Friday, 31 December 2010

Farewell, 2010

This has been one of the most emotionally challenging and personally satisfying years of my adult life.

Hm, that's not quite right, is it?

This has been the most personally satisfying year of my life.

Thanks to my friends and family for bringing so much love and laughter into my life. I couldn't ever ask for more than I have right now in this moment. I'm happy, healthy, and surrounded by fantastic, caring people. I am active again. I am joyful. 

2010's been great. Can't wait to see what tomorrow brings.

Happy New Year!

Monday, 20 December 2010

drumroll, please...

I had a doctor's appointment today. Just a routine check-up for a prescription refill. As a footnote to the visit, my doc mentioned that she had my MRI results. I hadn't heard back from my neuro's office, so I wasn't expecting MRI news and had an immediate flutterby in my throat. I'm funny about knowledge; I don't like being on the empty-handed side of it. I want to be the holder and as soon as I'm aware that it's there for the taking, I want it immediately. Those moments before obtaining information about my health (or anything large, for that matter) are excruciating for me.

But my tiny moment of panic was for naught!

My MRI, as reported by the radiologist, included no lesions (plaques, scleroses, exacerbations, flares, whatever you want to call them) on my spine. That means the ones that were there 4 years ago are…gone. (slightly teary-eyed, one moment)

[tiny intermission]

In other good news, I have no apparent signs of new lesions on my brain. That's not to say the old lesions aren't there, but hell yeah that they haven't changed for the worse or made new friends up there!

Also, more yayness - no signs of lesions in other areas such as the brainstem or thoracic spine - where very symptomatic lesions can often be found.

So, that means, assuming the radiologist's interpretation is accurate and the resolution of the MRI is enough to go on, I have no actively enhancing lesions. Everything seems to be +1.

Life is good.

Saturday, 4 December 2010

Get off the couch

I'm annoyed and this is a self-serving, petty post. There's your warning.

I like Facebook. I LOVE that I can interact with old friends and watch their children grow. It's a fun little realm. Increasingly, I am wondering if sites like this prevent real activism. Change my profile pic to join the fight against x cause. Change my status to join the fight against another. How does that help? It's inaction. It's less than lip service. Really. I need someone to explain it to me.

If you want to help a cause, please do something. Anything. Slacktivism is a slap in the face to the people who work hard to make political and social change. Doctors, police officers, social workers, volunteers and real activists (the ones donating real time and effort into causes) - these people are the ones making change. Not my Facebook status on any given day.

Want to support a cause? Find a fundraising campaign. Donate your money, or more importantly, your time. Research. Become educated. Get other people involved.

If you want to use social networking tools to be a nano-activist, try supporting causes that truly benefit from increased public attention.

A jpg of a Power Ranger doesn't change a damn thing in terms of joining a fight against child abuse. Neither does me telling the world my bra colour support breast cancer.

Expend your effort. Get your hands dirty. Raise funds. Volunteer. Get off your couch or stop pretending you are helping.

Sure, I might come off like an asshole here, but I'm an asshole who raises funds and donates to causes I support. 

Wednesday, 1 December 2010

I sleep in on Sundays

In my last post, I mentioned thanking deities and that got me thinking…

I myself don't thank deities. Nor do I praise them.

I don't believe in God.

I don't believe in any gods.

I don't pray to a divinity for thanks, strength or forgiveness.

I don't often talk about being an atheist (in public anyway) because I don't want to sound judgmental of other people or what they choose to believe. But this is my blog, after all, so I figured I'd jump in.

It wasn't always this way. I was born into a family that (mostly) believes. Well, my mother believes. I'm not sure what my father thinks about God or gods, but if he's a believer, he's certainly not devout. This balance gave me perspective growing up. On one side, I had my maternal family. Many of them churchgoers. Good, happy people. On the other side, I had my dad who would stay home on Easter Sunday and cook the turkey and prepare the vegetables while my mom bundled me and my brother off to Mass. Dad didn't seem any worse for wear for not kneeling on Sundays. Hmmm....

The first time I remember hearing the word "atheist" was on a family vacation, and I knew from my mother's tone that such a person was in the wrong. Not on the "good guys" team. Did not wear the white cowboy hat.

