good find: Unbroken

Perhaps the secret of all secrets is that we are all broken, and trying to take our broken wings and learn to fly as the Beatles sang.

good find: The Brain Rules

We found this book about two weeks ago and it has been on my mind ever since. The brain is so powerful yet we can take it for granted. I want to discover the wonders and harness the gems. A great physio once told me "80% is attitude." Yes.we.can. It feels like part of the story behind the youtube "miracles" is fuelled by a positive attitude. There is a lot of negative hurled our way, in the medical world. Perhaps even despite good intentions. Obviously "hope" can only go so far but it is definitely part of the recipe.

The Backstory: A year in review

What a year it has been. Ironically, I went for an ultrasound to see if my veins are narrowed or blocked, a day after the one year anniversary of this story. I feel conflicted in so many ways.I am awash with memories of my own medical tourism escapades a few years ago. It would be called a "complication" by some. I almost died. Also ironically, it involved a device for my veins and blood thinners. I am haunted by that experience.

There are still more deaths on the drug side of the game.

The Link

The Brain in Your Gut, , just in case you need it.

good find: The Brain in Your Gut

good find: Dr. Hubbard Interview

Here is the considered interview I was seeking! From a neuro, no less.

Follow up

There are very few easy answers in life, and the MS scene is seeing that story play out. On one hand, we see some patients recovering in remarkable ways. On the other hand, cautionary tales abound and some patients are seeing issues at home with follow up.

It seems that in very few cases we have the chance to see a well-thought out, considered case. A meatier sound-bite. It seems the patients that have done well aren't shy to have their 15 minutes. The patients who have had a less media digestible experience are less forthcoming. The neuros -- Can we trust them? The crystal ball is murky at best.

good find: CCSVI VIDEOS

There's no shortage of coverage, both big media and Average Joe - pro and against....links below. You decide.

CTV
Every day Folk
More Good News From Us
CTV ATLANTIC

A River of Cold

Lately, I have been having this symptom that I call the river of cold. It feels like a trickle of ice cold water iflowing down my right arm, starting at my neck and going into my hand. I can't see a pattern in the whens of the rivers. It seems isolated to the right side. As scary as it can be, it is oddly poetic.

Un.believable

As soon as any MS-er utters the phrase "big pharma", a common response is to raise an eyebrow and write you off as a conspiracy theory crazy who just might also believe in UFOS and that Elvis still lives. Meanwhile, it doesn't take much sleuthing to uncover news like this, and this. It really makes you wonder.

Today's inspire

good find: Be Your Own Best Advocate

Here's today's good find. Words of wisdom for everyone.

Just in case...

If you can't see the Stroke of Insight video, try this. If you want more, listen to this episode.

good find: Stroke of Insight

A Case for Clear-Eyed Hope

Why do people sometimes act like hope is blind? Sometimes we must have faith despite the surface. Sometimes that is all we have. I feel like that is brave hope. Other times we research, we arm ourselves with knowledge. Even still there are no certainties. It is much like a lottery ticket. You can't win if you don't play. We choose to hope over the alternative.

Believing helps make it so.

Dashing Skepticism

Why is skepticism healthy and hope false?

Both are gambles.

The trouble with the supposed concern expressed in the Toronto Star article is that it is not evenly distributed. No mention is made of drugs that are routinely prescribed and have many side effects, including death.

The concern that countless dollars are going to CCSVI is not paired with the acknowledgement that many funds have gone towards funding drugs and drug trials for years, fuelled by the auto-immune hypothesis that have lead us to dead ends.

It seems to me that the neurologists are quite happy with the role they have held in the MS story to date. Even though they haven't had many solutions to offer, apart from barely effective drugs, regular check ups and MRIs. I respect that some patients may be content with the status quo.

Many of the brightest med students chose this specialty.

CCSVI and treatment opens the door for a shared limelight.

Experts in imaging veins, Cardiovascular Surgeons and Interventional Radiologists have emerged as players. More expertise may be needed.

MS may now stand for Multiple Solutions. We may be entering a new era that requires many partners to collaborate. Maybe that was always the case unofficially, but neurologists may need to give up the top spot.

Healthy Hope, False Skepticism

I wanted to show my support for a fellow good fighter & MS Champ whose words speak for many of us. It is a response to an article that ran on the front page of the Toronto Star this past weekend.

