31 December 2010

You're not a scientist...but want a cure for Spinal Cord Injury

Many Canadians will know the man in this picture. He was chosen the greatest Canadian in a Canadian Broadcasting Corporation (CBC) poll. For those of you who don't know him, let me tell you who he was and more importantly, who he wasn't.

First of all, who he was. He was the premier of the province of Saskatchewan in Canada from 1944 to 1961. He led North America's first democratic socialist government and during that time made big improvements in the lives of Saskatchewans. He later became leader of the a new social democratic party, the New Democratic Party, after leaving Saskatchewan for national politics. And now, before I lose your attention, let me tell you who he wasn't.

He wasn't an engineer...
but he almost completely electrified rural Saskatchewan by creating the Saskatchewan Power Corporation.

He wasn't a teacher...
but he reorganized the public school system in order to equalize conditions and enrich the quality of education and increased the education budget.

He wasn't an economist...

but  from 1944 to 1948 the province of Saskatchewan saw balanced budgets in all of its first four years, while government spending rose by 20% (with impressive budget surpluses of $8 and $9 million in years one and two). Between 1951and 1959 government revenues rose from $63 million to $143 million. While spending grew, the province stayed in the black every year.

He wasn't a lawyer...
but in 1947 Douglas created and put into place Canada’s first Bill of Rights. It included protections for the freedoms of religion, speech, assembly and elections, while also legally prohibiting both racial and religious discrimination.

And most importantly, he wasn't a doctor...
but January 1, 1947 Douglas created Canada’s first universal and compulsory hospital insurance program, and on April 25,1959 Douglas announced his government’s intention to introduce a universal and comprehensive medical care insurance program for the province. He was inducted into the Canadian Medical Hall of Fame and he is only one of three non-medical professional laureates of this society.

So how did this Scottish born immigrant to Canada and  Baptist minister who as a kid almost lost his leg to 
 Osteomyelitis because his parents couldn't afford the medical care make all these things happen? He inspired people to act and only eleven years after his party was created, he became the premier of Saskatchewan.

He didn't bring medical care to people by raising donations for hospitals. He did it by making sure that people knew that free medical care was their right.

He wasn't an expert in medicine, but knew how to use experts to achieve his goals. He didn't just wait for the experts, he organized the experts and worked with them to achieve the goals that were most important to people. He built a movement and it changed people's lives.

PS. To keep this blog short, I at first thought only about writing about how Tommy Douglas brought medical care to Saskatchewans and all Canadians. I decided not to use the approach because I wanted to be fair to Douglas' memory. 
More on Tommy Douglas and his achievements: http://www.tommydouglas.ca/?page_id=88

23 December 2010

Greater than the might of atoms magnified a thousand fold - Part III

Part I Part II

I think there are easily about 100 people who would love me to get up out of my chair. And if you add another twenty or so people who would like to give me a punch in the head but are refraining while I'm in a wheelchair, my number goes up to 120 people.

from the Rick Hansen Spinal Cord Injury Registry 2001/2002
I bet that I could get all 120 to sign a petition for better organization and funding for stem cell research (but I don't think petitions are an answer).

I bet I could get about 80 to sign a postcard and actually mail it back to me asking for the same, and about 50 would attend a demonstration to get me a cure. The twenty in line to give me a punch in the head would probably storm any necessary barricades.

Everyone claims that the spinal cord injury community is too small to gain the necessary attention for a cure, but I don't think so.

I am not one, I am one plus 100. I am 101.

Let's do some atomic multiplication to show that we're not such a small group.

Looking the chart, you can see that we are not a small group. When you consider just those with spinal cord injury, you can see that we are already at 2.5 million people. Multiply this by, let's say 50 friends, family members, and enemies, and don't worry about their friends and their friends and their enemies, then we have 12,500,000 people read to fight for a cure.

Did you know our world wide community was that big? Now that we know how big we are, it's time to get get organized.

Let's wait for the next few posts to see how regular people like me and you have changed the world and their own lives.

PS. I know our world is that big and that's why this blog is available in the following languages.
Japanese, Italian, and Russian. Soon to be followed by French, German, Chinese, and Romanian.

19 December 2010

If I were a monkey, I'd be jumping, too

Everyone has good days and bad days. People in wheelchairs have them, too, but sometimes they are a little more pronounced than able-bodied people. Bad days tend to have a bigger impact on our bodies. 

Lately, my good days are far outnumbering my bad days, and this is good and bad. Good because I can get through the day without being uncomfortable or irritated, and that makes daily life easier to handle. Reintegration into society becomes a little more doable if you're not feeling like crap because of pain, or 'pins and needles', or a sore bum.

The bad point to good days for those with spinal cord injuries, or other chronic conditions, is that it fools us into thinking that life in a wheelchair isn't so bad. That living in the chair for life wouldn't be so bad. That maybe there is no need to fight for a cure when you're having so many 'good' days.

So I regularly need to remind myself that regardless how smooth things are going for me, I have to continue my fight to get cured. The point is to walk again, not to like my chair. 

Of course, if a cure weren't possible, then maybe resigning yourself would be best, but recent announcements this year regarding stem cell based cures for spinal cord injury, tell me that we are close, but your help is necessary.

The point of this blog was never to be a scientific journal, but to point out to people how possible, the once unimaginable, has become. There is no sense in me telling you to fight for a cure for spinal cord injury if you don't believe that it's possible, or if the science doesn't exist. 

