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Quite the disjointed title, I know, but I promise, I will weave it all together into a tapestry of MS beneficence (how's that for a mouthful?)…
As I'm sure most of you know, Montel Williams suffers from MS. He's been very public about many of the treatments he's tried, from chiropractic (click here) to something called "The Wisconsin Project", which uses an electronic thingamajig that patients hold in their mouths to stimulate the nerves in the tongue and thus rewire the brain (?) (click here), and he's also been very vocal about his support for medical marijuana, claiming that it's just about the only thing that regularly helps him with his excruciating MS pain (click here).
As long-time readers of this site know, I'm down with the medical marijuana thing, though I haven't puffed in quite a while. My neuro prescribed Zanaflex for my muscle spasms, and although I generally like to stay away from pharmaceuticals (says he who has an entire pharmacy in his medicine cabinet), the stuff works, and I never really enjoyed getting stoned on MJ, even as a kid (although I did go through the requisite "say yes to drugs" phase in my misspent youth).
Naturally, in this the age of Facebook, Montel maintains a Facebook page (click here), on which he names a "Friend of the Week". This past week, his Facebook friend was Michelle Firestone Brown, who just so happens to be a buddy of mine. I'm not really sure what kind of accolades and benefits being named Montel's Friend of the Week bestows upon a person, but I'd imagine that Michelle would be perfectly within her rights to wear a sash reading "Friend of Montel" and a diamond tiara, if she so chose. Knowing Michelle, I'm not expecting a sash or a tiara, and that's why I like her.
ADDENDUM (11/28/10 9:15 PM): Guess I was wrong about Michelle not wearing a sash or tiara to celebrate her being named Montel's Facebook Friend of the Week. Well, at least about the tiara, as is evidenced by the photo below, which arrived tonight via e-mail…
I have a confession to make. I am a Facebook Luddite. I just don't understand the appeal. Since it now seems that you lose your membership card to the human race if you don't have a Facebook page, I do have a personal page, but I almost never look at it. I get e-mails from people requesting that I be their friends, and usually press the "confirm" button, but that's about the extent of my Facebook participation. Aside from rediscovering old friends, there just doesn't seem to be that much "there" there .
I have this vague feeling that I'm missing out on something, as so many people seem to be slavishly dedicated to Facebook, but whenever I check out one of my Facebook friends' pages, I usually find updates like "I just had scrambled eggs. They were runny.", or "Terrible case of the bloat this morning. Alka-Seltzer rules!" While I was writing this post, I looked at Montel's page, and his latest update was, "Up early getting ready for my morning appearance on QVC-tune in and watch me!" I hate to be a killjoy, but really, if I were making an appearance on QVC I would probably be doing it under an assumed name.
I know there are dozens of Facebook CCSVI pages, and people keep telling me that I need to put up a Wheelchair Kamikaze Facebook page, but I don't really understand why. If any of you would care to enlighten me, please do so in the comments section of this post. Growing up, I was led to believe that the technology of the future would simplify our lives. It seems to me it's only made things more complicated. Where is my jet pack? Where is my replicator? Where is my robot butler? For that matter, where is the cure to my freaking disease? Or to any freaking disease?
Anyway, I've veered way off course. This is supposed to be about Michelle and helping the CCSVI cause, so let's get back on track…
I became friends with Michelle through this site, after we exchanged several e-mails in the early days of the CCSVI revolution. She works here in New York City, so we met for lunch one day, hit it off, and have been good friends ever since. She's also a wheelchair person, and we've talked about collaborating on a Wheelchair Kamikaze video in which we'd sneak up behind unsuspecting pedestrians waiting at crosswalks for the light to change, and blast them with air horns. Given the below the waist view of my wheelchair mounted camera, we might get some shots of tourists in Times Square involuntarily filling their trousers. Would certainly make for quite the amusing video, although we might upset a few folks. But what the heck, what are they going to do, beat up a couple of gimps in wheelchairs? Just let them try, my wheelchair weighs over 300 pounds, and judging by the huge chunks I've taken out of the walls in my apartment, I'm sure I could demolish any attacker's shin bones. Anyway, I'm not sure we'll ever really go through with it, but I do find the concept extremely amusing. Kind of like a wheelchair version of "Jackass".
So, back to Michelle and CCSVI. Not only is Michelle a friend of Montel, and a friend of Marc, but she's also the Vice President of the CCSVI Alliance (click here), a nonprofit organization whose mission statement reads, "CCSVI Alliance is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI)."
