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Duchenne Muscular Dystrophy Is Not A Death Sentence

April 23, 2010 at 4:16 pm by Chris

On catalyst last night there was a segment about Duchenne muscular dystrophy and the trial of a new potential new treatment. It is what’s called an exon skipping drug that is supposed to assist in the production of a missing protein called dystrophin.

Anyway, I did not want to speak about the trial in this post.

All the way through this segment they were talking about how there is no treatment no hope and that anybody with Duchenne muscular dystrophy is pretty much going to die around the age of 20.

I am currently 32 and went into a wheelchair even earlier than some of those in the segment. The reason that I am alive is because of a treatment – nasal ventilation. You see, the reason why a large number of people with muscular dystrophy die young is because of respiratory failure. Nasal ventilation is a proven treatment that can keep somebody with my condition alive.

There are always hopes of new treatments. Stem cell therapy for example. Most of these are on the distant horizon the trick here is to stay alive long enough so you are able to have these treatments.

I thought that last night’s segment was the perfect opportunity to show that there is a proven treatment and there is hope. We need to make sure there is awareness of ventilation as a treatment for muscular dystrophy otherwise people die needlessly. All I would ask is 10 seconds just to mention it.

It is good to finally see a segment about Duchenne muscular dystrophy on national television, but I feel the ABC could have gone just that one step further.

Parents need to hear that having muscular dystrophy is not necessarily a death sentence. There is hope.

Categories: Medicine,Muscular Dystrophy,TV Series,Technology | Comments (3)

AQUA The True Colour Of Democracy

April 16, 2010 at 4:09 pm by Chris

I went to see Arj Barker last night with my brother and a few friends. He was pretty funny, but not outright hilarious. He tends to take a long time to set up jokes, but the dividend is usually worth it. In the middle of his routine it was a little unfunny, but towards the end he was funny again. So overall I would give it about 3.5/5.

There was one part of his routine that really made me think though. He has this theory Always Question Unjustified Authority or AQUA for short. I think for the sake of this discussion we could ignore our 10 foot tall reptilian overlords or the fact that Arj thinks we should take a dump in public to demonstrate our rejection of unjustified authority.

Arj does have a point though. We are told what to do almost every waking minute of our lives. We are told what to believe, what to eat and what we can and can’t do. But who gives these people the authority to tell us what to do? We live in a democracy, but how often do we practice it? Someone is always a designated leader we never work out what we should do as a group and do that.

I think the major criticism of democracy is that it is only every three years that we get to make a decision about our government. And then we are only selecting among a bunch of people we don’t even know. We don’t even have a say about policy. Yes we do have a stable government, yes they do a reasonably good job and we have the rule of law. But essentially we still live in a dictatorship.

For example the majority of Australians believe euthanasia should be an option for terminally ill patients. But will that ever get through the Australian Parliament or any Parliament? The federal government even prevented the Northern Territory from exercising its euthanasia legislation. The majority of Australians probably believe that homosexuals should be allowed to get married – with a christen as prime minister that will never happen.

With the Internet becoming a large part of our culture it is time to think about using it to make democracy work better. Countries such as Switzerland already have a limited form of direct democracy where the populace can decide on legislation through referendum. E-democracy is the use of electronic tools through the Internet to participate in the democratic process.

I think it would be great to be able to propose legislation and decide on it electronically. Of course there are some potential risks everybody following some demagogue or tyranny of the masses with minorities being seriously screwed over. But with an educated population and, hopefully, with ignorant fools not bothering to vote it could work.

It is about bloody time we exercised some control over our lives.

Over the next few weeks I might start work on writing my own constitution that uses direct e-democracy and who knows maybe I could use it in one of my science fiction stories.

Categories: Computers,Culture,Funny,Internet,Politics,Religion,Technology | Comments (1)

iPad without ebooks

January 28, 2010 at 3:24 pm by Chris

We are now officially living in the future as Apple have finally released a tablet. The name made many people cringe, as it kind of sounds like something that belongs inside women’s underwear when it is that time of the month.

Anyway, it looks fantastic and I’m sure it will be a success. Everybody will want to use the iPad to read ebooks. Ebooks are not available on iTunes instead you need to download the iBooks application and buy ebooks through that. Alternatively you could still buy ebooks online from Fictionwise or somewhere like that. This is a minor irritation compared to the fact that due to geographical restrictions the vast majority of ebooks aren’t available in Australia.