Science is doing terrific things right now that will affect me and others you may know, in the very near future, but we won't get these things without pushing our own governments to speed up the process and spending the necessary resources to get us a cure.

Here is a big announcement from Japan just this month.

The first is an announcement made in here in Japan just a few weeks ago. With the use of  induced pluripotent stem cells (iPS cells - basically your own cells turned back into an embryonic state which can therefore become any type of cell) once paralyzed monkeys are getting unparalyzed. These monkeys were paralyzed from the neck down and within a week they got back their hand strength and could stand. Six weeks later they were jumping; jumping for joy, I bet.

Now there are still problems with iPS cells. There is a fear of the cells turning into cancer, but these monkeys haven't had a hint of cancer after three months. It also takes a lot of time to create the cells. In this case it took six months, but the monkeys got their cell transplants after only nine days of being paralyzed. There is still a long way to go, but it's getting closer.

But the most important thing about these cells is that they were first created from mice cells in 2006 and then in human cells in 2007. Three years later, they are being used to treat spinal cord injury in animals. That's speed, and shows how far stem cell research for spinal cord injury has come.

Compare this with embryonic stem cells and you'll see how quickly things are moving. In 1981, mouse embryonic stem cells were first isolated and grown. It took 17 years to be able to do the same with human embryonic stem cells, and then took another seven years to be able to use them on paralyzed mice. It wasn't until this year, four years after the mice walked, before they were even tried on humans. We're still awaiting the results of these safety studies, but this will be very interesting.

I'm not trying to push one type of cell over the other. Just trying to show how fast things are going and that the
science to get me out of this chair is here. Now if we can only get governments behind this, I'll be jumping, too.

12 December 2010

From Atomgrad to Stemgrads - Welcome to СтволовыеКлетк&AтомныеБомбы

The Russian version can be found at: www.stvolovyekletkiiatomnyebomby.blogspot.com

In high school history with Mr Martin...

And he used to say. "No one would like to live in the Soviet Union," he'd pronounce it 'SAWviet Union', "except maybe for Tesolat."

We were studying the Cuban Missile Crisis, or at least his version of the Cuban missile crisis, and teaching us how outrageous it was for the Soviets to try to put nuclear missiles in Cuba, when I asked a question.

"Then isn't it equally wrong for the US and NATO to have nuclear weapons in western Europe pointing at the Soviet Union." Well, after that, when ever we studied anything remotely to do with communist countries, I'd hear the refrain.

"No one would like to live in the Soviet Union, except maybe for Tesolat."
"No one would like to live in Red China, except maybe for Tesolat."
"No one would like to live in Castro's Cuba, except maybe for Tesolat," and on...and on...and on...

But just in case Mr Martin looks at this, I want to make sure that he knows I liked his classes, because even though he had his own version of history (and most historians do), he didn't prevent us from arguing our points.

I have to admit that I was truly impressed by the Soviet Union when I was in high school. I later learned and studied things that made me change my mind, but that was later.

Here was a country, which we were told was evil, corrupt, and backwards compared with the west, but they beat the Americans into space. More importantly to this blog, they were the second country on earth to possess an atomic bomb. They did this, after four years of war where they lost over 20 million people. After one in four Russians was either killed or wounded. After their country was left devastated from World War II, and they did it in seven years.

They realized that such technology could not just be acquired willy-nilly with researchers working uncoordinated at universities throughout the country. The Soviets went so far as to build Atomgrads. These ten cities were were nuclear weapons research and development took place. Again, we can see clearly how the full weight of the state is the only thing that can produce such technology, and in a very short time.

Regardless of what I learned later, it still doesn't change the fact that both the Soviet race into space and the creation of an atomic bomb, so soon after the horrors of World War II, are remarkable feats.

With the launching of this blog in Russian today, I hope that the new Russia can also become world leaders in stem cell research. Mr Putin has already showed how to get world leaders together when he hosted a thirteen nation conference on saving tigers. I like tigers, but I hope that the Russian leaders will make the same effort for people with the many diseases that stem cells hope to cure. I'd love to see ten Stemgrads built in Russia.

28 November 2010

Did I give up?

No, don't worry. I haven't given up.
No, don't worry. I haven't fallen into a deep depression.
No, don't worry. I haven't gotten busy with life and forgotten the blog.

Actually, it's been because I've been busy with this blog that there will only be three blog posts for November.

Think I'm making up excuses?

First of all, more and more spinal cord injury cures are being brought to clinical trials or are applying for approval, so I would like to give you an update next month. I'm not the most scientific minded guy in the world, so I'm doing a little bit of reading so I can give you some good information. It even looks like there will be a clinical trial in Japan in the near future. The cure is coming!

Secondly, just so you don't think I'm making this stem cell/spinal cord injury cure stuff up, I've been very fortunate in getting an interview with a world renowned spinal cord injury scientist. His words and activities will be a focus of another December blog. He also believes a cure is possible, and he knows what he's talking about.

I also have another interview planned in the next two weeks and I'm currently doing the background work for this. It's with a great spinal cord injury cure organization based in America. They've just finished up with a conference which brought together many leading researchers and activists from all over the world. I want to be able to show you all how regular people can contribute to a cure, because this group believes a cure is possible, too.

