Sunday, October 23, 2011

Bits and Pieces: I'm Grumpy Edition

Sorry about the long gap between these scribblings and my last post, but I've been dealing with computer issues for the better part of this week. When I say computer issues, I'm talking specifically about some kind of malevolent computer virus that is causing all kinds of wicked little jerks and twitches to afflict my electronic ball and chain.

Despite a robust antivirus program, and overly intrusive firewall, and numerous anti-malware scans of varying intensities (the very fact that the word malware exists proves that Machiavelli was right, and evil does indeed lurk in the hearts of man), my computer has nevertheless contracted some kind of illness, the intensity of which lies somewhere between a sniffle and the flu. Trying to rid the device of this bug has in turn infected me with an obsessive compulsion to weed it out and smash it to bits.

I'm maddeningly frustrated to report that so far all of my many hours of efforts have been in vain, and, in order to avoid a violent cerebral hemorrhage, I may have to call in someone who actually knows what they're doing. Since I like to live under the delusion that I know what I'm doing no matter what it is I happen to be doing, this last step will be taken only as a last resort, and with bitter resignation, like General Lee surrendering at Appotomax Courthouse. Such a rancorous humiliation…

Despite my current state of semi-sane, glassy eyed distraction, I offer up to you the following selection of noteworthy items, most of which have something to do with MS or disability. After which I will once again descend into the writhing bowels of war…

§ I came across a new (at least, new to me) MS blog called "My New Normals" (click here), which I find to be well-written, insightful, and very well designed. Written by an MS patient named Nicole, the blog features succinct accounts of Nicole's experiences living with MS, told in an accessible and direct manner that contains many truths and more than a little bit of wisdom. I appreciate her ability to sum things up quite succinctly, quite unlike my predilection for writing long-winded novellas. Kudos to Nicole, and welcome to the blogosphere (horrible word, sounds like something that might be embarrassingly launched from a nostril after a particularly energetic sneeze).

§ This past week, the ECTRIMS/ACTRIMS (European and American Committees for Treatment and Research into Multiple Sclerosis) meetings were held in Amsterdam. This is the biggest annual medical conference devoted solely to MS, and was attended by researchers and clinicians from all over the world. In addition to the usual avalanche of MS drug trial data released, topics at this year's conference ranged from the role of parasites in the treatment of MS, to CCSVI, to stem cell therapies, to genetics. There's an awful lot of info to digest, and what with my "war of the viruses" going on, I haven't been able to devote the proper time and attention needed to process all of this new information, so I'm afraid I'll have to weigh-in at some later time. Luckily, though, the MS society sent Julie Stachowiak (who writes the excellent MS column at and video producer Kate Milligan to Amsterdam to produce a blog about all of the research developments discussed at the conference (click here). They did a terrific job giving a day by day and blow-by-blow account of this massive conference, breaking down the info into understandable written posts and video pieces. Highly recommended reading/viewing.

§ Speaking of Julie Stachowiak, at her regular gig, she's blogged about her recent experiences trying LDN as a treatment for her MS (click here). LDN stands for low dose naltrexone, a popular "alternative" treatment for MS. Naltrexone is a drug that is typically used to treat various addictions (inhibits the workings of the brain's opioid receptors), but in very low doses has been purported to have beneficial effects in treating MS and other chronic illnesses. Despite a tremendous amount of anecdotal testimony from MS patients who swear by the drug, there's been very little hard research done on LDN, primarily because the drug is old and off patent, meaning that there aren't billions of dollars to be made marketing it to patients. Therefore, there is no financial incentive for pharmaceutical companies to sponsor trials testing the efficacy of LDN, and since these days Big Pharma funds the vast majority of medical research done in the US, if they're not interested, treatments like LDN simply languish in a sort of medical twilight zone, tantalizing patients with promise but with no way to prove their worth. Truly a pathetic state of affairs, and one which only seems to be getting worse. In any event, Julie's relating of her experiences taking LDN makes for interesting and informative reading.

§ I'll be one of the hosts at a CCSVI MStery fundraising party being put on here in New York City on November 4, at the Hudson Eatery, located on 57th St. between 11th and 12th Avenues. Held on behalf of the Buffalo Neuroimaging Analysis Center (BNAC), which is doing extensive groundbreaking research on many aspects of CCSVI, attending the party and donating to the cause is a fun way to help further the CCSVI movement. The party will feature a silent auction which will include four of my photos (really nice 16 x 20 matted prints), the first time any of my photographs have ever been up for sale (yikes!). Dr. Robert Zivadinov, the head honcho and lead researcher at BNAC will be in attendance, and will discuss much of the CCSVI research he presented at ECTRIMS. If you're in the New York City area and want to have a great night out on the town while at the same time doing your bit for CCSVI research, you can register for the party by (clicking here). If you don't live in the area, or otherwise can't attend, but would still like to make a donation to BNAC, please do so through my "party host page" (click here), so that BNAC knows that the support has come from a Wheelchair Kamikaze reader. If you are be unable to attend the event but would like to bid on any of the auction items, you can do so via the magic of the Internet (click here). I look forward to meeting everybody who attends the party, and extend my thanks to all those who can't attend but still do their part to help further BNAC's research.

§ One other New York City-centric item: The Multiple Sclerosis Research Center of New York (headed up by my personal neuro, Dr. Saud Sadiq) will be holding its 14th annual free patient symposium on October 30, at the New York City Hilton Hotel on Sixth Avenue and 52nd St (click here). This year, the theme of the symposium is "Healing MS", which is, after all, the point of the entirety of MS research (at least I hope it is-there's always the "vast sums of money to be made off of desperate people" angle, which I can assure you plays no role in the very benevolent heart of Dr. Sadiq). These symposiums are always packed with valuable information, and offer glimpses into some of the cutting-edge research being done by the facility, in addition to reviews of the latest trends in treating multiple sclerosis. Topics scheduled to be discussed include preserving cognition, optimizing medical treatment, a question-and-answer on controversies (gee, wonder what those might be?), and, of course, healing MS. If you're in the area, this is an excellent opportunity for self education (and a free brunch).

§ I leave you with the following group of intrepid daredevils, The Red Wheelies, a British mobility scooter formation display team, who hold the current Guinness world record for "the greatest distance covered in 24 hours by a motorized scooter or wheelchair" (click here). While that achievement is indeed impressive, I'm more taken with their thrilling precision maneuvers, kind of like an air show but, um, on the ground and much slower…

With that, I take my leave, off to continue my conflict with my damned computer, which froze up while I was writing this last night, causing me to lose several hours work and delaying this post by a day. As far as my struggle with the computer virus goes, as Winston Churchill said, "This is not the end, this is not even the beginning of the end, but it is the end of the beginning…" Or, as my grandmother said, quite often, “Oy vey"…

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  1. This comment has been removed by the author.

  2. Hey! Love your blog. Check mine out, if you are so inclined:

  3. Sorry about your virus woes. On a more positive note, I thought I'd tell you that today I used your slide show during my (open-eyed) meditation, and it was wonderful.
    Thanks for your great photography.

  4. Oh how I wish, I wish, I could be in New York on Nov 4 for the dinner.

    However I am fighting my own technology war at the moment--the printer! And it is looking as if I will be spending the price of a plane ticket on a new 4-in-1. Ack!
    My sympathies on your virus.

  5. Thanks Marc. You Rock!!!!