS Podcast pointed me to a story that discusses research on autologous stem cell transplantation as 'rescue therapy' for MS. The procedure involves destroying the immune system with a near-lethal dose of chemotherapy and then replacing it with stem cells from the patient's blood and bone marrow. The article is based on a CTV documentary called "The Pioneers."

Under Dr. Freedman's careful watch, John coped well with the punishing treatment. But then suddenly, his liver started to give out after weeks of brutal chemotherapy. "It was a known complication that can occur when you use very high doses of that particular agent," explains Dr. Freedman. John's liver never recovered. He was just 40 when he died.

As John's family mourned his death, Dr. Freedman also struggled with the loss. "We're allowed to have I think two deaths out of the first 18 patients or something is what we figured for," he says. "Well, I was figuring on none. And I was not prepared to accept even one." Freedman says John was a hero. His widow prefers to call him a pioneer.

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Saturday, August 20, 2005

From the LA Times: Disability insurance fails a woman with MS

Disability insurance, — now carried by more than 50 million Americans — generally promises to replace at least half of a person's wages in case of illness or injury. However, in a substantial number of cases, especially those involving workers with long-term or permanent disabilities, it doesn't deliver.

The chief reason — and one that affects not only disability but also the whole universe of employer-provided benefits — is a series of court decisions dealing with the federal benefits law known as ERISA. The decisions have prevented states from extending almost any form of consumer protection to these benefits, and have severely limited individuals' ability to successfully sue their insurers.

'People who file disability claims today are worse off than they were two or three decades ago,' said Judge William M. Acker Jr., who was appointed to the U.S. District Court in Alabama by President Reagan. 'The law that was supposed to protect them has been turned on its head; the chief beneficiaries are now the insurance companies,' said Acker, who has presided over a variety of disability insurance cases and has written extensively on the subject.

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Our next car?

It's another hot, soggy, indoor-kinda day. Perfect day for clipping toenails, sweeping up the tumbleweeds of dog hair rolling around the kitchen floor, and speculating about which car will fill the commuter-car slot currently held by our loyal Geo Prizm. We love that car, but it's time to to think about replacements. How about the Honda Fit, coming to the US next spring? I think it might be perfect.

Link to item at Autoblog.

Thursday, August 18, 2005

From NYT: M.R.I. Scanners' Strong Magnets Are Cited in a Rash of Accidents

Safety guidelines drawn up by the American College of Radiology in 2002 and revised last year "have no teeth and are floating out there in intellectual Never-Never Land," Tobias Gilk, a Kansas City architect who designs medical scanning rooms, said...

The most notorious accident was the death of 6-year-old Michael Colombini in 2001 at the Westchester Medical Center in Valhalla, N.Y. He was sedated in a scanner after a brain operation when his oxygen supply failed. An anesthesiologist ran for an oxygen tank and failed to notice that the one he found in the hall outside was made of steel. As he returned, the tank shot out of his hands, hitting Michael in the head.

Link (free reg req'd)

Mmmm...Fake Beer

The neurologist visit yesterday was OK. The big news is that on the neuro's advice, I'll be reducing my alcohol consumption by 71%. I've been a regular drinker, verging on heavy sometimes. That means every day, and anywhere from 2-4 drinks daily.

I've always loved booze, especially wine and good beer. Why so much? Well, for starters, there's a family history on my dad's side of pretty heavy consumption, though not really alcoholism that I know of. And I've probably done some self-medicating: on the one hand, my history of depression has sometimes correlated with increased consumption; on the other hand, the booze has the effect of dehydrating me in the evenings, which means my bladder doesn't wake me up at night as much. Also, my love of cooking is conducive to having a glass or two of wine even before dinner is on the table.

The neurologist suggested that I try drinking only on the weekends, so I'm going to try it. He noted that research has indicated that alcohol impacts the white matter of the brain, which MS also affects, and that alcohol's impact is reversible. He made a convincing argument: I'm already on Rebif, and he doesn't prescribe more than one of the CRAB drugs at a time. That means that the only other drug option for treating the MS itself is Novantrone. Novantrone is effective, but it's a one-time "rescue therapy" option, so save it until you need to be rescued. In the meantime, it's possible that reducing the booze could really help. So I'm gonna try only on weekends. Good thing I started on a Wednesday.

