Category Archives: Future thoughts

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.

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Filed under Future thoughts, Research

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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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

Every single Kuwaiti patient with MS to be liberated!

10 per day to be treated with Liberation procedure until all 6,000 are seen to. This is a major, major breakthrough.

What country will be next? I am so looking forward to watching the dominoes fall. One thing we can be sure of, if our MS Society has anything to do about it, Canada will be the last. What happened to Own the Podium, Mr. Harper?

And hopefully some of us will remember this, the next time we read the usual propaganda about barbarous Islamic states where there is no respect for human life. For care of its sick and disabled, Kuwait is putting us to shame.

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Filed under Future thoughts, Post op, Resources

CCSVI treatment available in Australia!

And covered by their Medicare – if you are Australian. Hey OHIP, are you getting this?

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One week later – taking the fight forward

The first morning after

It was a week ago today I had my surgery. How do I feel now? Well, so far everything is going to plan. The immediate benefits of better circulation are still felt every time I wake up, with warm hands and warm feet helping me to greet the new day ever since the first morning after.

My dropfoot (tripping over my own toes) has decreased by 90%; that was a bonus I never expected. I seem to be more mentally alert and capable of multi-tasking, but that could be the post-surgery high; I admit that such descriptors are subjective.

So what now?

We wait.

I’ll need to decide whether to keep on my old immuno-therapy drugs (Copaxone) or let them go; I was assuming I would let them go– but until we have a solid understanding of how antibodies come to attack the nervous system prudence might dictate keeping up with them.

The Zamboni/Simka working model is that bad circulation of blood through the brain allows a concentration of iron to build up, eventually eating its way through the blood/brain barrier and providing a pathway for blood-borne antibodies to attack the nervous system, eating away at the myelin sheaths around nerves, etc.

Sounds very plausible, but it is the part that will take time to understand.

Meanwhile, my own belief is that we need to take MS out of the equation, and when scans show significant vascular blockages in the neck, patients need to be referred to vascular surgeons to have that remedied as a matter of course. The benefits of good circulation clearly go beyond the needs of MS; if you had a vascular blockage in your foot or even your little finger, you’d have it seen to immediately. A blockage at the base of the brain should be no less urgent!

I think that before the year is out some Canadian GP is going to tell a patient presenting with neurological symptoms to have a MRI neck scan done in Montreal or Vancouver, and if it shows positive for CCSVI, to see a vascular surgeon. There is a clear and compelling case for Canadians having the right to this surgery in their own country and in my opinion professional bodies and medical charities that obstruct that right are probably opening themselves up to legal action.

Certain organizations need to be reminded of what happened the last time a health charity in Canada got between patients and the information they needed to make an informed decision. Twenty years on, you can still ask any hemophiliac what they think of the Red Cross. That charity never regained the public trust over tainted blood supply, and eventually had its role in the blood business stripped from it by the state.

So fair warning to those organizations who are taking the paternalistic “we know best” attitude on behalf of those who they claim to be advocating for. We have long memories, and if we find that you have been obstructing our right to necessary care, we will find the resources to fight you– and win. And when we are finished, the face of MS advocacy in this country is going to look a lot different.

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Filed under Future thoughts, Katowice, Post op

OK, it’s a policy: donations gratefully accepted

I’m a little bit bashful about topics like this, as I am definitely not a natural-born fundraiser. But I’ve been asked by some readers of this blog if they can help out with donations to the cost of this surgery.

Well, the most truthful answer is “Yes, you can — and bless you for the offer.” In the even that others are so minded, I’ve tried to make that as easy as I can by putting a paypal link on the right margin.

Any amount is welcome of course, but please– don’t feel that you must. It’s an option put there for people that would like to, and certainly in no way expected of anyone!

OK, slightly embarrassing post, over and out!

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