I know most of the people involved with the Alliance, and I'm even a member of their Patient Advisory Board (but don't hold that against them, everyone's allowed one lapse in judgment). Although the organization is brand new, and is just getting going, they've already facilitated the production of several very informative video interviews of CCSVI luminaries, including one that will soon be posted featuring two CCSVI pioneers, Dr. Michael Dake and Dr. Manish Mehta, discussing the future of CCSVI treatment trials, which we all realize are of vital importance. This video is chock full of very important insights and observations, and I will definitely link to it here when it's ready for public consumption.
But wait, there's more! In the near future, the CCSVI Alliance plans on funding CCSVI research, holding conferences and forums bringing together doctors of different disciplines to help speed up the research and education process, and bring our hopes for CCSVI to fruition. Time is of the essence, as every day finds more people getting diagnosed with MS, and those who already have it getting mired deeper and deeper in the relentless progression of the disease.
I am an ardent supporter of the CCSVI Alliance, and believe the organization will be a major force in furthering CCSVI research, ultimately benefiting the entire MS population. As with any nonprofit, the efforts of the Alliance rely entirely on the charitable contributions of its supporters. So, if you believe in the promise of CCSVI, and are in a giving mood, donate whatever you can afford to the CCSVI Alliance, even if it's only a buck or two. It's easy, and you can even use PayPal to do it (click here). Every donation will be greatly appreciated, and will go to a cause that has the potential to change the entire MS landscape.
See that, I did manage to tie together all of the disparate elements in the title of this post. Yowza.
I'm still not understanding Facebook, though…
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Frankly speaking it is hard to “believe the organization will be a major force in furthering CCSVI research”.
ReplyDeleteCanadian MS Society exists for many years and yet they manage to spend 48% of donations on their internal needs. Another NGO on this matter could exist if attracts money from stent producers and IR’s themselves. I doubt that few thousands of “true believers” facing upcoming treatment expenses (6.000 – 30.000) will contribute substantial amount of money, and I think it is highly unethical to ask sick people contribute their “spare” buck or two “for research”. There are official ways how to fund necessary medical research of any kind without use of patient’s money. What’s wrong with that? Nothing, except nobody will control the results, does this ring the bell?
Even if they (CCSVI Alliance and others alike) manage to raise some money from promoting “endothelial health” products and selling T-shirts, the money will go to fund the research which “will prove” CCSVI “treatment” only, the bias in this direction will be inevitable. This is far from the “good will” to find out what is really valuable in CCSVI hypothesis.
Zamboni walked away from the researcher’s “dream” study in Italy. By opting himself out (and withdrawing HF finance?), he caused reduce in the number of participants from 2400 to 2000, and also created a basis for possible “mistrust” in the future, because he unfinished to train (to his method) the rest of the participating researchers, only 6 were trained by Zamboni how to use this quite mysterious “Zamboni’s protocol”. Any comments?
Now there are studies in NF and other small provinces up to 30 (!) participants each, do you really think that such small studies will bring new valuable information on CCSVI?
Honestly, as far as fb goes? When I was first bed bound for five months straight it was quite entertaining...now it is an interesting way to connect with old friends...some of whom I really have reconnected with in meaningful ways...and I do link my blog entries up there to reach an audience outside my normal blog buddies...and I occasionally use it to connect with my nieces and nephews and former students as they don't generally do regular email...but I agree...I want my Rosie the Robot and jet pack and replicator too! (and someone to figure out these crazy diseases all lumped together under the heading of MS...and offer treatments that are not so dangerous, expensive, confusing!)...also I'm with you on the weird fb updates...kind of humorous...but not really.
ReplyDeleteHope you are feeling ok these days.
Thanks for deleting my comment, I agree that truth is inconvenient most of the time.
ReplyDeleteGood luck with your supported "charities", maybe you'll make a buck or two.
Yes, most of Facebook is stupid, however I would not have known about the doctor in Albany who treated my CCSVI, if not for the "friends" I met there. For that, I will be forever grateful.
ReplyDeleteHas your friend Michelle been treated yet? What about Montel?
Love your blog and videos. Always a pleasure to see the latest installment in my inbox.