Yesterday, on the way home from work, I picked up couple kinds of fake beer to try. I'm in the habit of sitting down with the paper when I get home from work, and I enjoy sipping on something cold, but not sweet. Yesterday, I tried the O'Doul's. It was OK. Crisp and light, though it would never survive a taste test against even the humblest of mass-produced lagers.

One possible problem, though: Fake beer doesn't dehydrate the way real beer does. The bladder thing has of late been more troublesome at night. For the last month or so (about the length of time I've been on Cymbalta), I've been wetting the bed much more often. It had previously been maybe once a week, and now it's like 6 or 7 times a week, sometimes more than once a night. Last night, I wet the bed three times, and still managed to put half a liter in my bedside urinal. After the last incident, at 4:30 am, I just decided it was time to get out of bed and do some laundry.

So there are some issues to figure out. I don't want to stop taking Cymbalta before it gets a chance to work (I've been told 4-6 weeks), and I'd like to try a serious cut in alcohol consumptions, but I'm feeling rather out-of-whack.

On an up note, it appears that there may be a way to use all this pee: scientists in Singapore have developed a urine-powered battery (write your own punchline).

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Wednesday, August 17, 2005

New England Journal of Medicine on Medical Pot and the Supreme Court

Here's a good summary of the state of things after Gonzales v. Raich:
Immediately after the news of the high court's ruling, attorneys general in the states that have approved the use of medical marijuana emphasized that the practice remained legal under their state laws, and a telephone survey of a random national sample of registered voters, commissioned by the Washington-based Marijuana Policy Project, indicated that 68 percent of respondents opposed federal prosecution of patients who use marijuana for medical reasons. Nationally, most marijuana arrests are made by state and local law-enforcement agencies, with federal arrests accounting for only about 1 percent of cases. However, soon after the decision was announced, federal agents raided 3 of San Francisco's more than 40 medical marijuana dispensaries. Nineteen people were charged with running an international drug ring; they allegedly were using the dispensaries as a front for trafficking in marijuana and in the illegal amphetamine "ecstasy."

Bonus! Includes a nifty picture and description of a vaporizer system for inhaling marijuana without smoking it:

The cannabis is placed in the chamber and heated to a temperature below that required for combustion. The balloon fills with vapor that contains the active ingredients without the tar or particulates thought to be responsible for most of the drug's adverse effects on the respiratory tract. The patient inhales the vapor from the balloon.

Link to article in the New England Journal of Medicine.

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Tuesday, August 16, 2005

Chicken legs

MS has left its fingerprints on many different parts of me, but so far, my vanity remains intact. Which is why I sometimes find time to fret about the way MS is starting to affect the way my body looks, not just the way it works. Frinstance, the gradual diminution of my calf muscles.

I've had MS for about 13 years, but up until about 5 years ago, I was still enjoying long hikes through the woods, around town, walks with the dog, etc. This, and some pretty sturdy genes, meant I had, um, nice legs. Ask my wife; she still cites my furry, well-developed legs as one of the features that initially attracted her to me.

These days, a long walk means going round the block with a dog, and that leaves me pretty pooped. The gastrocnemuses, soleuses, and peroneuses that used to get me around on long hikes through the woods are now semi-retired, and starting to show it. I should be getting more exercise, but I find the repetetive exercises the PT recommended as dull as daytime TV.

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British scientists make nerve stem cells

British scientists said today they were the first in the world to create a pure batch of nerve stem cells made from human stem cells. The Edinburgh team at Stem Cell Sciences were granted one of the first licences in the UK to carry out medical experiments with embryonic stem cells. They have focused their efforts on growing nerve cells, which are integral to the brain and central nervous system. It is hoped the newly-created cells will eventually help scientists to grow replacement brain tissue for people with neurological disorders like Alzheimer's and Parkinson's disease.

Link to article in The Guardian.

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Second article in NYT health care series

In the Hospital, a Degrading Shift From Person to Patient
Some hospitals have worked to address patients' most serious grievances. But in interviews and surveys, people who have recently received medical care say that even when they benefit from the expertise of first-rate doctors, they often feel resentful, helpless and dehumanized in the process...

