I recently got a message on Facebook from the President of Parent Project Australia an organisation for the parents of children with Duchenne muscular dystrophy. This message started a conversation about various treatments for muscular dystrophy.

Duchenne muscular dystrophy is a genetic disease that mainly affects males. It is a degenerative muscle wasting disease. At birth a child with the defective gene appears to be perfectly normal. A child will slowly lose strength and they stop walking at age 9 to 12. At about age 15 weakening can begin to slow. In some cases the heart is affected and this can result in heart failure – sometimes suddenly. But if the patient is lucky their heart will remain relatively unaffected. Respiratory muscles can also fail, but there are treatments such as mechanical ventilation that stop this being a fatal symptom.

As many of my readers will know I have Duchenne muscular dystrophy I am now 29 and use a ventilator at night.

For this next bit to make sense you will need a bit of background information: In your lungs you have two different types of muscles: voluntary and involuntary. Voluntary muscles are used when holding your breath or when you take a deep breath. Involuntary muscles are the ones allow you to breathe without thinking about it, without these muscles you are unable to breathe when you are asleep. At around the age of 20 some boys with muscular dystrophy lose their involuntary lung muscles that allow them to breathe during sleep. Without mechanical ventilation the patient will die. This is exactly what happened to many of my friends.

You see it wasn’t until 10 years ago that ventilators were widely used to treat muscular dystrophy. It was commonly believed that anyone with muscular dystrophy would die before their 21st birthday. It can take a while before a change such as this is reflected in the medical textbooks. Duchenne can result in an early death, but this is not true in all cases. Some doctors continue to believe that Duchenne is a terminal illness.

I feel this belief is reflected in the type of treatments given to boys with muscular dystrophy. The focus of Parent Project Australia is in early diagnosis and early intervention. By intervention they mean physiotherapy and drugs. It is the drugs bit that I’m concerned about. Children as young as four are given steroids in an effort prolong the time they walk. I think parents and doctors are thinking about the short-term benefits and almost completely ignoring long-term ones. There are many studies that indicate children given steroids do walk longer, but, just look at the list of side effects: weight gain, hair growth, mood changes, stunted growth, decreased bone mass, acne and cataracts. I find this more than a little bit disturbing. There are no studies that I know of that steroids improve the long-term survival of someone with muscular dystrophy.

Just think what it would be like to be nine years old, you are progressively getting weaker and you know that you are going to be a wheelchair soon. This very stressful time often results in sometimes extreme behavioural problems – I know I’ve been through it. I can just imagine what taking a drug that has its own side effect of extreme behavioural problems would do. Early childhood is a very important time for someone’s emotional and psychological development. I feel this treatment could damage a child’s future prospects.

If you are a parent of a child with muscular dystrophy giving them steroids is not necessarily the best thing. You will make very hard choices had and you will make mistakes. It is important not to feel guilty about the decisions you have made or will make whether you choose steroids or not.

20 years ago when my brother and I made the transition from walking to wheelchair our family was given some valuable advice. Our parents were told not to put pressure on us to walk as this would just make it even harder for us and could even result in injury. We received our electric wheelchairs nearly a year before we actually stopped walking. This allowed us to adjust us to the idea of using electric wheelchairs and we learnt how to drive them before we needed to use them every day saving many plaster walls from certain doom. My brother and I both feel that this is the one piece of advice that made the most difference to us during this troubling time.

The other day my brother and I was watching something about the US presidential election. My brother said to me isn’t it great that Ralph Nader isn’t running.

Ralph Nader is a consumer advocate famous for writing the book Unsafe at any Speed. This book shone a light on the terrible safety record of cars built at that time. In a response to this cars have become increasingly safer. You could argue this book has saved more lives than any other in history.

He sounds just like the sort of person you want to be president. Ralph has run four times for President running as a progressive candidate, sometimes for the Greens others as an independent.

The problem is all the people who vote for Ralph would probably vote Democrat if he wasn’t in the race. Unfortunately, in America they do not have preferential voting. A vote for Ralph does not trickle down to a vote for Obama. Ralph only ever gets one or two percent of the vote. This means that everyone who votes for Ralph is not voting for a candidate that actually has a chance of winning – it is a vote wasted. It splits the vote and gives the Republican candidates a much bigger chance of winning.

