It’s a difficult part of my life. Apparently I’m very particular about my needs. I don’t want things to move this fast. I’d like things to match my pace. A little bit less commentary on how much I’m deteriorating, I can do that myself. The contract ALS patients are supposed to sign involving their treatment (about the usage of feeding tubes, artificial respiration, et cetera) was another nasty surprise for me. I still haven’t signed it yet, and I don’t know if I ever will. On a more positive note, my first talk with my neurologist was very enlightening. In any case, I’m happy with my current GP and I’m starting to get used to the Rehabilitation Centre after a bit of a rough start. I still try to discuss my feelings and gripes about my treatment with my doctors. Continue reading “Doctors”
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”