A Generous and Thoughtful MS Donation

My wonderfully talented cousin Steve is a skilled and versatile photographer. He (and his generous cohort, Bill Guy) recently supplied some of their photos of the 2011 One Lap of America to MotorTrend Magazine for the accompanying article. (I made a brief visit to the 2010 One Lap of America, brief because I got so lost in Southern New Jersey I was gone nearly as long Gilligan and his pals: http://www.nourishourselves.blogspot.com/2010/05/day-at-park.html)

The MotorTrend article is great and of course the pictures are the best!:

http://www.motortrend.com/features/performance/1106_the_2011_tire_rack_one_lap_of_america/viewall.html

Well, Steve and Bill, with incredible generosity, have donated their fee from the article to the MS Society in my honor!! I am so touched and flattered!

Steve, some of you will remember, was my childhood Howdy Doody companion.  We watched Saturday morning TV together every week after my dreaded ballet lesson (I was an appalling little ballerina). One year older than me, Steve has been like a big brother to me my whole life, only nicer. One example: when we were about 10 and 11 he was teaching me how to play a card game, but I misunderstood the rules. Essentially, I was totally cheating with every hand we played. But he never said a word, he just let me gleefully win game after game. That is the kind of guy he is.

Steve as he always looks to me, no matter how old we get:

Steve in real life (I told you he was a photographer!):

Thank you dear, dear cousin for being so thoughtful and for being a constant source of goodness in my life.   




Did you like what you read? Let others know. Thanks!

Crisis and Discord in the World of Multiple Sclerosis, Continued

On June 28, 2010, an article about CCSVI appeared in the New York Times, the first major news outlet in the United States to provide such coverage. Written by Denise Grady, it is a succinct and balanced report on the condition, the treatment and, largely, the furor surrounding it.

I am on the fence about CCSVI and what is now referred to as the “liberation procedure” (because of the recovery, or “liberation”, that many patients have reported). The evidence at this time is primarily anecdotal and there has not been a large scale, blinded study. I also believe MS is a spectrum of diseases that will never have one single cure. However, I read the article with interest. And was stopped in my tracks by a statement attributed to Joyce Nelson, the President of the National MS Society. She was quoted as saying, in regard to the unprecedented hue and cry for this procedure:

“I wasn’t aware how thin the veneer was and how close to the surface the frustration was.”

WHAAAAT?

The President of the National MS Society is not aware that MS patients ARE DESPERATE FOR EFFECTIVE TREATMENTS?!?

I wrote an outraged letter. I have never been a fan of the NMSS, although I have done the walk every year, mostly to avoid a sense of utter futility in facing this disease. But I receive a glossy magazine every two months that really offends me. It extols MS patients who climb Mount Everest or folks who are relentlessly cheerful as they claim MS is a gift that has caused them to appreciate life or people who parrot the MOST obnoxious lie of all and say “I have MS but MS doesn’t have me”. It is loaded with pharmaceutical ads, which cause me to question their neutrality. I have no place in this organization as someone whose life has been shattered by this disease and says so. You are never going to catch me saying anything but the truth: it absolutely, positively sucks. No plus side, none at all.

In my letter to Ms. Nelson I described my indignation at her seemingly oblivious remark. I cited her compensation, almost a half a million dollars, compared to mine, now practically nil despite years of work and multiple degrees. I was livid and it came out in my letter. If she had so little true knowledge of people with MS, she had no business being in her position.

This Thursday, I had some sort of bug and for the first time in ages rested the whole day, actually napping through the afternoon. And while I was sleeping, who did I get a call from but Joyce Nelson herself. She implored me to call her back, which of course I would, I am not a complete cold hearted cow. (Hey! Stop laughing!)

I was truly surprised and impressed. And embarrassed. The only important call I get in ages and I am napping for the first time in about two years. We eventually caught up with each other the following morning and had an extremely positive and, I think, encouraging, conversation.

Ms. Nelson explained she had spoken with the reporter for at least an hour, so there was far more to what she said. And, to her frustration, the one quote was not expressing what she intended at all. She told me that she was already directing change at the MSS within the framework of a five year plan, especially to embrace individuals who had progressive forms of the disease. The more she told me, the more it came clear to me that her perspective and focus, the revamping of the MSS to be more inclusive and a reconsideration of the tradition of caution in the face of new modalities, did not meet the reporter’s agenda of an article purely about CCSVI. So Ms. Grady, at the Times, utilized a statement that was not deliberately misleading or misquoting, but one that fit what she needed in the context of her article. And it did fit, because people with MS have created a passionate groundswell of faith for this procedure. That was one of the main points of the story. Besides explaining what CCSVI was, Ms. Grady was demonstrating how frantic people with MS are, that they would chance an experimental treatment with side effects like strokes and potential damage from stents that come loose and travel to the heart. It was unfortunate that while Ms. Nelson’s quote served the reporter’s purpose, it did not serve her well at all.

