Image by wallyg via Flickr
There's a Chinese restaurant around the corner from my apartment building that makes incredibly quick deliveries. Sometimes it seems like the delivery guy is knocking on the door of my apartment before I even put the phone down. I really don't know how they do it. Anyway, the menu features an item called "Little Bit of Everything Soup", and that's just what it is, a delicious medley of a little bit of everything. The soup is a meal in itself, sometimes even two meals, since the portions delivered can best be measured in gallons.
That's kind of what this post will be. I don't know that there's any real connection between any of the items here, other than they all piqued my interest in one way or another, and most at least have something peripherally to do with MS or mobility issues. So, submitted for your approval/attention/enjoyment, I present to you the following tidbits…
Since CCSVI seems to be at the top of the list of everyone and everything involved with MS these days, I'll start off with a couple of "vascular theory" items.
Demonizing socialized medicine is a favorite pastime of much of the US population, but as our Canadian friends are showing us, there's something to be said for a medical system that doesn't rely almost entirely on pharmaceutical companies to fund medical research. Although the Canadian national government hasn't yet acted in regards to CCSVI (although there has been plenty of debate about it in Parliament) the country's individual provinces are starting to step up to fill in the void. Saskatchewan started the ball rolling, with the province’s Premier, Brad Wall, announcing that Saskatchewan will start funding clinical trials of the Liberation Treatment regardless of the inaction of the national government (click here). Several other provinces, including Québec (click here) and Nova Scotia (click here), have joined Saskatchewan's call to action. Kudos to the Canucks, as treatment trials of the Liberation Procedure, which will be the quickest and most direct way to prove or disprove the CCSVI hypothesis, are desperately needed. Kudos also to my younger brother, who now lives in Montréal, is the Dad of an adorable French-speaking toddler, and recently became a Canadian citizen. The accomplishments of my little bro may have nothing at all to do with MS, but, hey, it's my blog and I'll kudo who I want to…
One of the growing problems with the CCSVI wildfire that is raging through the MS Internet world is that folks new to the idea are getting an unrealistic picture of the success rate of the Liberation Procedure. If a patient were to get their knowledge strictly from YouTube videos and the various CCSVI related forums, they could easily get the impression that the procedure almost always results in dramatic improvements in those who undergo it. The reality is not quite as rosy, though, as some patients see little or no improvement after being treated by a Liberationista (I think I just invented that term, and I kind of like it). Dr. Siskin, the Liberationista working in Albany, recently stated publicly that one third of his patients experience only minor improvement, and another third no improvements at all.
Having said that, I can't resist sharing the wonderful post-liberation experience of an MS patient name Nicole, who is a fellow member of the Patient Advisory Board of the CCSVI Alliance (click here). She first underwent venoplasty on her blocked veins at the beginning of March and saw some immediate improvements, but her veins then restenosed and her improvements receded. Nicole underwent a second procedure less than month ago, and has again experienced some very positive results, this time validated by her neurologist. She's written a great account of her triumphant neuro visit on her blog (click here). I'll have more to say regarding CCSVI in my next post, which will be entirely devoted to the subject.
A fascinating article published in the New York Times this week (click here) details how a normally dormant gene in human DNA can somehow become "reanimated" and cause a form of Muscular Dystrophy. Scientists have learned that up to 95% of the genes that makes up the human genome are junk, remnants from the ancient past that have remained part of the structure of human DNA but serve absolutely no purpose in the development and functioning of modern human beings. Researchers were surprised to discover that some of this genetic junk can become reactivated, and in this case cause a rare variant of Muscular Dystrophy.
What really grabbed my attention about this article is that several years ago researchers at Tufts University suggested that a similar mechanism may play some part in the MS disease process (click here). Many of the dormant genes in human DNA are left over bits of ancient retroviruses, which at one point were infectious, but over the course of hundreds of thousands of years of evolution have simply been harmlessly incorporated into the structure of the human genome. Scientists at Tufts suggested that the presence of long term "smoldering" infections, such as Epstein-Barr virus or HHV-6, might somehow activate these normally dormant viral remnants, thus leading the immune system to attack the body's own cells, and cause what has been come to be called the autoimmune reaction. The idea makes much sense, and at least offers some explanation of autoimmunity. I'm always incredibly frustrated when doctors simply label a disease like MS "autoimmune" and leave it at that, without attempting to explain why on earth the immune system would simply decide one day to become cannibalistic and start attacking the body's own cells. CCSVI offers one explanation of the apparently aberrant immune response seen in MS, and this reactivated gene theory offers another. They could very well both be right, as MS is so heterogeneous that a variety of different mechanisms may be at work in the different forms and presentations of the disease.
- The Beautiful Brain is one of the most interesting websites I've come across in quite some time (click here). Exploring the intersection of neuroscience and art, the site features essays, interviews, and galleries that delve into the how’s and why's of the biological impulses that lead to creative expression. It's filled with stimulating information about the essence of creativity, and the natural inclinations that lead human beings to feel the need to make music, paint, dance, and embark on all of the other artistic endeavors that so enrich our lives. It's also features lots of eye candy, amongst which is a gallery of intriguing artwork created by WK reader Elizabeth Jameson, who uses her own MRI images as the basis for creating striking visualizations (click here). Definitely worth checking out, but be forewarned, you may very well lose several hours getting sucked into the world of The Beautiful Brain.