The other language editions are also taking off. Since starting this blog in English, I've also launched the Japanese (幹細胞&原爆) and Italian (CelluleStaminali&BombeAtomiche) versions with the help of terrific volunteer translators. An Italian facebook page and an English facebook page have also been launched. Please sign on to your facebook accounts and 'like' these pages. I also hope to launch the Russian, French, Romanian, and German pages in the next month. I want to bring information about the cure to the rest of the world.

Finally, the goal of this blog wasn't to be a 'spinal-cord-injury-world-according-to-Dennis' type venture, but to bring me closer to other activists fighting for a cure. I've made terrific contacts with people all over the world who all have the same goal: getting us out of our chairs and back into the walking world. My discussions with these people have been wonderful and I hope to have some news for you about these activities. These people all believe that a cure is possible.

Next month and next year, I would like to focus on how you can help make the cure a reality. Everyone I talk to thinks that the cure is within our reach, but your cooperation will make it come even sooner.

PS. And just to show you that I'm not all work, work, work. The pictures in this blog are of my family that were taken during my youngest's SHICHI-GO-SAN. These are the people the cure is for.

20 November 2010

Skydiving? Why in the hell would I go skydiving?

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 for okonomiyaki 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 the sento (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.

05 November 2010

The Washington Post on standing. And revolution?

Mark Ramirez, a senior executive at AOL, does it. "It feels more natural. I wouldn't go back to sitting."

Kate Kirkpatrick, an executive at Gensler, does it. "I don't get that need-to-take-a-nap feeling in the middle of the day anymore. My body feels more healthy. More alert. The tightness you get in your neck from sitting all day, that's gone, too. I'm just more comfortable now."

Accountants do it. Programmers, bureaucrats, telemarketers do it. Even former defense secretary Donald Rumsfield does it.

Do what, you ask?
Stand. And they love it.

Just when I thought I was reading an article about people who used to be confined to wheelchairs but are now standing, I realized that the article was about standing, at work. It was an article about a new elevated desk and the company that makes them, GeekDesk. Yes, you too can stand at work with a new $800 desk which is elevated using electric motors.

You can,  if you can stand.

But as I was about to move on to the next article, I decided to keep reading, and I'm happy I did. I found some really interesting reasons why getting out of my chair is so important. I may even have found some insight on how to accomplish this.

James Levine, an endocrinologist at the famous Mayo Clinic and the author of "Your Chair: Comfortable but Deadly", gives us more details that back up his claim that, "we were built to stand."

  • When we sit, important biological functions take a nap.
  • An enzyme that vacuums dangerous fat out of the bloodstream works properly only when the body is upright.
  • Standing prevents heart disease, burns calories, increases the way insulin lowers glucose, and produces good cholesterol.
So I did learn why sitting all day is, what a leading researcher on inactivity Marc Hamilton calls it, hazardous and dangerous. Hamilton even goes so far as to call the sitting problem, "the new smoking". 

I've joked that if I stand again (no, not if, when I stand again) I'll even throw away all the chairs in my house. But how do I get out of my chair? That's the important point.

It wasn't until I got to the last sentence of the final paragraph that James Levine, like a new Lenin, gave the answer on how we'll all be able to get out of our chairs. 

"Sitters of the world unite. It is time to rise up now."

All quotes are from the 17 October 2010 edition of the Washington Post article, "Those with a desk job, please stand up"

28 October 2010

Rotting on Remand and the Geron trials

I stood before the judge that day
As he refused me bail
I knew that I would spend my time
Awaiting trial in jail
I cried there is no justice
As they led me out the door
And the judge said,
"This isn't a court of justice son, this is a court of law."
...I was picked up on suspicion of something I hadn't done
Here I sit in F Wing waiting for my trial to come
It's a cruel unusual punishment that society demands
Innocent till proven guilty, rotting on remand

"When we started working with human embryonic stem cells in 1999, many predicted that it would be a number of decades before a cell therapy would be approved for human clinical trials," Dr. Thomas B. Okarma, president and chief executive officer of the California-based company, said in a statement.
While a milestone in the technology, the drug candidate is still a long way from being proven and reaching the market. It still faces many years of testing for effectiveness if all goes well in the early stage study.

I know exactly how the protagonist in the song feels. Anyone who has stood before the doctor and told that they have a chronic condition understands these lyrics.

In my case, the doctor explained clearly the day after my operation that I was paralyzed, but with the research going on with stem cells there was a good chance that in the near future something could be done. He refused to sentence me. I would rot on remand.

Some prisoners give up. They refuse to participate in life. Some prisoners, especially those in countries with more rehabilitative prison programmes, go on with their lives. They go to school, write books, study law, even get married and enjoy conjugal visits.

But all prisoners, regardless of how they decide to live their lives inside, all share something in common; they are deprived of their complete freedom, much like those suffering from chronic illnesses. There is no real thriving, there is only "using your time wisely - building time" or "fighting time". Either way, you're a prisoner.

All the evidence regarding the regenerative impact of stem cells for spinal cord injury, blindness, ALS, MS, heart disease, etc. is meaningless if we don't get to the human cures. In the case of spinal cord injury they say they need to go slowly, they can't take big risks because we have quality of life in our wheelchairs. Yes, we can have quality of life, just like a model prisoner, but still rotting on remand.

Now, I'm not suggesting that we take reckless risks. I'm just saying that until the government gets behind the coordination of the entire project, not leave it up to Geron and their investors (who may even run away if the trials aren't successful). I'm not even suggesting a risk like when they tested the first atomic bomb in Los Alamos. There they worried about a very big risk.

