5 Years Ago Today....

It is exactly 5 years since I received my official diagnosis; November 8th 2007. This puts me in the 20% survival group. Apparently 10% survive 10 years so having lasted 5 years, I have a 50% chance of lasting another 5! Anyone reading this who has lost someone to MND within the more typical timeframe might consider me extremely fortunate. And maybe I am, but another 5 years living like this is going to be very tough on me and the people around me.

My progression hasn't been a steady decline but a fairly rapid one for 3 years followed by 2 years of almost no deterioration (although some of the very subtle changes have had significant consequences; losing the ability to drive the wheelchair being the most significant). This pattern isn't unheard of although such a long hiatus is unusual and it does seem strange that it's relented without any apparent reason.

I just wish this plateau had occurred earlier because living like this is so unpleasant. Being confined to a wheelchair because of being unable to walk is an absolute breeze compared to the other losses and it's last on my "fantasy cure" wish list behind talking, using my arms and eating & drinking. I consider being unable to walk a mild inconvenience in comparison. Although at my diagnosis consultation 5 years ago, being told "confined to a wheelchair in 12 months is possible but almost certain in 2 years" was devastating. It just goes to show you how 'acceptance' is such an important approach with this disease. After 5 years I have certainly, although not consciously, changed my outlook from "dying from MND" to "living with MND". My thoughts are no longer dominated by thought of dying but instead I just remind myself occasionally that this plateau isn't indefinite.

With the possibility of living or rather existing like this for some time, I know I should fill the days with something more meaningful. Despite my criticism of Stephen Hawking, I have to give him credit for what he has achieved and it does make me feel guilty that I am wasting the time I have. I think my coping strategy is partly to blame. When life has for 90% of the time shrunk to the confines of sitting in one place staring at a screen, haven't had a proper conversation for 3 years or tasted food or drink for as long, I think it's inevitable that one's psychological state changes. I have always thought that the song title Comfortably Numb is the best description. A state of mind that is doesn't register disappointment, frustration or sadness. One that has become conditioned not to care too much about anything, because you don't miss something you don't care about. It's kept me sane but at the cost of becoming apathetic and devoid of enthusiasm.

Theoretically I can do almost anything on a computer that anyone could, albeit slowly. But mustering enthusiasm is difficult. One thing I have been doing is helping the boys with their latest obsession; a computer game called Minecraft. It's obviously very addictive and involves building worlds with friends online. At least it isn't violent. But there are countless modifications and add-ons available which involve varying degrees of complexity to install. Recently I setup their own server so they can host a world which their friends can connect to, which has given them some kudos. I would rather they didn't spend so much time on it but it's about the only thing I can help them with and it's nice to see them excited about a new mod I have installed. I would like to teach them how to do the modifications themselves but although I can write instructions, the process can vary and eyegaze typing is just too slow in a training situation, especially when you are dealing with an 11 year old's patience levels!

So it's not quite solving the mysteries of time and space but it gives me a sense of purpose.

As for the future; well statistically there is more chance of surviving another 2 years now than there was in 2007. And I am not sure that's necessarily a good thing.

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