Black Patent Shoes: Dancing with MS

I've just finished Eva Marsh's book "Black Patent Shoes: Dancing with MS" and enjoyed her great story and am intrigued by her approach to overcoming (not just coping with) her very serious MS symptoms: primarily in her use of physiotherapy and exercise.  While her approach may not work as well for all MSers, I really believe that MS sufferers and caregivers should read the book for the the information it gives about other ways to think about healing the central nervous systems and arresting the deterioration of physical capabilities.  You can order her book at: http://www.evamarsh.net/book.htm.

CCSVI Alliance's first educational event - A very informative video

CCSVI Alliance's first educational event, "MS and the CCSVI Connection: What do we know? What don't we know? Where do we go from here?," was held January 10, 2011 at Brandeis University, Waltham, MA, with Dr. Michael Dake, Stanford University School of Medicine.  The video is very informative: http://www.ccsvi.org/

ISNVD Meeting invite from Dr. Zamboni

Anybody interested in a trip to Italy in March to hear about the latest findings regarding CCSVI?  Here's an invitation from Dr. Zamboni: ISNVD announcement.  I sure hope some of our doctors, researchers and politicians will at least be paying attention.

Minister Aglukkaq invited to a meeting about CCSVI

My friend Shelley has asked me to pass on this request:

A friend of mine, Amy Preston, is posting her letter to Minister Aglukkaq on Facebook hoping that others will follow suit and be so inspired to send the Health Minister an email or phone her office to request that she attend the CCSVI meeting that Kirsty Duncan has invited her to attend on February 8th, 2011.

I think it would be a great idea if we can support Amy’s efforts and flood Minister Aglukkaq’s office with either email or telephone requests that she attend this very important meeting. Since she has admitted publicly that she knows not a single Canadian with MS, this would be a fantastic opportunity for her to gain some insight and education about the illness and the angioplasty treatment that is gaining more and more recognition.

The contact info for Minister Aglukkaq is Info@hc-sc.gc.ca or 613-957-2991.

Please pass this on to anyone who you think might be interested in supporting this effort. Thanks!

Amy’s letter:

Hello Minister Aglukkaq,

By now, you’ve received an email invitation from MP Kirsty Duncan, to a CCSVI meeting @Parliament Hill on Feb. 8, 2011. I hope that you plan to attend, as your absence will be very noticeable. Thes...e three doctors can help to explain to you what MS patients with CCSVI are so upset about. They are all experts in this field. You really owe it to us to attend, as lives hang in the balance.

Sincerely,

Amy Preston

Dr. McDonald operates one of three Ontario sites doing the proper Zamboni Doppler Ultrasounds. Here’s Dr. McDonald on Canada A.M.: http://watch.ctv.ca/news/latest/no-funding/#clip343029 He also performed 6 successful CCSVI angioplasty procedures before he was shut down (http://www.barrievascularimaging.com/)

Dr. Hubbard is from San Diego, and has started an IRB approved multi-center Registry that was set up to look at CCSVI. The goal of the Hubbard Foundation is to open up multiple centers to test for and treat CCSVI (http://hubbardfoundation.org/). Here’s Dr. Hubbard’s interview on Komo News.: http://www.komonews.com/home/video/106175483.html?tab=video

Dr Haacke is Canadian-born and is currently linked to Michigan State University and McMaster University. He’s one of the world’s most knowledgeable MRI specialists. He is now using his MRI/MRV expertise to design new testing for CCSVI. Here Dr. Haacke reports on the first 50 Hubbard IRB patients tested: http://www.ms-mri.com/presentations/wash-dc-oct-18-10-final-web.pdf

Shelley later added:

I think we should also consider emailing the Minister of Tourism, the Minister of Finance, House Leader and the Prime Minister so that it can be pointed out how much money is leaving Canada for Medical Tourism.  For those who took the drugs before being treated for CCSVI, it should also be pointed out how much money is being saved by the government by MSers now not using them since so many have stopped the drugs not just because of the angioplasty procedure, but also because of the growing amount of data that has been proving them to be ineffective and in some cases, downright lethal. 

Our health care system

An interesting (if not unbiased) discussion concerning Canada's health-care system (http://www2.macleans.ca/2011/01/25/our-health-care-delusion/)... be sure to read the discussion/commentary at the end of the article.  My own view: our health-care system is sick, but we should fix the overall system (especially the parts that are there to serve the system rather than the patients) instead of just throwing money at it and/or automatically privatizing everything.  Privatization of parts of the system might make lots of sense - but which parts, and for what purposes?  Join the discussion.