One scientist raised the possibility that an atomic bomb might ignite the atmosphere. Another scientist calculated that it could not happen and then after some study they concluded that, "the ignition of the atmosphere was not impossible, just unlikely." But the question was never laid to rest until the day they exploded the first bomb.

Quite the risk, that igniting the atmosphere stuff, but they went ahead to win a war.

We should refuse to become model prisoners and wait patiently. We need to raise our voices together to win the war.

23 October 2010

Italian StemCells&AtomBombs

"O Eterno, ascolta la mia preghiera, e porgi l'orecchio al mio grido; non esser sordo alle mie lacrime; poiché io sono uno straniero presso a te,  - un pellegrino, come tutti i miei padri." (Salmo XXXIX)

"Hear my prayer, O Lord, and give ear unto my cry; hold not thy peace at my tears: for I am a stranger with thee and a sojourner; as all my fathers were." (Psalm XXXIX)

And with this verse from the Psalms, I launch the Italian version of StemCells&AtomBombs, www.CelluleStaminalieBombeAtomiche.blogspot.com.

The Italian version has a special place in my heart because even though I now live in Osaka, Japan and was born in Woodstock, Ontario, my father and mother are both Italians. In fact Italian is my first language as I didn't really learn to speak English properly until I went to school. Italian is the language of my childhood home, the language I speak with my mother and spoke with my father, he passed away fifteen years ago, and the language I spoke with my grandmother, aunts, uncles, and friends of my parents.

But like a lot of immigrant kids, our grasp of our mother tongue is limited because of our lack of education in our parents' language. Little by little, as English took over our minds, we became a little estranged from our parents. Our Italian wasn't good enough to say exactly what we wanted our parents to hear, and our parents' English was never good enough to hear exactly what we wanted to say...for I am a stranger with thee.

I hope that with the team of very dedicated volunteer translators (Anna Recchia, Nicoletta Natoli, and Daniela Bollini) my mother will be able to read my adult thoughts and understand me a little better. I hope that she will be happy with the son that she raised.

I have family all over the world. From Italy to Switzerland - my father's brothers and my own father for a very short time before he turned twenty. From Italy to Argentina - my father's brother who died there after only a short time. From Italy to America twice and back to Italy - my great-grandfather on my mother's side. From Italy to France and from Italy to Boston in America- my mother's mother's brothers. And from Italy to Canada for my father at nineteen and my mother in her twenties along with my father's many cousins who were already there and on my mother's side all except two sisters plus my grandmother. I probably have cousins in places I don't know.

And now me, to Japan where I have two boys who are half Italian-Canadian and half Japanese. My wife jokes about where my boys will someday live, but I am adamant that the Tesolat migration story will end with me. I do not wish my children to be sojourners; as all my fathers were.

My biggest fear if I continue to live in Japan is that my own children will become what I must have become to my parents - a son who was unable to fully understand my own parents' lives and language. I fear that my children will also become strangers from me. This is the loneliness that all our immigrant parents and grandparents must have felt, and now it will be my turn.

Since coming to Japan, a country with very few European immigrants, I feel a special bond to my parents and relatives who were sojourners before me. I remember my long telephone conversations with a favourite aunt, and how she talked to me differently once I moved away from Canada. She talked to me in a more intimate way, as if I, being an immigrant myself, could understand her heart much better. Of course, I never knew the economic hardships she knew, and I never left the country of my birth because of economic conditions (even though I also left Canada because of a recession that made finding work difficult), but she didn't really talk to me about those things. She talked to me about the loneliness of being a stranger in a strange land, of not being with her own mother, and this I could truly understand...Hear my prayer, O Lord, and give ear unto my cry.

Like the loneliness of the immigrant, there is a loneliness that comes from being sick, or paralyzed as in my case.

I think of my own situation. Suddenly paralyzed at 39 years of age with two small boys still to raise in a country that is not my own. Loneliness also visits me from time to time.

The loneliness is not all encompassing. Life doesn't stop for the infirm or the immigrant. Family and friends are married, children are born and baptized, children grow, go to school, get jobs, fall in love and eventually get married and make us grandparents. There are too many good people and good things around us to feel lonely all the time.

But like an old friend who we sometimes forget about, loneliness drops in for a visit.

For me, he visits each day as I open my eyes in the morning. He stays just a short while, but long enough to let me know he's still there. I'm sure he'll visit me less in the future.

For immigrants, loneliness visits especially when there is a death or sickness in the home country. When yet another root that bound them to the past is ripped from them. I remember these times in my house when I was a kid and I remember it when my own father died while I was in Japan. I can imagine how my family felt when I called them to tell them that I was paralyzed.

Loneliness also visits during happy events when despite all the loving faces around us, the immigrant thinks of all those who are not with us; a mother, a brother, a son. I can imagine how my own parents felt during happy events in Canada because I know that loneliness paid them a visit as he visited me during the birth of my two sons, far away from their own grandmother in Canada.

And he also visits me when I see fathers playing with their children, riding bikes, running in the park; all the things that I can't do with my own children now. When I see these things I can feel the hand of my old friend resting on my shoulder.

Those around the immigrant and the sick can never completely erase this feeling of loneliness, but can add to it, especially when society as a whole makes them feel unwanted and does not try to meet their needs. And this is the last point I wish to make today. This point is directed towards all of Italy, the place that I know only from my parents' stories.