I went to Catholic school. I had religious calendars in my bedroom (me, P!nk, and the Virgin Mary have the same birthday!) and I said my prayers at night. I had (and still have) two pocket Bibles. I remember being in grade 7 or so and praying to God that He give me the divine inspiration to pass a math test. So, clearly, at some point, I was a believer. In full disclosure, I still find the Bible to be a fascinating book and I have read it cover to cover several times. I don't claim to understand the bears who maul children or the talking donkey, but I don't really think about them all that much.

As I got older I just stopped believing. I didn't stop believing in the goodness in the world, I just put my faith in fact. I developed my own opinions and observations. I won't get into why I'm an atheist here, but often happily take up the conversation when asked. Suffice it to say that it's not because of any single event or person. I didn't one day wake with MS and shake my fist at the sky asking why God had forsaken me. In fact, I was an atheist long before I had MS. I simply believe in biology, chemistry, and physics. I believe in nature and the sciences that uphold it.

If I had to compare my state of mind as a believer in my youth and my state of mind about religion now, I can firmly say that I'm happier now. I know that I do good things because I want to do good things, not for fear of damnation or heavenly rewards.

People have asked me why I still celebrate religious holidays, and that's fair. Christmas is right around the bend and I will definitely be feasting on Christmas day. For me, Christmas has lost religious meaning, and, to me, that's not a bad thing. It's a time for love, acceptance, happiness and warmth. That's all anyone really needs, isn't it?

I am still awed by the structure of churches in the same way that I am awed by natural caves on the shoreline. I choose not to pray in either.

a contented atheist

P.S. My injections since my last post have gone swimmingly well. No hours of frustration, just point and shoot. Life's funny that way.

Friday, 12 November 2010

Stronger than plastic

I sat for my injection tonight around 10:30.

I'm on Avonex pre-filled syringes. One a week in a quad. Alternating legs weekly.

I'm developing a strong fear of injections. At 1:15 I managed to push the #$&*ing button. I took a break in there to drink a glass of wine, but it didn't help manage my stress. Music, breathing, nothing helped.

Some nights a tiny piece of plastic and a few metal springs feel so much bigger than me. Thank whatever deity you like that this is a rare occurrence and most Fridays I feel stronger than plastic.

Monday, 8 November 2010



I got up at 5:20 this morning. Got myself ready for the MRI. Took a sedative. Registered at the hospital. Had a nice tech allow me to bring someone in with me (she saw the panic on my face, I'm sure, when she suggested they don't normally let people in).

Sat in the belly of the beast for around 28 minutes before having to come out again and reposition. Spine first, then brain.

Not having music was not fun, but having someone there to grab my toes was great. Nance is my rock.

This time the sedative actually worked. I wasn't as panicky as I have been other times. I guess the fact that I'm 45 lbs lighter than the last time I was shoved into the cigar tube also helps. And I'm in a better frame of mind. Overall much happier in life. So, from start to finish, the scan wasn't so bad. It even seemed shorter than it was. No one told me not to swallow (if you tell me I can't swallow I panic and swallow). No one told me not to breathe deeply. It all worked out well. I fought back some panic, but it wasn't too hard to overcome this time.

So there. Done.

...oh, and the 7 hour nap afterwards was also good.

Sunday, 7 November 2010

Home for a rest

Home again, home again.

My MRI is tomorrow morning. To say that I'm a little nervous is laughable. I'm a lot nervous. I have a tiny prescription of lorazepam to calm me during the scan, but it didn't work well last time (I got drowsy after the scan), so I'm not pinning all of my hopes on it.

Nance is coming with me to the hospital. I've relied on music to get me through other scans, but this hospital doesn't offer piped in music. Bummer. At least I'll have comfort in a friendly hand on my feet.

Logically, I realize how silly MRI claustrophobia is. When I think about it, I'll just be flaked out on a table in an open tube. I can get out on either end. I'm not locked in. The scan is beneficial. Nothing will hurt me. But none of that quells the fear that rises in my chest as the wee table is rolled into the machine. Small spaces are small spaces. They all feel like coffins to me.

