Clear as a bell!

Scan also takes years off your face, wrinkles fade like magic!

That’s what my 12 month post-CCSVI scans said about of my neck veins last week. Stent like new! No narrowing! No clots! No blockages at all, in fact. Thank you to  Barrie Vascular Imaging and Dr. Sandy MacDonald for courageously making the scans possible even in the current fear-based political climate.

While Dr. MacDonald presses ahead with what he was trained to do, in contrast, the Canadian medical establishment and the lamentably spineless federal Minister of Health dither, and people suffer.

Still, great news from Manitoba today! Oh, and how do I feel? Fantastic, since you ask! Taking on new projects, and enjoying every day.

Advertisement

Harper sockpuppet (aka the Minister for Health) kicks us when we’re down

Stephen Harper's Minister for Health. Or, anyone in his cabinet, really.

Stephen Harper doesn’t believe in socialized medicine and he damn sure doesn’t want it scaled up to address the needs of 75,000 Canadians suffering with MS, even if doing so would save the government millions very quickly.

After all, if that same socialized medicine is seeing to it that the provinces are spending 20,000 – 50,000 per patient per year to pay for MS drugs of very limited effect, well- that’s exactly the kind of transfer from the public purse to wealthy transnational corporations ( Big Pharma, to you and me) that puts Stephen to bed a happy boy every night.

That’s what we can take from yesterday’s announcement that the Canadian government will do exactly fuck-all for MS patients in Canada, other than pay a team of advisors to “monitor the situation” around CCSVI research.

I did a fair bit of media work yesterday, reacting to the news, and the key point I tried to make with it all is that yesterday’s news is a big win for the pharmaceutical companies, who already are doing a brisk 13 billion dollar a year business selling immunomodulators to people in the first stages of the disease. They can expect to ride an incredibly lucrative growth industry for years to come if they can only keep competing therapies out of reach. And given that their corporate-friendly associates in Ottawa are calling the shots, I predict we will be among the very last countries in the world to allow MS patients to have their veins unblocked.

The minister says her decision was taken under the advice of the head of the Canadian Institute of Health Research, which, under the direction of its current head, might better be called the Institute for the Ongoing Promotion of Pharmaceutical Research. Check his astonishingly close ties with Big Pharma on this handy CCSVI locator page — might require a login first but well worth your 30 secs to sign up; this is THE cutting edge site for breaking news on CCSVI.

First to reach me for reaction was Sandra Abma from CBC Ottawa, who brought radio producer Kate Porter along for a joint interview that we did in the Herb and Spice shop across the street from my workplace. A segment It got included in their evening newcast – audio of the piece is here.

Carol Anne Meehan of CTV Ottawa interviewed me for their six o’clock news; as of today only ( Sept. 2) the video is here, sixth headline below the video player. ( “Ottawa Man Reacts”). Audio can be heard here if you miss the video sell-by date.

We also made the front page of the Ottawa Sun this morning with this story by Justin Sadler, who has done solid work on the CCSVI file from the outset.

Fog lifts for Alberta man

I was thrilled to see this in my inbox this afternoon; a wonderful report from James Cooper of Edmonton, AB.

Hi Evan: You spoke with me a little over 5 weeks or so ago about going to Poland. I just got back Thursday night and the results have been amazing. I had the procedure done late Monday afternoon and it has been incredible since. In less than a week I almost do not have a limp any longer.  My memory is coming back. I am way more mentally sharp.  Things that seemed to confuse me before our not a problem to think through or understand now.  Its like I have come out of some sort of a fog.

It was frustrating me but I did not know how much it was affecting me until I had the procedure.  Joint  and neck pain I have dealt with for years appears to be just gone. The neurologist over there was shocked when he did my exit examination.  My weak right leg was very close in strength and mobility to my left in only two days.   When he first saw me I could barely lift the right leg off the floor by its self let alone hold it in the air.  I could stand on one leg and easily keep my balance with with either leg when he checked me over.

To say I am excited is an understatement.  Thanks for your encouragement and support. I am going to write a letter to my neurologist asking her to change my diagnosis from a MS patient to a CCSVI patient. If they contend over here that the liberation treatment is not a cure for MS, than that would indicate by my results they must have diagnosed me incorrectly with MS, or admit the two are the same.  Should be interesting.

Fantastic news James!

And in case a Holley from Calgary who has been on the Rutherford radio show is reading this, can you contact James?  In that “fog” he was talking about his misplaced your email and would like to be in touch. You can also leave word for him via a comment to this post.