Here is Peter W's response:

I feel I have to respond to your article "MS Doctors Attacked for their Skepticism".　　 Your article was irresponsible and misinformed its readers.　

I am an MS sufferer and I have been involved in educating myself regarding CCSVI, its treatment. I have been involved in promoting, unsuccessfully, access to treatment for Canadians.　 I have yet to meet another MS sufferer who is not interested in knowing about the pros and cons of this treatment.　 I have also never met a patient who would come close to meeting the definition of vigilante.　 My aunt, who is a patient of Dr Freedman, was not impressed when he told her that the best way to deal with the pain in her foot (from over 50 years of MS) was to amputate part of her foot.　 That sounds like a vigilante doctor to me.

I don’t know where you got your information from but you were way off.　 I find it interesting that you didn’t mention that one patient　 of Dr Freedman’s died in HIS study.　 I think he has had fewer than 20 people in his study so that yields a mortality rate of higher than 5%!　 What is the mortality rate from all the venoplasties performed as treatment of CCSVI?　 Why is the risk of Dr Freedman’s research acceptable but researching CCSVI is not?　 Don’t fall for that line that we are researching CCSVI by funding limited Doppler studies.　 The Doppler study boat sailed from a different port ages ago.　 Even if it hadn’t, do you think that $350,000 a year over the next 4 years is appropriate for a country with one of the highest incidences of MS in the world?　 If you do, welcome to your seat on the board of the MS Society of Canada!

I am not angry with my neurologist for not pushing for CCSVI research.　 I am appreciative that he is not standing in its way.　 I wont disclose his name, but my neurologist is a　 well known MS specialist in Toronto who helped train Doctor Paul O’Connor.　 My neurologist has supported my efforts to help myself, including supporting my desire to have stem cell treatment in Israel.　 He is a wise man and supports any treatment that I opt for as long as I make my decision with full knowledge of the risks and possible benefits.　 That is how neurologists should be helping their MS (and other) patients.　

The MS Society of Canada and the neurologists that it funds are the antagonists in this whole CCSVI debacle.　 Neurologists are not specialists in vascular interventions so they should not be trying to trump them.　 The MSSOC and neurologists should play the role of analyzing the neurological benefits, if any, of venoplasty for their constituents.　 Instead, their egos have gotten in the way and they are creating road blocks instead of pathways.

Your article is terribly misguided in its comments about people travelling to foreign countries only to find that they don’t have blockages.　 I don’t know anyone who has travelled overseas just to have their veins scanned but I am sure that some people have.　 However, I am sure that most people who did take that gamble found that they did have CCSVI.　 90% of Dr McDonald’s patients in Barrie have CCSVI, a very high portion of those studied in Buffalo did and a very high percentage of Dr Simka’s patients showed to have stenosis.　 Your article makes it seem that stenosis is the exception rather than the norm.　 Quite the opposite is true.

I am attaching an analysis of the recent Beaudet Report that was produced by the MSSOC.　 This report was cited by the Federal Government as support for its decision not to push for clinical trials of CCSVI in Canada.　 As you will see, the Beaudet Report is as flawed as your article.　 Perhaps you will do the right thing and consider a sequel to your article that will present the pros and cons of CCSVI treatment fairly and responsibly.

Thank you from a vigilante reader.

Regards
Peter W

The Voice of Reason

A politician with heart, and smarts. She is helping to fight the good fight.

oh, Canada

I have taken a break and now I'm back. if you live in Canada, you may have heard about the various shades of inaction in the CCSVI story. I didn't want to be just be another drop of water in the water fall of cries of injustice of late. Of course it is never fun to face opposition to your beliefs. It is almost like certain words and phrases are getting in the way. Emotion, ego, and politics are shutting down what should be a simple, low cost alternative. Angioplasty has been practiced safely for years. It is considered routine. If an abnormality is identified, why not see if restoring flow helps?

good find: Fear

Words of wisdom that is fuel for my soul. The two things up for grabs are success or forgiveness. Live bravely.

good find: Nursing Our Inner Super Hero

Flight or Invisibility? Which would you choose? I was inspired by the creative in this episode of This American Life. We need to nurture our inner super hero, especially when we are weak. It is just too damn easy to fall back on short cuts. The true hero shows they are at ease with who they are. Especially when it is difficult. Ironically, we are strongest when we can show our vulnerability. No mean feat.

