Regular Wheelchair Kamikaze readers have probably noticed that the blog has undergone several design changes during the last few weeks. Yes, I have been obsessively changing the look of the blog. I admit that, and I know that admitting that I have a problem is the first step to recovery.
I mentioned a while ago that I changed blog templates in order to facilitate some of the newer features being offered by Blogger, the home of Wheelchair Kamikaze. These new templates offer a variety of customizable looks, and I just can't seem to stop myself from compulsively customizing the damn thing. It's just never quite right. Take this latest edition, for example. I don't know, but to me it just seems a little too white bread. It lacks pizzazz, and I'd like the blog to be pizzazzy. The problem is, too much pizzazz and things really go kablooey. There's a very fine line between pizzazz and visual vomit, and I'm trying to strike that perfect note. Only now I fear I've veered too far into the mundane. I think I'm suffering from "Does This Blog Design Make My Ass Look Fat?" syndrome. So, please bear with me, as I expect there may be more changes to come.
Right then, consider yourself forewarned. It's time once again for my monthly (or so) collection of various MS related news items, gathered during my recent meanderings around the web. Sometimes I'll throw in some non-MS related news items, but I'm pretty sure this month's grab bag is all MS related. I've included a few odd bits, just add some, um, pizzazz.
Off we go…
♦ Since CCSVI always seems to be of interest, let's start there. The second annual ISNVD (International Society for Neurovascular Diseases) Conference wrapped up last month, and the organization has posted a group of videos featuring some of the notables who presented at the conference, making for some very informative viewing ( click here ). Thank you, ISNVD.
A terrific primer on CCSVI treatment, offering a great summary of the basic hypothesis and the research surrounding it, can be found here ( click here ).
Some interesting charts tracking the rise and fall of Google searches looking for "CCSVI" can be found here ( click here ), courtesy the fine folks at Shift.ms. More on them later. Looks like interest in CCSVI may be waning, which I suppose is only to be expected given the huge amount of hype the discovery has received over the last two years or so. I'm always surprised at how many patients I meet in person (as opposed to the Internet) who don't know much about CCSVI, so it's not like the entire MS universe has researched the subject. Still, the firestorm set off by CCSVI when it first caught the interest of the Internet MS population was bound to lose some of its sizzle, a phenomenon which is visually reflected in these charts. It is telling to note that the US does not even make the top 10 countries searching for CCSVI, which I believe is indicative of the mysterious silent treatment CCSVI has been given by the news media here in the United States.
♦ Shift.ms ( click here ) is a Multiple Sclerosis social networking site specifically designed for younger patients dealing with the disease. It's hard enough handling this dog from hell as an adult, my heart really goes out to those teens and young adults trying to navigate those at turns difficult and wonderful years with a chronic disease thrown into the mix. If you are a young person dealing with MS, join up and share the burden. If you know a young person with MS, please direct them to the site, which is relatively new and looks like it will be a wonderful resource for that demographic. The good people who organized the site have posted videos of an MS Information Day recently held in London, which includes a wide range of topics of interest to all MS patients regardless of age that is well worth checking out ( click here ).
The National Multiple Sclerosis Society will be opening the doors to its own social networking site, MS Connection, on Monday, March 12 (the URL will be: http://www.msconnection.org/). The site will be packed with features, and is meant to serve much like a Facebook for PwMS. Now, I know that many of you out there have mixed feelings about the NMSS these days, but MS Connection has the potential to be an extremely valuable resource for interacting with your fellow patients. The site will be censorship free (as long as gross vulgarities are avoided), and it's often been said that the best way to change an organization is from within. Keeping in contact with fellow MSer's of all stripes is key to maintaining your sanity while grappling with the disease, and MS connection will help you do just that. I've been able to preview the site (yes, shockingly, I haven't been blacklisted by the NMSS), and can tell that lots of work went into this effort, which is well designed, user-friendly, and actually pretty darn neat (yes, I did just use the word "neat". I'm wearing a helicopter beanie and knickers as I write this).
