Friday, July 30, 2010

But Atlantic Canada isn't interested (Radio Canada)

Sorry, this is only "en fran├žais": http://www.radio-canada.ca/regions/atlantique/2010/07/30/002-sclerose_en_plaques_atlantique.shtml.

So, will Alberta be next?

Thanks, Louis, for putting me on to this hope-inspiring CBC story: http://license.icopyright.net/user/viewFreeUse.act?fuid=OTM3NjkwNw.

And then there is the other side...

I have often disagreed with Margaret Wente on a whole host of issues, and that track record is not going to improve as the result of her latest column that says, basically, that CCSVI is a hoax and "liberation" is no better than snake venom: http://v1.theglobeandmail.com/servlet/story/RTGAM.20100729.escenic_1655171/BNStory/Other/margaretWente.  Her column is long on opinion, conjecture and misrepresentation... and very short on facts.  However, while it means that I don't have to go to the trouble of changing my opinion of her journalistic abilities, it does help to sow confusion for those who would really like some useful information.

Thursday, July 29, 2010

Political Blogger Discussion Concerning CCSVI

Thanks for the link, Anonymous... the discussion is interesting, in particular.  For those who didn't notice it in the comments section, here is the link again: http://www.smalldeadanimals.com/archives/014521.html.

Wednesday, July 28, 2010

Saskatchewan offers to fund trials of CCSVI/MS

It looks like at least one provincial government is beginning to turn around on the issue: http://www.thestarphoenix.com/health/Sask+offers+fund+trials+controversial+therapy/3329353/story.html.  This should give hope to people who have been hitting a brick wall in other parts of the country.

Friday, July 23, 2010

Louis has CCSVI - Yahooo!

My friend Louis was tested today at Dr. McDonald's clinic in Barrie, Ontario, and has been found to have CCSVI.  I'm sure that will make him feel better about going to Poland or Albany for treatment.  Although Dr. McDonald's clinic is intending to start doing liberation treatments sometimes this fall, they also told Louis that they would be happy to do follow-up after his treatment regardless of where he has it done.  Great news for Louis and for other Canadians!

Thursday, July 22, 2010

Is there a conspiracy?

While not bringing forth any startling new facts, this article by Steven Price is a coherent, reasoned argument for the possibility that influential individuals in the MS Societies in Canada and the US are fighting very hard to disprove that CCSVI could cause MS, and to hinder the establishment of CCSVI  assessment and treatment centers in North America: http://www.facebook.com/notes/ccsvi-in-ms-toronto/an-ms-society-conspiracy/433273839918?ref=mf.  Certainly their choice of which CCSVI research projects to fund should raise eyebrows: it's hard to take seriously research teams that don't appear to include vascular specialists, where neurologists say the goal is to "disprove Zamboni", and where the major researchers are in very tight with the MS Societies.  Unfortunately, the results of this flawed research would likely be trumpeted by the MS Societies as "proof" that they were right all along.  I can't see how the MS Societies could stop progress on CCSVI research and treatment entirely (not with what people can now do on the internet), but it would likely continue to muddy the waters for several years, which may gain them some breathing room.  Certainly it will be enough to make sure that most MS sufferers in the US and Canada will have to continue going abroad to be treated for years to come.  *sigh*

Wednesday, July 21, 2010

Approaching 3 months... no recent changes

In just over a week it will have been three months since my liberation.  I haven't noticed any recent improvements in my symptoms: things seem to have plateaued for the last few weeks. However, though things seem to regress when I'm really tired after pushing myself, neither I have I lost my improvements in levels of energy, mobility, strength and dexterity.

Quebecker's Liberation Story

For those of you who can read French, a story of liberation: http://www.larevue.qc.ca/actualites_medecine-fait-un-miracle-n18547.php

CJAD Show on CCSVI and MS

Host Tommy Schnurmacher interviewed Francine Deshaies and Christopher Alchenbrack tell us how they're doing today a couple months after "liberation", then grills Dr. Yves Savoie of the MS Society of Canada as to why that organization is so reticent about promoting assessment and treatment in Canada.  There are also good questions from phone-ins from accross eastern Canada: http://www.cjad.com/shows/19175

Go down to the Monday show and click to listen to Parts 1 and 2.

