Journal: Getting out of the office

After taking two weeks of vacation, my office looks a lot less cramped, a lot less disorganized, despite the stacks of summer projects occupying prime real estate on my desk. My desk chair seems more comfortable and my boss seems unusually competent. Funny how that works. One can almost imagine that my job is a career, that I am a professional, diligently working to advance the interests of my clients, that one day the lemon poppy seed sheet cake at the retirement party will have my name on it.

But today, the lemon poppy seed sheet cake bears the name of a coworker who has been here for almost 18 years, who is beloved by all, and whose eyes tear up when a colleague speaks. Hers is a graceful exit, and her retirement will be filled with gardening and grandchildren.

I have a 401K, an IRA, and even put some money in a targeted retirement fund that assumes I will continue working until 2035, when I'm 65. I like to diddle with calculations that predict the amount of money I'll need to retire and the amount I'll actually have. But always in the back of my mind is the likelihood that my career will not end with a lemon poppy seed sheet cake or misty-eyed tributes. Always in the back of my mind is the chance that MS will decide when my career ends, that exhaustion or absentmindedness will lead to an unpleasant, cakeless 'retirement' well before 2035.

Fortunately, two weeks of vacation gives a person a chance to sleep late, to forget about illness (and forget a Rebif shot), and daydream of a cakeful future.

technorati tag: multiple sclerosis

Opinion: Another take on Warren Buffett's gift

I'm just back from vacation, and still trying to get to the bottom of my inbox, but this caught my eye. Over at the Huffington Post, Nora Ephron offers a different spin on Warren Buffett's gigoonda gift to the Gates Foundation. Snip:

Warren Buffett is 75 years old, and the mind reels at how much good he could have done had he given away just a little bit of his money in the years since he became the richest (and then second-richest) man in the world.
....
[I]n this era when you can do so much with private money (especially given the fact that the government does so little), it's tragic to think that Buffett sat on his for so many years -- and that he may have encouraged other billionaires to sit on theirs. If Buffett had just given away $250 million a year -- which is what people like him call "a rounding error" -- there's no telling what he could have done. A disease might have been cured. A symphony might have been written. The life of a sick child might have been saved.

Yeah, but I think Buffett's gift sticks a timely finger in the eye of republican wailing for a permanent repeal of the estate tax. Buffett said he's not in favor of "dynastic wealth," and it seems like that's exactly what House republicans are insisting on. Shame on them, and thanks, Warren, for showing us how it's done.
Link.

Research: Gut reaction?

In today's MS abstracts, a study suggestomg that some naturally occurring gut beastie could be 'responsible for autoimmune activity in MS.' The abstract:

J Clin Microbiol. 2006 Jun;44(6):2099-104. Related Articles, Links
Molecular mimicry revisited: gut bacteria and multiple sclerosis.
Westall FC.
Institute for Disease Research, P.O. Box 890193, Temecula, CA 92589. fcwestallidr@adelphia.net.

Molecular mimicry is a possible explanation for autoimmune side effects of microorganism infections. Protein sequences from a particular microorganism are compared to known autoimmune immunogens. For diseases such as multiple sclerosis (MS), where the infectious agent is unknown, guesses to its identity are made. Mimics are assumed to be rare. This study takes a radically different approach. Reported sequences from all known human bacterial and viral agents were searched for autoimmune immunogen mimics. Three encephalitogenic peptides, whose autoimmune requirements have been studied extensively, were selected for comparison. Mimics were seen in a wide variety of organisms. For each immunogen, the mimics were found predominantly in nonpathogenic gut bacteria. Since the three immunogens used in this study are related to MS, it is suggested that a microorganism responsible for autoimmune activity in MS could be a normally occurring gut bacterium. This would explain many of the peculiar MS epidemiological data and why no infective agent has been identified for MS and supports recently found MS gut metabolism abnormalities. Link.

In the news: Will your HMO cover Tysabri?

So Tysabri is headed back to market. But will your HMO pay for it? A Reuters piece notes that FDA has recommended Tysabri for those who've already tried the CRAB drugs, so your HMO may well insist you give them a try first. Snip:

Health insurers have new grounds to limit its use because the FDA recommended that only patients who have failed other therapies -- such as Schering AG drug Betaseron or Copaxone, made by Teva Pharmaceutical Industries Ltd. -- can move to Tysabri.

"What the FDA did yesterday, they went against the recommendations of the (FDA) advisory committee which said it should be approved first line therapy, so absolutely they (insurers) will not allow it unless they failed standard therapy," said Andrea Witt, an analyst at Decision Resources, a market research firm.

Biogen said most companies covered Tysabri in some way before the withdrawal and has been lobbying insurers ahead of the pending comeback. Link

technorati tag: multiple sclerosis

Journal: The incredible shrinking husband

Sunday was my wife’s birthday. Here’s what I gave her: nothing.