Tales of Ordinary Folk Rising to the Good Fight.

Good luck on Friday the 13th.
For balance, I have also heard from an MSer who was liberated, had two stents placed, and is struggling to recover. Healing can take time.

good find: The Guide To The Good Life

Sometimes you find a well of wisdom, this episode fits the bill. Stoic philosphy makes sense to me.

good find: Dreams+

Today's inspiration and knowledge.

The Luxury of Smug Healthiness

I have lived both sides of this coin. On one side, sits a character happily unaware of what life with any adjustment must be like. On the other side -- adjustment galore. Sometimes I catch a glimpse of my own smug attitudes of days past, and see the luxury I took for granted. It reminds me to be grateful for the gems around me right now. I feel like this life is richer in many ways. You can see who lives on the surface and who dives deep. You begin to see the world with added perspective. I guess that in itself is a gift. There are gifts on both sides of the coin.

good find: Motivation: Grit

Catch this episode of Spark on motivation. I found inspiration in the idea that grit can be learned. (in the full, uncut version)

Outside The Arc

I see characters emerging from the landscape. A pair of stories, opposites in many ways, but with many shared perspectives. Two women: One, pre-liberation, fiesty and committed to fighting for what is right. The other, liberated, wanting the Perfect Days she caught a glimpse of but having to respect a slower pace of healing. What happens outside the lines painted in the "miracle" videos in the now familiar CCSVI story arc? The "miracle" videos set the expectations high. What happens if we don't see the same dramatic, seemingly instant improvements? What happens when all our friends, family and neighbours hear we had the liberation treatment and expect us to have the same turnaround, on demand? The truth behind the "improved quality of life" statement becomes clear. We still have MS even if some things improve, some of the time. We still need to respect that every moment is not going to be a camera-ready, shining moment but that we will always strive to bring the best that we can to every moment -- hope for the best but forgive ourselves if perfect isn't here yet. It is a lesson in accepting the now. Yes, blocked veins should be cleared. Some see fantastic improvements. Improved quality of life is still worth fighting for. I wonder how any "scientific" body can even pretend to make declarations one way or another on such a roller coaster disease. Why does it feel wrong to point out that the "miracles" aren't the rule? Even "improved quality of life" is more than most drugs can offer. MS seems to have many shades. There are many different reasons we may need some help. Balance, weakness, fatigue to name a few. Perhaps there is a belief that this theory and treatment is only worth chasing if we can guarantee the "miracle." Those kind of expectations seem hard to sustain. Every case is different. Every person is different. Life rarely follows script. Life can still be beautiful if it colours outside the lines.

What If...

Meet Anne. She is a spirited woman with MS, who just got her test results back and found evidence of CCSVI but is faced with a healthcare system that won't correct a vein abnormality until there is enough scientific research that doing so will improve her autoimmune disease. Here is the game of What If she plays trying to make sense of the predicament.

"What if Diabetics were told by their endocrinologists they could not have their knee replaced until extensive double blinded studies were done of the impact of the surgery on their diabetes.

What if people with Arthritis were told by their specialists they could not have their kidney stones treated until extensive double blinded studies were done of the impact of kidney stones (and their treatment) on their Arthritis.

Lots of ways you can play this game!! It can get quite ridiculous…


I had my Vascular problem confirmed yesterday. It will not be treated because I have MS.
Whether CCSVI has a relationship to MS is irrelevant. If my vascular problem was identified in a person who did NOT have MS, it would be treated."

What do you think?

good find: Finally!

Good news close to home.

Spark

Sometimes I see a shower of mini lightning bolts. Imagine someone threw a bag of cosmic tinsel in the air and tiny bits of silver float down like silver feathers. Other people can be quick to jump to the pitying mode, the "MS Sufferer" mentality - and don't get me wrong sometimes I wear that hat too -- there are definitely challenges -- but Diane and I were chatting and she brought up a good point. The "Suffering" part can be a choice. There are challenges for us all. Of course, life without MS would be nice. You can substitute the initials MS for almost anything --stress, debt, cancer, depression, you name it. Rising to the good fight means striving for grace even when life serves you with a bowl of pits instead of cherries. It is a moving target but sometimes we can see art, even in "disability."