On a much more positive note, I had a great trip home. It was really fun to surprise the folks (even the ones with no big reactions) and made my heart happy to see my dad enjoying himself so much on Halloween. I take after him in that way - I love Halloween. The creepier, the better. None of these fluffy, friendly-faced decorations, please. He and my step-mom have more Halloween decorations than some small stores, so he and I ended up sitting on a spooky front step amidst artificial fog and assorted ghouls and skeletons, waiting to scare the daylights out of kids. [Note: no children were harmed in the making of this evening]. It was also fun to surprise mom by knocking on her door trick-or-treating and to surprise N's mom by pretending to be a dummy in her haunted house basement (N's dad pretended he had set us up while she was out shopping). Bonus vacation points for getting to meet my new furry brother, Sam.

It felt like a really quick trip and I didn't get a chance to do a few things I'd have liked to (didn't get to hike at all, see a few people I planned on visiting, or get shopping with mom), but overall I'm so glad I went.

At least I'm going into tomorrow's MRI with tons of fun recent memories to mull over.

Friday, 15 October 2010


I get the logic behind having MRIs, but I don't have to like them! :)

Thursday, 14 October 2010

Time to visit the cactus

I have my annual neurologist appointment tomorrow.

Once I touch my nose with my eyes closed, walk a straight line, and do some reflex testing (almost kicked him where the sun doesn't shine one - geez don't stand in front of me and whack my knee!), I plan on asking him what his thoughts are on CCSVI. I've always liked my neuro, so I'm a bit nervous that he'll shut me down. I'm not looking for someone to say "yes, I believe this is 100% useful and will completely prevent further damage to your nervous system." I just want to know that he's listening closely to the ongoing conversation on the topic. I know that he has sent patients for MRV testing in the past, so we'll see how it goes.

I'm strangely comforted that this man keeps a variety of cactus plants in his office. I like that there aren't frilly plants or pastel paintings meant to put me at ease. I like directness. My neuro is direct. He's a cactus.

Semi-related, is it crazy that my biggest fear is he'll suggest another MRI? Yep, brain and spine could have more damage, but that damn box kills me. I watched the rescue of the Chilean miners with one eye closed whenever they showed shots of the men underground. I don't like elevators or tunnels. MRI machines are not my friends.

As my appointment approaches, I always take time to reflect on the past year. I spent a few months this winter with electric legs whenever I worked out and looked down. I've started feeling the dreaded fatigue now and then (not often, touch wood). But, all in all, I've been very fortunate so far. Sure, MS sucks. I have frustrated moments and can't help but worry over my future, but my body's path is not set in stone and I do what I can to take care of it.

I'm a technology nerd, a lover of the great outdoors, an amateur photographer with bad horizon lines, and a writer of bad poetry...but, that's it.

I'll keep on top of all areas of research, not just CCSVI, but I will never take on the role of an MS patient.

Thursday, 30 September 2010

On second thought...

Rather than do all of the leg work behind the conflicts of interest at play in politics (I am, after all, mid-30s...and that could take forever), I figured I'd focus on the positive.

So, the good:

1. New conservative provincial leadership in the works. Okay, it's not hard to tell that I am a die-hard left-leaner with socialist tendencies, but in this case our Tory premier-elect has said he will push the provincial government to create a $500,000 fund to help those seeking CCSVI treatment. In the long run, that may not seem like much, but it's more than any other province has promised so far. So, as scary as it may be for me, I welcome our new alien overlords.

2. The MS Society, despite being morons throughout some of this, is setting aside $1,000,000 for a clinical trial of CSVI treatment.

3. I have fantastic people in my life. Truly. Interested and informed and always willing to tell me when I talk about this stuff too much. :) I am very fortunate.

All in all, good news.

P.S. The CCSVI Alliance website has great information for the uninformed.
P.P.S. The CCSVI in Multiple Sclerosis group on Facebook has done great research into the path I was headed down - the conflicts of interest behind the CIHR decision.

Monday, 13 September 2010

Conflict of interest, come on down!

Canadians with MS want choices. The Canadian Institutes of Health Research, by not funding studies into CCSVI, has effectively offered none. Zip. Zero.

It's no shock to anyone that many of the doctors on the CIHR's panel of experts found themselves smack dab in the middle of conflicts of interest that they chose to ignore. Let's see some highlights, shall we? Don't worry, no slander here - this is all public knowledge and sourced.

Now, the first doc on the list isn't on the panel of experts, but it would be a vast oversight to skip him.

