Skydiving? Why in the hell would I go skydiving?

I hope that you and all of yours have a wonderful 2012. I would like to leave you with my favourite post which was written in November 2010 and to let you know that this is still exactly how I feel. Let's ring in 2012 with a new enthusiasm for a cure for paralysis. 

Day one after the cure.

It's 7:00am and already the kids are buzzing about my head on the first floor. Singing Japanese songs that I am vaguely familiar with and then they begin to demand that I play with them. So I do.

Leaping from my futon, actually you don't leap from a futon on the floor (tatami to be exact), I roll over and get up. I shew the kids away and tell them to give me fifteen minutes. I go out the front door, get the paper, grab my cigarettes, and head to the washroom where I can read the paper and smoke for a few minutes in peace and quiet.

After I've had these few minutes, it's time to get breakfast going on the second floor. I ask the kids how they want their eggs done. "Hard boiled," answers one, "sunny-side-up," answers the other, but I tell them to decide ONE way to make their eggs and I'll agree to whatever. They engage in a quick round of janken (paper-scissors-rock), and Luca, the oldest, wins. Sunny-side-up it is.

Eggs, sausages (not real Italian sausages, but little tiny wiener type sausages from Japan), toast (not with olive oil and garlic, but with melted processed cheese), milk, and coffee for me. It's time to eat, but for Luca and Lio, it's time to fight about every egg, wiener, and slice of toast. I holler, and that calms them down. Finally we eat.

Next battle. It's Tuesday morning, during Obon holidays (that's when the dead come home in Japan and we have a week off to welcome them back), so I don't want to waste the day. "Brush your teeth, and get dressed." Again I win and they're off to the third floor to get ready. For me, it's five minutes of peace with which I run out to the balcony with the remainder of my coffee and newspaper, and cigarettes to grab a moment of peace.

"We're done." They come racing down the stairs and get ready to play in the street. I wonder if they'll now leave me alone, but looking at the deserted street below, I see that with no other kids, they'll soon be beckoning me, and I'll be happy.

All three of us now in the hot August street playing the Obama game. Interesting game it is. It used to be called the Osama (not the Bin Laden kind) game. Osama means king in Japanese and in this game you move up levels until you are finally the king. We named it the Obama game after the American elections.

We play for about one hour until we are all drenched in the Osaka sweat that goes along with the humidity and then all agree to go back into the house and the air conditioning. I hope that it's done, but my wife, who hasn't yet been out in the open heat, declares that we're going to Konan, a neighbourhood home centre.

Despite the fact that the heat is stifling, I'm quite happy to go. I want to get some wood to build shelves in the pantry, pick up some new plants, a new potter for my olive tree, and buy whatever else these places offer. Konan is great, but the bike ride to get there is HOT!

Finally there, we buy all the stuff we need, and don't need, and then head out to the parking lot for icecream. I wish that there was a beer for me, but there isn't, and even if there was, my wife is not going to let me drink beer at three o'clock in the afternoon.

We get home after the long bike ride up hyakuenbashi (one hundred yen bridge), and just when I'm ready to start relaxing and drink a beer regardless of whomever objects, we decide to go out yet again. This time forokonomiyaki which is like...I don't know what it's like. I ate okonomiyaki my first day in Japan and was told that it was a Japanese pizza. Well, it's not a pizza, it's more like a pancake full of chopped cabbage and slices of pork. Whatever, it's delicious and we eat it.

Oh, I forgot something. Before we go to eat okonomiyaki, my kids decide that it would be great to go to thesento (public bath) after we eat, so first we got to get our clothes and towels. I don't know if any of you know what a public bath is, but in Japan I go often.

It's basically a place with great big baths and showers along the walls. Great big tubs of steaming hot water, some inside and some outside, along with saunas and massage chairs. It's great and if you can learn to get naked with a bunch of guys, you'd soon learn to love it, as I did.

So after the okonomiyaki, me, Luca, and Lio are sitting up to our necks in hot steaming water outside. It's great, but I forgot the real reason for their insistence. The public bath I go to, Shintokuyu, has a lounge area with ice cream. So even though I want to stay and soak in the boiling water, I get out and satisfy my kids' desire for ice cream. I'm lucky though, because they sell both ice cream AND beer.

