Bits and Pieces: a Smorgasbord of MS Info

A photograph of part of page 65, Woman's Home Companion, August, 1921, to get the 1921 Underwood logo (Photo credit: Wikipedia)

(To those who receive these posts via e-mail, this post contains several videos, which can only be viewed on the Wheelchair Kamikaze website…)

Well, how often do you get to see the word smorgasbord in print these days? Seems when I was a kid, back in the 70s, you heard the word smorgasbord a lot more. But then again, maybe it was just my family, although I don't know why a working-class Jewish family in Queens would use the word smorgasbord all that much. So, I'll go back to my original premise and suppose that smorgasbord was used in everyday conversation more back in the decade of leisure suits and disco balls, neither of which are seen much these days, either.

Actually, there was a famous commercial back then for Underwood Deviled Ham that featured a child actor who looked like a living Cabbage Patch kid, Mason Reese (click here), saying that the stuff tasted like a "borgasmord", so that might explain my associating the 70s with smorgasbords. On a side note, I once saw a teenage Mason Reese in the Museum of Natural History, and thought he'd have made a better display than patron.

Anyway, for those unfamiliar with the word, a smorgasbord is nothing more than a buffet, Swedish style. I'm not a big fan of buffets, they seem somehow unsanitary and besides, I like being waited on. And now that I'm stuck in a wheelchair and have only one working arm and hand, doing the buffet thing would probably be all kinds of difficult, so I guess I no longer need to be concerned about buffets at all. See, every cloud has a silver lining.

Okay, enough mindless prattle, here's this month's buffet of MS and disability related info, so take what you will and try not to sneeze on the rest, as other people will be reading it after you.

♦ Starting out on the ever popular CCSVI front, several studies presented at this year's annual Society of Interventional Radiology (SIR) conference demonstrated that CCSVI treatment appears to positively benefit a cohort of MS patients (click here). Like almost all studies of this type conducted thus far, these studies were done retrospectively, using patient reported outcomes, which are generally regarded as less accurate than more strict scientific research methodology. In any event, the reports generally fall in line with previously reported data, finding that the symptoms most likely to be beneficially impacted were "quality-of-life issues" such as fatigue, cognitive function, and heat sensitivity. While these tidbits are encouraging, there are more rigorous treatment trials underway, so hopefully we'll have some robust data to chew on sooner rather than later.

On the negative side, a study on mice (click here) who had their jugular veins ligated (read "snipped") found that they did not develop any nervous system dysfunction as a result of the damage to their jugulars. As mice don't ever really develop MS (the most widely used mouse model of MS isn't MS at all, but rather is an allergic reaction induced by researchers), I'm not sure how much weight to put behind these findings. I believe similar research is being done on marmosets, which kind of sucks because marmosets are really cute, but the results of marmoset research would be much more convincing.

The lead singer of the Divinyls, Christina Amphlett, has MS, and recently had CCSVI treatment (click here for video). She says that the treatment definitely benefited her, and I'm sure all of you who enjoyed her signature tune "I Touch Myself" back in the 90s will join me in wishing her well. Now, stop that or you'll go blind…

♦ Turning now to the wide world of MS drugs, it seems that the new oral drug Gilenya has taken it on the chin lately. The drug is now under review in several countries because of safety issues (click here), after a number of deaths due to cardiovascular side effects were suspected. Additionally, a patient on the drug recently developed PML (click here), although that patient had previously been on Tysabri, which somewhat clouds the picture. Since Gilenya is the first oral MS drug, its release was generally greeted warmly in the MS community, but the mechanism of the drug would appear to be somewhat troublesome. Gilenya traps T cells within the lymphatic system, thereby keeping them from patrolling anywhere in the body, which one would assume might have negative repercussions on the body's ability to fight infections and other maladies. As usual, it's a complicated picture, as Gilenya may have neuroprotective properties (click here), and such properties have long been one of the holy grails of MS research. Neuroprotection good, patient deaths bad.