Introducing Dr. Alain Beaudet, President of Canadian Institutes of Health Research. Dr. Beaudet served as CEO of Fonds de La Recherche en Santé du Québec (FRSQ) from 2004-2008 [1]. FRSQ is a research funding agency whose largest parter is Pfizer [2]. Beaudeat appointed the vice-president of Pfizer Canada to the CIHR's governing council. Okay, call me crazy, but isn't that just...bizarre? Interestingly, there's a nice little snippet in an article called "Governance of conflicts of interest in postmarking surveillance research and the Canadian Drug Safety and Effectiveness Network" [3] on this point:

The appointment of Dr. Bernard Prigent, vice-president of Pfizer Canada, to CIHR’s governing Council—the first pharmaceutical representative to be so appointed (25–29 article's citations, ignore)—and statements by CIHR president Dr. Alain Beaudet in the context of this appointment, emphasizing the need to intensify collaboration and even to align CIHR’s “agenda” and “vision” with the pharmaceutical industry,(30) do raise the question whether CIHR remains sufficiently independent from industry to operate the DSEN.
[I started bolding the important parts there, but it became illegible]

Let's connect a few dots here. This report suggests that CIHR may not be sufficiently independent from the pharmaceutical industry to operate the national Drug Safety and Effectiveness Network. So, whose interests are being served by a board so closely linked with one of the largest drug companies in the world? Is there a shot in hell of Canada even looking at an alternative to drugs? Profitability for treating this disease remains sky high while profitability for stopping it is not.

Dr. Prigent, the Pfizer man who was appointed to CIHR's governing council…well, it turns out he's a registered lobbyist for Pfizer [4]. His position is to sway CIHR and other research spending programs. So, now he can lobby himself! Brilliant. [see also, 5]

Who's up next?
Maybe Dr. V. Wee Yong. Ooookay. Shotgun. Barrel o'fish. Coming soon...

Tuesday, 31 August 2010

Oh, ffs.

Of course.

An expert group has recommended that our nation not fund clinical trials for CCSVI treatment.

We are the "wait and see" country, after all...why would I expect anything else? Rather than put our own studies into place, we'll just sit back and analyze everyone else's studies. Makes sense, right? Clearly, if we consider those studies suspect, the best thing to do is sit on our asses and inspect them rather than perform our own. That's my general policy too. I suspect my supper hasn't been made to my liking. I'm not sure how it will taste and I didn't see it being made. So, I'll sit, starve and poke it with my fork rather than go make myself an effing sandwich.

All of this despite Canadians clearly indicating in an Angus Reid opinion poll* (Dec 7 & Dec 10, 2009) involving a random survey of adult Canadians, that they...that we want more money spent on medical research.

Here's the gist on trial rejection from the CBC:

Experts urge rejection of MS therapy trial

Canada should not fund a clinical trial of the so-called liberation therapy for multiple sclerosis, an expert group has recommended.

The Canadian Institutes of Health Research and the MS Society of Canada said Tuesday in Ottawa that their group of international experts met last week to discuss the latest findings on the theory proposed by Italian doctor Paolo Zamboni.

The working group unanimously recommended against supporting a clinical trial in Canada at this type, CIHR President Dr. Alain Beaudet said.

Beaudet informed Health Minister Leona Aglukkaq about the group's recommendations. She plans to address reporters on Wednesday.

Chronic cerebrospinal venous insufficiency, or CCSVI, is a chronic problem in which blood from the brain has difficulty returning to the heart.
Zamboni believes multiple sclerosis is caused by a narrowing or "stenosis" in the veins that drain the brain that can be corrected by using balloons to open up veins.

Some Canadians have gone overseas to seek the experimental treatment.

Full article here:

* Canadians want more money spent on medical research

Wednesday, 18 August 2010

If this is placebo...

I'll take two.

30-year old Calgary woman with MS goes from walking with a cane to training for a 10km race after having CCSVI treatment in Germany.

Friday, 30 July 2010

Hello to the Prairies!

Okay, I'll admit it: before this week I knew very little about Canada's fair province of Saskatchewan. I heard a few Moose Jaw tales an old boyfriend would tell me over the phone when he was living there. I can tell you what sport the Roughriders play, name the capital and three or four of the larger cities, tell you that the license plates read, "Land of Living Skies," but my actual Saskatchewan knowledge is...well, let's face it - non-existent. I'm an island girl, what can I say?