I was reading in the paper today about Italians' attitudes towards Gypsies in Italy. Sixty eight percent of Italians feel them to be criminals and other despicable news of mob violence against Gypsies. I ask Italians to remember the emigrants that left Italy in search of a better life because Italy could not take care of them. In fact, these emigrants, leaving Italy, helped Italy rebound after the war.

And I also ask you in Italy to see some important words and figures from Canada.

"...among the strikers area majority of foreigners, chiefly Italians, who are reported to have prepared to meet opposition to their demands at the point of the knife, the national weapon of the 'dago'..." (Daily News 1906).

"A mob of children come screaming from a small side street somewhere. They are dirty little wretches, with hair uncombed and clothes all torn. You wonder why they are not in school." (Margaret Bell writing about the social conditions of Italians in Toronto, 1912).

And just so you don't think I'm writing about ancient history, as late as 1977 a Gallup Poll surveying Canadians' attitudes towards Italians for the first time reported that 40% of Canadians linked Italians with crime.

A society that turns against the strangers in their midst will soon be a society that turns against the other weaker members and treat them like a burden. First the immigrants, then the old, and then the infirm, and it will only intensify their loneliness.

On the other hand, a society that takes a step towards the lonely will achieve great things

Not from science, but from a feeling of human brotherhood; that's where I'll get my stem cells.

15 October 2010

Cigarettes, StemCells&AtomBombs

Poor planning? A lack of coordination? Government failure? Private sector failure?

The Yomiuri Newspaper has just reported that the Champix drug supply in Japan has run out.

Champix, from Pfizer Japan, is an oral smoking cessation drug which blocks the part of the brain that receives nicotine, making it difficult for smokers to enjoy the taste of cigarettes.

The government of Japan had a great chance and they blew it!

As of 1 October cigarette prices increased by a whopping 35%. A massive increase that was part of the governments anti smoking measures. This increase was supposed to get people wanting to quit smoking. So why is the best anti-smoking drug on the market in short supply?

The Yomiuri reported that the, "demand greatly exceeded Pfizer's expectation." A doctor at the famous Tokyo Medical University was quoted as saying, "In no way did I expect that the about 100YEN increase in cigarette prices to cause demand for the drug to surge."

Well, I don't blame the doctor and I don't blame Pfizer Japan. I'm shocked that they were shocked by the massive increase in demand for this drug, but it's not their job to consider the overall health of people in Japan. That's the government's job.

I'm not saying that the government isn't able to plan these things out, I'm saying that they DIDN'T, and that's the problem.

It's an ideological problem. Actually, it's an ideological problem which is interfering in practical health delivery matters. This ideology says that governments shouldn't interfere in the marketplace. According to this religion-like-ideology, Pfizer should have expected the surge and naturally met the market need to maximize profits. So what went wrong?

It's easy. Pfizer didn't increase the supply in case there wasn't a demand. They played it safe and maybe lost some sales, but more importantly they didn't risk losing money by increasing the supply of something that maybe no one wanted.

So what should have happened?

The government should have...
...planned an increase.
...educated people about this very easy way to quit smoking.
...surveyed smokers willingness to quit.
...then secured an adequate supply of this drug to MAKE SURE it met demand.

It's easy to understand why people are cynical and think that this was never intended to be a public health measure but a pure and simple tax grab.

This could have been an excellent stop smoking plan in a country where over 30% of the male population smokes, but instead the drug maker has asked hospitals to postpone prescribing the drug to new patients as they will not be able to get the drug until next year.

By next year, the shock of the increase will have worn off and this golden opportunity missed.

You'll notice that governments never run out of uranium to fire atom bombs. No! Even a failed state like North Korea can secure this evil.

I guess there is no need to talk about why there is no stem cell based cure for spinal cord injury yet.

09 October 2010

Fetishes and the World Stem Cell Summit

For many people ALL stem cells equal EMBRYONIC stem cells (stem cells derived from embryos).

Is it true? Did people imagine it?

Well, it's neither true nor imagined. It comes from our friends at the media. I'm not trying to say that's it's dominated by either liberals or conservatives, Democrats or Republicans, left wingers or right wingers trying to skew the story their own way, but let's face it, the media is a business and they sell news, the more controversial, the easier to sell stories. Thus the focus on embryonic stem cells.

It's hot. Using discarded embryos to cure chronic disease.
It's controversial. Using embryos that must be destroyed after the stem cells are extracted.

People are hotly divided. The camps are deeply entrenched. This stuff sells news and it's what is reported. Do you know how many stories I've read and watched about Adult Stem Cells (stem cells derived from the patients themselves) where the story talks about about the controversy over EMBRYONIC STEM CELLS even though they have nothing to do with the story. I watched one story where they were reporting on TCA Celllular Therapeutic's clinical trials for spinal cord injury using bone marrow stem cells and it ended with the news reporters introducing a poll asking if people were for or against embryonic stem cells. This is not just bad reporting, it's a terrible sensationalism which turns stem cells into a moral debate while forgetting the benefits that all people can gain from stem cell research.

In America where the debate over embryonic stem cell research SEEMS the most divisive and courts have recently blocked state funding for embryonic stem cell research, you'd think society was bitterly divided. But even this is not true. An Angus Reid Poll from 2007 shows that two-thirds of Americans favour embryonic stem cell research, and a 2009 poll shows that only about 20% of Americans are opposed to any kind of research using embryos. The only place where the debate is divisive is on the TV and in the newspapers, most people want all options explored.