I'm beat but on the bike ride back home (about 2 minutes) I realize that I'm missing the most important thing for the end of a great day - MORE beer. We stop at the shop and pick up a few and head home.

We play upstairs in the kids' bedroom on the third floor. I tell them a story and then we say our prayers. 'Our Father', 'Hail Mary', and a host of other prayers said between English, Italian, Japanese, and even Latin. But it wouldn't have mattered if I had said them in Swahili, they're both asleep.

Now, I go back down to the first floor, it's too hot upstairs for me, roll out the futon, crack open a beer, and read myself to sleep. Tomorrow I've promised the kids that we'll go ZA BOOM which is a big swimming pool at an amusement park about thirty minutes from my house.

Sound boring? Not to me.

It's actually what I did the day I became paralyzed. That day, I only got to the futon part on the first floor before the pain started and I was rushed to the hospital, leaving my kids to be worried about their father AND why they weren't going to ZA BOOM.

For me, the first day that I get back my freedom, I wish to relive the last day without the pain that started this all (and hopefully without the cigarettes). Then I want to finish up my Obon holidays and head back to teaching and the union, and do it standing.

That's all.

I remember my first session of rehab three days after my operation. The physiotherapist, who was a really nice guy, told me about how people in wheelchairs climb mountains, go scuba diving, parachuting, and travel all over the world.

I thought to myself, "This guy is crazy." He was talking about my new enjoyable life in the chair. Why in the hell would I want to go scuba diving or parachuting from my chair? I never did these things before I got paralyzed, so why would I want to do these things now? I would much rather have had a discussion about new cures that are being researched for spinal cord injury. Instead I got the "life in the chair" talk.

Maybe it's about validating yourself or feeling alive; that you can do these things even if your are in the chair. But I don't need these things to validate that I am alive. I have pain and pins and needles that remind me that I'm alive. I'm not criticizing those who do do these things. Maybe they like it. Maybe they used to do it. Maybe they started doing it after they were paralyzed.

All I'm saying is that I would rather spend my time trying to make the cure a reality rather than ski down a mountain in my chair. I don't need amusements, because life in the chair is not amusing.

When they tell me that there is no hope whatsoever. When all the research shows that curing spinal cord injury is impossible, I might then decide that scuba diving is something that I really should get in to.

Cats eating mice at Geron

This blog post has taken me a long long time to write. One reason was of course my operation which knocked the wind out of me, but after hearing that Geron (the first company in America to win clinical trials using embryonic stem cells to treat spinal cord injury) was abandoning its clinical trials, I had to do a lot of rethinking about the best way forward to a cure. Oddly enough, it brought me back to a story called 'Mouseland'. Here I go.

The headline in the 21 November 2011 Los Angeles Times explains the whole story best:

Economics, not science, thwarts embryonic stem cell therapy

But I can sum up the story even easier - cats eat mice.

I was informed about this story by a reader who felt devastated by what she felt as "Geron abandoning me and others for profits."  What made it worse was that it wasn't abandoned because of concerns of the science or the safety, but simply because Geron did not see any potential to make money off these cells to treat spinal cord injury in the near future. Fair enough, cats don't chase mice for fun, they do it for food.

But oddly enough, I didn't feel let down by Geron. Me criticizing Geron for this would really be like criticizing cats for eating mice. Geron is a private company and the goal of a private company is to generate profits for their shareholders. If they can do it by curing paralysis that's great, but in Geron's case they decided that they could make more, and more quickly, with cancer drugs (more people have cancer than spinal cord injuries). Let me also be clear, I don't think that the people at Geron are bad, but in the end, they did what cats do, they ate the mice (in fact they first cured mice of spinal cord injuries), meaning that they did what was natural - they moved into a better position to make money.

I'll admit it though, in the absence of understanding how we can move research along to cure paralysis without depending on private profit, I secretly cheered for the cats at Geron against my better judgment and against myself, one of the mice.

Well, their abandonment of these trials made me have to sit, think, and search for another way forward that is more in line with my own thinking. And then I found an article that articulated what I always knew and felt.

The Horrifying Hidden Story Behind Drug Company Profits (Huffington Post: 4 August 2009)

While the story is not about curing paralysis it is about how the patent system stops people in the poorest countries from getting medicines they need simply because of profit and why we aren't always best served by profit. Furthermore, it articulated something that I had always thought about the role of pharmaceutical companies in making new medicines.

