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.

December 1998

I’m a bit depressed. I’m starting to lose hope. The antioxidants haven’t helped thus far. The talks with my neurologist have proven to be disastrous: “Speech therapy, physical therapy, they’re no use. Maybe a bit of emotional support, but other than that? ALS Digest? A bunch of hysterical Californian hacks.” It’s those small jabs at my emotional supports that make me feel undermined. I haven’t done any speech therapy since. Go on without the things that give me hope? I can’t. I wrote my neurologist a letter about it.

Maart 1999

Doctors aren’t doing me any good. My legs are shaking heavily now. Too much empathy is another thing that I can’t stand. I wish everyone could just act like themselves, like everything is back to normal. Then again, nothing is normal anymore, is it?