'The point is that when they talk about quality of health care, patients mean something entirely different than experts do,' said Dr. Drew Altman, president of the Kaiser Foundation. 'They're not talking about numbers or outcomes but about their own human experience, which is a combination of cost, paperwork and what I'll call the hassle factor, the impersonal nature of the care.'


Monday, August 15, 2005

Seeing my neuro on Wednesday.

At this point, I'm seeing my neurologist every four months. I like him a lot, although I sometimes think he feels that I'm a whiner, that I'm overly sensitive to minor stuff. Which I am. To be fair, one of the ways my moderate depression sometimes plays out is that I use my infirmities as way of getting attention and affection. I can trace this tendency all the way back to my childhood, actually. But I would rather give him too much information than not enough.

A visit to the neuro always begins with some version of the quetion, "So, how are you feeling?" Let's see. Since April, my emotional health has certainly improved. My workload has evened out, my marriage is humming along nicely, and blogging has provided me with a creative outlet. Physically, though, not as good. There have been a number of heat-related discombobulations, but even under more favorable conditions, I'm definitely weaker and wobblier. I'm also becoming more conscious of physical tremors (I think you'd call them intention tremors) in just about every muscle in my body. In particular, I'm starting to notice subtle tremors in the muscles that control speech. I sometimes feel a little wobble in my throat or larynx when making certain sounds.

I've also seen the pain doctor, and started cymbalta. I've been up to the full 60mg dose for a couple weeks now, and haven't really noticed an effect on the leg pain that prompted the visit. It's possible, tho, that it's had a positive effect on my mood.

Oh, and even before I see the doc, there's the inevitable "Are you taking any medications?" from the nurse. Let's see: Rebif, Cymbalta, Provigil, Baclofen, Oxytrol, Neurontin, Papaverine, and Serzone. Oh yeah, and Flomax.

God help me, I never remember all the dosages. Actually, the National MS Society makes a medication review form available for just this purpose. I should fill one out. So should you.

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Sunday, August 14, 2005

Research links MS to viral infection

A new study by Scottish researchers shows evidence that the neurological disease multiple sclerosis (MS) could be linked to a viral infection. While Scotland has the highest prevalence of MS in the world, the exact factors which lead to its development still remain a mystery. A combination of hereditary and environmental factors are thought to be the likeliest explanation. Clusters of MS have previously been noted in certain areas, including the Faroe Islands, Orkney and Shetland. Researchers at Dundee University used a comprehensive register which recorded MS cases in Tayside over three decades to examine whether similar outbreaks would appear in a region where there was no prior knowledge of high incidences of the disease. The study found peaks of MS occurring in both certain years and in geographical locations, which scientists claim supports the idea that a virus is involved in the development of MS.

Link to story in Glasgow Sunday Herald.

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Saturday, August 13, 2005

My kid sister already knew I have MS

When my 12-year-old kid sister B. visited recently, I was wondering whether I should tell her that I have MS. Well, she already knew. Kinda.

For the first day or so of her visit, I had the feeling that she was acutely aware of my every little stumble, every little wobble. I thought she was watching for it. I thought I saw worry on her face.

The next day, I asked B. if our dad had ever talked with her about my health, and she said yes. Then I asked her what he said, and she hesitated, then said, "Well, there was this article in the paper about a new kind of treatment for MS; I don't remember what it was..." So she knew I had MS. I asked her if she knew what it meant, and she said "Um, not really."

So I told her that it affected my balance and my ability to walk, and that sometimes it made me really tired. I told her that I've had it since right around the time she was born. I said they don't know how to cure it right now, that it wouldn't kill me, but that it might mean that someday I'd have to use a wheelchair. I told her that it wasn't something she would get just because she's my sister, and that if she ever has any questions about me and MS she should ask me.

I was nervous. After 13 years, I had gotten to the point where it's less painful to talk about MS and me, but I had never talked about it with a kid before.

