Monday, June 21st 2010

When technology fails

One of the (many) problems that comes with having MND is a reliance on technology. That reliance will steadily increase right alongside disease progression. During the early stages my adapted or specialised equipment was minimal and I was normally able to find workarounds to problems using shall we say ‘creative thinking’. This year however things are somewhat different. The lack of mobility, fading strength and encroaching paralysis makes it very difficult for me to do anything that requires a physical interaction. Thank goodness then that for practically all my waking hours I have a team of carers looking after me. Just as well really as my dependence begins the moment I sit in my office chair and rely on someone to switch my computer on.

These days the computer is never really ‘off’ as it takes far too long to boot up and shut down so I tend to keep it in sleep mode. To bring it back to life simply requires pressing any key on the keyboard. Well I say ‘simply’ but Ann, bless her has elevated this simple morning task to something unique unto herself! This is how it only normally goes… Whilst my breakfast is being prepared I normally like to quickly check my e-mail so I’ll say to Ann “can you press one of the keys please, any one will do”. I then sit there watching her with a bemused smile on my face as I visualise the cogs and gears whirling way inside her mind as she tries to work out the next letter in the first, middle or last name of the next member in her family whose name she is working through! One thing’s for sure, Ann may not be learning much about computers but I’m sure learning a lot about her family tree smile_regular.

Anyway for a couple of hours each day I have some time to myself and it is in this time I normally work on things of a more private nature – things that I may not want overheard as I dictate them into my computer. So in that time it’s just me… and the technology. Now I have to say that normally my Sony VAIO laptop running Vista is very well behaved and it is very rare indeed for it to completely lock up. But that is exactly what it did halfway through the afternoon as I was dictating into the microphone. The cursor had frozen, the desktop clock had stopped, my speech recognition software wasn’t responding, and I could get no response from my foot pedals. I stared at the screen in utter frustration. Both my arms were resting on my knees as it had become far more comfortable for prolonged periods than supporting them in the ergo rests. I needed to reset the computer and do that I would have to power it down and then switch it on again. The power button was a tantalising 12 inches away from my fingertips, but also unfortunately about 4 inches higher. A trivial distance to be sure, but for me it might just as well have been a mile. I tried using a technique that had served me well in the past i.e. bending down low and picking up the thumb between my teeth and then lifting the whole hand and arm and dropping it into the arm support. But I soon discovered that I could no longer do it because a) I was wearing my MND neck support which makes it very difficult to bend my head down too far, b) my hands were faced down on my legs and rotational movement in my arms is so poor now I have a near impossible task of flipping my hands over by myself, c) I don’t really have the strength anymore to lift a heavy arm in my mouth.

Even if I could have overcome all these obstacles I still may not have been able to reset the computer as you need to press and hold the power switch for a few seconds. I discovered very recently that I have so little strength in my fingers now that I can no longer operate my phone very reliably. Possum are supposed to be supplying me with a hands-free phone that I can operate via a foot switch but it’s well over a month overdue. So without even the phone I couldn’t call my next-door neighbour (who are often home) to ask if they could pop next door and press a button for me!

It’s at times like this when I truly feel helpless. I’m heavily dependent on my computer and the loss of even an hour, as was the case this afternoon, is extremely frustrating when time it is so very precious to me. I breathed a huge sigh of relief when Jan arrived.


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