♦ This interesting graphic, brought to my attention last week by a WK reader, names The Top 10 Medical Inventions of the Last 50 Years ( click here ). I won't ruin your anticipation, but I actually met the inventor of The Top of Medical Invention of the Last 50 Years last month. Coincidence, or proof that there is order to the universe?…
♦ The use of Histamine to treat multiple sclerosis has a long and controversial history, and some recent research may lend some scientific credence to the practice ( click here ). First put into widespread use in the 1950s by Dr. Hinton Jonez ( click here ), who treated thousands of MS patients at his clinic in Tacoma, Washington, with great reports of success, the use of Histamines to treat MS has held on along the fringes of the MS community for years, with some people still swearing by its effectiveness ( click here ). The most common form of Histamine used by MS patients is Prokarin ( click here ), administered as a patch, which can be obtained from compounding pharmacies. Please note, many consider the use of Histamines quackery, and I've never used it myself. But its use seems relatively safe, and if one in 1000 patients can find some benefit in it, it's worth a mention. Any port in a storm, you know?
While we’re on the subject of alternative medicine, a trial is underway that is studying the use of parasitic hookworms as a possible MS therapy ( click here ). The little buggers are administered in a patch, from which they burrow into the skin of the test subject and eventually make their way into the gut, where they take up residence and, according to the theory, help modulate the immune system. Similar therapies have been tried, with success, on patients suffering from Crohn's Disease, and despite the yuck factor, there is method to this madness.
The theory behind the use of parasites to treat autoimmune diseases is called the "hygiene hypothesis" ( click here ), which postulates that the ultra-sanitary conditions of modern Western societies has eliminated parasites from the human body, thereby throwing out of whack our immune systems, which developed over millions of years around the presence of intestinal parasites. In the absence of these parasites, so goes the theory, our immune systems have time on their hands, and you know what they say about idle hands. The geographic distribution of MS lends support to this notion, as MS is most prevalent in developed countries, and nations whose populations retain their symbiotic relationship with parasites are notably absent of MS as well as a host of other autoimmune diseases.
Would I personally try this therapy? Heck yeah! As I've stated before, at this point I'd crawl up the rectum of a dyspeptic rhino if there was evidence it might cure my disease.
♦ Ah, now onto one of my favorite topics, asinine medical research. A study out of the University Of Washington looked at the concern about falling among MS patients ( click here ). Shockingly, they found a majority of MS patients are concerned about falling, and even restrict their activities as a result of those concerns. HOLY CRAP! STOP THE PRESSES! You mean to say that patients suffering from a disease that weakens limbs, effects balance, and causes dizziness are worried about falling? Well, knock me over with a feather (and believe me, you could)! Researchers conducting such studies appear to be required by law to create acronyms, so this bunch of Einsteins refer to "concern about falling" as CAF. Their careful analysis of 575 patients found that 62% reported CAF, and that 67% restricted their activities as a result of CAF. I'm very curious about those 5% who don't report any CAF yet still restrict their activities. Are they psychic? Do they take their umbrellas with them on sunny days?
A further insight was that "While the researchers found that fall risk increased with declining mobility function, at a certain threshold, further declines in mobility function were associated with fewer falls, possibly because of reduced fall risk exposure." In other words, as a person's body becomes more screwed up due to MS, their risk of falling increases, until they become so freaking gimpy that their asses get stuck in wheelchairs, at which point their risk of falling decreases dramatically. WELL, HOWDY! Who would've ever thought that people sitting wheelchairs have less chance of falling than people who will very soon need to be in wheelchairs but are still gamely struggling to remain upright despite the increasing uselessness of their legs? Brilliant!
I want to conduct my own research study. I'd like to test the CAF of the researchers who did this study the moment before I drop bowling balls on their heads. And then let's see how their behavior is modified after they return from the emergency room. Jackasses.
♦ One last item. If you happen to wake up one day talking with a foreign accent, don't worry, it's probably just your MS ( click here ). Seems that Foreign Accent Syndrome has been documented among MS patients, sometimes even as their first symptom ( click here ). If I ever develop this symptom, I hope I wind up talking like Boris Badinov, of Bullwinkle fame (see below).