- Moving from the sublime to the ridiculous, here's a page that highlights some of the most asinine wheelchair ramps ever constructed (click here). Whereas The Beautiful Brain leads one to marvel at the mystery and majesty of human intellect, this site reminds us that the stuff that resides between many people’s ears is no cause for celebration. Wheelchair ramps built at impossibly steep angles, that don't reach all the way to the top of the stairways they are meant to circumvent, that end in mid air? Yup, here they are, in all of their idiotic splendor. I have personally almost killed myself trying to navigate my chair up the nearly vertical incline that one New York City restaurant thoughtfully provides for its disabled customers, so the examples illustrated on this page should really come as no surprise. Still, though, I paused, stared, and wondered at the sheer stupidity behind the planning and execution of some of these comically absurd monstrosities. Attempting to actually use them would give new meaning to the words Wheelchair Kamikaze. Wow.
- Though you might not agree with everything he writes about or stands for, journalist Christopher Hitchens is inarguably an immensely talented scribe, and holds a high place among those storied and playfully wicked spirits known as gonzo journalists. Recently diagnosed with esophageal cancer, Mr. Hitchens wrote this exceptional piece for Vanity Fair (click here), in which he comments on his sudden abduction into the world of the ill, the very real likelihood of his own demise, and the seeming randomness of it all. A must read for everybody, whatever their state of health.
- I added a little doohickey to the left column of this page that allows readers to enter their e-mail addresses so that notifications of new posts will be sent directly to their inboxes. Wouldn't want anyone to miss a second of the exciting goings on here at Wheelchair Kamikaze. Yawn.
Well, that's all there is. And, as Peggy Lee sang so many years ago, in a sentiment that I think Christpher Hitchens would appreciate, if that's all there is, let's break out the booze and have a ball. If that's all there is…
I officially decree that you have achieved the state of ZEN! Right on with all your comments, and the Vanity Fair article was so pungent that my lips curled. Keep them coming, Marc.ReplyDelete
Marc, great post as always. It's an incredible coincidence that I also quoted Hitch in the blog post I made today. I "HA'd" out loud when I saw you reference him as well! Funny! Hope you're well dude.ReplyDelete
Entertaining and informative as always. Fascinating stuff about reactivation of a dormant gene. Another theory that makes sense.ReplyDelete
As a singer and musician I'm off to check out The Beautiful Brain. For an interesting read on that subject I highly recommend "Musicophilia" by Dr. Oliver Sacks (of "Awakening" fame). It's technical but fascinating.
Terrific post, Marc. My son keeps me on my toes and had me watch Charlie Rose's interview w/Christopher Hitchens...sad what he is facing now. Happy to see that the 2nd time arounders are getting even better results with the Procedure..unsure if I will re-up for another go 'round myself and wonder how insurance will regard it the next time?? I took a photo of that same ramp in Mexico from my scooter...what a joke! I felt very welcomed into that jewelry store. Ha! RobertaReplyDelete
great article by Christopher Hitchens and the artwork of Elizabeth Jameson is wonderful(as is her positive attitude toward the gifts that come through living with MS). Thanks Marc!ReplyDelete
The Hitchens article prompted me to review the five stages of grief described by Elizabeth Kübler-Ross; denial, anger, bargaining, depression, acceptance. How appropriate for someone who mourns the loss of their physical being, too. I can say now that after five years, I've entered the final stage of acceptance with my MS diagnosis. While I continue to keep up on the research, follow doctor's prescriptions, etc., I am looking forward to getting a Power Chair to bring me back to some level of independence.ReplyDelete
Thank you for a wonderful post, Marc.
Hilda-welcome back, and I'm glad you enjoyed the post. I really liked the Hitchens piece, also.ReplyDelete
Lew-maybe there really is something to the idea of a "mass subconscious". Perhaps we have some sort of psychic connection. You shower, and I get clean.
Ms Andisue-I really find the dormant gene theory extremely intriguing. Seems like the kind of thing that could explain a lot of "autoimmune" diseases, and after I'd read that initial report Out of Tufts I didn't see anything else about it until this week. Maybe now researchers will start looking at it the hypothesis more intensively.
Hope you enjoyed the Beautiful Brain site…
Roberta-funny that you found that same ramp. It is very sad that Christopher Hitchens is facing such long odds. He's packed a lot into his years, though. I love the line (I'm paraphrasing) "I often burned the candle at both ends, and found it gave off a lovely light"…
Laura-you're welcome, I'm glad you enjoyed the post.
MB-I agree, the five stages of grief definitely apply to our physical losses as well. It gets kind of complicated, though, because I think I'm at different stages of grief simultaneously, as the losses keep mounting. I hope you get your power chair soon, it's amazing how liberating it is to suddenly have the freedom that wheels provide…
Great post. You always hit a useful nerve or more. Thank you.ReplyDelete
Here's some more background on the junk DNA, evolution, and autoimmunity. I saved this article all these years hoping that I would be able to understand it. Perhaps you have a better chance at that.
Hitchens is another matter. I hadn't heard this news and was still relistening to the Rose interview on my unreliable internal reel to reel recorder and hoping as he mentioned that there would be another memoir ahead.
It may be a log or a field guide instead, but if anyone can navigate these dark eddied waters and enlighten us with a candle burning at both ends
it would be Hitch. He's off to a good start.
I heard Dr. Siskin comment at a CCSVI symposium that the hardest thing to overcome is his patient's expectations. I plan to have the procedure done in the next month or so (once I've worked out my insurance bs). I'm keeping my expectations low, my intentions/hopes high. I really enjoy your blog; you are an excellent and entertaining writer. Keep em coming, Marc!ReplyDelete
If this is the case with you, you may be able to find better assistance with other health insurance.ReplyDelete