I felt a bit overwhelmed today, too many different people coming and going, open doors, cold draughts, noise and a lot of dust. I\u2019m fed up with all this construction work. Moreover, today we had our first real setback: we had a faulty water main, meaning the whole wall will have to be demolished again (it turned out not to be too bad, though). I would like nothing more than for them to all get out of my house. This is the first time I\u2019ve felt that way, because overall they\u2019ve done a very good job. Another week and things\u2019ll quiet down again. <\/p>\n
I don\u2019t do much, I only observed during the past week. Ward is in the middle of his midterms right now, so his work environment is less than ideal at the moment. Moreover, Hein is planning on celebrating his birthday this week and making the house presentable is going to be an awful process (although it did give us the motivation to clean up. Though the help of some other people, we have a liveable house again). <\/p>\n
I\u2019d decided not to let the hype about ALS therapy in China get to me. I formulated a few objective criteria, based on real palpable improvements. No \u201cI feel more energetic\u201d or \u201cmy neck feels stronger\u201d, like the things the patient in China had documented thus far. I wanted to know about changes to his body weight, the amount of spasms he had and improvements to his lung capacity. In his November 6th diary entry, he confirmed two out of three, only his breathing hadn\u2019t improved. Add to that the fact that a few of my long-time correspondents have decided to go to China too (it has a one-year wait list). I\u2019m tempted. Should I consider going too? I have to admit, somewhere deep down I\u2019m hoping it\u2019s all bogus, so I don\u2019t have to make the choice for myself. And that makes me feel guilty. Do I want ALS to be curable? Yes, of course, but I want it to be curable back home, backed by solid evidence, without a waitlist for therapy in China. That\u2019s why I\u2019m looking for any evidence that may disprove the merits of Chinese therapy. China\u2019s reputation in the medical world is dubious as it is, but I\u2019m still full of doubt.<\/p>\n
Of course, we\u2019re heavily invested in the news about the assassination of Theo van Gogh [a Dutch director who made a few controversial films about Islam who was murdered by a muslim extremist on November 4th, 2004. -Ed.] and the nationwide discussions following it. Ward has exams and goes to a primarily white school, so it hasn\u2019t really come up in his class. Floor, however, goes to a multicultural school (30% of students there are immigrants) and the assassinations sparked some very real discussions there. Before, she didn\u2019t really like it there, but now that there was a lot of open discussion between students of various backgrounds and creeds, her opinion has changed. She even told me: \u201cI\u2019m actually kinda proud of our school.\u201d<\/p>\n
It turned out that Ward hadn\u2019t done well during his tests. He thought he\u2019d studied enough and even while he was taking his tests, he felt optimistic. It all became too much for him and after receiving his umpteenth disappointing grade, he burst into tears and locked himself in his room. I had him called downstairs, but after only showing his face for a second, he ran upstairs again. I felt so powerless then. I can\u2019t do anything to console him and I can\u2019t make things better. I\u2019m as upset as he is. We\u2019d already agreed to have Ward moved to a class with a dedicated tutor. I would love to get up and take care of that right away, but I can\u2019t. So I tried to get Hein to do it, but he was too tired. If only I could be of any help. <\/p>\n
I finally had a dentist\u2019s appointment on Tuesday, where we made the shocking revelation that the teeth next to the hole where my broken tooth used to be are crumbling as well. At this rate, I won\u2019t have any teeth left soon. I look homeless. The dentists is going to use the aforementioned teeth to put in a bridge. If that doesn\u2019t work, I\u2019ll get crowns. We made a one-hour appointment for that. I hope everything works out. <\/p>\n
Wednesday, November 24th marks the completion of the last big construction task; putting the floor in the hallway. All that\u2019s left now are some minor errands. However, we were disappointed at how badly we stuck to the plan. Hein is at the end of his rope, he\u2019s in a lot of pain and very irritable, having been monomaniacally concentrated on construction. He barely had time for the kids. I\u2019m not looking forward to the final task: sanding the hardwood floor. Once again, we\u2019ll have to take every single piece of furniture out of the room, we\u2019ll have to be out of the house again and it\u2019ll put even more strain on Hein. It\u2019s planned for the first week of January, but I\u2019m trying to get Hein to postpone it. I want some peace and quiet first. <\/p>\n
There\u2019s a psychological principle called \u2018selective perception\u2019: people are more likely to internalise the things that they want to believe. The same goes for stem cell therapy in China. I read an article from a doctor who wrote that the effects of stem cells are just temporary, because the cells that are injected during therapy die off eventually. I read that two people have died in China after getting treatments. I also read that, although patients have to wait for one year, enlisting requires a 7500 euro payment upfront. I read that Ardi\u2019s movement has improved, but his breathing has only gotten worse. He has to fight for air, has difficulty talking and has had pneumonia. So I\u2019m wondering what all of the people who are booking their flights to China have been reading. As far as I know, there hasn\u2019t been a single piece of positive news about stem cell treatment after those initial two to three months. Is it blind faith, hope or just pure desperation that\u2019s driving them to China? Or have they read something I haven\u2019t?<\/p>\n
Another 50th birthday party. I have mixed feelings. I like being around people, but the amount of people who talked to me or, more accurately, talked at me, is small. It always makes me feel so alone. I admire the people who actually came over for a serious chat. Most of them just waved at me or gave me a kiss on the cheek. I\u2019m socially handicapped. At ten o\u2019clock I left, feeling emotional. Luckily, one of the partygoers came to talk to me and Marjolein sent me an email reflecting on the party. That way, I felt at least kind of involved. <\/p>\n","protected":false},"excerpt":{"rendered":"
Done I felt a bit overwhelmed today, too many different people coming and going, open doors, cold draughts, noise and a lot of dust. I\u2019m fed up with all this construction work. Moreover, today we had our first real setback: we had a faulty water main, meaning the whole wall will have to be demolished … <\/p>\n