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 (update: the site is now live, click here). 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).
And that insipid study came from my alma mater! No wonder students would rather attend the University of Puget Sound School of PT in Tacoma. I dare say none of their PhDs. would publish such drivel.ReplyDelete
Publish or perish is the name of that paper. Sheesh!
Hey, I'm sure the researchers meant well, but studying the obvious does seem like a colossal waste of time given the huge amount of unknowns related to multiple sclerosis. At least they gave me something funny to write about…Delete
'Stupid studies' like this that measure and quantify how MS affects quality of life can be useful. For example, to make payors expand coverage and to get funding for drug researchReplyDelete
I suppose some good to come of studies like these, as you say, but this one really appears to have overanalyzed aspects of disability that should be readily apparent. As far as getting funding for drug research, the drug companies only fund studies that hold the promise of creating blockbuster drugs. We already have Ampyra to address walking issues, a job which is does in a thoroughly so so manner (though some have benefited from it), and is exponentially more expensive than the generic compound it was developed from. We need funding for research that looks at remedies other than pharmaceutical, or at least tests older drugs and compounds, such as LDN, which don't hold the promise of huge profits but do seem to actually help patients.Delete
warning on the shift.ms page: My work says the site is a security threat. It may have spyware or bugs currently on the site.ReplyDelete
I don't find it hard to believe the worms could be helpful at all. It's like the CDC report which showed children whom parents reported eating dirt were healthier long term than those whose parents kept them from eating dirt. The study was evidently the result of the kid of a researcher passing up mom's dinner only to go on a walk 15 min later and pickup/taste a dog's old droppings. The researcher was horrified.the end result of the study was exposure to more bacteria was not a long term threat and in fact is the opposite.
I can see some worms the same way. Quick question though, if the worms actually help us, are they really "parasitic?" Is symbiotic the term when 2 species help each other? I think these relationships are some of the least publicized studies around, whether it be horse for trauma victims or any other symbiotic relationship humans can develop. I know my dad will need a dog for as long as he lives alone because of the comforts and motivation having a dog gives him.
I've scanned the shift.MS site using Norton Internet scanner, and it comes up clean. I've been corresponding with the people running the site, and will alert them to the fact that it's been flagged as possibly hazardous in some locations. I've had the same problem with this site, as McAfee red flags it for reasons I can't figure out.Delete
As for the parasitic/symbiotic conundrum, I suppose it's all a matter of perspective. Surely, some parasitic infections are deleterious to the host, but the evidence linking the lack of parasites to an upswing in autoimmune diseases seems hard to refute. Urban dwellers are more and more separated from nature, apparently to their own detriment.
CAF??? I've got it, I think I sat or did not sit because I was too afraid too, on a rogue toilet seat! Silly bleeding obvious. Great post this one, giggled a lot!ReplyDelete
Glad I could give you a giggle, and be sure to try to avoid rogue toilet seats. In my minds eye I can see a group of young wayward toilet seats, all clad in black leather, smoking cigarettes and cursing at passersby. Definitely not a lot you want to get mixed up with…Delete
I ate dirt when I was young and I still got MS. My older brother even got me to eat dog poop once. I've put all kinds of stuff in my system to keep my immune system busy. I guess my immune system is just an over achiever.ReplyDelete
Well, maybe you just didn't eat enough dog poop. I'm not sure what the FDA recommended dose is…Delete
I often wonder if part of the reason that I have had almost no disability from MS since I was diagnosed 8 years ago is because I picked up a lovely parasite while in Africa in the early '90s. I only had the worms for 3 months before I got ahold of the proper worm-killing meds, but it was not a fun time: I really felt like I was going to die. I also had malaria and dysentary, so I guess I'm covered on all unhygienic fronts...ReplyDelete
Yes, it certainly sounds like your immune system has had its share of challenges. The fact of the matter is that none of these theories completely explains the puzzle of MS, but perhaps elements of all of them hold some truth. The challenge is to separate the wheat from the chaff…Delete
In order to be pro active with treatment of this illness over the last 20 years, what has been most consistent is the comorbidity of the disorder of LEARNED HELPLESSNESS. It is not uncommon for me to complete a protocol and then find out the contraindications. What I'm talking about is that I decided to get clear about food sensitivities that could be stimulating inflammation, therefore stimulating the immune reaction. The 1st step before the blood draw for the food sensitivities is–drum roll–a parasite cleanse which I just completed.ReplyDelete
Always after the experience of learned helplessness there is a resulting experience of surrender which is not to be confused with resignation. Having been raised in an atheistic family, I have been not so gently nudged into the place of–there is nothing left but FAITH. This has been my particular trajectory of Healing of my heart–annihilation, both metaphorically and not, to find out what is indestructible in me. And that seems to be what I am left with. I guess objectively, that's not so bad.