But, lo' and behold, Saskatchewan's premier, Brad Wall, has been changing my take. I'm seeing Saskatchewan in a whole new light! Premier Wall announced this week that his province will fund Canada's first clinical trials of CCSVI therapy and is urging fellow premiers to follow suit.

Now if only we could get the federal government to take some action rather than sit at endless roundtable discussions. Where are you, Health Minister Aglukkaq?

Tuesday, 13 July 2010

Great deal for a low, low, price!

It's happening already.

As predicted, punching "CCSVI" into major search engines now turns up ads for "Liberation packages" that promise no wait and all-inclusive fees. This is one of the things that worries me the most about all of this news and research - the woodwork organizations - whether or not people seeking real relief will be able to wade through false claims and to-good-to-be-true deals. Who can tell what's legitimate?

I question my own "wait and see" approach sometimes, but I'm sure as hell not ready to travel all the way across this blue marble to have surgery in a place where I don't speak the language. I applaud the people willing to take those leaps for a shot at bettering their lives, but I'm not about to plan an operation around Google Adsense.

On a distantly related note, try out the search engine! It's made by a fellow redditor and gives pretty good (untracked!) results.

Tuesday, 29 June 2010

Uphill battles

This one's a little more personal...

I went for a hike last weekend. 8km on a nice, sunny Sunday. It was a day of mixed emotion.

I'm only now, in my thirties, really finding a love for being an active person. At the same time, I'm only now being faced with the realities of having MS.
I love being outdoors. I can't begin to capture the feeling in words, but I'm happiest on trails and beaches. Content. If I have to stop to shake sand out of my shoes or pluck a leaf from my hair, it's a good day.

Sunday was a day of butterflies, dragonflies, and woodpeckers. Dappled sunlight falling between the leaves. I was excited to spend the afternoon outside, challenging myself. Content to be with someone who knows when I want to be left alone with my thoughts and when I need a goofy distraction from my steady stream of internal dialogue.

The first kilometre of the hike was fairly steep. My lungs were burning early on. I don't mind that. Actually, I welcome it. I love being in decent enough shape to know I’ll survive a few hours of burning lungs and challenged quads. After that steep climb, the hike evened out into on a fairly comfortable uphill walk for a while. It was a hot day. Well, hot for me. My internal heating and cooling systems have some wiring issues at times - a problem for many people with MS - so it often feels like a hot day to me if it's over 20 degrees.

After about a kilometre on the easier section of the hike, I started feeling tanked. Out of fuel. Done. My lungs were fine. My legs were fine. But I suddenly felt like I was underwater. Each step took more and more effort. The exhaustion associated with MS is hard to describe. I didn't feel it for my first few years with MS and, to be honest, I wondered if it was real or a pseudo-symptom. I brushed it off as something that other people complained about, but thought surely it couldn't be that bad. Fatigue is difficult to understand if you're not experiencing it. You're not really tired. You're not sleepy. Your legs don't feel weak; they just don't want to work. Nothing does.

There I was, in my perfect scenario - with the birds singing and the sun shining - starting to realize that this damn disease was having an effect on my activity level. It hit me like a ton of bricks. I've walked two half-marathons, but this simple hike felt like I had been walking for days. I'm not exaggerating when I say it felt like I was underwater. My legs felt like they had drag. I stopped often. The trail ahead of me looked like it stretched on forever, especially when it became steep again. I felt defeated.

You have to understand, it's not like I don't have heat-related issues - from the very beginning, I've had Uhthoff's phenomenon - a temporary worsening of vision with exercise (in people with MS who have any level of optic neuritis), linked to increased heat production. I first noticed it when lifting weights four years ago. The carpet appeared to lose its texture in part of my vision. It usually only lasts 8-10 seconds. I also periodically experience Lhermitte's sign, an electrical sensation that runs down the back and legs when bending the neck forwards. These are things that come and go for me. Part of life. Familiar annoyances. If I work out, I know my vision will get screwy if I overheat. Fatigue, however, is a new and difficult beast for me to tackle.