The next day, I thought I hadn't done a very good job. It just seemed incomplete. I certainly didn't think she needed to hear about bladder troubles, sexual dysfunction, and the time I peed in my shoe, but I wanted to a way to start the conversation again. So I took out my MRIs.

I showed the how the MRI took pictures of slices of my head. I pointed out my brain, my eyeballs, my teeth, my tongue, the spots that represent the lesions in my brain, explained what it's like to get an MRI, explained why they call it "multiple sclerosis." She was fascinated, and totally engaged. Like me, she loves science stuff, and she seems to remember just about every little factoid she learns about science.

She had known, but probably just enough to be scared. Why didn't I do this sooner?

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A must-read from the New York Times

You must read this article.
The job of being a modern patient includes not only decision making, of course, but often coordinating doctors, medical records and procedures, as well as negotiating with insurance companies, who are often the ultimate arbiters over which treatment options will be covered...
This is the blessing and the burden of being a modern patient. A generation ago, patients argued for more information, more choice and more say about treatment. To a great extent, that is exactly what they have received: a superabundance of information, often several treatment options and the right to choose among them.
As this new responsibility dawns on patients, some embrace it with a sense of pride and furious determination. But many find the job of being a modern patient, with its slog through medical uncertainty, to be lonely, frightening and overwhelming.

I was a student of Meg Gaines, who is sort of the main character in this story. This is the issue I was getting at in a post last month.

Link to article in the New York Times (free reg req'd).
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Friday, August 12, 2005

Will Wisconsin allow pot as medicine?

The story comes from the Madison, Wis., weekly Isthmus. The interesting part is that the legislator most interested in getting the ball rolling is a Republican cancer survivor.
Will Wisconsin Allow Pot As Medicine?
Most citizens support its legal use, but politicians may be too afraid

When support for an issue approaches 80% among Wisconsin residents, you would think that our state representatives would be falling all over themselves to follow the will of the people. But when the issue is legalization of marijuana for medicinal purposes, things get complicated...

Link to text of story at NORML site.
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New way to dispose of your used hypodermic needles

A package of used hypodermic needles delivered to [Wisconsin] Assembly Speaker John Gard's office last week has highlighted a political battle over stem-cell cloning for diabetes research. It's also caused Gard to question Gov. Jim Doyle's judgment in sanctioning the political stunt.
A Door County woman gave the used medical waste to Doyle on July 14 with a plea that he forward it to Gard as a statement about the suffering of people with diabetes. Five days later, Doyle staffer Patrick Guarasci dropped off the bag at [Gard's] office. Capitol police were called to Gard's office to remove the needles after maintenance staff refused to touch it.

Link to story in Green Bay Press Gazette.
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Different kinds of MS lesions respond to different kinds of treatment

Physician John Foley has known for years that his multiple sclerosis patients experience different symptoms and severities of the disease, and respond in varying ways to treatments.
Now a groundbreaking Mayo Clinic study backs up that perception. The findings, published in this Saturday's issue of The Lancet, are the first evidence that MS is not the same disease in all patients and that MS treatments likely need to be more individualized.

Link to story in Salt Lake Tribune.
Link to abstract at The Lancet (free reg req'd)
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Thursday, August 11, 2005

Glass half full!

It takes some effort to come up with something nice to say about the hot summer we're having, but I got it: the sweet corn around here has been impossibly good. It's so sweet, you can eat it raw (though I prefer plenty of olive oil and salt). Only rarely is there anything left for the dog.

Wednesday, August 10, 2005

$15.6 million awarded for nervous system repair in multiple sclerosis

If you know someone who riding in a National MS Society Bike Tour fundraiser, give them a pat on the back for me:

The largest awards ever made for research aimed at protecting and reversing neurological damage and restoring function in people with multiple sclerosis (MS) are going to four teams in the U.S. and Europe, who will use $15.6 million from the National Multiple Sclerosis Society to lay the groundwork for clinical trials over the next five years. These awards are part of the National MS Society's Promise 2010 Campaign, a nationwide effort to raise at least $30 million for targeted areas of research and patient care that hold great potential in the fight to end the devastating effects of MS but which have so far been under-explored.

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Update: Turns out my neurologist will be involved in this research, as well as the local university. Potential for getting into a study?

