Tag: tillift

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Diary June 2007

Passport photo

I had to get my passport renewed, but these days there are even stricter rules for passport photos; no smiling and a head kept straight. We couldn’t go to some department store photo studio, so we had a photographer come to us. I had to pose in front of a grey background, balanced on my headrest. He would edit the picture later to make it seem like a regular picture. The resulting photograph looks rather desolate. Everything about me is crooked; my head, my ears, my mouth. Moreover, my eyes are half-closed. It looks terrible. It’s a good thing I don’t look in too many mirrors anymore. Continue reading “Diary June 2007”

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Diary August 2007

My packing list

One wheelchair, one comfortable chair, one commode, one shower seat, one patient lift and one motorised rubber boat. We’re taking three cars, two of which are vans. The only thing that absolutely has to be handicap-accessible is my bed, which it isn’t, it’s too low. Besides not having any doorsteps, the cottage was not built with the handicapped in mind. It’s a good thing we can take most of the things I need with us in the van and there’s plenty of space in the cottage. Although, for privacy reasons, our fellow travellers did need to evacuate the cottage whenever I had to use the bathroom, but they did so without any fuss. It became a routine. Hein’s cousin Adriaan drove the van back to Leiden to collect the last few amenities I needed. I couldn’t thank him enough, my hero. Continue reading “Diary August 2007”

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Diary November 2007

Worries

I have three practical worries; my mucus problems, mobility and the accompanying trouble I have using the bathroom using a patient lift. All three of them are easily solvable, but to me the solutions are worse than the problems themselves. There are suction machines to help me clear my throat, but it only works for some people. Others say it only made their issues worse. Which one is preferable? My mobility problem could be fixed by using a sling lift, in which I’d have to sit in something that looks like a big sack. That doesn’t sound appealing to me either. I hate not standing upright and I don’t even think it’s possible to use a sling lift with only one carer, especially since my neck can’t keep my head upright. As for using the toilet, a lot of ALS patients choose a catheter, but that’s a big step, not taken lightly. Continue reading “Diary November 2007”