// ‘I Just Don’t Know’ //

Motor Neurone Disesase affects every single person differently, from the elderly to the young, no two people will suffer from the exact same symptoms. This is why I can’t worry about what will happen to me as I can’t be certain it actually will.

It is already affecting my body, the left side in particular and my tongue. But how and when it will affect the rest of me I can’t be sure.

From one day to the next very little changes, I do get paranoid about things but I’ve learnt to push them to one side. It’s quite amazing how powerful the brain is though.

If I think I can’t use my left hand it becomes useless, but if I’m not thinking it works. It’s not what it used to be though, I struggle to use my fingers properly but I still have some grip strength and can make a fist. I also appear to have lost very little strength in my arm, although I think I rely on my back to lift.

All I can do is tackle things when they occur. When this happens slowly as it appears to be doing you get used to doing things differently, for example getting dressed. I now sit down to put my on socks, it’s not that I can’t do it standing, it’s just easier.

It’s going to be tough but it’s not like my arm is going to drop off tomorrow so I just have to crack on. Some days I can forget that I’m ill but in the future, as I get worse, this will be impossible. With the help of my family and friends I’ll fight this.

Thank you for your support.



One thought on “// ‘I Just Don’t Know’ //

  1. I have a fairly slowly progressing ALS too Paul, was diagnosed 3 years ago now. Like you I’m right handed and feel ‘lucky ‘ that my left hand is worst affected so far. I am still walking ( nice and flat round Retford, where we live) and still working 6 hours a week. Having dealt with the trauma of being given my diagnosis we now focus on fundraising, family and friends and travelling, which we love. We have a caravan and did a sponsored tour of Europe which raised £1,700 in all. We will follow the cycle ride with interest, great for raising the profile of the disease too.
    The way I look at it is people can be struck down without warning at any age. At least we know we need to live every day to the max.


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