Not in Canada, eh?

Another Macleans article by Anne Kingston, which delves deeper into the unusual practice of denying assessment and treatment of people because they have MS: http://www2.macleans.ca/2010/05/31/not-available-in-canada/.  What bloody unethical behaviour by official organs of the medical community!  I've been treated for CCSVI, but this injustice makes my blood boil.  Grrrrrrrrrrr....... Sue the jerks!

Thanks, Shelley, for putting me onto the article.

Local Lady Going to Frankfurt

I had a call this afternoon from a local woman who had talked to me about CCSVI before I went to Poland.  She informed me that she had a place in Frankfurt with Dr. Seibert (spelling is probably wrong - perhaps associated with the Vogl clinic that I have heard about), where they do assessments using the various appropriate protocols for MRV and Doppler, then ballooning (no stents, apparently)... she'll be leaving on Thursday!  More and more opportunities for folks who are willing to travel for the treatment... too bad there aren't opportunities in Canada, yet.

And, later, this correction regarding the German CCSVI treatment (thanks, B,):

Just for clarification and correction, I have been informed Dr. Horst Siebert does do stents if there is restenosis of the angioplasty during the procedure. He is affiliated with Centrum Frankfurt Sankt Katharinen and the testing and imaging clinic Prof. Dr. Stehling Institut für
BILDGEBENDE DIAGNOSTIK in Frankfurt. - B

The Market

This morning I did all the shopping at the market... myself... and without a cane, the first time I've been willing to take that chance since sometime last summer, I think.  This afternoon I vacuumed the apartment and now am tired and my arms feel like they're filled with lead.  Continuing, small repetitive motions still seem to tire me out extraordinarily quickly... guess I'll have to leave the apartment cleaning to my wife a while longer!  ;-)

Superman (lite)

Things went really well today.  Most pronounced was the greater strength and control I had in my left side when I did my weights today... and my better gait on the way to the gym.  Small victories for most people, but big ones for MSers like me!

Liberation Walk on the Camino de Santiago in 2011?

One of my fellow liberation "graduates" of April 29 is asking about the interest in organizing a 500 km walk for liberated (or, as yet, unliberated) people, their families and friends on the Camino de Santiago from Biarritz, France to the cathedral at Santiago de Compostela. Of course, MSers could walk as little or as much as they are able and not many would have the time to be there for the entire trip, but the idea would be to have at least one liberated person walk for every part of the entire distance.  The goal would be to raise the profile of CCSVI in countries the participants come from, perhaps raise funds for people who can't afford liberation... and celebrate our own liberations!  People wouldn't even have to participate all at the same time: different groups could organize themselves to walk all or some part of the "pilgrimage" and just "register" with the organizing group so that the total number of walkers can be reported to the world.  Certainly if a large number of people wanted to do this, you wouldn't want them all in one group, since that would make it too large and logistically complex.

It's an intriguing proposal, one that appeals to me and my wife since we were thinking of doing it before we'd even heard of CCSVI.  At that time the idea was that she would do the walking and I would drive to meet her every evening - but maybe now I'll be able to walk part of it and do it (or the driving) in the company of fellow MSers!

I lived in Santiago de Compostela on a sabbatical before my MS hit: it's a gorgeous and interesting part of the world. Anyone else up for it?

Wow, four weeks since liberation!

So I'm four weeks down the road.  Time to take stock of the changes and improvements I've seen so far:

1. My energy is way up.  It's still far from normal, but it's much better than it was before the procedure.  If I push myself as I did yesterday unloading the car after our trip to the cottage, I can end up feeling pretty weak and some of the effects (bouts of tiredness, arms feeling like concrete) can come and go for a few hours after that.  But if I don't push myself, I won't know how much I can do.
2. My mobility is better.  In the mornings and when I haven't been walking much, I only have a small limp.  I start limping more after only a short distance, but it's still noticeably better than before.
3. My balance seems better when I'm not tired.  I hope to have objective measures of this after I see the physiotherapist next week
4. The numbness, stiffness and clumsiness in my hands seems to be getting a little better every day.  If I get real tired (physically), the symptoms seem to come back with a vengeance.

Passport Medical Contemplates Partnering with AMEDS Clinic

Here is a link passed on to me by a fellow MSer concerning a possible partnership between a Canadian medical tourism company and the new AMEDS CCSVI clinic in Warsaw: http://passportmedical.com/2010/04/ccsvi-liberation-passport-medical-travels-to-poland/.  Note that neither I nor my friend can vouch for the tourism company, nor have I heard from independent sources regarding the competency of the AMEDS people, but I thought that MSers looking at options may wish to investigate this one.  If anyone can provide me with good information concerning either organization, I would very much appreciate it.

PS: Looking at TiMS this evening, I see that at least one person who was on the Passport Medical waiting list took him/herself off because it was cheaper to deal directly with AMEDS.  However there may be other reasons (insurance, convenience) why some may prefer to deal with a company that specializes in medical tourism.

At the Cottage

It's been a gorgeous weekend at the cottage: sunny and around 30.  The sun is shining off the bay and the fresh breeze makes me think that maybe I'll get my sailboat out on our next trip out here... and last summer it looked like that would be my last summer of sailing... it's great to be alive!  I'm glad that I'm not much affected by heat anymore.  And no, that's not because of "liberation", it's just something that improved in my second year after being diagnosed, about the same time that my weakness and footdrop shifted from the right side of my body to my left.  The increased energy, though, could be due to the treatment.  I worked on the steps to the beach, mowed the lawn and did some other chores.  Though far from feeling "normal", I didn't get tired just thinking about doing those things.  Our friends and neighbours here seem to agree with my wife that I look better - better colour and "brighter".

Changes

Today I went to a meeting, then did some shopping and ran some errands.  I didn't bring my cane.  I didn't have to work up the strength and nerve to just do one of those things... I just did them all.  Yes, I still limped.  Yes, my arms and hands were stiffer by the time I was done all that (maybe I did a bit too much in one go), but... I DID it! 

A Mixed Day

Today was a mixed day.  Did the shirt buttoning thing again, didn't use my cane again, but in the afternoon my arms and hands were very stiff, and it's still like that.  But in my workout this evening, even though they were stiff, my arms and hands were stronger than they've been in a long time... strange.