Dr. Bill Code, Canadian doctor and MS expert, treated for CCSVI!

Hmmm... it looks like if you're an MS expert who has MS, you want to be treated for CCSVI: MS doctor treated for CCSVI.  Now, I don't wish MS on anyone, but maybe if more MS experts had MS, we'd be getting much more action on CCSVI treatment in Canada.

Seven months ago...

Today is seven months since I was treated in Katowice. So far I have maintained my significant improvements with respect to fatigue and modest improvements in mobility, dexterity and strength. As the big spread in last weekend's Globe and Mail suggested, this is no miracle cure, but the improvement in quality of life is a very big deal to most of us.

MS Society wants to see catastrophic drug program

While not saying anything against the New Brunswick government's decision to support CCSVI treatment, the president of the Atlantic division of the MS Society of Canada would have preferred to see funding of several new and expensive MS drugs first: http://telegraphjournal.canadaeast.com/rss/article/1325147.

Patient praises MS treatment despite Mostic death

Here is a very good interview with Dion Oxford, who was treated in Costa Rica at the same time as Mahir Mostik: CBC Video

Government promises $500,000 to help MSers

The new Tory government is following up on its election promise... the following was in today's Throne Speech:

Your government recognizes the financial burden placed on New Brunswickers suffering from multiple-sclerosis. Work will begin toward creating a $500,000 fund to assist patients seeking treatments.

Kudos to all those who worked to bring this issue to the attention of political candidates.  Now let's monitor how they actually implement the program.

And here Premier Alward tells why the NB government will go ahead with this despite the death of Mahir Mostik due to complications from CCSVI treatment: CBC Story

Cost of Follow-up in Barrie

A message from a friend today reminded me of something that I've known for over a month but never posted: as of October 15th, Barrie Vascular Imaging has been charging $250 for a Doppler ultrasound follow-up of CCSVI treatment.  It's only reasonable that they would charge for it since they are not being reimbursed by Medicare.

Globe and Mail columnist makes no effort to use facts

Andre Picard, a columnist for the Globe and Mail, used his column space (run next to an article on Mahir Mostic's death) to lambaste the whole idea of CCSVI treatment and basically call it a hoax (without quite using the word): see anti-CCSVI column.  While there can be arguments made for caution based on facts, Mr. Picard doesn't bother using such crude instruments, preferring to build his argument on erroneous information and a laughingly incomplete knowledge of CCSVI and the "liberation" treatment.

Does the Globe and Mail actually pay people to write such claptrap?  Luckily there are G&M readers who are a lot smarter and better informed than Mr. Picard and who have commented on the article to correct the biggest errors.  Sure makes you wish there really was a quality national newspaper, though.

Entire journal issue devoted to link between CCSVI and MS

Interesting reading: http://vaware.org/images/stories/pdfs/vaware_v2i3_lowres.pdf.

LOW risk does not mean NO risk...

Poor Mahir: CBC story - Ontario man dies.  That's sad, but what makes me angry is that "they had trouble getting a specialist to see him in Canada - 'They didn't want to touch him because he was done outside of Canada.'"

One year after: An Overview by Dr. Brandes

A must read for anyone who wants a concise but comprehensive chronological summary of developments with respect to CCSVI in the (almost) one year since CTV aired its story on Dr. Zamboni's discovery: Dr. Brandes' blog.

Dancing again...

I did a little dancing, again, at a friend's book-launching party in Campbellton on Saturday night.  I wouldn't have won any awards (my left leg is still slow to respond to commands), but at least I did it!

Tips and Cautions

Here is a word of caution regarding getting local follow-up if you are going to be liberated internationally:

CTV story. What really ticks me off is that there would be medical "professionals" who would refuse to do follow-up on Canadians who have gone abroad for treatment.  I would like to hear stories about that because, for now, until we can convince the Canadian medical system to start offering MSers the possibility of opening clogged veins at home, we have to travel.  Any doctor who is refusing to provide follow-up on the grounds that they have been treated abroad is acting unethically and should be reported to the profession.  Of course, it's also unethical to refuse treatment for a venous condition just because the patient has MS, as well, but let's deal with each of these issues separately... there's already a proposed legal challenge regarding not allowing people to be treated just because they have MS.

My e-mail to MLA Dorothy Shephard

Here (slightly edited)  is what I sent her (and my own MLA):

Dear Ms. Shephard,

A friend of mine, Melissa Robertson, was at the meeting in Saint John where Tim Donovan spoke and where you requested information from those of us who had already been "liberated".  I'm sorry I couldn't make the meeting, but here is my story:

I was diagnosed with secondary progressive in MS on Friday the 13^th of February, 2004, just a little less than two years after I had my first major symptoms.  Since that time, my condition deteriorated steadily and significantly despite being on Betaseron injections that cost over $20,000 per year (paid for by my Blue Cross, luckily for me).  By the fall of 2009, my mobility was reduced to the point where I was using a cane most of the time, my fatigue was forcing me to have naps up to four times a day and a myriad of other smaller (and not so small) complaints had reduced my quality of life to the point where the future looked extremely depressing indeed.  It looked obvious that, at the speed things were beginning to progress, I would  be in a wheelchair within a year and would almost definitely have to retire or go on long-term disability quite soon.  We spent much of summer and fall of 2009 thinking we were experiencing many lasts: the last time I would be able to sail my sailboat, the last time my wife and I could go biking together, the last time I could help out with chores at our cottage and so on and so on.  In November I went to present a paper at a conference in Madrid and my wife took some holiday time to come with me and help me with my travel.  Even with her help, we realized that my condition was such that I would soon no longer be able to make such trips, which made us feel quite low since, though we had travelled to and/or lived in many parts of the world over the last 30 years, there were still a lot of places we wanted to see or to see again.