Yes, this disease does tend to tear down and strip away façades that have been built up over the course of a lifetime. What's left is the essence of a person, and understanding one's essence is a valuable thing indeed. Of course, the cost of this knowledge is quite high, and although the disease brings with it perspective and enlightenment I'm fairly certain that, if given the chance, I'd likely take back my blissful ignorance. Would be nice to keep a bit of the wisdom gained, though…Delete
Good luck with your attempts at reducing inflammation via diet, seems to me there's very little downside with the possibility of real upside. Not a bad proposition.
Is that accent issue just a relapsing-remitting symptom or can I still get it with secondary progressive? I want to progressively sound more like Greta Garbo please!ReplyDelete
Greta Garbo would be quite the exotic accent. Might as well start practicing now, just in case. Repeat after me: "I vant to be alone…"Delete
I bet BNAC's multi-modal testing of MS patients and healthy controls didn't include tracking whether the subjects exhibited FAS. What a wealth of valuable information that was missed ! Bet there is a observer effect too. What would Dr. Zivadinov or Dr. Wienstock-Guttman consider to be a foreign accent vs. what a Buffalo native doing the exam?ReplyDelete
How can we be sure that Dr. Zivadinov isn't suffering from FAS. It could turn out that he's from Brooklyn.Delete
Hi Marc...I have FAS...mine is globetrotter style...it changes all the time so my husband and kids never know what mysterious country I might be from. It alternates with dysarthria (so sometimes I sound like I'm three and drunk) and then poof...I'll sound like me again...spin, spin, spin I'm Latina, Asian, Swedish, Irish, Israeli...never sounded Jamaican yet...but ya never know what's gonna come out of my mouth. Brains are so amazing. When I sing, I have no accent at all and even when completely dysarthric I can sing. So then I bet to play fairly fractured fairy godmother and I sing-song whatever I need to communicate (or pretend I'm Opera Mom) to make myself understood.ReplyDelete
Wow, thanks for relating your experience. You must really keep your family on their toes, but at least it must be interesting. And maddening as well as frustrating for you, I would guess. Have the pharmaceutical companies come up with any way to combat FAS?Delete
The brain truly is incredible. There is so much knowledge tucked away in there that we are not even aware of, until it reveals itself in dreams, or, in your case, in speech patterns. Wishing you nothing but the best…
Thanks Marc...I don't know about any meds for FAS. While my docs and speech pathologists in the greater Boston area where I live are interested in my unique FAS experience...one doc asked around amongst her colleagues doing research, there is no grant money available at this time to study my brain further with FMRI.Delete
I really don't mind the accents, they are kind of fun really. I do not enjoy dysarthria however, that is very frustrating particularly as I need my voice as a creativity coach and spiritual director to work with the few clients I have, and to guide meditation tele-circles. I cannot lead the circles "live" when dysarthria is "queen" for the day (or month...exacerbating right now). This week I offered podcast meditations only as podcasts, recording when I had a little respite from dysarthria and an accent only. I used my strength (singing) to my advantage allowing chant to be our gateway into silence. Though The Healing Womb was originally intended for women living through chronic illness, it has expanded to include all women on healing journeys and I'm thinking perhaps it may be time to invite men to join our circle as well. Please do drop by and check out the podcasts, they are free because I know that most people who are disabled are not working, or at least not full time so I respect this...as I am in the same boat.
If you go to the page that says "The Healing Womb" in the menu bar at the top of my blog: http://www.shinethedivinecreativityisaspiritualpractice.com you or anyone reading this can check out the meditations. I hope you will. They are my way of offering some relief, release, love, compassion and healing to the world. Meditation has been an excellent compliment to all the medications I am on!
blessings to you,
Has anyone read the Edgar Cayce readings on MS? He states the body lacks gold and that trace amounts of this mineral is necessary for proper brain function. So, yes, eat dirt if it has traces of gold in it.ReplyDelete