Thanks for another insighful entry
ReplyDeleteAnonymous-I have no idea what comment you are talking about, but the only ones I do delete are either spam or rude. There are plenty of comments critical to my posts scattered throughout this blog. I welcome dissenting opinion, as long as it is expressed politely. Judging by the tenor your latest comment, though, I suspect you may have been deleted because of the "rude" proviso…
ReplyDeleteIf Marc is my friend, and Michelle is my friend, does that mean that Montel is my friend, too? I'm not sure if he holds a candle to my two favorite wheelchair-zooming Alliance members!
ReplyDeleteThanks, Marc for tooting the horn of our amazing friend and CCSVI advocate, Michelle Brown. We are so lucky to have her on our team!
Getting to know you both has almost made having MS worthwhile... almost. ;o)
Keep up the great work!
Nicole
It's hard to beieve that good comes from bad, but I feel exactly the way Nicole does.
ReplyDeleteIf it weren't for CCSVI and MS, Marc, Joan Beal, Dr. Sadiq, and TIMS, I'd be mired in self-pity and alone. Even my family would run for the hills if I was a misery. Instead I've directed my energy towards advocating for a cause I believe in and I am trying to pay it forward.
And to answer lovelyrita, yes, I was treated, and treated and treated. Marc and I are in the same club - we call it the LLC - Liberation Losers Club. I haven't given up hope, and luckily I'm stable enuogh to wait until I am ready to try again.
In the meantime, I will don my sash and tiara and proudly roll thru the streets of NYC using my 300+ lb wheelchair as a battering ram.
While I haven't cured MS or cancer or any other disease, I have seen progress on the robot butler program: http://www.irobot.com/
ReplyDeleteAnonymous-my apologies. Checked my e-mail, and your original post came in at 9:14 AM this morning. Don't know why it didn't show up on the blog, I did not delete it. Anybody who knows me knows that I wasn't awake at 9:14 AM. I don't do mornings, so unless I was sleep blogging, my deleting your post would have been impossible.
ReplyDeleteAnyway, here's your post, in its entirety, as retrieved from my e-mail account:
Frankly speaking it is hard to “believe the organization will be a major force in furthering CCSVI research”.
Canadian MS Society exists for many years and yet they manage to spend 48% of donations on their internal needs. Another NGO on this matter could exist if attracts money from stent producers and IR’s themselves. I doubt that few thousands of “true believers” facing upcoming treatment expenses (6.000 – 30.000) will contribute substantial amount of money, and I think it is highly unethical to ask sick people contribute their “spare” buck or two “for research”. There are official ways how to fund necessary medical research of any kind without use of patient’s money. What’s wrong with that? Nothing, except nobody will control the results, does this ring the bell?
Even if they (CCSVI Alliance and others alike) manage to raise some money from promoting “endothelial health” products and selling T-shirts, the money will go to fund the research which “will prove” CCSVI “treatment” only, the bias in this direction will be inevitable. This is far from the “good will” to find out what is really valuable in CCSVI hypothesis.
Zamboni walked away from the researcher’s “dream” study in Italy. By opting himself out (and withdrawing HF finance?), he caused reduce in the number of participants from 2400 to 2000, and also created a basis for possible “mistrust” in the future, because he unfinished to train (to his method) the rest of the participating researchers, only 6 were trained by Zamboni how to use this quite mysterious “Zamboni’s protocol”. Any comments?
Now there are studies in NF and other small provinces up to 30 (!) participants each, do you really think that such small studies will bring new valuable information on CCSVI?
I have a CCSVI scan in Albany on 1/11/11. I will post my results. :)
ReplyDeletehttp://vimeo.com/9173451
Why would you want to trade-in such a great blog for Facebook and farm animals and posts about runny eggs?
ReplyDeleteFacebook Luddites Unite! Sounds good to me.
Glad to see you blogging, and hopefully feeling better these days.
I don't get facebook either
ReplyDeleteGreat post, Marc!
ReplyDeleteIf I could, just wanted to address some of anonymous' concerns re: CCSVI Alliance. As a US based non for profit, we are encouraging dialogue between US doctors and patients and helping all with research-based information. The Alliance has been integral in bringing doctors together with patients at conferences such as SUNY Downstate, Albany, NY, and future ones across the country, as well as encouraging collaboration online thru the Endovascular Forum. We are also a presence thru our website, www.ccsvi.org, which has the most comprehensive information online. We do not have the resources to fund research at this time, but part of our mission will be to eventually fund independent clinical trials. We are not beholden to any particular doctor or corporation --we're just a group of volunteers striving to make a difference in the lives of pwMS. None of us will quit our day jobs (and Michelle will continue on as our queen.)