Close-minded Negativity by MS Doctors Is Not Scientific Skepticism

Another good article from Ashton Embry: Embry article.

Video Posted by Dianne Hepburn's Journey to Liberation

A nice little video about hope and triumph: http://www.facebook.com/video/video.php?v=455411725811

Neurologists and endovascular interventionalists talking?

They may not be agreeing on a lot, but at least they are talking: MedPage coverage of ISET meetings.

Always want more

OK, so my fatigue is greatly reduced, my mobility is somewhat better, my strength is better, my dexterity is a bit better... but I sure wish the "thermostat" for my feet would finally heal!  I've had several days of cold feet, then a day of hot feet, then back to cold. Oh well, I guess you "can't always get what you want...", but I suppose I would have to say I got what I need.

CCSVI Treatment Lessens Fatigue in MSers, Research Shows

This is not a surprise to those following the results of those who have been liberated, but it's still good to have it confirmed by research: Businesswire story.

Another small improvement

One of the tests that the physiotherapist did for me earlier this week was to test my grip strength.  She found that my grip strength in both hands had improved significantly since the last time I was tested.  Since the last time I was tested was in June, it's hard to say when the improvement actually occurred.

MS SOCIETY`S PRIORITIES ???

Here's a sobering perspective based upon publicly-available information that Chris Alkenbrack has dug up: see the Facebook report on MSSC expenses.

Reminder: CCSVI Tracking

Have you checked out www.ccsvi-tracking.com lately?  The results of almost 400 liberation treatments are now reported there, and it's possible to view monthly results for many kinds of categories of patient (gender, type of MS, age, etc.).  And if you've been treated for CCSVI but haven't entered your data yet, what's stopping you?  Given that governments are doing very little to follow up on the results of treatments, we have to do it ourselves.  Also, untreated MSers are depending on the information to make personal decisions... so they need to know results from everyone, not just those who've had big improvements.

Although we don't know if the self-reporting people are statistically skewed towards those who have had positive experiences (which is quite possible if not likely), it certainly appears that a high percentage of liberated people have seen improvements, especially with regards to quality of life, fatigue and mobility measures.

Enough circumstantial evidence?

While prosecutors would always like conclusive evidence, they are quite willing to go to trial if there is enough circumstantial evidence.  Given all the evidence we are seeing with respect to the relief of symptoms seen by people who have been "liberated", isn't it time for us to go to trial or, in this case, clinical trials?  Come on, medical professionals and governments, get your acts together and start doing your jobs!

Women affected by MS twice as much as men: A genetic reason?

Coincidentally (?), women are affected by chronic venous disease twice as often, as well: Facebook site reports on findings in studies.

Ukrainian Christmas

Although a good part of the work was done by my daughter and her boyfriend visiting from New Zealand and my son, I helped a lot with the cooking preparation (especially the perogies) for the big Ukrainian Christmas feast we had last night.  My hands are still not great for making perogies, but I did take the lead in making them, something else I didn't think I'd be able to do again until I was "liberated"

CIHR Decision Poorly Made

Spurred on by my last post, my friend Eric has reminded me of a previous commentary made by two doctors in Open Medicine, an on-line medical journal, about some of the mistakes made in the CIHR recommendations to the federal government concerning the CCSVI controversy: http://www.openmedicine.ca/article/view/443/366

Canada's MS patients are owed an explanation - Yes!

Thanks to Shelley for alerting me to this strongly-worded Op-Ed piece (written by two liberal MPs) that is in today`s Ottawa Citizen:

Canada's MS patients are owed an explanation

By Ujjal Dosanjh And Kirsty Duncan*

The government of Canada is failing multiple sclerosis patients on numerous fronts. In August, the Canadian Institutes of Health Research, in collaboration with the Multiple Sclerosis Society of Canada (MSSC), convened a "meeting of top researchers ... with a special emphasis on neurovascular issues including the recently proposed condition called CCSVI."

Sadly, it was an expert group with no experts in the imaging/treatment of chronic, cerebrospinal venous insufficiency (CCSVI). Leaders, such as Dr. Sandy McDonald -- the only Canadian to be trained by liberation treatment pioneer Dr. Paolo Zamboni, and to have performed the procedure here in Canada -- were not consulted. Moreover, there was no inclusion of international experts in CCSVI/liberation treatment, no data presented at international scientific conferences, and no site visits to labs and operating theatres, but rather just blind acceptance of a handful of studies, including two which had been accepted in an astounding six weeks. After the secret meeting, we were told, incredibly, that CCSVI/liberation experts were not included for fear of biasing the discussion; surely, disregarding experts is a dangerous precedent. Yet researchers, who had vehemently spoken out against the liberation procedure, were included in the group.

