|English: An engraved illustration of Santa Claus and what may be Mrs. Santa Claus from the 1878 book "Lill's Travels in Santa Claus Land and Other Stories", by Ellis Towne, Sophie May and Ella Farman. Artist unknown. (Photo credit: Wikipedia)
If, on the other hand, the Mayans weren’t correct, and the world doesn’t end in a terrifying cataclysm of meteor showers, catastrophic Earth changes, floods of biblical proportions, alien invasions, magnetic polar shifts, or a lack of cable programming, then Ho Ho Ho, Happy Holidays! Hope you were nice and not naughty this year, otherwise jolly old St. Nick will leave nothing but a lump of coal in your stocking. I can think of a few less savory lumps he might leave, but I suppose coal is disappointing enough to get the point across. Besides, if the Mayans were right, and doomsday strikes but you actually survive it, that lump of coal might come in pretty handy. So, this year you may be better off having been more naughty the nice.
To my mind, though, being really nice includes a prerequisite bit of naughtiness, so I’m not quite sure how Santa Claus actually divvies up his list. The naughty/nice divide is surely not black and white, but I guess that’s why Santa Claus gets paid the big bucks. Please, though, don’t tell me that stuck way up there in the North Pole with just Mrs. Claus and the elves that no naughtiness ensues. For Santa’s sake, I hope that Mrs. Claus makes liberal use of the Victoria’s Secret catalog…
Be that as it may, here’s this month’s selection of mostly MS related news tidbits that caught my eye over the last several weeks. Hope you find them entertaining and/or informative. If you don’t, feel free to pelt me with your lumps of coal, because I’m pretty sure that naughtiness is pandemic among the Wheelchair Kamikaze readership.
♦ I'd like to give a shout out Healthline.com (click here), which recently named Wheelchair Kamikaze the "Best MS Blog of 2012". Healthline is an extremely valuable patient resource, whose mission is to “improve health through information”, by providing readers with “objective, trustworthy, and accurate health information guided by the principles of responsible journalism and publishing.” One of the site’s unique features is an interactive, multimedia “MS Assessment Tool” (click here), which allows patients to objectively assess the state of their disease, and thereby make more informed treatment decisions. It’s really pretty cool. Actually, it would be cooler to have no need to use an MS Assessment Tool, but we can only play the cards we’re dealt. Healthline's Facebook page (click here) offers patients a rich social media experience for learning and interacting with others.
♦ At the risk of appearing like a gluttonous blog award whore, Wheelchair Kamikaze has also been nominated for a “Best in Show” award by Wegohealth. If you’d like to endorse that nomination, you can do so by using the badge located on the upper left-hand column of this page.
Okay, shameless self-promotion over.
♦ On the clear as mud MS research front, we have two interesting studies that looked at whether or not the interferon drugs effectively delay the progression of MS disability. The answer is a resounding “No” (click here). Also, a resounding “Yes” (click here). That’s right, two studies, two entirely different conclusions.
Okay, to be fair, the studies didn’t look at quite the same parameters. In the first study, the interferons (Avonex, Rebif, and Betaseron) showed no efficacy in delaying progression of disability to EDSS score 6, which basically translates into needing a cane to walk 100 m. This study compared contemporary treated patients, contemporary untreated patients, and an historical group of patients derived from older patient histories tracked before the interferon drugs were available. The results of the study are actually a little bit confusing, as the untreated contemporary patients time to EDSS 6 was 4.0 years, while treated patients took 5.1 years to reach the same level of disability, which would seem to indicate that treatment did have a beneficial effect on disability progression. The historical group took 10.8 years to reach the same EDSS score. However, more than twice the number of treated patients than untreated patients eventually reached EDSS 6, and four times as many reached that point in the historical group. When researchers mixed all of this data together, their conclusion was that the interferon drugs showed no beneficial effect in delaying progression. Confused? Me too.
The second study looked at whether or not the interferon drugs delay the transition from RRMS to SPMS. As all diligent MS patient should know, transitioning from RRMS to SPMS is not a good thing, as progressive MS has few if any effective treatments, and progressive patients generally experience a slow and steady increase in disability, without the benefit of any remissions. This study, conducted in Sweden, compared contemporary patients treated with DMDs with a historical group of patients from 1950-1964, decades before the DMDs were available. Although the abstract does not provide concrete numbers, the researchers conclude that the DMDs do delay the onset of SPMS, which, if true, is a very good thing.
