Yesterday, Ward watched The Blair Witch Project. It\u2019s a movie that\u2019s 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\u2019t scary at all. <\/p>\n
I watch a lot of TV, only during the evening though. I don\u2019t have many alternatives and I\u2019ll 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\u2019re able to compromise, although I do watch The Bachelor and America\u2019s Next Top Model with some resentment. I\u2019m still not used to the endless channel flicking. The moment a commercial break starts, we\u2019ll 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\u2019m 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.<\/p>\n
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\u2019m glad we went, though. Yesterday, my new help Brenda and I went to look for a proper handicap-friendly retreat (and I\u2019m 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\u2019s 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.
\nBy now, we\u2019ve taken a look at the house. It\u2019s spacious and empty. It\u2019s usually someone\u2019s home, but the owner is going on a holiday of her own. We\u2019ll have to take care of four cats while we\u2019re there. <\/p>\n
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\u2019t 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 \u201cspecial cases\u201d department in Amsterdam and in the meantime I\u2019ll be toothless. Technically it\u2019s not a terribly difficult procedure, but I can\u2019t sit in a dentist\u2019s chair and keeping my mouth wide open for that long is another impossibility. It requires patience, something that\u2019s in short supply for me. <\/p>\n
Tomorrow I\u2019ll get a new pair of shoes fitted, another \u201cfun\u201d activity. I\u2019m 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\u2019t 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\u2019s fluid retention. Besides that, my left foot goes inward and my right foot goes outward, so it\u2019s one hell of a task to even stand upright. Another job for the \u201cspecial cases\u201d department which will probably take months. Maybe I\u2019m done wearing shoes or having teeth.<\/p>\n
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\u2019m never alone. The carers took pictures of everything.<\/p>\n
My new carers are doing well. I\u2019m 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\u2019t 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\u2019ve had fun talking back. In short: I\u2019m starting to trust them. They do ready my online diary, so I can\u2019t be too candid. <\/p>\n
My piece about comprehensibility was very relatable to ALS patients. Two quotes:<\/p>\n
\u201dApparently, 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\u2019ve heard the second, after which they\u2019ll look at me strangely, wondering what word starts with \u201cgnt\u201d. There is none, I was trying to say \u201cgentle\u201d.\u201d <\/em><\/p>\n \u201dI\u2019m 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\u2019t bother with conversations anymore, except for when I\u2019m using my computer. Like you, I\u2019m resorting to spelling more and more and I, too, am amazed at how people always think I\u2019m saying \u201ch\u201d when really I said \u201cr\u201d, constantly repeating the wrong letter even though I\u2019ve made very clear that they messed up. I\u2019m always glad when they just recite the alphabet, but even that can go wrong, like when I was trying to say \u201cthere\u201d and they thought I was trying to say \u201cthe re\u2026\u201d Very frustrating, on both sides.\u201d<\/em><\/p>\n While I don\u2019t 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\u2019m skeptical. The patients who received treatment report positive results within just a few days. It\u2019s 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\u2019t change anything about my ALS. It wouldn\u2019t surprise me if it was simply a placebo.<\/p>\n","protected":false},"excerpt":{"rendered":" The Blair Witch Project Yesterday, Ward watched The Blair Witch Project. It\u2019s a movie that\u2019s 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 … <\/p>\nChina<\/h2>\n