Diary November 2000

Sick carer

Last week was relaxing. Bad weather, so most of it was spent inside. My mother is sick and because of her absence on Monday and Tuesday, we had to improvise with our carer schedule. It’s a delicate system and we really ought to have hired a new carer by now. My mother feels like she’s doing me a disservice by falling ill, so she was glad to hear that we had found a replacement.
After three weeks my mother got better. My primary carer Inge and my mother-in-law took her shifts. Hein has found a new carer for Tuesday morning who is also open to filling other gaps in the schedule. Continue reading “Diary November 2000”

Diary January 2001

La Vie en Rose

My book was warmly received. The best praise I got was from my cousin Jos:
“Whenever we talk about you at birthdays, it’s mostly about the symptoms of your disease (“she can’t do this”, “she needs help with that”, etc.), because of which my view of your life became very skewed. Whenever I thought of you, I thought of someone who’s wasting away in a wheelchair. Maybe that’s why your insights on your life are that much more significant. Sure, it’s sombre at times, what with your deteriorating motor skills, but it’s largely overshadowed by your positivity.” Continue reading “Diary January 2001”

Diary February 2001

Head mouse, continued

Paul, Hein’s brother, installed the head mouse on my desktop computer. It’s much more functional. A much larger screen, a cursor that doesn’t vibrate, a more responsive sensor area for the mouse, not always having to recalibrate my mouse and audible feedback whenever I press a button, which prevents accidental double clicks. Not to mention the programs that I didn’t have on my laptop. In short: I’m content. The advantage of using the head mouse on my own computer is that answering my own mail and using the internet is once again doable. I’m more self-sufficient and I can use my PC again, instead of aimlessly sitting around. I wrote this part in 25 minutes. Not bad. This month’s entire diary is written by using the head mouse. It’s working. I do constantly forget about the dot between my eyes, so whenever I forget to take it off before bed or using the shower, it becomes unusable and ends up in the trash. Continue reading “Diary February 2001”

Diary February 2002


It’s been a busy week. On Wednesday I had a homeopathy appointment and on Thursday I attended ALS Day in Uden. Ineke, a fellow ALS patient from Leiden and her boyfriend carpooled with us, which was nice, despite the fact that I fell asleep in the car. Uden is not closeby; two and a half hours there and two hours back. All of that for an event lasting only four hours. We were late and had already missed a lecture. The good news: they’re building a national ALS centre, a central point for information about ALS. After that, it was a pleasant, laid-back day with only a light programme. We sat at a table, surrounded by familiar faces. I had my ever first reflex zone massage too. While I didn’t have my feet massaged, my hands did get treated. According to my masseuse I shed a lot of toxins. I’ll feel much better tomorrow. It was a love-filled day. People who knew me from my homepage came up to me and some of them hugged me. They politely asked if they could beforehand, mind you. I’ve learned to appreciate days like these. Continue reading “Diary February 2002”