Photo credit CoderMind.com

“The hearing of a small boy”

That’s what the ear specialist told me I have this morning, which isn’t bad at all after 12 years of MS scarring the old brain pan and buggering about with my nervous system.

So that was good news. The other good piece of news is that I have started to jog again after a 6-year hiatus when I was too scared to, what with dropfoot making me a big tripsy-toesy when I walked.

At walking speed I could recover from a trip before it became a fall, usually, but at jogging speed I couldn’t trust my toes not to catch, and send me for a spill.

But about six weeks ago I became aware that I just don’t trip up anymore, and a week and a half-ago the penny dropped and I realized that  “hey, I bet I could jog again!”

Coincidentally a few days later The Citizen called just to check in — the Brad Wall/ Saskatchewan story may have renewed their interest in the CCSVI file–and in going over the “how am I doing now” notes  told them I had started up the roadwork again, and later that day an editor emailed to say they wanted to send out a photographer.

Here’s the link to the story.

Still feeling great

“OK, but how do you feel now?  OK, yeah, I read that other post, but how do you feel now? OK good, but what about right now?

People keep asking,  and I keep saying – I had blocked circulation in the veins coming down from my brain. I had them unblocked. Not surprisingly, I feel the benefit of vastly improved circulation.

I really don’t know what else to say on the subject.  I feel great. Yes, it cost me $10,000. I believe it was the best $10,000 I ever spent on anything in my life.

And I also believe it is a crime that ten of thousands suffering people in Canada are denied the opportunity to have their circulation issues looked at by our medical system, simply because they have been red-flagged as as having a pre-existing condition that one particular branch of the medical profession feels they have “ownership” over.

So how am I doing?

Wardrobe by Courage My Man, Kensington Market, Toronto - stent not included.

Am I as top o’ the morning as this vintage ray of sunshine appears to be? Well, just about!

I still know I have MS, or had MS damaging my nervous system for 12 years, whichever you prefer. One side is still noticeably number than the other, and I have a ringing in my ears that comes and goes, as I have had for years. Fingers on the right hand are a little stiffer than the left hand, though better than before the operation.

But on the plus side:

• Whole days go by now without tripping over my toes
• Feet warm and more flexible
• Energy, energy, energy! I get by with 5 -6 hours of sleep a night, and rarely take naps.

• Cognition – it never hurts to think anymore, and so my writing is not the chore it was becoming in the last half-year before Poland.

Residual sensation of the procedure? Well, for the first month I could usually feel where the stent was in my neck. Not pain, but some discomfort. That’s mostly gone now, just the odd twinge that is not pain, just “presence”. But even that seems to be fading by the week.

I am still on my Plavix blood thinner pills, which I will keep up for a year after the op, and the stomach coating pills that accompany it. I take low-dose buffered aspirin, 1 per day, and will for the rest of my life.

So what to take for my experience? Just this – I  personally would do it again. So if you are reading this to try and figure out what to do for yourself or what to recommend to a loved one, please take it as my story — just one story out of hundreds.

To make your mind up you need to click around the internet and do some research. Hit Facebook and search groups with CCSVI in the name; there are dozens now and each seems to have its own group of people returning or about to set off. Click the links on the right side of this blog, and then click the links those links take you to. Read widely, consider your options, and decide for yourself.  I believe we will have the Liberation procedure in Canada within 3 years, but meanwhile there is Poland, Bulgaria, India, and who knows what tomorrow, all with different costs and pro/cons. Join the community of interest around CCSVI; you don’t have to be alone as you work out what is best for you.

Super-motivated Canadian lab coats pulling out all the stops to find “potential” abnormalities; preliminary report could be rushed through in few short years!

Team of top scientists working around the clock to find a cure

Ottawa journalist Becky Rynor has been doing a thorough job of tracking the CCSVI story from the beginning. She’s talked to MS sufferers and their families, discovered local context for the story, and published her work in the Globe and Mail.

Here she takes the time to balance the narrative by letting a representative from the Canadian MS research establishment explain, in his own words, how he sees his CCSVI-related research unfolding over series of steps that by any measure would surely represent three to five years of additional waiting time for any Canadian MS sufferer. But no mind; as he makes clear in the final paragraph, it’s all because the research has your best interests at heart!

In completely unrelated travel news, the rough guide to Bulgaria is available from Amazon.ca – used and new from $14.64.

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.

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!

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?