Missouri adds insult to Medicaid-cut injuries

Missouri is dropping some 90,000 people from Medicaid coverage, including anyone who makes more than $90 per month. One of them is my good friend Anne's sister. This woman has multiple sclerosis, and is frantically trying to figure out how she'll be able to stay on Avonex at $1,000 or so a month. The letter she got from the Missouri Dept. of Social Services contained an 800 number to call with questions. Turns out the number had a typo, and connected callers to a woman in Montana.

Link to item in St. Louis Post-Dispatch.
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Tuesday, August 09, 2005

My favorite podcast: NPR's On the Media

I'm a news junkie, and I have a strong appetite for media criticism. There are some good resources on the net for this kind stuff: Slate's kausfiles, the Columbia Journalism Review's CJR Daily, and so forth.

But if you can wait a whole week for your regular dose of media criticism, On the Media is worth the wait. I'd lost track of the show for a while--it seemed like our public radio station either wasn't carrying the show, or it was on at a time when we weren't listening, or whatever. Now, the show is available as a podcast. Yay! It's in the iTunes podcast directory.

I'm also following Tod and Kim's MS podcast. So far, there are 2 episodes available. I've listened to the first one, and looking forward to the second. God love 'em, in the first show, these Canadians gave out a phone number to call with ideas for future shows.

Monday, August 08, 2005

One problem with erectile disfunction secondary to MS... the literature the doctor hands out. The guy on the left looks like Dick Freaking Cheney. Are they going to the urologist or are they waiting to get into the Jimmy Buffett concert?

The joy of getting things done

Our 'B' car is a 1993 Geo Prizm with 154,000 miles on it. I love this car. We've had it since 1997, and it's been very, very good to us. Recently, in the hot, humid weather we've been having, it started stalling intermittently. Our favorite shop was so busy that they wouldn't be able to get to it for a couple weeks, but suggested some tune-up stuff: replacing plugs, plug wires, distributor cap, and rotor. I figured I could probably do it and save a few bucks.

It took me about an hour and a half, not counting the two or three popsicle breaks I took. The job wasn't complex, but it took a few trips to the toolbox and some time standing bent over with my head under the hood. After I got the right assortment of crescent wrenches, screwdrivers, sockets, etc., and some advice from my neighbor, it was pretty easy. God help me, the car actually started right up afterward, and appears to be fixed [imagine a wood knocking sound].

If I need something like that done again, I'll probably pay someone to do it. But it felt good to be able to do it myself.

Thursday, August 04, 2005

Excellent haiku about getting an MRI

In her how-I-got-diagnosed-with-MS story, Cathy Resmer writes:

One of the first things I did was write haiku about getting an MRI. One of them goes, 'ya ya ya ya ya / ya ya ya ya ya ya ya / ya ya ya ya ya.' That's one of the sounds the MRI machine makes. When you're lying inside its tube, the sound is deafening. Instead of being annoyed by it, I try to appreciate it. I do the same thing with my symptoms. Instead of being freaked out by my twitching thumb, I think, Wow, that looks so weird.

Seven Days: Brain Drain

Does my kid sister know I have MS? Do I tell her?

I've got two half-sibs, a 10-year-old brother and a 12-year-old sister, the children of my dad and his second wife. They're great kids, and we see them often. My sister B. is staying with us for a few days. I don't really know what B. and her brother know about my health. I've never talked about it with them, but several months ago I asked my dad if he'd discussed it with them. He said that he hadn't, though the kids understand that I sometimes get tired and that I have some limitations that prevent me from doing certain things.

I think I'd like to talk about MS with B. this weekend. She's a bright, creative, funny, and thoughtful kid, and I feel like it's not fair to either of us to leave her in the dark about MS. On one hand, I can understand how my Dad might be concerned about scaring them or whatever, but on the other hand, it's probably scarier to know only part of the picture. Sooner or later, she's going to meet somebody who has MS or who know somebody who has MS (if she hasn't already) and what if that person with MS is much more severely affected than me? She needs to know that MS isn't going to kill me, that MS is different for everybody, and that if I need to use a wheelchair, I'll still be me, just in a wheelchair.

