2 Years of Blogging!

Celebrating two years of publishing to the web!

I’m in a bit of a celebratory mood today (Monday 15th). My blog is two years old! smile_party Wow, has it really been that long since I started writing about my experiences? I guess so judging by the volume of posts that have accumulated. Revisiting that first post again did make me chuckle a bit when I stated that it was not my intention to write in a journal-like day-by-day fashion because of course that is exactly what has happened as the blog has gradually transformed itself over the past two years. In fact thinking about it further the blog postings have increased as the disease itself has progressed, which consequently led to more to write about.

Looking back I can now see that setting up the blog was one of the best things I did. It has become a surrogate for work allowing me to keep my mind active and to give me an outlet to be creative and in control of something. Why? Because it is important to appreciate that MND affects the body and not the mind so ultimately it will only be my mind that I have left. I therefore want to make sure that this part of me continues to get used. Perish the thought that my mind would ever lay idle alongside my body!

I’ve tried to keep the blog fresh looking by continually introducing new elements and looking to see what can be improved. What started out as a text-only blog with a gallery of photos has evolved into something with a higher degree of pictorial content; some taken direct from a digital camera, whilst others have been created by myself using a variety of clipart and graphical tools. It’s these kind of things that I enjoy doing although I have to admit that in recent months they are becoming increasingly difficult to do. Adding the sidebar with links to various resources was another attempt at expanding the scope of the blog and offering further information to those interested in delving deeper.

But the biggest change to the blog took place last summer, in fact without it I could not have continued posting in its current form. But it is also the most transparent change I’ve made as you can’t actually see it directly. I am of course referring to the transition from typing to dictation using speech recognition software. I started to get really worried halfway through last year about how I was going to control my computer. My hands and arms were becoming increasingly difficult to move and as the weeks went by I was able to type less and less sentences without feeling out of breath through the sheer effort of trying to fight against paralysis. In a bizarre way it was mimicking what had been happening to my legs i.e. as the weeks went by I was able to travel a shorter distance from the house. The Dragon Naturally Speaking software supplied by AbilityNet and kindly funded by the MND Association has enabled me to continue using my computer but now for about 95% of the time using only my voice (I’ve got my fingers firmly crossed that I don’t lose my voice!).

Last November to coincide with my second anniversary since diagnosis I launched my audio blog designed to run alongside the main one. These are basically audio versions of my text postings and will serve the purpose of highlighting any deterioration in my voice over time. And purely from a vanity point of view they’ll preserve a little part of me that hasn’t so far been affected by MND.

One immediate change that you will have noticed from early in the month is the inclusion of an introductory welcome piece, something which the blog has been sadly missing. I’ve also taken the opportunity to write a short piece on what motor neurone disease actually is. Both of these new pieces will sit directly ahead of the blog and will thus introduce myself and the aims of the blog, followed by an overview of the disease.

Hindsight of course is a wonderful thing and looking back over the blog in its entirety there are a few things which I wish I had done differently, started earlier or even added which I didn’t. For instance I really wish that I could have added photos of all the people I have met along the way. But the problem was always not having anyone around to take the pictures. Even now most of my carers are not very comfortable using my camera (apart from Francesca) so I’m still limited in terms of illustrating the blog. I also regret not starting the audio blog right back at the beginning. Even though my voice as such has not changed it would have shown that I didn’t take frequent pauses for breath in mid sentence as I’m now forced to do. One thing I never got round to doing but thought about a couple of years ago was buying a video camera. I had the idea of using it to document physical changes such as difficulty eating, drinking, writing, walking etc. It’s a pity I never followed up on this one really as nothing would illustrate these difficulties better than seeing a moving image.

As for the future the blog will continue for as long as I am able to control a computer in some fashion. There are other technologies out there which I have no need of for the moment but am aware of. As the disease continues to progress I shall be looking into these as I try to stay one step ahead.

And finally, I would like to thank everyone who comes to visit the blog, especially those who have been kind enough to offer feedback, advice and compliments. It really is very much appreciated so thank you very much.

Mark

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One Response to 2 Years of Blogging!

  1. It is really good that you have produced all these brilliant blog entries Mark and it certainly keeps everyone informed on what life is really like for you now. xx

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