Think about all the coverage about embryonic stem cells and then consider the fact that there was almost NO coverage for the World Stem Cell Summit held in Detroit from October 4 to 6. Had this been an EMBRYONIC stem cell summit I'm sure that all the press would have been there. But seeing that only a few of the 150 presenters and speakers were talking about embryonic stem cells, the press stayed away from this world showcase of stem cell therapies.

So here it is; people did not imagine that stem cell research equals EMBRYOS, it's been put in our minds.

If opponents of embryonic stem research actually used their energy to work on other stem cell cures instead of selling half truths to the media, at least it would lead to something positive. Oddly enough for all the Vatican's opposition to embryonic stem cell research, they actually do something positive by funding research into adult stem cells. The Vatican isn't just going around condemning stem cell research, they're putting their money ($2.7 million dollars) where their mouths are and funding research at the University of Maryland.

I hope we can someday see: one, more honest in the media over stem cell research, and two, more action on adult stem cell research from those who oppose embryonic stem cell research.

30 September 2010

And I thought the atom bomb was perfect

Just when I thought that the making of the atom bomb perfectly exemplified what can be done with full government backing, coordination, and funding, I realized I only had half the story.

Yes, I was right about how the use of the full force of the state built the atom bomb quickly, but what sense is there in having a nuclear device if you can't bomb the hell out of people? It would be like having a stem cell based cure for blindness and not using it to heal the blind (see here for more information).

No, the story after the bomb was built shows even more clearly how the government played an even more centralized role in both strengthening the destructive power of the bomb and ensuring that the bomb would be delivered to cause the most death possible.

First they wanted to increase the strength of the atomic bomb itself, so they made the new and improved A-bomb, the Hydrogen Bomb. The first atomic bomb dropped on Hiroshima was a mere 12.5 kilotons (note: Kilotons does not refer to the weight of the bomb, but it's equivalency in TNT. Therefore the one bomb dropped on Hiroshima was equivalent to dropping 12.5 kilotons of TNT). The hydrogen bomb, developed shortly after the atomic bomb, made the KILOTON value obsolete. The hydrogen bomb raised the count to MEGAtons.

But again, what sense is a few megatons if you're not able to use them?

So in the 1950s the Americans and Soviets went on a frenzy to see who could bomb their enemy the best. They built long range bombers and a wide range of tactical nuclear weapons including nuclear laced artillery shells, short range missiles, and even land mines. Finally Intercontinental Ballistic Missiles in the 1960s allowed each of the superpowers to unleash nuclear weapons with little warning.

Thousands of hydrogen and atomic bombs. So what!
The means to deploy those weapons. So what!

What was needed now was an efficient plan to kill with.

So in 1960, in the last months of his presidency, then-president Eisenhower, along with the military, devised SIOP, short for Single Integrated Operational Plan.

Until that time, each branch of the military - the Army, Navy, and Air Force - had been building their own nuclear weapons with their own war plans. Eisenhower saw it clearly. You can't have everyone running around willy-nilly with nuclear weapons, it was inefficient, what was needed was a COORDINATED plan of attack. SIOP did just this.

A few examples.

If the Soviets attacked the US or western Europe, the US would then launch ALL its nuclear weapons against the Soviet Union, Eastern Europe, and red China. SIOP also went as far as to predetermine which weapons and how many of them would be dropped on each target. One thousand four hundred and fifty nine bombs, totaling 2164 megatons - against 654 targets killing 175 million people.

Under the plan, a Russian city the size of Hiroshima would get three bombs: one 4.5 megaton bomb and two 1.1 megatons bombs just in case the first one was a dud. More than 600 times the explosive power of the measly 12.5 kilotons dropped on Hiroshima. A 27 September 2010 article in Time magazine said of the plan, "The calculations that went into the plans were hair raising, resulting in tremendous overkill."

Albania, a tiny country which was then breaking away from the Soviet bloc warranted a MULTImegaton bomb just because they had a large air-defense radar. While explaining the Albanian plan to the new Kennedy administration a general told the new Secretary of Defence, Robert McNamara this. "Mr. Secretary, I hope that you don't have any friends or relations in Albania, because we're just going to have to wipe it out!"

Now that's a plan! The device, the means to deliver it, and a plan for delivery.

How about stem cells?

19 September 2010

Democracy and disease

I'm finally back at home. It's great to be back with my wife and kids. I have to admit that I was a  little nervous at first but things seem to be going very well. 

The solitude of the hospital probably did help my writing a little, but I am determined to keep this blog going now that I am home. It may be a little more difficult to write with my kids running around the house, but I hope this new normalcy will improve the stories that you see in this blog. 

Thank you for all your kind words on my discharge. I wish you all health and happiness. 

Let's start.

We are all rightfully outraged when we hear of people, especially kids, dying of totally preventable and curable diseases in third world countries. Illnesses such as measles, diarrhea, and pneumonia that don't kill our own children in developed nations, and malaria which is not even a concern for most of us, kills eleven million children annually. 

Most of the deaths are concentrated in a handful of countries. Just six countries account for half of worldwide deaths of children younger than five, and 42 countries for 90 percent of deaths.  India, Nigeria, China, Pakistan, the Democratic Republic of Congo and Ethiopia alone suffer 5.5 million child deaths a year. Altogether, about 41 percent of child deaths occur in sub-Saharan Africa, and another 34 percent in South Asia.

