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.