Kryptonite

Diane has returned from India. She was liberated again and this time "got a beautiful stent implanted snugly" in her left internal jugular vein. The 3 Perfect Days have not yet made an encore performance. The jet lag, heat and humidity may be the culprits. Some of us with MS know that the heat and humidity can up the ante on our symptoms. Fatigue and weakness can strike. For me, it is almost like the fog unfolding in a shower. My vision gets cloudy. When I first experienced this "cinematic event," I was in a running class at the gym and one by one my fellow classmates started to lose their heads in clouds of fog. Funny in a way, but scary. Thankfully, as I cooled down, a more typical scene re-appeared but that symptom is a moving target for me. No symptom is immune but they all seem to dance and want their turn in the spotlight. It is almost as though a chef is yelling out recipes at a square dance. "Let's take a hit of fatigue, with some vision fog...and then finishing with the grand finale -- a weak bladder!" "Ok now, let's start with muscle weakness..." Maybe it is not the same for others but my challenge is to remain calm during this parade.

A Lesson in Patience

The dog days of summer are meant for popsicles and flip flops. I just read about yet another MS-er who is heading abroad for the Liberation treatment. I am on a few lists like every other person with MS who hasn't already been treated but I am sticking to North America and refuse to pay insane amounts of money for this treatment. I am almost on the waiting list to be scanned by ultra sound by Dr. Sandy MacDonald's team in Barrie. Almost on a waiting list because I sent a request from my doctor at the beginning of May and they have only started scheduling the requests received since the end of April. At this rate it may be awhile to even see if I am a candidate for treatment. I can understand why folks take the fast lane. Every time there is media coverage of another successful Liberation, it just fuels the fire. Fighting the good fight for me means remaining calm and happy despite the heat and purgatory of lists.

The Promise in 3 Perfect Days

What does a liberated life look like? Meet Diane, a woman with MS who traveled to India for the CCSVI Liberation treatment, caught a glimpse of what life with unblocked veins might be like, and about a month later, she sensed her veins were blocked again because her symptoms returned.

Here is Diane's account of the 3 perfect days that happened over the course of her month of Liberation. The 3 perfect days gave weight to Zamboni's theory. She wanted to re-open the veins and consider a stent.

The most perfect of the 3 was going with my husband, son and dog early on a sunday to the former Don Valley Brick Works. If you're from Toronto, you may know that it's now a beautiful reclaimed area for indigenous plants and trees and water that has attracts loads of birds, frogs, snapping turtles and more. My husband would often take the dog there and I'd hear about how great it is. Now I know first hand! It was the longest walk I'd had in years and it was glorious!
Another perfect day was at the office. I put in a full day and only used my cane once, which was when I left the building to pick up some lunch. I was walking so well the cane got in my way. And my bladder behaved, which was such a bonus.
The last perfect day was when I managed to contribute to dinner prep, which has also become a rarity. I washed and chopped and cleaned the counters. I didn't do any cooking, but I made a salad with lots of ingredients. When we sat down to eat, I felt happy that I was responsible for part of the meal.
Some neurologists might say any improvement is a result of the placebo effect. If that's what it was, I want more! (But I think that's hooey, quite frankly.)

I'm already nostalgic for those 3 days and look forward to more in the not too distant future.
Diane

This journey elevates the simple, reminding us to find the bliss around us. Sometimes we catch a glimpse of heaven and it looks a lot like today (except it's symptom free) and nothing is taken for granted.

Stay tuned for the next leg of her journey...

Canada: The road to Liberation

This has been a pivotal week in Canada for those following the CCSVI action on the MS landscape. There were two cases made on the parliamentary stage with guest testimony from no less than Dr. Paulo Zamboni himself and Dr. Simka , the head of the clinic in Poland that has performed approximately 400 Liberation surgeries to date. MP Carolyn Bennet also lead a special Take-note debate, to make the case for CCSVI. Her passion is fuelled by a family member with MS. Her ability to rally behind and interject with the sentiments of many, brought on cheers, applause and even a few tears. There were dark characters at the table too. The conservative naysayers that can never seem to see enough evidence or success stories to sway them from inaction. There seems to be a resistance to coming up with solutions that challenge the norm. What if we develop a way to capture the follow up from Canadians who have had this treatment abroad? What if we made this treatment available in Canada as an elective surgury until enough proof has been gathered?