"Our governments have chosen, over decades, to allow a strange system for developing medicines to build up. Most of the work carried out by scientists to bring a drug to your local pharmacist -- and into your lungs, or stomach, or bowels -- is done in government-funded university labs, paid for by your taxes. Drug companies usually come in late in the process of development, and pay for part of the expensive but largely uncreative final stages, like buying some of the chemicals and trials that are needed. In return, they own the exclusive rights to manufacture and profit from the resulting medicine for years. Nobody else can make it."

But still there was no answer in regards to how to change the current system of creating new medicines or therapies.

"But a detailed study by Dr Marcia Angell,the former editor of the prestigious New England Journal of Medicine, says that only 14 percent of their budgets go on developing drugs -- usually at the uncreative final part of the drug-trail. The rest goes on marketing and profits. And even with that puny 14 percent, drug companies squander a fortune developing "me-too" drugs -- medicines that do exactly the same job as a drug that already exists, but has one molecule different, so they can take out a new patent, and receive another avalanche of profits."

"As a result, the US Government Accountability Office says that far from being a font of innovation, the drug market has become "stagnant." They spend virtually nothing on the diseases that kill the most human beings, like malaria, because the victims are poor, so there's hardly any profit to be sucked out."

This did get me thinking about spinal cord injury. The market to cure malaria is huge, but the victims are poor so they don't get a drug to cure malaria because no one will make much money of it. In terms of paralysis, even though it also exists in 'rich countries', the market is too small to warrant massive investment.

But these criticisms didn't give me a new understanding or show me away to make sure that I could back the mice to cure the mice. Luckily I kept reading and found what I was looking for at the end.

Today I will leave the story at that, but have a look at the end of the article and I'll continue very soon as I'm excited about this very interesting idea as it has the potential to unite people from many different disease groups with regular people who pay taxes into a very strong group of people who could make a change that affects my life and my pocketbook. 

Go mice!

Enough With the Rats!

by Unite2FightParalysis
visit their blog at http://unite2fightparalysis.wordpress.com/

Working 2 Walk in Rockville was such a rich experience, I’ve had trouble deciding what to write about first.  For today, let’s look at the message of our international advocates, all of whom traveled great distances to meet the scientists at W2W and express an urgency to make the leap from working on the spinal cords of lab rats to those of humans.

Martin Codyre (Ireland), Harvey Sihota (United Kingdom), and Dennis Tesolat (via Skype from Japan) spoke frankly about what it’s like to sit in a chair and observe:

• Promising therapies such as cethrin and hypothermia that never make it to Phase III trials because of financial and regulatory hurdles;
• Large SCI organizations that use the word “cure” in their promotional materials, but spend relatively little on restorative research;
• The lack of research attention paid to chronic injuries, when arguably that population has the greatest need and potentially the greatest return on investment;
• A perceived lack of collaboration, commitment, and coordination amongst the stakeholders to push a product to market.

Of course it’s our goal at Working 2 Walk to motivate members of the SCI community to move beyond observation and into action, which became the focus of a lively exchange between the panel members and audience.

A few of the more powerful comments:

“I think that what we’re going to do is take up our own part of the job. What is it? If you’re paralyzed and you have a part time job, your full time job is moving this along. If you’re paralyzed and you have a full time job, your part time job is moving this along.”

“A lot of us are speaking about hope, and that’s awesome, but we need to talk about action.  I heard Jerry Silver say ‘I’m fine.’  Well, I’m happy that you are fine, but I am not fine.  I’m not here to criticize, but I want to know how we get well. Let’s start with a goal: we want clinical trials in two years and manage toward it.”

“We could be much further along toward a cure, which I define as getting out of the chair. We can’t be happy just with bowel and bladder, not that we all don’t want that. We have to take what we can in the short term but look toward the long. We need to push for a big change, or we’re all going to die in these chairs.”

Working 2 Walk itself is an effective catalyst for change, bringing together scientists who in the presence of consumers may be more motivated to collaborate, building the knowledge base of advocates, and creating unique networking opportunities.  But more needs to be done on a year-round basis.