In 2000 George W. Bush only barely won. If Ralph Nader wasn’t in the race chances are Al Gore would have been president and the world would now be a very different place. It is a similar story in 2004 John Kerry’s presidential hopes were dashed (W. probably would have won anyway but it didn’t help).

George W. Bush reserves a special place in his heart for Ralph Nader.

Ralph Nader has again threatened the chances of a change in the White House. He has chosen to run for president in 2008.

It really makes me sick how a hero like Nader can do such a pathetically stupid, counterproductive and downright totally fucked up thing – not once, not twice, but four times.

Ralph Nader shut the fuck up! Actually think rationally: All the people saved by Unsafe at any Speed – all the people killed in the second Iraq war = Nader still a hero. Hmmmm…Nah, fuck off and die Nader!

As some readers of this blog will know my brother runs a Web development business from home, Constitution Computing. We both started making websites way back in 2000. Most sites back then were static and hard coded. In the case of database driven Web sites we coded the site from scratch.

Nowadays this is not the way things are done. Websites usually use a content management system, the problem is there are hundreds of them on the market. We have also been bitten on the arse by content management systems before – where numerous inexplicable bugs would appear for no apparent reason.

I have used a content management system for my blog for many years. When I first started I tried to develop my own blog software and in the end I gave up because other people had already done it for me. I moved on to a program called Movable Type. This program used a combination of Pearl, PHP and CGI. It was a little bit of a disaster because of it. Movable type was only a tiny bit easier than operating my own blog software.

Finally I moved on to WordPress 3.0.2 – by far the best blog software I’ve seen. The only problem with using popular software is that it can sometimes be abused by spammers. The one thing I never had to worry about when running my own Web software is that only I used it – there was no point for spammers to develop spam bots to target only one site. Spam was a constant battle on both Movable Type and WordPress. Track back spam was by far the worst on both platforms.

Yesterday I decided to install the latest version of WordPress. Upgrading was a big thing for me as it has always caused innumerable problems later on. I’d also just updated the theme on my website – a surprisingly fiddly all day process. Upgrading could potentially negate all my hard work, but it needed to be done.

I am a firm believer in pessimism. Contrary to popular belief pessimists are far more likely to be happy. I always prepare myself for the worst. This way if the worst does not occur I am pleasantly surprised, if it does, I have the satisfaction knowing I was correct. It’s a win-win.

I backed up my old WordPress installation and then deleted it off the Web server. I then uploaded the latest version of WordPress. In the browser I then went to the update page. It immediately detected my old WordPress database and automatically upgraded it so it would work with the new version. I went to my website and it worked!

At this stage I was still a little worried as my nice new theme had been deleted by the new WordPress installation. The fix for this was incredibly easy. My layout was an edited version of the WordPress default theme. I simply went to where I had backed up my old WordPress installation and changed the name of the theme from default to christheme. I uploaded it and then went to the themes page in WordPress admin selected the theme and it worked.

I was then overcome with a feeling of pleasantly surpriseadness.

Anyway I told my brother about my experiences with WordPress. This set us wondering whether content management systems have reached the maturity we need to make Web site development easier?

We have been looking at Joomla and Drupal both open source content management systems. It’s a difficult decision.

If anyone has any experience with content management systems we would love to hear from you in the comments.

I think greed is one the most damaging of the seven deadly sins. Greed has the potential to destroy the thing you most desire. Greed on a personal level is probably not that damaging its when corporations get in on the act when the carnage starts to happen, for example Facebook.

I used to think Facebook was the greatest of all social network sites. The thing that makes Facebook one of the most popular websites on the net is its ability to install third-party “applications”. These applications mean that their website gets content provided by a third party with the operators of Facebook having to a minimum of work. The makers of the applications get to advertise directly to Facebook users. It is a win-win situation.

The problem occurs when the users install the applications. The application developers want their application used by as many people as possible. The more people the more money they receive from advertising. When installing an application you can invite other people on your friends list to use the application. Every time you receive an invitation it adds it to your request list. When I first started using Facebook you could skip the friend invitation stage and just start using the application, but now Facebook forces you to invite 20 friends before you can use the application. This results in a shit load of unnecessary spam.

I barely have enough time to control e-mail spam and blog comment spam – now I have to deal with Facebook spam as well. Facebook has so many other great features that I will continue to use it – but why do they have to abuse their users like this. Stupid decisions driven by corporate greed could destroy something like Facebook. Users aren’t a commodity they are people – without the users there would be no website. Try showing us a little bit of respect.