Hope that clears things up!
Joan
Great post as always Marc!
ReplyDeleteI totally agree with you about Facebook, but it has been great for getting my high school class together. Many of us still live in the area and we get together often.
It has also kept me in touch with other old friends.
And there is always Scramble! lol Not that I play it, of course. I've just heard about it. lol
I DON'T HAVE A FACEBOOK ACCOUNT, NOR DO I PLAN TO GET ONE.
ReplyDelete----------------
THESE ARTICLES, THAT YOU ARE WRITING FOR YOUR BLOG, REALLY SHOULD BE COMPILED INTO A PUBLISHABLE FORM. I WOULD BUY IT! ESPECIALLY IF YOU ILLUSTRATED YOUR BOOK WITH YOUR WONDERFUL PHOTOS AND MAYBE A SPECIAL SECTION WITH SOME OF THE BETTER CONTRIBUTIONS FROM YOUR READERS AND FRIENDS. DID YOU GET THAT?
I SAID "YOUR READERS".
THERE IS A LYRICAL QUALITY TO YOUR PROSE, AKIN TO THE SECOND MOVEMENT (PASTORAL) OF SOME SYMPHONIES. MEANING, AS WELL, "WHAT HAPPENS NEXT?" WRITING SUCH A PUBLIC FASHION ALLOWS EVERYONE TO BE CRITICS. NOT REALLY FAIR. BUT YOUR TAO OF MS SAYS THAT IS OK, TOO. I THINK. WHEN I CAN. THINK THAT IS.
FOR ME, I MUST NOT THINK IN ORDER TO THINK CLEARLY. AS I MUST NOT DO IN ORDER TO NOT DO PROPERLY. NOT DOING IS TO NOT DO. NOT DOING WHAT ONE IS UNABLE TO DO IS NOT HOW I NOT DO. ONE HAS TO NOT DO WITH MINDFULNESS. BETCHA YOU KNOW JUST WHAT IT IS THAT IS THAT YOU MUST NOT KNOW IN ORDER TO NOT DO.
JUST A BUNCH OF GOBBLDEE-GOOP. I NEED SOME FOOD. WHERE IS MY ROBOT? "HERE! I SAID HERE! COME HERE!" I DO WISH IT WOULD LEAVE OFF IT'S VACUOUS VACUUMING." YOU JUST CAN'T GET GOOD SERVANTS THESE DAYS. "ROBOT! BRING ME FOOD! ROBOT!"
THANK YOU FOR ALL THAT YOU HAVE DONE
SWAMP GRANNY
SWAMP GRANNY HUH? ARE YOU THE ONE FROM INDIA WITH THE 7 STENTS?
ReplyDeleteNope. If I were from India, I would probably be much more polite.
ReplyDelete7 stents is an awful lot.
Are you pulling my leg? ( Which means easing or mocking, for those you for whom English is not our 1st language,)
S. Granny
oops ....... I left the t off of TEASING
ReplyDeleteActually I am too busy for facebook. I'm not really interested in the daily minutia of people. I'd rather pet my dogs,read a good book, or watch the marvelous videos on http://www.TED.com
ReplyDeleteI'm going to be the proverbial fly in the ointment here, Marc. I have very little faith in the surgery for CCSVI theory and its ability to positively affect multiple sclerosis. I don't believe that MS is a vascular disease. To ME, there's just very little proof to support that hypothesis. Sorry. :(
ReplyDelete"Where is my jet pack? Where is my replicator? Where is my robot butler? For that matter, where is the cure for my freaking disease?..."
ReplyDeleteHa! Loved your points re technology, and growing up believing it would make everything easier. I agree that it has, in many ways, made things more complicated. For one thing, it is almost impossible for some people to "unplug" themselves from their cellphones, computers etc. Work can now follow you just about anywhere. You can check in on work and catch up on emails from that lovely vacation resort half-way around the world. Not so sure that is always such a good thing?! Always enjoy your posts. And BTW, really nice tiara, Michelle! :)
prairiegirl
I don't get FB either!! Love your posts Marc. I am lacking in people in my life who have MS like me, so I check here. Thanks for the reality!
ReplyDeleteFacebook for me has been Amazing. At first it was just a fun site to connect with friends, but now I am talking to people in Canada, being linked to videos of doctors all over the world, talking to so many about their experiences with CCSVI and their MS, and learning more everyday. I am surprised you dismiss this valuable tool for desemination of information.
ReplyDeleteEllen S.