A new "scientific expert working group" has been appointed, but sadly suffers the same flaws as the initial group -- namely, no experts, no experience, and many undeclared conflicts of interests. The new group is to analyse interim and final results from seven Canadian and U.S. MS Societies -- funded studies, for which we already have answers.

Why is the government waiting for results when more than 3,500 procedures have been performed in more than 50 countries; when Bulgaria, Canada, Italy, Kuwait, Poland, and the United States report that 87 to 90 per cent of MS patients show one or more venous abnormalities in MRIs and ultrasounds, and 97 per cent when angiography is done?

Canadian MS patients deserve evidence-based medical practices. But how can this right be realized when their government refuses to collect any evidence? We have been calling for the collection of evidence since the spring, through clinical trials, and a registry.

It is more than unfortunate that Canadian patients, who have been travelling overseas since January 2010, have not had their results tracked, for example, at one month, three months, and six months after treatment. One Canadian neurologist, who had the liberation procedure, said to me, "if we had collected the evidence in a registry for the last many months, would we still be calling these anecdotal stories?"

Finally, like many MS patients, we are frustrated with the government, and want an investigation into how this file was handled so badly: how special interests co-opted science; how an organization that was supposed to steadfastly advocate for MS patients flip-flopped on its position; how process was used not to do science; how conflicts of interests went undeclared; how a pioneering surgeon had to risk his reputation; how MS patients were forced to fight the system; and how the minister repeatedly failed to advocate on behalf of suffering Canadians, particularly with regard to followup care -- especially when we began raising the issue in July with officials?

And ultimately, who was responsible for repeatedly failing to take leadership, and who must be held accountable for the abject abdication of responsibility?

*Ujjal Dosanjh is the health critic for the Official Opposition, member of Parliament for Vancouver South, and former premier of British Columbia. Dr. Kirsty Duncan is the member of Parliament for Etobicoke North.

Eva Marsh

I also received this e-mail today:

Dear Ted Robak

I read this article sharing your experience and quoting your comments with great interest.

My symptoms began 58 years ago the summer I was 8 years old, and were dismissed as just my imagination, but paralysis from the neck down in 1967 led to quick diagnosis and I was told to get my affairs in order, I didn't have long.

However, what I found in research then and in the years since, tells a different story and I have used this information to recover from all the damage of 11 bouts of paralysis, all described in my book, Black Patent Shoes Dancing With MS, copyright 1989.

I invite you to scan my website www.evamarsh.net with Zamboni commentary that I posted after spending the summer doing an in depth literature review. A huge body of research has been done and ignored for the past 100 years.

Happy New Year

Eva Marsh

On her website, Eva has also written some commentary concerning the CCSVI theory: http://www.evamarsh.net/LiberationProcedureCommentary.htm.  It looks as though I'm going to have to buy myself some Ukrainian Christmas presents: Eva's and Dr. Flanagan's books.  If any of my readers have already started researching either of these, perhaps you could provide me (and my other readers) with a book review from the point of view of a person with MS.

Upright Doctor

Here is an e-mail I received from a friend who I met when I was liberated in Katowice last April:

Hi Ted,

Hope you and your family had a great Christmas and New Year. Since our liberation in Katowice back in April 2010, I too have had improvements very similar to yourself and hope that the disease progress has been halted. The reason for this brief email is that I have been following your blog for many months now and find it very helpful to read your informative articles. The one that caught my immediate attention was the recent article on the connection between CCSVI and Upper Cervical care. There is a thread on TIMS which you are probably aware of but if not have a look at http://www.thisisms.com/ftopict-14005.html. I had  a serious motor cycle accident back in my wilder days and always believed this has led to my current situation but couldn't get any neurologist to take it seriously. Although the hospital fixed my broken limbs they never checked my neck for any damage. To be fair to them I didn't complain at the time of any issues with the upper cervical areas I was just glad to get my leg and arm fixed. After reading lots of stories on the web, there does seem to be a common thread with accidents and the onset of MS in quite a lot of people that have suffered a physical trauma. Dr. Flanagan's book is definitely a good read and has several chapters dedicated to MS and his theories do make a lot of sense. I am now on the next part of my MS journey to investigate this avenue more thoroughly. If you get any useful info on this subject please send it in my direction as well.

Have a great 2011 and I hope you keep the improvements already gained.

Best wishes to you and your wife,

Tony

So, more anecdotal evidence that trauma is somehow related to the onset of MS, and that Dr. Flanagan may be on to something in his book.