The deaths stemming from these diseases are not a scientific or a financial problem. The science exists to stem these diseases and even the poorest countries could deal with the financial side if they were accountable to their own citizens in how and where money is spent. Simply put, these deaths stem from a lack of democracy in these countries. Of the six countries mentioned in the paragraph above not one ranks as a full democracy according to the Economist's Intelligence Unit's Democracy Index.

What do I mean by a lack of democracy? 
The governments of these nations don't care that their citizens die, the lives of the poor are cheap, AND because their own citizens are not in a position, due to the authouritarian nature of their countries' regimes or because of the the poverty inflicted on them, to change the situation. This is not some kind of highfalutin theory of democracy, this is reality.

What would happen in Canada or in the UK if children died because of diarrhea? Would parents allow it? No, and they would be in a position to force their governments' hands. Parents in authouritarian countries do not have this choice. They cannot demand that their governments act. You can! 

So what does this have to do with stem cells and spinal cord injury, or stem cells and multiple sclerosis, or stem cells and blindness? It's the same - a simple question of democracy. 

How can I say this? 

There are no real scientific or financial barriers to stem cell cures. Sure they may take some adjustments but they are here, or at least very very close. There has been progress with embryonic stem cell research, but also much more progress with adult stem cells, but as long as the debate stays focussed on the difference between these two kinds of stem cells, the longer that regular people will stay away from the discussion. Not because most people have a problem with one kind of stem cell over the other, but because the arguments sound too technical and scientific for regular people to involve themselves with. 

Our goal needs to change the stem cell debate from a scientific question to a democratic question.

Unlike those in countries which have no real democracy, people in the leading democracies don't need to remain silent over their wishes to see stem cell research and stem cell cures continue. No one will snatch you away at night for talking. The cure is right there where your voice is, but if you do not raise your voice, the cure will not reach people but will stay focussed on rats and monkeys.

So am I selfish for demanding a cure for chronic illness when diarrhea is still killing children in Africa and south east Asia? No, because one doesn't have anything to do with the other. High wages in western countries do not lower wages in poor countries, the fact that you have a high definition TV does not prevent a poor child from going to school, and the focus on stem cell cures does not prevent a cure for diarrhea deaths.

Actually, demanding that medicine and science is opened up to regular people's opinions will get us not only stem cell cures but will, if we focus on movement correctly, on making sure that people in poor countries are emboldened to fight their own undemocratic regimes and demand real changes in their health and financial situations.

Whenever you think I'm crazy for making such a demand for a cure, and whenever you think you're crazy for believing that such a demand can be met, remember the line from Lorenzo's oil that I mentioned two posts ago.

"Remember the Manhattan Project? Twenty eights months. It took them twenty eight months. Now, if scientists can come together to build the atomic bomb,...surely..."
If a country like North Korea, where people are dying of hunger, can build an atomic device, it shows that 
money is not a barrier to science. In North Korea, people do not have the right to raise their voices and 
demand that money be diverted to meet people's needs, but where most of you are reading this blog from, 
you do have that right. Let's not waste it.

Stem cell cures are around the corner if you demand it. What we need to focus on now is how to raise our 
voices together.

15 September 2010

Dedicated to all of you at M.Hospital! Japanese version launched

Japanese version at www.Kansaibo-Genbaku.blogspot.com

Today (16 September 2010) is the launch of the Japanese version of StemCells&AtomBombs 【幹細胞&原爆】 at www.Kansaibo-Genbaku.blogspot.com and plans are in the works for the Russian, Italian, French, Chinese, German, and Romanian versions.

As this is my last day in the hospital, I find it appropriate to dedicate my new blog to all the people at M. Hospital who have helped me over this past year.

To all of you at M. Hospital, I would like to say thank you from the bottom of my heart. I wish I could have told you all directly, but had I have tried, the tears would have washed the words from my mouth and you would have never heard my thank you.

I know that I have spoken about stem cells with many of you during my days in the hospital. I hope you have the time to read this blog. There will be regular updates and I would love to know that you are reading my words so we can continue our conversation. Signing up to receive these site updates will make sure that we are always in touch.

Spread the word in whatever language you can.
Let's remember that the whole world is not English. Do you speak another language? Would you like to become a volunteer translator for StemCells&AtomBombs? Send me an email. That's how it works - people helping people.

10 September 2010

The G20, Martin Luther King, and Invivo Therapeutics

"When we look at modern man, we have to face the fact that modern man suffers from a kind of poverty of the spirit, which stands in glaring contrast to his scientific and technological abundance. We've learned to fly the air as birds, we've learned to swim the seas as fish, yet we haven't learned to walk the Earth as brothers and sisters."

I think Martin Luther King may have summed up my entire post in five lines of eloquence, as compared to the 300 lines I got to write to make the same point. 

First about the scientific and technological abundance part.
  • Geron Corporation will start human trials for spinal cord injury using embryonic stem cells.
  • TCA Cellular got the green light for human trials in spinal cord injury using adult stem cells and has already started.
  • Human trials for ALS (Lou Gherig's Disease) using neural stem cells are starting.
  • The blind are having their vision restored using stem cells in Italy and Australia.
  • Stem cells and Multiple Sclerosis.
  • Stem cells and heart disease.
  • Stem cells and...
These therapies and trials can be found by simply searching for the disease name + stem cells.