I was frank and told Ms. Nelson exactly what I thought of the MSS. I told her of stories from fellow MS patients, about their fruitless and frustrating negative experiences with the organization. My own experience was of offering help rather than asking for it. I sent my resume and a proposal for speaking topics several times to my local chapter, which is less than a mile from my house. I never received any follow-up. Not even a ‘no thank you’. One of these offers was relayed directly to the President of the local chapter, who also did not give me the courtesy of any response. This man has since been promoted within the organization.

Ms. Nelson expressed being heartsick at these occurrences. I have to say, I was touched by her apparent earnestness, her pride in the MS Society and her expressed desire to make the organization something that embraces all people with MS. I told her at this point, the MS Society really marginalized anyone who did not fit their glowing, denial-filled stereotype. I believe that was hard for her to hear. It would be hard not to take criticism like that personally when you have been at the helm of an organization for an extended time.

I (of course, angling for a job; communication and management is my area, after all, and I would give anything to work again), gave my input: the MS Society cannot afford to be a cautious, staid and business–as-usual organization any more. It needed a shake up, it needed to reinvent itself into something more dynamic and original. If it was me, I would not accept that the Society was not extraordinary, fresh and constantly looking for new ways to do things. This is the only way to survive in business and it is the only way they can truly serve the needs of the people they purport to be there for. People with MS have to constantly reinvent themselves. So does the MS Society.

To her credit, Ms. Nelson listened to every word I said and expressed gratitude for my honesty. She was warm and gracious and generous with her time. She may have hung up the phone and said “Oy, what a nut!”, but I don’t think so. I got the impression of sincerity and a true desire to have the MS Society be a world class, cutting edge, risk taking concern.

So, at the end of this week of drama, where are we? Well, I still don’t have a longed-for job. My house is still crumbling. CCSVI is still a wildly hot-button, controversial issue, reviled by some, tolerated by others, and pursued passionately by desperate MS patients. The MS Society did some impressive backpedaling and posted a truly informative page on the theory and procedure, even to the extent of linking some material that ultimately is not terribly flattering to them and their delay in addressing the issue. I made a positive connection with an individual in a position of influence that I believe really wants to do good; someone who wants to be an ally in the fight against this loathsome disease and is proposing an organizational paradigm shift as part of that fight.

It will be interesting to see how this all plays out.

Crisis and Discord in the World of Multiple Sclerosis

There are many disheartening aspects about Multiple Sclerosis, even aside from the physical deterioration. One is that there is no cure. Another is there are no treatments that are 100% effective or safe. We have made some progress. Fifteen years ago there was virtually no treatment for MS besides the occasional steroid protocol. I say occasional because steroids are cumulatively dangerous and must be used judiciously, for only the most debilitating relapses.

There are five medications currently used to treat MS, but they are called ‘disease modifying’ agents, as that is all they do. They can delay or slow the progression of the disease, but not stop it. Even then, they are only effective a portion of the time, 30% to around 60% depending on the drug and when in the disease process it’s started. They are all administered either through injection or IV infusion and all have truly awful side effects, from continuous flu-like symptoms, to significant injection site skin damage to immune suppression that can result in a fatal brain infection, PML. That last medication is Tysabri, the drug that I receive through an IV infusion every month. The risk of PML and other deadly problems (liver damage, melanoma) increases with time. I am entering my third year on Tysabri. No one knows what happens after so long on this drug.

With these things in mind, consider the reaction to research by a respected and reputable Italian physician, Dr. Paolo Zamboni, who proposes a theory that some cases of Multiple Sclerosis are caused by blockages in the veins that allow blood to return from the brain to the heart. This condition is called Chronic Cerebrospinal Venous Insufficiency, CCSVI. Dr. Zamboni’s approach was a relatively straightforward one: try unblocking the veins and the result should be improved MS symptoms.

Lo and behold, some patients did experience just that.

So you would think that neurologists and news organizations and the National Multiple Sclerosis Society would have been all over this amazing, promising, minimally invasive new advance for an incurable, untreatable disease.

Instead, in the United States, from the professional community, there was the overwhelming sound of…crickets in the otherwise still and quiet night.

My neurologist said he had never even heard of this research when I asked him about it in January of this year, “but it sounds ridiculous”. I had to fax him the peer reviewed journal article by Dr. Zamboni. There was no public response from the National MS Society. American doctors who did know about Dr. Zamboni’s work were generally sneering.

While there was silence and/or downright hostility from the people we depend on to help us, in contrast, the community of people with MS rose up in an outcry of pleading for testing and treatment. Canada was on the forefront in North America, way ahead of us here in this country in at least addressing the possibilities inherent in this process.

Very slowly, in tiny, quiet pockets, and only due to patient activism, venoplasty and stent placement to treat MS began to be done here in the United States. My friend Marc, at Wheelchair Kamikaze, has been a major catalyst in disseminating responsible data in a readily understandable format about the procedure.

There was still nothing from the MS Society.

Next: Finally some exposure. And it gets personal, on two levels.