Translation of therapies from the laboratory to the clinic is often called “The Valley of Death”.  In a recent Science Daily article about stem cell treatments for spinal cord injuries, Dr. Michael Fehlings noted that “At this time, a strong patient advocacy base would likely help provide momentum to help translate current research into clinical applications.”  Let’s get going.

Nothing a good game of basketball can't cure

It was bound to happen again. Why I didn't think it would happen again is beyond me.

I have to remember in these instances that people are just trying to be helpful, but sometimes I forget and instead of trying to use the situation to teach a point, a smart-ass comment pops out instead.

For those of you who have been following my blog you know that I am in the hospital following an operation to collapse a cyst (syrinx) in my spinal cord (syringomyelia). After the operation I had a few days rest and then started rehab and met my occupational therapist.

After introductions our short conversation went like this.

Therapist: What do you think about basketball?

Me: Do you mean getting drunk while watching it on TV?

Therapist: (No answer)

Well, I'm happy that he has forgiven my quick tongue, but now I have to figure out away to teach him about our battle for a cure of paralysis, and that's more difficult.

Before I go any further, I want to make a few things clear. One, I am not against basketball. Two, I do understand how sports can play a positive role in reintegration and self esteem for some paralyzed people, and three, I'm not against a healthy lifestyle and exercise for anyone. I am simply against the concept that says wheelchair sports can cure the broken lives caused by paralysis. I'm sure that if Marx had been paralyzed he would have called wheelchair basketball 'the opiate of the paralyzed'.

I don't blame the rehab therapists for not understanding the cure for spinal cord injuries. After speaking to people across the world I'm pretty sure that this basketball speech is in the 'International Rehab Therapists Manual'. It's up to us to change the way they think so that when they talk about basketball they mention it in the same breath as 'cure' and how we have to keep our bodies and minds in good shape so that when there is a cure we'll be ready.

To this end I would like to republish a leaflet that was prepared for the ISCoS (International Spinal Cord Society) last June. You can print out the piece below (here is the PDF) and give it to your rehab therapists, doctors, nurses, etc.

What can a lealfet do to push the cure forward?

After having rewatched Cry Freedom about Steven Biko and the 'black consciousness' movement I realized that what we are missing is 'cure consciousness'. Until we and health professionals start believing science, that CNS (central nervous system) regeneration, i.e., a cure for spinal cord injury, is possible, we will be stuck in teaching the paralyzed that the only thing they got coming to them is a rousing game of basketball.

So hand out the lealflet and have a little talk with your health care profession, and don’t forget to hold your tongue even if you think you got a good one-liner like I had.

The leaflet is two pages. It contains a message from those living with spinal cord injuries (download) - full colour version, plus a list of clinical trials that are going on around the world (download)- full colour version.

As science stands on the brink of a cure for paralysis, we ask members of the International Spinal Cord Society (ISCoS) and American Spinal Injury Association (ASIA) to refocus, realign, and redouble your efforts to help advance promising science to the bedside.

At a time when there has never been more hope, we remind you that together it is our responsibility to keep abreast of the status of basic, translational, and clinical scientific initiatives across the globe. 

As advocates, we recognize that clinicians are an important part of the chain for curing paralysis and ask each of you to educate your patients with the facts about the compelling progress that is being made in the field of spinal cord injury research. This is not spreading false hope, it is fact.

The current state of science dictates that we work together to bring promising therapies from the lab to the bedside. no more should a consultant, neurologist or neurosurgeon need to utter the words "you will never walk again."

Let's work together to educate patients on what science can realistically mean for them and future generations. 

With all our might, we will support those of you who will partner with us to advance a cure. Strive to cure spinal cord injuries with the same zest as you have cared for us.

Right now, together we can!

 Also available in the following languages:

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Willing away paralysis. How about syringomyelia?

When I was first paralyzed, a friend relayed a conversation that he had overheard about me. I don't remember it word by word, but basically it was that people like me don't remain paralyzed, we walk.

Syringomyelia. See the thin light grey shape inside
the spinal cord, placed at centre in the bottom
half of the above image.

Now, I don't know if he was commenting on my willpower or my stubbornness, but either way I took it as a nice compliment even though I thought it was completely crazy.