I want my ebook

According to the Fictionwise website ebooks are not available in Australia due to the way the book publishing industry works. The publishing industry has always worked on the idea that the rights of books could be sold to publishers according to geographical region. This idea is basically incompatible with the idea of the Internet, but these contracts still apply to ebooks. Publishers are legally obliged to make sure their ebooks adhere to these contracts.

The result is different publishers produce the same titles in different countries and each individual publisher needs to release ebooks in the different countries before they can become available.

Even if a company wants to sell all ebooks to Australians they can’t. That is correct: I can’t buy ebooks because I’m Australian.

Legally that is

This forces many e-book fans to download ebooks illegally using filesharing networks. I personally do not feel comfortable doing this and would much rather be able to buy ebooks legally.

There is also the choice of buying them illegally by using a foreign friend’s credit card or using IP masking techniques.

Why me?

The inability to buy ebooks is an irritation for most people, but there are many people who can’t physically read a book. Someone with muscular dystrophy such as myself can have great difficulty holding a book and turning the pages. With an ebook all you need do is press a button or click a mouse. There are mechanical page turners available, but they are very expensive and don’t work so well. I am also not a fan of audio books as it tends to go in one ear and out the other and what about people who can’t hear.

E-book crusade

I am hoping that the release of the iPad will increase the number of Australians wanting to read ebooks and this will force the hand of publishers to be more ebook friendly.

I also plan on finding out as much as I can about the reasons why ebooks are not available in Australia and to fight for the rights of Australians to read ebooks.

Categories: Books,Literature,Politics,Technology,ebooks | Comments (4)

Ouch!

January 14, 2010 at 2:31 pm by Chris

Yesterday, I went to the family doctor for a checkup and some scripts. On the way out I asked the doctor if the swine flu vaccine will be combined with the seasonal flu vaccine, when it comes out later this year. He said he didn’t think so, but he was reminded that my brother and I haven’t had the swine flu vaccine and we had to go back into his office and get the jab.

So an innocent question backfires in such a way that I have to have an injection – typical.

That night I was telling a friend of mine about the unfortunate incident and I got into a discussion about whether vaccinations do more harm than good.

Obviously I believe in vaccinations, but there is a lot of so-called evidence suggesting that vaccination, in particular the combined measles mumps rubella (MMR) vaccine, could result in disabilities such as autism and even attention deficit disorder.

All this started in 1998 from a now discredited study of 12 children originally published in the British medical journal The Lancet that found that the MMR vaccine could be responsible for giving autism to children. It was later discovered that the author of the study was receiving funding from lawyers involved in a lawsuit against the manufacturers of the MMR vaccine.

Many British parents panicked and started failing to immunise their children causing a measles epidemic years later.

So far science has been unable to prove a link. My personal opinion is that there is no link. Even if there is something to the link it must be very tenuous for a not to be picked up. An un vaccinated child is still many times more likely to suffer death or disease than the one in 1 million chance of being disabled by the vaccine.

Many vaccination opponents will point to their children and say they have never been sick even though they haven’t been vaccinated. The only reason why these children do not get sick is because they are protected by all the children around them who are vaccinated – this is called herd immunity. The only reason vaccination opponents have a viable choice not to vaccinate their children is because the majority of the population is vaccinated.

Vaccination definitely makes the world a better place. Before vaccination parents could expect to lose more than 50% of their children to disease. People also forget the polio epidemic that would render people totally paralysed, almost like a type of muscular dystrophy you could catch. Luckily this disease is almost eliminated due to mass vaccination programmes. If enough people fail to immunise their children some of these epidemics could return.

Don’t let a bunch of discredited science stop you from doing what is best for your child.

Categories: Medicine,Muscular Dystrophy,Oops!,Technology,The Media | Comments (2)

Computer Game Becomes Reality

December 7, 2009 at 7:52 pm by Chris

Remember Red Alert and specifically the Soviet secret weapon the Iron Curtain? When activated, the Iron Curtain would make one of the Soviet buildings or units invulnerable for a short time.

Now the guys that invented the Internet, GPS and stealth technology DARPA has created a system that makes vehicles invulnerable to RPG fire. They have called it the Iron Curtain. Being nerds they couldn’t call it anything else.

Categories: Computer Games,Technology | Comments (1)