I didn’t forget, I just ran out of gas, ran out of time. I did some unsuccessful shopping, spent my time and energy doing things like replacing a toilet, going fishing with my dad, going to work, worrying about replacing our aging second car before it dies, and spending hours parked on the La-Z-Boy. I’ve also been spending time and energy trying to get a handle on the worsening neuropathic pain that leaves me cranky and depressed by 4:00 every evening.

Speaking of which, after just four doses of desipramine, I’ve turned tail and run screaming back to Lyrica. Just like Cymbalta, desipramine caused me to retain urine, and left me unable to get a decent night’s sleep. That’s a spiral I just can’t bear to get started on again.

I’m taking a couple weeks off work, starting next Monday. Maybe that’s the best gift I have to offer, anyway: me, undiminished by the demands of the job. The unfortunate reality is that 5 days a week, the job gets the best hours of my day, the mornings, before the pain starts to be a problem. I don’t see any way to get around that. For a couple weeks, at least, I’ll have a chance to be the kind of husband I wish I was.


technorati tag: multiple sclerosis

In the news: Tysabri returns

In today's NYT, an article about the return of Tysabri, subject to limitations. First, no Tysabri + Avonex. Second, administered only at special infusion centers. Snip:

All doctors who prescribe Tysabri and patients who take it will have to enroll in a monitoring program. The drug, which was priced at more than $20,000 a year before it was withdrawn, will now be available only through authorized infusion centers. Those centers must go through a checklist with each patient before each monthly infusion, in an effort to ensure that patients are eligible for the drug and to detect early signs of the rare side effect.
...
F.D.A. officials acknowledged the risks. "Yes, we expect there to be additional cases and probably additional deaths as well," Dr. Russell Katz, head of the office that regulates drugs for neurological diseases, told reporters yesterday. But he said that risk was balanced by considerable benefits of the drug.

Despite the risk, Biogen and Elan expect sizable demand for Tysabri. In fact, executives have said they were thinking of raising the price. The price was $23,500 a year at the time the drug was taken off the market, making it already hundreds or thousands of dollars more than other drugs for multiple sclerosis. Link.

technorati tag: multiple sclerosis

Health policy: The health care lottery

In the WaPo, Michael Kinsley laments the paucity of information about the relative effectiveness of various treatments for the same illness. To Kinsley's mind, the aggregation and study of this kind of data would be perhaps the greatest benefit of real health care reform. Snip:

The medical records of the U.S. population are a gold mine of information about the effect of every conceivable therapy on every conceivable ailment under almost any conceivable circumstance. Or they would be, if they were brought together. But for the most part they rest in lonely filing cabinets -- on paper, not digitized -- hoarding secrets that really could improve our health and our finances at the same time.

Starting to gather these data was one of the most demagogued proposals in the Hillary health reform package. Republicans raised the specter of Big Brother knowing your most intimate secrets. The plan's supporters emphasized the safeguards against misuse of the data -- but when you're talking safeguards, you're already on the defensive.

Until recently I would have dismissed any concern about the government's misusing your health records as farfetched. But now that we know about the current administration's adventures with the phone companies and the Internet providers, I think those ancient Republicans might have had a point. It's unfortunate, though, if we have to protect our privacy at the cost of our health. Link.

In the news: O, Canada's healthier

A study released Tuesday finds that our neighbors to the north are healthier than us, based on a survey of adults. Snip from WaPo:

Americans are 42 percent more likely than Canadians to have diabetes, 32 percent more likely to have high blood pressure, and 12 percent more likely to have arthritis, Harvard Medical School researchers found. That is according to a survey in which American and Canadian adults were asked over the telephone about their health. The study comes less than a month after other researchers reported that middle-aged, white Americans are much sicker than their counterparts in England.

"We're really falling behind other nations," said Dr. Steffie Woolhandler, a co-author of the Canadian study...In the Canadian study, insured Americans and Canadians had about the same rates of disease. It was the uninsured Americans who made the overall U.S. figures worse, she said. Link.

Journal: Running on fumes

I've been up since about 1:00 in the morning. I'm not sure why I've been having such trouble staying asleep, but it doesn't help that I've tapered down to just 300 mg of Lyrica per day in advance of switching to desipramine. Last night, I felt hypersensitive to every little itch, every little wrinkle in the sheets, every little sniffle from the big yellow dog who shares my room. I also starting getting the reflexive foot movements that plagued me a while back. So it's not exactly that I was lying there in pain, but as I sit at my desk, I'm really missing those other 900 mg of Lyrica.

On the up side, though, I managed to get some reading done. For the first time since I blew through The Da Vinci Code, I'm reading a novel and staying with it. I'd kinda given up on reading for a while- I couldn't seem to focus for more than a few minutes, and I'd lose track of what I'd read just a page or two before. It really took the fun out of it. On impulse, though, I picked up The Constant Gardener at the library a few weeks ago, thinking that something with some suspense and intrigue would help keep me on track. So far, so good: I'm about half-way through, and enjoying it very much. I haven't seen the movie, but I'd like to when I'm done with the book.

technorati tag: multiple sclerosis