So, what to make of these studies? I think that the only real conclusions that can be drawn are that no conclusions can be drawn. It appears that the CRAB drugs are more effective than many anti-drug advocates would have it, and less effective than mainstream neurology would like patients to believe. In the end, each patient must make their own decisions based on their own experiences. There does seem to be a growing body of evidence that shows a “window of opportunity” early in the RRMS disease process, when nearly all treatments are most effective. Once this window closes, it seems that the beneficial effects of the current MS treatments fall off dramatically. Personally, if I were a newly diagnosed RRMS patient, or a patient early in a course of relapsing remitting disease, I would opt to go with treatment. But again, that’s just me; each patient, in conjunction with their doctors, must assess their own situation, which, as the above shows, can be no easy task given all of the conflicting information.
♦ As patients, we must never forget how wonderful our caregivers are, if we are lucky enough to have good ones. It’s very easy for the strain on the caregiver to take a backseat to the problems of the patient, but the disease takes a terrible toll on all it touches. A study out of Mexico (click here) attempted to examine the impact of MS on the emotional health of caregivers. Researchers found that 40% of the caregivers they studied met the criteria for “probable major depressive disorder”. They furthermore found that the symptoms most likely to cause distress in caregivers were patient depression, difficulty talking, difficulty hearing, becoming upset easily, and upsetting other people. Patient symptoms causing the lowest average level of distress for caregivers included difficulty learning, seizures, trouble reading, difficulty eating, and difficulty writing. I found this surprising, as it seems that the symptoms that might be most troublesome to patients were found least troublesome to caregivers. This just illustrates the complexity of the patient/caregiver relationship, and the fact that 40% of caregivers were found to be clinically depressed speaks volumes of the hideous nature of multiple sclerosis. If you’ve got someone who cares for you in a loving, supportive manner, please take this holiday season to make sure they know just how much they are loved and appreciated.
♦ A while back I posted an essay that talked about how hard a job it can be just to be sick (click here), with seemingly constant battles with insurance companies and other organizations and individuals in the medical industrial complex. This opinion piece (click here) from the New York Times, written by a prominent business journalist who found himself in a mindbending skirmish with his insurance company when he simply tried to find out how much the pill that controls his blood cancer would cost, is a terrific example of just how maddening the “job” of being a patient can be. The article is really a must-read for anybody caught in the lunatic web of modern medicine as it is now practiced.
♦ The Scottish island of Orkney one of the highest rates of MS in the world, with one in 170 women on the island suffering from the disease. Researchers now think that the Viking ancestry of Orkney residents may be to blame (click here). Studies have shown that half the general population of the Orkneys originates from Scandinavia, and other studies show that areas colonized by those with Viking ancestry have higher incidences of MS as well. For example, in Canada the provinces colonized by the English and Scots have higher rates of MS than does Québec, which was colonized by the French. This would obviously point to a genetic link to the disease, although other factors must be in play as well, such as a lack of vitamin D (the places studied afforded their residence very limited sun exposure), as well as environmental elements. Furthermore, researchers found that even within Orkney there were “hotspots and cold spots. Some isles and parishes and villages had much increased rate and in other parts there were hardly any residents who had it.”
And all along I’ve been thinking that the worst thing about the Vikings was all the raping and pillaging. Now I can add MS to my list of Viking grievances. In the Vikings favor, though, is the fact that one of their kings was named Ivar the Boneless (click here), which is one of my favorite names in all of history. If there is anything to his name, good old Ivar may have been disabled (there are other interpretations, including that he might have been impotent), but that didn’t stop him from leading a brutal invasion of England. And this was way before there were any laws mandating the rights of the disabled.
So, with cheerful visions of Ivar the Boneless pillaging and plundering with his apparently wet-noodle like appendages dancing in your head, I bid you all the happiest of holiday seasons. May the coming year bring you copious amounts of good health and an abundance of happiness. May your fondest holiday dreams come true, and always remember that the greatest gift of all is love shared between family and friends.
Here’s a classic Christmas tune, sung by the always alluring Eartha Kitt, with some, um, unusual accompanists. I believe that this video proves that Boy George is a time traveler. Happy holidays!…