Fundraising total

A quick update...

My fundraising total was $1,240!

Thanks to all who donated online, in person, and through my mom. And thanks for badgering people on my behalf, mom.

xo

WALK DAY!

I couldn't have asked for a better day for the MS Walk - the sun showed up, the course was in a quiet neighbourhood, and I had three fun walking buddies...all in all a great time.

I've been doing this for a few years now and I have to admit to being a bit baffled by the disorganized nature of the event here in this city. We didn't even know the walk had begun until we noticed people ambling out of the general gathering area. I don't need a gunshot to get me moving, but a bullhorn countdown would have been helpful!

Anyway, it was a good walk. A little emotional, as they always are for me, but good regardless.

Many sincere thanks to those who supported by pledging me, or by just offering kind words.

xo

Marathon update

Had a great time at the Blue Nose. A HUGE thanks to my partner in crime for gracing me with her wit and wisdom along the way.

So...I've now done a marathon, right? I just took 6 months off in the middle. :)

I felt great after the race. So happy to see the regular walking paying off.

On the MS side of things...

If I ever reach a point where I need a drop foot splint or a walker or even a wheelchair to do this stuff, you guys better cheer me on. This is what makes me happy - being an active, healthy person. Being outdoors. Mind you, huffing up cardiac hill in Point Pleasant Park in a wheelchair might not be so fun, but think of the upper body strength I'd have!

There was a guy in the race with a "I have Parkinsons but it doesn't have me" tee on. I want that mentality. He beat us by at least 20 minutes.

Race weekend!

It's marathon weekend!

Okay, let's not get ahead of the game, I don't run marathons. This is my second time walking a half-marathon since being diagnosed with MS. I am so excited! I once read a CBC article that read, "Some people with MS experience little disability during their lifetime. But up to 60 per cent are no longer fully able to walk 20 years after onset..." 20 years after onset? That'd make me 50. I want to be able to fully walk at 50. I figured that was a massive clue to start doing what I could for myself. I'd like to be in the other 40%, thankyouverymuch.

Walking has helped me learn a lot about myself. My heat sensitivity has taught me to have patience. My growing stamina has taught me not to judge people when I hear they have particular diseases or disorders. I've seen pity in the eyes of completely healthy people as they ask me how I'm doing (and often they are the same people who choose not to leave the couch on a sunny day...yeah, I'm trying to find some balance in my judgment). I need to have a line for those moments. I usually tell them I'm well...things are good. Next week I'll just tell them I've completed my 2nd half-marathon.

I'm doing great. That's how I'm doing.

woohoo!

I hit the fundraising goal I had set for myself for this year's Walk for MS!

I'm at $1105 and counting!

I love the people in my life.

Thank you all.

What some of the docs are saying…

This is totally a CCSVI post. Skip if you're not following.

During the May 6th meeting of the Subcommittee on Neurological Disease of the Standing Committee on Health (quite a mouthful there!), Dr. Kirsty Duncan, a Canadian Liberal MP, questioned President and CEO of the MS Society of Canada on the thing that bothers me most in the talks on CCSVI - how is this vascular issue any different from others?:

*Transcript link below.

"I would like to know why we are treating MS differently. If there is a vein problem in the liver and in the hip region we image and we treat it. I want to know why MS patients are being denied this treatment. I will also recognize that there has been controversy here that there was a death related to a stent but I want to know why MS patients are being treated differently and I will ask Mr. Savoie, please."

Facebook login required:

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/transcript-from-may-6-canadian-subcommittee-on-neurological-disease-hearing/393940757210

So, why is it? Regardless of whether MS could be a result of damage due to venous stenosis (abnormal narrowing in the veins) or even a cause of stenosis, why not fix the circulation issue? Removing MS from the picture completely, would vascular specialists not recommend trying to repair any signs of venous stenosis? If I showed up at a clinic, with no mention of MS at all, and I had blocked jugular or azygous veins, would vascular surgeons not recommend repair? And...that's assuming I'd get to the point of being tested! Right now, people with MS are being turned away from testing (doppler ultrasounds) because of all of the controversy surrounding CCSVI treatment.