Friday, July 16, 2010

A treatment for multiple sclerosis that upsets Big Pharma

In case you missed the thread on TiMS, here is a good on-line article advocating better journalism and truly useful and timely research related to CCSVI and the liberation treatment: http://rabble.ca/news/2010/07/treatment-multiple-sclerosis-not-yet-given-its-due.

Thursday, July 15, 2010

But then, great news on the same day!

Roxanne, a lady from Quebec who was liberated in Bulgaria on Monday just e-mailed me to tell me that she has been transformed by the procedure.  Even though she was diagnosed as SPMS and had been in a bad turn since March, she feels ALL (!?!) her symptoms have disappeared!  And here is more good news about Barb Farrell, who also seems to be having great improvements in a short period of time: http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2668820.  Good reasons to be optimistic after all...

Depressing visit with my GP

Although there for other reasons, I took the opportunity to discuss CCSVI and liberation with my GP today. My GP has been quite supportive of my decision to go to Poland, but today he said that he couldn't see how blocked veins could cause hypoxia... which are only caused by blocked arteries to the brain... (has he been reading Colin Rose's BS?).

Anyway, that little argument wasn't what bothered me. It was his later saying that it is highly unlikely that anything will be done in our part of the country (or anywhere in Canada) until the whole CCSVI/MS relationship is sanctioned by neurologists... that if anything will happen it will be led by neuros. I can imagine how soon that will happen!

Some on TiMS blame this situation in Canada on our health system, but I would only agree with that in the sense that people make up the system, and our health system doesn't do much to reward health professionals for being innovative or even open-minded. Just remember that the situation in US hasn't really been much better, though some of the reasons are different.

For all those who insist that we must "go local", just remember that many of us live far away from big research and medical centers. In many parts of our continent, I couldn't (in good conscience) advise anyone to pin their hopes on going local. While, eventually, this must go local to really reach the masses, how can you ask individual people who are going downhill quickly to give up their only real hope for changing their personal circumstances? Given that operations in the US have been shut down before, I wouldn't even advise an MSer to give up an opportunity overseas because they have been contacted by, say, Albany.

Wednesday, July 14, 2010

Is the Reformed MS Society a legitimate organization?

Is the Reformed MS Society a legitimate organization?  Is Steven Simonyi-Gindele a legitimate business person who has been the subject of an investigation years ago, but has been ultimately cleared?  Read the ongoing discussion yourself at http://www.thisisms.com/ftopic-12726-days0-orderasc-0.html where the allegations are made and Steven (and others) answer them.  You have to decide for yourself who is right.

Monday, July 12, 2010

MS Ontario Writes to Ontario MPPs--Do NOT Fund CCSVI Treatment!

In case you missed this one in TiMS, it's worthwhile reading the first posting: http://www.thisisms.com/ftopict-12691.html.  If this is found to be true, it going to be hard for me not to get VERY angry with MS Society officials.

Saturday, July 10, 2010

Back on the treadmill...

Today, for the first time in almost a year, I included the treadmill in my exercise routine.  The last time I did it, things were getting so bad that I couldn't even do 13 minutes, and the last 5 minutes of that were so bad that I knew it was only a matter of time until I broke my ankle.  Today I did 15 minutes (!), and though there were a couple of times when I dragged my toe, at no time did I have my heart in my throat, certain I was going to trip badly and hurt myself.

My left leg is getting stronger in other exercises, as well.  Small changes at a time, but it's great to see a trend that isn't downhill for a change.

Friday, July 9, 2010

A Draft of "CCSVI : A Lay Person’s Presentation..."

A draft of my presentation is ready. It's big so I uploaded it to my server service. It's a Powerpoint 2007 file, but if some people want to see it in an older version of Powerpoint (or something else), let me know. Here is the site:

https://sth-se.diino.com/tedrobak/Shared%20Files

The password is euromedic

Thursday, July 8, 2010

Do the major MS drugs (the CRABs) really work?

