Tuesday, October 18, 2011

More on superhero with MS

From: Lorimayb

I'm not quite sure what you mean by "MS dissident." Can you elaborate? I'm in favour of things that put MS in the "spotlight" but I'd prefer it to be more realistic. Would this superhero be able to fly with a spastic bladder?--look out below! A "young boy"? Many people think they know what having MS is like but until you've had it for awhile--no clue.

I was diagnosed in 1990 and became "secondary/progressive" before any of the drugs were available so escaped being co-erced into suffering the side effects. I'm extremely happy to say I had venous angioplasty for CCSVI in March/2011 and even though I was told I would never get better--only steadily worse--I defied the neurologists' prediction and have improved greatly. Please see my before/after video and my 6-months after treatment video.


First of all, I'm delighted that CCSVI has worked so well for you. I hope it continues to be helpful.

I doubt I'll attempt CCSVI until the root cause of the disease has been addressed. (It's my belief that venous stenosis is a symptom of MS, not a cause.) But that doesn't mean that others won't find it tremendously helpful--though some, of course, don't get any help at all, and others gain only temporary relief until the vein closes up again. (ETA: And, of course, the trauma of the procedure itself can trigger exacerbations.)

So, anyway, to answer your question. By dissident I mean someone who doesn't swallow the CRAB drug (e.g. Copaxone, Rebif, Avonex, Betaseron) Kool Aid. It's my belief that the autoimmune disease theory of MS isn't the whole story and that, therefore, immunomodulatory drugs address a symptom and not a cause. I've had a lot of experience with immodulatory and immunosuppressive therapies. They don't work for me, the treatment is unpleasant, and the side effects terrible. They cost a fortune, too. So I don't do those anymore. I eat well, exercise as I can, and take the supplements I find useful: fish oil, flax oil, evening primrose oil, and vitamin D--lots of it.

Back to the film. It's my impression that the hero is a boy with MS who turns into a grown man with superpowers and without MS. But does he turn for months, or does he turn on a schedule: part of his day or week or month? I don't know, but this decision will have an impact on the tone of the film.

How are they going to keep the film light? I don't know that, either. But I'd guess by avoiding the kind of realism that will upset American audiences, such as incontinence, slurring or confusion, spasming at awkward moments, or the inability to swallow. Will they show him struggle, or will he be tucked tidily into a wheelchair? Again, I just don't know. This all matters, of course, because of the general distaste of this culture for bodily functions. (I wrote a whole essay on this, "Writing from the Body.")

However, I cheer up when I remember this film will be made by the team that brought us Kick-Ass. So my guess is they won't be shy about some of the realities; I just don't know which ones.

If I had input, I'd suggest they use a batch of symptoms very like mine because (a) that would be cool (I've always wanted to be a superhero) and (b) it wouldn't trigger the American distaste for the messy body. So I'd go with muscle weakness, particularly in the legs, some pain (always good for sympathy), numbness, fatigue, and very occasional eye problems. (Truly seeing double is an interesting experience, and I can imagine how it could be adapted to a superpower.)

But mainly I hope it has some jokes, and some cool superhero sequences, and that some Bad People get what's coming. Because it's, y'know, a movie.

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