The list of diseases that may be treatable using stem cells grows and grows every day. The therapy that I would like to discuss today is for spinal cord injury from a company called Invivo Therapeutics (which believes that stem cells may not be necessary for curing spinal cord injury but they have done the stem cell tests, too) founded by medical entrepreneur Frank Reynolds

Before I go any further I am going to state unequivocally that I would love this therapy to succeed and if Mr. Reynolds called me up and asked me to try it out in one of their human trials that are scheduled for next year, I would jump (not literally because I can't) at the chance. Please understand that any criticisms that I am about to make are not directed towards Mr. Reynolds or his company.

I'm not going to go into the science behind this because you can read about it yourself but I would like to state two truly remarkable things about this therapy. One, it is the first therapy for spinal cord injury to be tried on a monkey, and it works. Two, they will bring this product to market for only $12 billion dollars. 

NO! NO! NO! Not $12 billion, $12 MILLION, which according to Mr. Reynolds is, "very much unheard of in the medical community today." According to Invivo Therapeutics, this $12 million dollar investment could pay off $1 billion dollars if the human trials are successful.

Now the haven't learned to walk the earth as brothers and sisters part.

Why has Mr. Reynolds and his team, of what he calls mostly grad students, been able to pull of something of this magnitude for pennies, when no government has? 

Is it because governments are not innovative? 
Well, look at the atomic bomb.

Is it because the cure is to expensive to develop? 
Actually, Mr. Reynolds has proven that it can be done quite cheaply. Furthermore governments are already funding a lot of work, but in many cases are only funding the future profits of private companies. Also, care for people with spinal cord injuries costs much, much more than a cure for spinal cord injury (see more information at the bottom of this post).

This is simply, as Martin Luther King said, because we "haven't learned to walk the earth as brothers and sisters." Governments are not meeting their obligation to their own citizens to make the people's needs top priority. Governments, because of ideology not fact, will let their own citizens suffer rather than give into the logic that private enterprise cannot solve all problems. 

This failure costs us money today and will cost of more money in the future. It will make the cure more expensive in the end, and more importantly it will increase the amount of time it will take to get the cure to the beside because as private companies compete for the golden ring, they will not share data that could hasten the cure.

For the sick, this failure costs much more than money. 

Spinal cord injury and all the other diseases that will be cured in the future will not be cured by one therapy. It will be a combination of different therapies, and that means cooperation, as opposed to competition, will hasten the cure. Private companies will not do this. Private companies have a duty to their investors to make profits, and rightfully so. This also means that one small failure could also lead to their investors pulling away, leaving the research to rot on the tree. The leadership to cure disease through cooperation, or as Dr. King calls it, "walking the earth as brothers and sisters," can only come through government, which in the end, is us.

If world leaders are not willing to walk hand in hand with their citizens, then it is up to us to use our collective power to drag them kicking and screaming behind us.

A few posts back I said that I would offer an efficient, alternative way to finance, administer, and plan stem cell research. It's something that you and I, as brothers and sisters, could work on together.
  1. The G20 countries set up a fund based on their GDP totaling $29 billion, the same amount as the atomic bomb cost, and also set up a G20 Secretariat for medical research.
  2. This fund be used to pay for all the research that is going on at universities and at private companies which agree to cooperate fully in sharing data and agree that all patents are held collectively.
  3. That scientists are given regular access to each other to do the sharing that will bring us the cure.
Well, the G20 will meet again next year. So I/we have a lot of work to do in the meantime.

On a different note, I recommend watching the movie Lorenzo's Oil starring Susan Sarandon and Nick Nolte. I got turned on to this film my reading about Frank Reynolds who watched it when he himself was paralyzed and inspired him to look for the cure.

It's a true story about a mother and father of a boy with ALD. At that time, there was no way to stop the degeneration caused by the ALD so the mother and father started looking for a cure themselves, and found it. They were too late for their own boy as the myelin sheath that insulates nerves of the central nervous system allowing the nerves to conduct impulses was already damaged. So the parents started to look for a way to remyelinate the nerves.

For me the most telling part of this movie is right at the end (3:12) when the boy's father is discussing with a researcher. The researcher is telling the father about the slowness of science and that scientists don't like to collaborate. Nick Nolte, the father, answers:

"That's not necessarily so, because remember the Manhattan Project? Twenty eights months. It took 
them twenty eight months. Now, if scientists can come together to build the atomic bomb,...surely theycome together to remyelinate some puppy dogs?" (The original tests were to be done on dogs.)

From The University of Alabama National Spinal Cord Injury Statistical Center - March 2002 (from SCI-INFO-PAGES)
Costs of Spinal Cord Injury in the USA

  • Length of initial hospitalization following injury in acute care units: 15 days
  • Average stay in rehabilitation unit: 44 days
  • Initial hospitalization costs following injury: $140,000
  • Average first year expenses for a SCI injury (all groups): $198,000
  • First year expenses for paraplegics: $152,000
  • First year expenses for quadriplegics: $417,000
  • Average lifetime costs for paraplegics, age of injury 25: $428,000
  • Average lifetime costs for quadriplegics, age of injury 25: $1.35 million
  • Percentage of SCI individuals unemployed eight years after injury 63%. (Note: unemployment rate when this article was written was 4.7%)