I felt like my mind and my body - my legs, heart, and lungs - were into the hike and enjoying the day. Something else inside of me was not on board though. I tried counting the steps I took to distract me from the rushing worries. I put my head down and only looked at the few feet of ground ahead of me. Nothing helped. I couldn't get my body to cooperate and got lost in a storm of concerns.

I drank some water and that helped a bit. Cleared the fog from my brain temporarily. But as soon as I started going again, it returned. Finally, I stopped trying to fight the emotion and flood of doubts and let myself cry. Not just cry - sob.

Every now and then I need to stop trying to hold onto this strong “MS is just a small facet of my life” persona and feel the bigness of having a body that betrays me sometimes. So, I did. I stopped, faced downhill so I’d stop seeing the vastness of the trail ahead of me, and I let the emotion wash over me. I had my two minute “pity party,” and then turned back to face the trail and started walking again.

I'm determined. For some reason, people think that my quietness means I’m timid, but I have a stubborn streak 3 miles wide. Thanks, mom and dad! So, I kept going. After we stopped for a bit to find a geocache (that we didn't locate, dammit), my fatigue released its grip. I could feel it happening. There was a great cool breeze blowing. The day felt bright again. My body felt like my own and responded as it should have for the rest of the hike. I even ran a little on the way down.

These realities are bitter for me. For everyone learning to live with MS, I imagine. And it’s a constant learning process. New obstacles to work around. New doubts to process. I still feel safe when walking, running, or hiking. I feel like I am 100% responsible for my actions and can do all of these things without fear of hurting myself or putting others at risk, but the fatigue is an uncomfortable reminder that I may not always feel this way.

Happily, life's not one big uphill war. I just encounter little battles now and then.

Friday, 25 June 2010


The video is worth a watch, regardless of whether you believe the CCSVI "Liberation procedure" works or not.

Even if you don't read the text (hard to read white text against the video in the background), just watch these people.
Warning: may cause eye leakage.

Monday, 14 June 2010


There's a "Take Note" debate this evening (8:15 AST) in the House of Commons on CCSVI in MS. It's available on CPAC.

Can't wait to see what comes of it.

Even when I look at the html for this post, I can't figure out the screwy spacing. Oh well.

Thursday, 10 June 2010

Things are looking up Down Under

Again with the CCSVI...

Encouraging news out of Australia

From the New South Wales Department of Health website:

On 20 May, a revised position in relation to CCSVI was advised by Bill Younger, CEO of MS Australia - it includes the observation that MS Australia ACT/NSW/VIC intends to work with leading expert neurologists, vascular surgeons, radiologists, other medical professionals, MS Research Australia and the CCSVI community group to find out more and communicate findings about CCSVI. While it does not recommend that people living with MS seek CCSVI treatment outside controlled tests it acknowledges that this is a matter to be discussed on an individual basis between the pwMS and their specialist healthcare professional - read more. In this regard a growing number of pwMS in Australia are being tested and treated, many with encouraging results.
Nice to see a government body get on board.

Wednesday, 2 June 2010

Take it to the Hill!

Another CCSVI post...

"A group of patients with multiple sclerosis gathered on Parliament Hill Tuesday [June 1st, 2010] to testify how a controversial new treatment has changed their lives, as two Liberal MPs reiterated their call for more research."

In terms of CCSVI, these people are the ones to watch in Canada right now - the two Liberal MPs (Dr. Carolyn Bennett and Dr. Kirsty Duncan) and Dr. Sandy MacDonald (mentioned in an earlier post about CCSVI). Canadians are traveling to Poland, Kuwait, India, and other countries to seek out a treatment that isn't uncommon or any more dangerous than other surgeries. Some of these people are using every cent they have for a procedure they could be having here at home. Dr. MacDonald, a cardiovascular surgeon has been using his own funds to research CCSVI and receive training on Dr. Zamboni's diagnosis protocol. Here's hoping the rest of Canada - a country known for having one of the highest prevalence rates of multiple sclerosis in the world - follows suit.

Following with great interest...

Sunday, 30 May 2010

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.


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.

Wednesday, 26 May 2010

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.

Friday, 21 May 2010

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.

Sunday, 16 May 2010


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.

Wednesday, 12 May 2010

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."

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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 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's all about how far out into the frontier health professionals will let us travel.

Tuesday, 11 May 2010


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.