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Thanks to all 453 of you who have watched my eyegaze video!
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Monday 30 April 2012
Sunday 29 April 2012
All change again
I am feeling REALLY low at the moment. One of my main carers left yesterday and the other is likely to soon so I have a new carer. I can't describe how utterly difficult, stressful and isolating this is. The person you spent six hours a day with, who knows every detail of many complex routines, who knows every subtle grunt or gesture and is your main companion during the day, vanishes. Then a stranger who knows absolutely nothing apart from the basics which they sometimes remember from a brief shadowing process steps in. The transition gets harder each time as my routines get more complex and my ability to communicate diminishes.
I know its difficult for the new carer and I try to be as patient as possible, laboriously eyegazing additional instructions, tips and the occasional encouraging comment after any stressful scenarios. But the expression "losing the will to live" is, in my case, said without any exageration or humour. And although, even with an established carer, interaction is mainly limited to functional requirements (witty banter is somewhat limited), one still develops a personal/professional hybrid relationship with them (due in part to the intimate nature of some of the care). So when they leave it's impacts emotionally to a degree also.
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I know its difficult for the new carer and I try to be as patient as possible, laboriously eyegazing additional instructions, tips and the occasional encouraging comment after any stressful scenarios. But the expression "losing the will to live" is, in my case, said without any exageration or humour. And although, even with an established carer, interaction is mainly limited to functional requirements (witty banter is somewhat limited), one still develops a personal/professional hybrid relationship with them (due in part to the intimate nature of some of the care). So when they leave it's impacts emotionally to a degree also.
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Friday 27 April 2012
My Eyegaze Video
This is a video I made with fellow MND sufferer Liam and his friend Bernard. It will hopefully feature on the MNDA's website soon. I have to admit feeling rather hypocritical regarding its optimist comment (having been publicly very critical of the MNDA for their awareness campaigns being focused on optimism, instead of the hideous nature of this disease) but I guess it's a price I am willing to pay in return for publicising what is achievable when only your eyes work. To counter the hypocracy, I am still badgering the MNDA to make a TV ad which will tell it straight with a realistic narrative and no mention of the word optimism!
Monday 9 April 2012
Holidays, Wheelchairs and Automobiles
The new car arrived during March and conveniently coincided with the sale of the VW for which I got a reasonable price. I was quite proud of myself buying and selling the cars fairly independently using my eyes, with Tracy only having to be involved with test drives and handovers. The Fiat Doblo is a big improvement over the VW although I am still at the mercy of G-forces. I have been out several times including a fairly long run to the banger racing at Aldershot yesterday with my mate Stuart.
I am still in two minds about the Dorset holiday in August. The journey will undoubtedly be easier and the half mile pot holed track at the farm will be a little less tortuous but I will have to take my indoor wheelchair which is pretty hopeless on anything other than completely smooth ground. Anything else has to be traversed at a snails space. I am going to spend the whole time asking to be pulled up in my seat. Even the grounds immediately outside the cottage, particularly the sloping bumpy garden is going to be tricky. Factor in some bad weather and it doesn't get any more appealing. But then staying at home alone except for a live in carer isn't very appealing either. I just don't know.
The reason I will have to take the indoor wheelchair is that the Doblo won't accommodate the larger offroad wheelchair. I knew this was a limitation when we bought the car and I haven't used it for almost 6 months so in practice it was of little consequence. Having lost the option to take the offroad wheelchair anywhere I have reluctantly sold it. It was collected yesterday and it was depressing seeing it go. Apart from a couple of stressful flat tyre incidents, it was a massive part of my life during 2009 and 2010. I reckon I covered well over 1000 miles in it and it gave me independence and freedom; it was effectively part of me and I absolutely loved it. I had lost the ability to use it long before yesterday, but nontheless seeing it go still felt very sad. My world has contracted massively without it and although at the time, taking myself to hampton court or bushy park got a little monotonous I would give anything to still be able to do it.
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I am still in two minds about the Dorset holiday in August. The journey will undoubtedly be easier and the half mile pot holed track at the farm will be a little less tortuous but I will have to take my indoor wheelchair which is pretty hopeless on anything other than completely smooth ground. Anything else has to be traversed at a snails space. I am going to spend the whole time asking to be pulled up in my seat. Even the grounds immediately outside the cottage, particularly the sloping bumpy garden is going to be tricky. Factor in some bad weather and it doesn't get any more appealing. But then staying at home alone except for a live in carer isn't very appealing either. I just don't know.
The reason I will have to take the indoor wheelchair is that the Doblo won't accommodate the larger offroad wheelchair. I knew this was a limitation when we bought the car and I haven't used it for almost 6 months so in practice it was of little consequence. Having lost the option to take the offroad wheelchair anywhere I have reluctantly sold it. It was collected yesterday and it was depressing seeing it go. Apart from a couple of stressful flat tyre incidents, it was a massive part of my life during 2009 and 2010. I reckon I covered well over 1000 miles in it and it gave me independence and freedom; it was effectively part of me and I absolutely loved it. I had lost the ability to use it long before yesterday, but nontheless seeing it go still felt very sad. My world has contracted massively without it and although at the time, taking myself to hampton court or bushy park got a little monotonous I would give anything to still be able to do it.
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