In other drug news, a recent study provides evidence that the CRAB drugs don't do anything to slow MS disease progression, even though they do reduce MS relapses and white matter lesions (click here). The study spanned 10 years and looked at 262 patients. Another study showed that cannaboids (the good stuff in marijuana) inhibited disease progression in mice (click here), but, as I stated earlier, the mouse model of MS is really pretty terrible. Still, the case for medical marijuana only seems to be getting stronger, so smoke 'em if you got 'em…

♦ The Multiple Sclerosis Association of America (MSAA) does some terrific work, and has programs designed to help MS patients in financial need acquire safety and mobility equipment at little or no charge (click here). They have a similar program involving the distribution of cooling equipment (click here), which can be a godsend during the hot summer months for those of us bedeviled by heat sensitivity. If you are a US citizen struggling financially during these tough economic times, please don't be shy about taking advantage of these truly wonderful programs.

♦ Movement on Wheels (click here) is a social networking site designed specifically for wheelchair users. The site is very new, and doesn't yet have many members, but I think the idea is a great one and I wish Movement on Wheels much success. If you are a wheelchair or scooter user, I'd encourage you to check out the site and help it become a thriving community.

♦ For those interested in learning about buying wheelchair accessible vans, this site has a lot of valuable information (click here). I'm not endorsing the company that runs the site, but they have put together an impressive website chock-full of really good info, and knowledge is power.

♦ A company in Italy, Genny Mobility (click here), is marketing a wheelchair made from converted Segways. The chairs are not yet available in the US, and the website is strictly an Italian, but check out the videos to see just how cool this little beast is. Looks like riding around in one would be a hell of a lot of fun, and I appreciate the con mucho gusto attitude that the inventor/marketer displays in the videos. Here's a video of the inventor riding around with his very adorable dog, and please forgive me for subjecting you to "Who Let the Dogs Out", a tune that the world could have very easily lived without:



♦ In my never-ending quest to shine a spotlight on assholes, here are a couple of pieces about jackasses ripping off the disabled. The first (click here) involves a chap in England who seems to specialize in robbing the vulnerable, and the second (click here) details the theft of computers from a Georgia office of the NMSS. To the miscreants involved in these incidents, I wish a pox on you and all your ancestors.

Just to make up for the "Who Let the Dogs Out" thing up above, I'll leave you with a much more pleasurable listening experience. Although I don't understand a word of French (okay, maybe I understand a few words) I listen to a lot of French music. I got started on Jacques Brel (a Belgian, actually) a few years ago, and since then a wide variety of chanteurs and chanteuses have been finding their way into my ear holes. Here's one of my more recent discoveries, Emily Loizeau. The song even has a bit of English in it, expressing a sentiment I think we can all identify with:

Related articles

• Gilenya in Ireland... or not? (willeke73.wordpress.com)
• Safety of MS pill Gilenya reviewed after deaths (cbc.ca)
• The medical politics blocking CCSVI trials (macleans.ca)

Bits and Pieces: Back, Once Again

Image via Wikipedia

Here's yet another edition of Bits and Pieces, in which I assemble various MS related (and sometimes non-MS related) materials for your reading and/or viewing pleasure. These are all items which have piqued my interest for one reason or another, which I feel the compulsive need to share with my loyal (or even disloyal) readers. I hope these items pique your interest also, as having one's interests piqued can really be the peak of one's day.

I use voice recognition software to "write" these posts, so in actuality I speak to them, and for some reason I'm experiencing much merriment when speaking the word "piqued", in addition to the fact that I think it's pretty neat that the software is differentiating between piqued and peaked and peeked. Okay, so I had to help it out that with that last bit, but it's entertaining me nonetheless…

Anyway, let's get on with it. Here's a peek at what has piqued my interest over the last couple of weeks. To the right is a picture of a pique peek peak.

• CCSVI stuff: the International Society of Neurovascular Disease convened a meeting of some of the foremost CCSVI experts on March 14-15, in Bologna, Italy. Much important data was presented, including studies on the epidemiology of CCSVI and MS, the role of oxygenation and tissue drainage, the role of iron, advanced diagnostic imaging, the treatment of CCSVI, and development of animal models of CCSVI. Dr. Paolo Zamboni, who first put forth the CCSVI hypothesis, demonstrated new technology designed to improve the ease and accuracy of diagnosing CCSVI, in the form of a collar that can be placed on a patient's neck, which measures the difference in the volume of blood going through the jugular veins when measuring patients in an upright and then supine position. (Click here) for a summary of the conference findings, which will open up as a Word document. In my version of Word, the document opens up in a multipage format that makes it difficult to read. If you experience the same problem, simply go to the "view" menu and choose the "one page" option.