We all hear the stories about people who willed away their paralysis. I don't want to say these stories are untrue or that these people are frauds, but often there is a very clear medical reason why some people recover from an injured spinal cord and the vast majority don't. It has a lot less to do with willpower than with what type of injury the person suffered, but because most regular folks aren't experts in spinal cord injury they think that willpower must be one answer.

I think that this thinking also spills over into how people view a successful adjustment to a life with paralysis. People that don't have just enough willpower to cure themselves, but have enough willpower to lead a happy life in the chair. Again, because the media hypes the stories about paralyzed people's success stories, those that aren't so successful end up being thought of as weak.

I guess this comes from people's basic understanding of paralysis, especially paraplegia (just the legs paralyzed). People tend to think of it as an injury that just knocks out your legs and therefore with a strong upper body (and willpower) it should be easy to get used to and lead a normal life. Again, if you can't, it's because of a lack of willpower.

People never think about, because it's never talked about, things like severe neuropathic pain, or pressure sores, or the hundreds of other secondary issues involved with paralysis. In the case of paraplegia, people tend to think that it's just the legs that don't work.

I've got a a new one that people have never thought of. Syringomyelia and I've got it. Basically this is when the spinal fluid enters the spinal cord and causes like a balloon filled with spinal fluid to grow inside the cord which eventually destroys the spinal cord. It often gets longer and goes up the spinal cord leading to sensory dysfunction, pain, weakness, and could lead to quadrapalegia as it gets longer and knocks out the arms.

How did I get this? Lack of willpower? Lack of adjustment to a life of paralysis? No, none of these things matter as you can't will it away or use your willpower to adjust.

No one knows the exact reason why or how it forms, but it forms due to a reaction to a spinal cord injury or hemmorage (which is what I had).

So please keep in mind when you read stories about those leading very successful lives despite their chairs, that not all injuries are the same and not all people suffer secondary complications from their injuries (even though most do and only a small minority lead the lives that you read about in the newspaper).

As of 26 October I'll be writing this blog from the hospital and I get ready for my operation on the 28th and then get moved to a rehab hospital. I'll be letting the surgeon use his skill to get rid of the syringomyelia and then use my skill to keep fighting for a cure for paralysis so things like syringomyelia and all the other complications of spinal cord injury get put into the history books.

Of course you need willpower to not give up hope, but I'm sorry to report, willpower doesn't cure paralysis..

One or two clicks to cure paralysis

A very important bill, The Regenerative Medicine Promotion Act of 2011, (http://stemcellsandatombombs.blogspot.com/p/regenerative-medicine-promotion-act.html for more information about this bill) has been introduced to the US House of Representatives and now the aim is to also get this bill introduced in the American Senate. Remember, regenerative medicine is the stuff that will get people out of their chairs and walking again!


To do this the bill must have sponsors so it can be introduced. This bill already has one sponsor, Democratic Senator Barbara Boxer, but we need a Republican senator to also sponsor it or it won't get anywhere.


To this end Unite2Fight Paralysis (a grassroots organization dedicated to finding a cure for paralysis - see www.U2FP.org) is sponsoring a face to face lobbying session in Washington on 18 October as part of their Working2Walk conference.


We can't all be there to help in their efforts but you too can help inspire some Republican senators to sponsor this bill by sending the email below. To let them know that people inside and outside of America are looking to the USA for leadership in this very important matter - curing paralysis and a host of other conditions and diseases.



Please send a message to the following US Senators.

The Honorable Mark Kirk (Illinois)
The Honorable Scott Brown (Massachusetts)
The Honorable Susan Collins (Maine)
The Honorable Olympia Snowe (Maine)

This campaign has ended.

Don't miss Working 2 Walk 2011

www.U2FP.org

Plan to join us this fall as we return to the Washington, DC area.  The past year has been an exciting time in the world of spinal cord injury research as therapies move from the lab into clinical trials.  Working 2 Walk brings you the opportunity to:

• Meet the scientists who are leading the effort to find curative therapies;
• Hear first-hand the latest news on the research front;
• Learn about currently available modalities that will help you maintain a healthy lifestyle and maximize function following spinal cord injury;
• Find out what you can do to accelerate progress toward cures;
• Network with your peers in a dynamic environment.

For all those interested in a cure for paralysis, don't miss it! I can't be there in person, but I'll be there somehow.