I know there was a very unfortunate death due to stent travel when attempting this under the umbrella of "CCSVI treatment" and I feel for the life of that person, but is the risk here any stronger than that of any other vascular surgery? Dr. Sclafani (chief of Radiology at King's County in Brooklyn) broaches the dangers of jugular venoplasty and valvuloplasty - the treatments in question - on thisisms.com in a Q and A.

"Q: My question for you is, now that we are beginning to see after-op problems from ballooning the valves. Should folks with pathologic valve problems wait for additional research in this area BEFORE undergoing angioplasty?

Answer: Another tough question, sort of the same question as "should anyone undergo angioplasty before additional research" I do not think that reflux up the jugular vein is really the pathophysiology of this entity. Dr. Zamboni suggests that it the obstruction that is the real problem. This leading to reversal of flow through small vessels not designed to take that kind of flow. I do not think the problem is pressure or reverse pressure. It is flow I worry that these valves are going to be a real bugger, incomplete treatments, and recurrent obstructions. One gets the sense that something will be ultimately needed to fix the abnormal valve against the wall and stop it from restricting blood flow. Perhaps stents are the answer, or some endovenous procedure that resects the valve, or some other technique beyond my imagination at the moment. Surgery on veins, I am told by my vascular surgical colleagues is not without failure. This is all so new. So my answer is rather philosophical. You are all pioneers and are looking for answers at the front of the wave. It it were neurosurgery, I might say, wait awhile. But jugular venoplasty and valvuloplasty is not particularly dangerous. So I think the decision is about how far out into the frontier you want to travel. Me? I would venture forth and look for a solution to some future recurrence or complication when I see it."

Yep, it's all about how far out into the frontier you want to travel...

Oh no, I mean...it's all about how far out into the frontier health professionals will let us travel.

CCSVI

This whole CCSVI thing has my head spinning some days.

(In case you don't know, CCSVI is Chronic cerebro-spinal venous insufficiency, a syndrome in which blood flow in thoracic and cervical veins, from the central nervous system to the heart, is jeopardized by a narrowing of the veins, making blood flow less efficient. The premise is that the insufficient blood flow promotes brain dysfunction...particularly lesions or plaques, known as multiple sclerosis. I don't necessarily buy it as causation, but I think there's a promising link there)

The pragmatic side of me says, "wait for the findings! Study the research!" but the…well, the me side of me says, "time is brain."

It's a saying largely used with people who have strokes - emphasizing that nervous tissue is rapidly lost as stroke progresses. The sooner someone who suffers a stroke has treatment, the more brain functioning can be salvaged. The same goes for MS. Time steals us.

So, do I sit and wait? Not try to get in on clinical trials? I hate the phrase "guinea pig," (neither from Guinea, nor swine) but the idea of experimental surgery feels like that - lab work….working research. I, like every person with MS, would love to halt the progression of this disease, but do I effectively want to be on Dr. Pennfield's table smelling burnt toast*? So much to think over.

I predict a tidal wave of false promises riding the coattails of this research - clinics run by people with questionable moral standards who are out to make a quick buck. New vitamin supplements targeting things that aren't yet defined. New diets. It's terrifying to me that many of those who have cognitive dysfunction due to MS face these decisions alone. Who am I kidding? It scares me that anyone faces any of it alone. I have a hard time comprehending detailed CCSVI information at the best of times and I have an okay grasp on human physiology. I can't imagine what this swamp will be like for anyone who doesn't.

So far I don't know what to think. I have many opinions, as I do about everything in life, but for now it's wait and see.

* For an explanation of Pennfield and burnt toast (you obviously aren't Canadian), go here.

Who owns these things?

I woke this morning with a stranger's feet in my bed.

Oddly enough, they were attached to my legs.

This is my life. I have MS. I wish I started blogging about this four years ago, but better late than never.

Stick around. Life's mostly fabulous.