Who’s the daddy now, Mr Neurone? smile_regular

And Mr Neurone replies “you can be as cocky as you like because I’m still going to get you in the end” smile_devil

Oh smile_sad

Today (3rd August) marks the 1000th day since I was diagnosed with Motor Neurone Disease smile_party. It is indeed cause for celebration because back when I was first diagnosed I was none too sure whether I would still be around even a year later as I knew so very little about the disease and nobody could give me a clear answer. But here I am still rolling along and singing a song (of sorts), a bit worse for wear these days, but generally happy to be alive and trying to make the best of an ever worsening situation.

But oh my, how my life has changed in those 1000 days. This awful disease has turned my world upside down and forced me to go from a life of independence to one of complete dependence. It’s been a hell of a ride so far and at times I struggle to keep up, let alone stay one step ahead. And on the few occasions when I have dwelt on what has happened to me I feel an overwhelming sense of sadness and heartbreak at all the physical skills that I have lost and what they enabled me to do. The human body is a remarkable product of evolution when it is working properly – if only it would stay that way. But now after 1000 days of muscle weakening, wasting and paralysis I have become disengaged from the material world around me. I don’t touch anything anymore. I have become a passive observer: I talk to my computer, I watch my TV, I listen to music, I read off a screen. One thing’s for sure, I wish I’d backed myself up a few years ago before all this started. I could have done a full restore back to my normal self, ha ha.

In the time I’ve had this disease I’ve had to say goodbye to so many of the things that gave my life meaning and enjoyment and now they are nothing more than a distant memory. But hey ho, life goes on, just in a different form. And it is this ‘different form’ that I am now trying to adapt to. In a sense my world has now contracted down to a chair that I cannot even control myself so I now have to wait until people appear in my field of view rather than turn to greet them. At times it is incredibly frustrating, and although people can sympathise, I don’t think they can truly understand, any more than I could, unless faced with a similar situation. The trouble is my mind is still working flat out at 100% even though my body (at the muscular and motor control level) has just about given up the ghost, and the technology I use simply cannot keep up with me, hence the frustration.

I think that to coexist with something as devastating as MND you have to constantly reinvent yourself to suit the changing situation. I also believe that it is imperative to keep the mind fully occupied, and for me this has become a sort of defence mechanism shielding me from dwelling too much on what has happened to me. I’m also extremely grateful that it has so far not affected my voice (except in volume), although I’m sure there are some people who might wish it had whenever I’ve had to battle my case to get things done. But although it might not have made me popular at times I’ve had to do it or risk having to accept what I’m given or how I’m treated which isn’t always what I want. Had I not intervened in the ways that I have done since being diagnosed then I’m certain that things would have been very different… and far worse.

By far more than anything else it has been my legs and their gradually weakening ability to support my weight that has dominated these past few months. During the weeks leading up to my hospital admission I was getting very stressed at the mere thought of trying to stand up and walk the short distance between bathroom, bedroom and study. Every time I attempted it I could feel my legs complaining at the stress I was putting them under and it would often feel like they were about to collapse from underneath me at any moment. In a sense it was a relief to finally move out of that dangerous intermediate phase in which I was neither fully mobile or fully disabled. At least now I am removed from the fear of taking a nasty fall and suffering a terrible head injury.

My recent five-week stay at St Michael’s Hospice has perhaps given me a taste of things to come and if I was under any apprehension about visiting a hospice before then those fears have now been dispersed. It has been quite an experience for me (in a very positive way).

The other thing that has caused me no end of stress these past few months has been the continuing saga of trying to get an extension built and what it has cost me in terms of restricted movement whilst I wait. I think if I could do anything different at all, or at least pass on some advice to those newly diagnosed, it would be to start planning for severe disability straightaway. Don’t wait until the legs start showing signs of weakening because it can take an incredible amount of time to go through all the grant approval, planning and construction stages. I started flagging my concerns regarding mobility early last year and here we are in high summer the following year and I still have yet to get a single brick laid. Of course on the flip side of this I’m not sure how easy it would have been to get the Disabled Facilities Grant a year earlier when my legs seemed perfectly normal and I was able to walk quite a few miles each day.

Moving on from where I am now though and I am under no illusions that it is going to be easy. MND is a very complex disease that places severe demands on all those who are and will be caring for me in one capacity or another. My respiratory system is already weak and a year ago I was told that it was on the bottom end of okay. My breathing definitely feels weaker than it did a year ago but thankfully I can still breathe unassisted although at times it does feel like somebody is tightening a belt around my chest one notch at a time with each passing month. And as time goes by I’m going to be more and more at risk of chest infections and this can be potentially fatal so I will need to be very careful, particularly with the people I come into contact with.

This D+1000 post is the last of the D+ series. I feel that they have now achieved their aim which was to document all the changes, from the very early stages of the disease when I still had all my abilities, to a time when I would be fully dependent on others. As I am now at that stage I feel that there would be little point in continuing as that part of my story has now been told and what comes next is really more a case of learning to live with severe disability on a day by day basis. I feel that my regular calendar entries can serve me better in that respect. However, if I should be so fortunate to live another 1000 days then I daresay that I might be tempted to write a D+2000 post! In the meantime I will still continue with the yearly anniversary posts.

I made it ! Me, today! (Thanks Alli for taking the photo)


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One Response to D+1000

  1. Jodie says:

    Mark, I just wanted to let you know that I enjoy reading your thoughts and am glad you make the effort to share them. They are inspiring and thought-provoking, and many things you say I think can be applied to all sorts of life situations. It’s amazing to think that although you are physically isolated you can still share your thoughts and experiences with people all over the world who are able to benefit from reading them. I love the power of technology & you are a great example of using it to triumph over adversity. Thanks for your continued inspiration.

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