Apparently not, according to this summary by Ashton Embry based on the large, long-term studies done in the United Kingdom and elsewhere: http://www.direct-ms.org/magazines/Embry%20MS%20Drugs%20Don%27t%20Work%2007%2010.pdf.  Certainly they don't seem to make any difference (statistically) in the progression of the disease.  Pretty damning, I would say.

Wednesday, July 7, 2010

Outline for "CCSVI : A Lay Person’s Presentation for Lay People"

Here is the outline for the presentation I'll be making to a chapter of the MS Society.  Please provide me with suggestions/criticisms concerning gaps, sources, etc. Remember, this should be a 20-30 minute presentation, leaving time for discussion.
  1. What is CCSVI? (Show different kinds of blockages, mention possibility of some of the more obscure ones)
  2. What is the evidence that CCSVI exists?
  3. What causes CCSVI?
  4. What, until recently, has been the generally accepted theory regarding the cause(s) of MS?
  5. What is the evidence that an overactive immune system causes MS?
  6. What is the new evidence that MS damage is not, initially at least, caused by an autoimmune reaction?
  7. What are the theories  regarding the relationship of CCSVI to MS? (Poor blood flow [usually over a long period of time], blood pooling, hypoxia, inflammation, breach of the blood-brain barrier, iron deposits, demyelenization and CNS damage, then T-cells begin to appear [at first to clean up damaged cells, and then an immune system over-reaction].
  8. Is there evidence to back up these theories?
  9. How can CCSVI be diagnosed?  (MRV, Doppler US and catheter venography – and explain how this is not a simple straight-forward test that can be done by people without special training)
  10. How can CCSVI be treated? (Diet?  Drugs?  “Liberation”?)
  11. What are the two main schools of thought regarding liberation?  (stent, no-stent, the arguments for each side)
  12. Where can CCSVI be diagnosed, where can it be treated?  Which of these can be considered “open” clinics where anyone (with the money) can go?
  13. Why (how) did I decide to go to Poland (Euromedic) for diagnosis and treatment, why did I feel (at the time) that seeking diagnosis in Canada was not worthwhile?
  14. What were my experiences with CCSVI diagnosis and treatment, with Euromedic and Poland?  What did they do well, what could they have done better? 
  15. What has changed for me since my treatment?

Presentation for Lay People

I put this on TiMS a week ago:
I'm going to be making a presentation about CCSVI to the local (northern New Brunswick) MS Society chapter in early August. It will start with an intro to the CCSVI theory including corroborating evidence, present some stats on the numbers and locations of "liberations", give some info (mostly anecdotal) on impacts on treated people, then describe my own experience in Katowice and after.

I am hoping that the first part(s) has already been done (in lay terms) by someone so I don't have to reinvent the wheel in terms of the work to be done. If someone knows of such a ready-made presentation, could you please point me in the right direction to find it? Although my presentation isn't for a month, I need to translate it into French (or at least provide explanations en francais), and translating is slow for me.
...Ted
Can anyone out there help by pointing me to presentations, images, articles... and/or by reviewing the draft when it's ready?

Tuesday, July 6, 2010

Response to Ozi - Returning to Gym

Hi Ozi, I wasn't told much about this in Poland (of course I didn't ask, either) and I started light exercising almost as soon as I returned to Canada. From reading people's posts on TiMS (based upon what they heard from doctors, mostly), you should keep your exercise light for at least two weeks so that the stent has an opportunity to become fixed in your vein.  Since I'd only heard that after I'd been home for a while, I actually started upping my exercises toward what I normally do after being back only a week, but it's probably safer to wait at least two weeks. ...Ted

Sunday, July 4, 2010

Friday, July 2, 2010

MS and Genetics

We're up north at the cottage again for an extended Canada Day weekend.  Yesterday we were invited to the home of a wonderful lady who is one of five cousins in her family with MS.  There were other MSers there, including a fellow who is from a different family that also has five cousins that have MS.  Other than the fact that they are both of Acadian heritage, there is nothing that directly links those two afflicted families.  I realize that I may be "misremembering", but I was sure that when I was reading up on MS soon after I was diagnosed, I had learned that genetics was understood to play only a small part in the incidence of MS.  However, with two families having such a high number of MSers, it makes me wonder if there isn't something wrong in the way that the statistics for genetic causality were calculated.