  From March 26-31, the Society of Interventional Radiology (SIR) will hold their annual meeting in Chicago, at which CCSVI will be a major topic of discussion. On the evening of Tuesday, March 29, the CCSVI Alliance will be holding a Doctor's Roundtable Discussion on CCSVI and MS, which will be open to the public. The panel includes a long list of some of the most notable names in CCSVI research and treatment, and the discussion, which will include questions from the audience, should be absolutely fascinating. Anyone in the Chicago area with an interest in CCSVI should make every effort to attend. (Click here) to register for this free event.

• Researchers at Purdue University have discovered that the decades-old hypertension drug Hydralazine may delay the onset and reduce the severity of MS symptoms (click here). The scientists theorize that the drug works by blocking the action of a toxic compound called acrolein, which is found in automobile exhaust and cigarette smoke. Coincidentally (?), a few years ago the anti-hypertension (high blood pressure) drug Lisinopril also showed promise in the fight against MS (click here). Might the action of these two drugs, both of which regulate blood pressure, play into the CCSVI hypothesis? Common sense would seem to indicate so, but common sense would also lead you to believe that both of these drugs, having long ago been proven safe, would at this very moment be undergoing exhaustive testing to ascertain just how effective they could be in treating the scourge of Multiple Sclerosis.

  Unfortunately, both drugs are so old that they are off patent, meaning that they are very cheap and available as generics. Thus, pharmaceutical companies can't make gazillions of dollars marketing them to MS patients. Since most of the medical research in this country is funded by Big Pharma, which only throws money at research that has the potential of turning a huge profit, these drugs have a snowball's chance in hell of being given more than a cursory glance as possible MS treatments. In regards to studies into Lisinopril, the lead researcher, Dr. Steinman, had this to say:

  "Who's going to pay for it?" he asked. A standard proof-of-concept study with about 200 patients would cost in the vicinity of $20 million. ACE inhibitors are as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study, he said.

  The line to the vomitorium starts behind me.

• On a much happier note, many people don't realize it, but service dogs aren't only for the blind. These amazing pooches can be of considerable benefit to disabled MSers, as they can be trained to do a variety of tasks, including retrieving dropped items, turning on lights, pulling wheelchairs, preventing falls, and helping to combat depression. All that, and as part of the package you get a fuzzy best friend for life who will love you unconditionally. For more information, (click here).
• A new online magazine, Atrium (click here), is dedicated to helping shift the thinking of a new generation of doctors and healthcare practitioners in this emerging age of widespread access to information and Internet social networking. These two factors are changing the patient-doctor dynamic, which in turn should change the way that medicine is practiced. Started by two extremely motivated Yale medical students, Atrium features articles, insights, and opinions on a wide variety of subjects, including not only medicine but also art, music, and philosophy. The editors have decided to include some Wheelchair Kamikaze essays in the mix, and I'm honored to have been chosen to represent a patient's point of view. I'd urge everyone to check out this new online resource, skipping over my essays to read the wealth of other fascinating material Atrium has to offer.

• Readers of Wheelchair Kamikaze know of my fondness for photography, and I recently came across the story of Flo Fox, a photographer who was born partially blind and later developed Multiple Sclerosis, which robbed yet more of her vision as well as her mobility. In the 1970s, Flo Fox was a personality in the edgy downtown New York art scene, and had gallery and museum shows around the world. She rubbed elbows with Andy Warhol, appeared on late night talk shows, and was even featured on "Live, with Regis and Kathy Lee".

  By pure happenstance, Flo Fox appeared in a 2010 documentary about Joan Rivers, when Ms. Rivers delivered food to Fox's apartment while doing volunteer work for the group God's Love We Deliver. Now in her 60s, Fox lives in housing for the blind, but maintains her moxie and mischievous spirit. Looks like I'm only following in her wheel tracks, as it seems like Flo Fox was the original Wheelchair Kamikaze. (Click here and here) for more on the Flo Fox story, and feast your eyes on the videos below, one of which is a montage of her photos of 1970s New York City set to some very cool music, and the other a clip of her appearance with Regis and Kathy Lee, circa 1983.