Diary September 2004


The Blair Witch Project

Yesterday, Ward watched The Blair Witch Project. It’s a movie that’s shot like a home video about three teenagers looking for a ghost in the woods. At the time, it was hailed as one of the best and most terrifying horror films ever. We went in feeling slightly apprehensive. Ward repeatedly wondered aloud when the scary part would start. Just in case, he had a comic book to hide behind if the movie got too scary. As it turns out, there was no need for worry. It wasn’t scary at all.


I watch a lot of TV, only during the evening though. I don’t have many alternatives and I’ll usually be bored of my PC by nightfall. I like watching TV as a family. Floor is my most loyal TV companion. That does mean that we spend the night flitting between shows I like and shows Floor likes. Usually we’re able to compromise, although I do watch The Bachelor and America’s Next Top Model with some resentment. I’m still not used to the endless channel flicking. The moment a commercial break starts, we’ll go on a journey, from TMF on to MTV, a quick detour to The Box and back again. It drives me mad. I used to be the only crybaby whenever something sad came up, but now I’m not the only one to snivel occasionally. Apparently, it takes a certain emotional maturity to fully empathise with people on TV. I feel such kinship with Floor when she reaches over to get more tissues (she has to wipe my eyes as well as her own). On Sunday we watched Survivor and The Block. I prefer Survivor. Ward enjoys it too and always watches along. We support the Belgians, purely because the Dutch contestants deliberate too much. I always fall asleep during documentaries, no matter the subject, but I always wake up just in time for the parliamentary debates, my favourite.

Autumn break

We still have to plan our autumn break outing. Hein wanted to go to a Center Parcs. We scouted one such bungalow park in Zandvoort on Saturday, which advertised wheelchair accessible cottages. It technically did, but the houses were way too cramped. I’m glad we went, though. Yesterday, my new help Brenda and I went to look for a proper handicap-friendly retreat (and I’m glad I got Brenda to come along, a true test of our cooperation and my comprehensibility). We were too late, every single woodland cottage was already booked. We did stumble across a nice house in Amsterdam. Apparently, it’s where Renate Rubinstein lived out the last years of her life. Spending the week in Amsterdam sounds great, but the forest would be fun too. The kids like the sound of the house in Amsterdam. Maybe to compensate for Zeewolde.
By now, we’ve taken a look at the house. It’s spacious and empty. It’s usually someone’s home, but the owner is going on a holiday of her own. We’ll have to take care of four cats while we’re there.


I just got back from the dentist, because my false tooth has dislodged itself again. In January, I had a gum infection which turned out to be situated below the tooth. It was able to drain, however, and it didn’t hurt again until the week before my tooth fell out. Somewhat afraid, I made the dentist appointment. Turns out, my gum is totally infected to the point where putting the tooth back in is impossible. I was referred to the “special cases” department in Amsterdam and in the meantime I’ll be toothless. Technically it’s not a terribly difficult procedure, but I can’t sit in a dentist’s chair and keeping my mouth wide open for that long is another impossibility. It requires patience, something that’s in short supply for me.

Tomorrow I’ll get a new pair of shoes fitted, another “fun” activity. I’m not looking forward to getting fitted shoes, they never look comfy or lightweight. I need to be able to stand up in them for a few minutes. They can’t pinch my feet, either. My left foot is covered in purple pressure marks that hurt and itch. I never tie my shoes too tightly. As twhe day progresses, my feet swell a bit because of my body’s fluid retention. Besides that, my left foot goes inward and my right foot goes outward, so it’s one hell of a task to even stand upright. Another job for the “special cases” department which will probably take months. Maybe I’m done wearing shoes or having teeth.

Long live construction work

The demolition has commenced, or should I say, construction has started. The garden is a mess. Hein repotted all of the plants we could save. On Monday morning at 7:15, seven construction workers arrived on our doorstep, all smelling of cheap cigarettes. It was still dark outside. I tried to be dressed and ready before they arrived, so I had to get up really early. The builders brought autumn with them, but despite the rain and wind, they worked steadily. The contractor made a day-to-day schedule, but the builders worked too quickly to stick to it. Our garden is not connected to a path, so all materials had to come through our living room. Tens of wheelbarrows of sand and concrete, windows and frames, our living room was like a highway, mud and all. I locked myself in my room for most of it, only coming out when everything was cleaned up. But there is a lot to look at and I’m never alone. The carers took pictures of everything.

The carers are doing well

My new carers are doing well. I’m making scrapbooks, which requires a lot of deliberation: sorting, page layouts, what glue to use. Carlien helped me declutter my PC, Brenda helped plan our holiday. We talk a lot during coffee breaks. I didn’t entertain any guests for the first few weeks to bond with my caretakers. When I first met them, I told them to take initiative in conversation. They have been doing that, and I’ve had fun talking back. In short: I’m starting to trust them. They do ready my online diary, so I can’t be too candid.

My piece about comprehensibility was very relatable to ALS patients. Two quotes:

”Apparently, using an alphabet communication board is difficult for some people. For instance, ladies in their sixties have a tendency to forget the first letter as soon as they’ve heard the second, after which they’ll look at me strangely, wondering what word starts with “gnt”. There is none, I was trying to say “gentle”.”

”I’m also having a hard time getting people to understand me and I limit myself to banal topics, like needing the bathroom, wanting to drink or needing my arms repositioned, etc. I don’t bother with conversations anymore, except for when I’m using my computer. Like you, I’m resorting to spelling more and more and I, too, am amazed at how people always think I’m saying “h” when really I said “r”, constantly repeating the wrong letter even though I’ve made very clear that they messed up. I’m always glad when they just recite the alphabet, but even that can go wrong, like when I was trying to say “there” and they thought I was trying to say “the re…” Very frustrating, on both sides.”


While I don’t concern myself with it too much, I feel it is my duty as an ALS patient to mention the Dutch woman with ALS who is getting stem cell treatment in China right now. I believe that stem cell treatment could have some short term effect. I’m skeptical. The patients who received treatment report positive results within just a few days. It’s even been on the news here. The reason for my skepticism? Treatment like this has been hyped up before. Olav Tindal returned from his treatment in Mexico feeling way better, but within a year he was dead. I myself had a positive reaction to my first prednisone regimen. I walked better for three months, but it didn’t change anything about my ALS. It wouldn’t surprise me if it was simply a placebo.