I see a lot of myself in B. Last night, I went to bed first, so I said good night as I passed the room where she was reading. Then I thought, we should hug, right? So I turned back to her room, and she had gotten up to give me a hug, but then she saw that I might not have been waiting for a hug. Then she saw that I hadn't been waiting for a hug but had changed my mind and turned back for a hug. She gave me a little smile, half embarrassed at our awkward encounter and half entertained by it. We hugged. I said, "I'm really glad you're here," and I meant it.

Wednesday, August 03, 2005

The dog who broke his wag (again)

Our yellow lab, Micko, loves hanging out at my dad's cabin, especially when there are other dogs about. Like most labs, he loves to swim, and has been known to criss-cross the lake in pursuit of a fishing boat (usually mine). He also loves bounding up and down the hill, chasing assorted vermin, shaking his muddy coat next to outdoor diners and sunbathers. In short, there's a lot for a lab to do.

Too much, it turns out. Sometimes, a lab who overexerts himself in the water can develop a condition known as "cold water tail" or "broken wag," in which his tail droops lifeless between his legs for a few days. It's usually associated with cold water, and he first developed it after an October weekend at the cabin. This past weekend, though, the lake couldn't have been much below 75 degrees.

This isn't a great picture, but it shows Micko looking very alert, except for his tail. I think he was watching some people in a boat near the shore, and his big beefy beaver tail should have been as perked up as his ears were. He's so pathetic when his wag is broken; it's as though he's lost his most important means of communication. Today, his tail looks much better, though it still seems to have a kink in it about halfway down.

Tuesday, August 02, 2005

Dad and me: ex-doers

This past weekend, my wife and I were up North at my dad's cabin. It's on a smallish, weedy lake, with lots of trees, an eagles' nest, and the occasional loon. It's been hot up there, too; the corn looks sickly, and the fishing has been moribund. Nevertheless, I spent hours in the canoe, changing from live bait to lure to other lure. Pickings were slim, but I saw lots of wildlife, and got my fill of peace and quiet. It was hot up there, but the stiff breeze from the south made things tolerable, especially when we put an air conditioner in the bedroom window.

My dad bought the cabin several years ago with money he inherited. When he bought it, it wasn't finished: it didn't have running water or electrical service, and the interior walls and ceiling were bare and uninsulated. But my dad is a Dad's Dad, and has been gradually finishing the place: now there's a functioning toilet and shower, refrigerator, and various other additions that make staying at the cabin an increasingly lazy experience (yeah!).

The cabin is perched on lovely little hill overlooking the weedy little lake, and that's the main problem. It's getting to be quite a hike to get up the hill for a beer after a swim. If you repeat the trek three or four times in a day, it can be exhausting. To me, and, increasingly, to my dad.

Dad's 63. He retired last year, and he's in reasonably good shape, but over the last few years I've noticed that he and I are engaged in a similar struggle. We are both, by nature, doers. We love doing stuff, and are not very good at not doing stuff. We obsess over the stuff we think we need to do with our houses, cars, gardens, boats, and retirement funds, the vacations we want to take, the recipes we want to try, the rivers we want to fish. We revel in planning and engineering the stuff we want to do, and we love talking about how well or how poorly our half-baked ideas turn out. We are both now forced to come to grips with the fact that we can no longer do the stuff we need to do, want to do, dream about doing.

When MS started to really sap my physical stamina a few years back, my dad was still chain-sawing through trees that fell across the driveway to the cabin, bare-chested and in his sandals. In the spring and fall, my dad and my older brother put in and remove the dock, while I watch from the bulkhead. My dad has had trouble, though, with spinal stenosis (much improved since recent surgery), carpal tunnel, and the assorted aches and pains of a 60+ body. A few years ago, he actually paid somebody to cut down a tree.

When I'm at the cabin, I wonder how much longer he'll be able to enjoy the place. I wonder if he'll finish fixing up the place while he's got time to enjoy it. I wonder how much longer he'll be able to enjoy fixing the place. I wonder how much longer I'll be able to enjoy the place. I wonder how many more summers we have to sit around drinking beer and complaining about washing machines, roofs, and bodies that don't work the way they used to.