Other recently stented man kiboshes, stands on chair

Duncan Thornton speaking last night in Winnipeg - photo by the Free Press

“Warm face, warm ‘ands, warm feet,
Aow, wouldn’t it be loverly?”

Well, with respect to Alfred Doolittle, it is lovely, and all the more welcome in a climate like Manitoba’s, too, I suspect.

Last night my brother spoke of his newly-warmed extremities, and much else besides, to an audience in Winnipeg; Melissa Martin of the Free Press does a good job of capturing the mood of the room in this piece from their online edition.

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Filed under Media, Resources

Routine angioplasty!

That’s what I say stents and ballooning are, and if they’re not, how else did there come to be hundreds of thousands of dudes walking around with ballooned and stented arteries? It’s unassailable logic like this that makes me love being a layperson, even if it does mean my bank balance is a woefully light when it comes to those six-figure drug company honoraria.

Well, you can hear my take on the whole thing in this episode of Connect, with Mark Kelley. Thanks to my sharp-eyed niece cousin, we know that my bit starts at about 37.28. Way to go, Jen!

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Educational activities

I have a question!

Like hundreds of thousands, maybe millions, tonight I saw the W5 documentary “The Liberation Wars”

It certainly got me thinking about which MS treatments are allowed in Canada, and which are not.

I got to thinking about some of the dollars involved in the treatments.

I shot Teva products into my arm every day for ten years, so I know a a bit about the kind of money that company pulls down. Their Copaxone injections cost my workplace drug plan $18,000 a year, which goes a long way to explain how the makers of the world’s top-selling MS drug did gross sales of $11 billion in 2008.And then there is Biogen Idec,  the makers of Tysabri, the MS treatment that costs 17,000 US a month, I’ve been told. Fine firms both, I am sure, that have  poured millions into research along the way. We likely know a lot more about immune reactions thanks to their studies.

But still,  I wonder about medical consultants or advisors to firms of such unimaginable wealth. Such advisors could do so out of the kindness of their hearts. Or they could be paid handsomely for their association with such corporations. I might have my own thoughts and so might you, but the next time the news media interviews such an individual in relation to the whole debate about which MS treatments Canadians are allowed to receive, they might do  a huge service to the discourse by simply asking: “how much money have you personally received from companies that manufacture and market drugs used to treat MS” — with the camera rolling.

Don’t you think?

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Filed under Post op, Research

Update: recently stented man talks about himself for hours; weary crowd calls out for more wheelchairs

As I blogged about on Thursday, yesterday I spoke to a public meeting organized by MS Liberation, an Ottawa-based adocacy and action group fighting for treatment options for Ontario MS patients. I told of my experience in Poland getting a simple 25 minute procedure –routine angioplasty really –to unblock the veins in my neck and allow for proper circulation of blood through my MS-damaged brain. The simplicity of the procedure combined with its extremely short recovery time – one night in a hospital, and off you go to live your life – seemed to be the aspect of my experience that really struck a chord with the audience, most of whom were MS sufferers or family members of an MS sufferer.

Sandra Abma from CBC News was there and caught the mood of the room very well I thought. Click the image above; the story begins at 23.50 — you’ll need to click and drag the scroller until you get there.

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Will you still love me if I’m not pathetic?

Duncan leaving Katowice: contemplating new pity-free lifestlyle?

The following is a guest post from my brother and fellow-Liberato, Duncan Thornton.

Two weeks after the procedure, I can say I certainly still have MS: I still have trouble pronouncing certain letters; I still have patches of numbness. But I didn’t want to be treated for CCSVI because I thought my MS would disappear; I wanted treatment because it seemed to offer a reasonable chance of keeping my MS from getting worse.

But for more than 20 years, my most troubling symptom has been cognitive and physical fatigue. Here’s what most days since I got back from Poland have been like:

  • Wake up, make coffee for Brenda, make breakfast for the kids
  • Do the sudoku and finish my coffee
  • Go to my office, get some work done
  • Make lunch for the kids, clean up.
  • Play with the kids
  • Get some more work done
  • Make supper, set the table, clean up after supper.
  • Go for a walk or something with the family
  • Put the kids to bed
  • Relax, do CCSVI email and web-stuff
  • Read a book for an hour
  • Go to bed.

Which is nothing special. It’s just a normal day for most people – but now it’s a normal day for me too.

So I did ask my wife if she will still love me if I’m not pathetic.

“It will take some getting used to,” she said.

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Filed under Future thoughts, Guest post, Post op

My surgery now on YouTube

You know, I can watch this video again and again and again. So great to see it is up on YouTube, where the world can see just how simple this life-enhancing procedure really was. I’ll put this up against those suits from the More Study society droning on about the horrible dangers of routine angioplasty any day.

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Filed under Future thoughts, Poland, Post op

Recently stented man set to wave fist angrily in general direction of MS establishment

Barbering, grooming, and sartorial finish not exactly as illustrated

Tomorrow, Friday the 9th of April, I’ll be speaking to a meeting of interested MS patients organized by Rebecca Cooney of http://www.msliberation.ca. I’ll try to keep my remarks temperate, but certain auditory cues may prompt frothing at the mouth. To avoid forcing the group to witness my spontaneous imitation of late-stage hydrophobia, I’ll hope the Q and A steers clear of the phrases “Big Pharma”; “let’s wait for more testing” and “high-risk surgery”

I’ll be at the Jack Purcell Community Centre, just off Elgin near Gilmour, and the time of my presentation will be 11.30.

If you are in the neighbourhood and would like to hear about my experience in Poland getting the Liberation procedure, pop by –  I’d love to meet you!

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