When we got back from Spain on the evening of November 21st, we had many phone messages and e-mails from family and friends telling us we HAD to watch the CTV W5 story on a possible new treatment for MS symptoms.  I was quite sceptical (since being diagnosed I'd heard of all kinds of supposed treatments for MS), but when I watched a re-run of the W5 show, I was intrigued: it seemed, on the surface, to make sense.  Then, as I dug deeper and deeper into the theory, its background and the initial evidence, I became excited.  By the end of the first week of December I was certain enough of the possibility that I might have CCSVI and that having it treated might alleviate some symptoms and perhaps even arrest the progress of my disease, that I wrote to Dr. Simka in Poland, the only place in the world where treatments were available.  Within a few days of that, I was scheduled for assessment and treatment in April in Poland.  Nevertheless, I continued to research the CCSVI theory and also looked at the possibility of being assessed in Canada before my appointment (with no success, because there were no sites that I trusted knew what they were doing).

Unlike the experience of many other Canadians, I found my family doctor open to the possibility of this new theory, and even my neurologist was, while reticent, open-minded.

I was assessed and treated in Katowice, Poland on April 28th and 29th.

Since then, my mobility has improved so that I only use a cane on longer walks (on the advice of my physiotherapist).  My fatigue symptoms have all but disappeared.  I have started to wear button shirts again.  I am slowly starting to gain strength in my left leg and arm again.  My neurologist and my physiotherapist have both noticed a significant improvement in my symptoms, the first time I have had any improvement since I was diagnosed.  My wife and I are no longer talking about "lasts", but rather about "next times".

I want CCSVI assessment and treatment to be available to all New Brunswickers with MS: it will likely relieve the suffering of countless MSers and their families.  It will significantly reduce health care costs.  It is the right thing to do.  Unfortunately, until our medical system is prepared to take on this task, MSers will have to travel outside of the province and outside the country for this procedure.  I am happy to hear that your government is considering supporting New Brunswickers who need to travel to have this done.  It is the right thing to do.

...Ted

P.S.: I should have mentioned that it doesn't look like I'll need to go on LTD, and my retirement can wait for a while.

Report and Lobbying the New Brunswick Government

Here is a (edited) report and request from Melissa, who was liberated in Poland:

I (along with other liberated people) was to a meeting on Saturday in St. John. The Saint John Lancaster Conservative MLA, Dorothy Shephard, was there and was speaking about the possibility of government funding for the treatment.  With only a few weeks into governing they are still sorting things out.  However, she said,  this treatment was very close to their hearts and they are behind it.   The liberated people were there telling our stories along with Tim Donovan who was the guest speaker.   Listening and asking questions were 277 people who had MS or were the loved ones of MS patient. 

Dorothy asked us liberated people and patients waiting for assessment and treatment to send her our stories. She said she would get them to the right people.  You may also want to send a copy to your own MLA of your riding.

So, if you are a New Brunswicker reading this and have something to share, please send your stories to your local MLA and to: Dorothy.Shephard@gnb.ca

My physiotherapist says...

I saw my physiotherapist today and she says that my walking and my strength both seem to be somewhat better than the last time she saw me, about a month ago.  Perhaps that's due to my more focused exercise regime but, in any case, it certainly feels good to see things getting better rather than worse, as they had been until I was "liberated".

Contact for CCSVI tracking project

If you are having trouble getting signed up for the tracking project, please send an e-mail to margreet who is at ccsvi-tracking.com and is managing the site (I'm not putting the @ in there so she doesn't get spam).

How many New Brunswickers have been liberated?

In response to a request, I started figuring out the number of NBers who have been liberated as of today, and so far I know about or have been provided with information about 17 of us:

1. Me from Fredericton (Katowice, Poland)
2. TM from Fredericton (Frankfurt, Germany)
3. BBL from Fredericton (Frankfurt, Germany)
4. LD from Restigouche county (Katowice, Poland)
5. TD from Fredericton Junction (Albany, NY)
6. MR from Moncton (Katowice, Poland)
7. MA from Moncton* (Katowice, Poland)
8. djh from Fredericton (Sofia, Bulgaria)
9. Robert from Moncton* (Katowice, Poland)
10. JL from Moncton* (Katowice, Poland)
11. AL from Moncton (Albany, NY)
12. DW from unknown (treated: unknown)
13. Ron from Moncton* (Sofia Bulgaria)
14. HA from Restigouche county (Katowice, Poland)
15. JR from Moncton (Katowice, Poland) 
16. PM from Miramichi (Katowice, Poland) 
17. BH from Dorchester (Cabo San Lucas, Mexico)

The * indicate that, for some of these people, I'm making assumptions about where they come from.  Please let me know if I you know of anyone who has been liberated but doesn't appear to be on the list, and also let me know if you can fill in any of the "unknowns" in the list so that I don't do any double-counting in the future.

Dr. Kirsty Duncan's comments and questions in Parliament

Although she has been assigned to be Veteran's Affairs critic, Dr. Duncan continues to be a strong advocate for CCSVI clinical trials in Canada:

1. Question to the Health Minister
2. 40:3 Hansard - 66 (2010/9/20)
3. 40:3 Hansard - 66 (2010/9/20)
4. 40:3 Hansard - 68 (2010/9/22)
5. 40:3 Hansard - 68 (2010/9/22) 

It makes for interesting and valuable reading, especially that question to the Health Minister at the top of the list.