Diary January 2005



We had a nice quiet Christmas break. Our hardwood floor was sanded and finished on January 3rd and didn’t take nearly as long as I’d dreaded. We only had to spend two days staying with friends, after that the smell of varnish in our house was bearable. Because I couldn’t take my PC with me, I started reading The Da Vinci Code, a very suspenseful novel. I couldn’t stop reading it and finished it in 5 days. Fortunately, one of my carers is an avid reader and turned the pages for me while she read her own book. By now I’ve also finished The Dinner Club, a novel with twists, turns, and was full of surprises. The books often don’t look good after I’m done with them. For me to read them, they need to be folded open completely.

ALS websites

Websites about ALS are springing up like mushrooms. Every patient in China has their own website to either provide information about the treatment to people back home, or to raise money to pay for their treatment. ALS has never been this prominent. Every patient in China has nothing but positive things to say about stem cell therapy and berates Dutch and Belgian neurologists, who are still skeptical about treatment in China.

I have my own theory on these alleged improvements. ALS doesn’t immediately shut off all function in muscle groups, like a spinal cord injury would. It’s a gradual degradation. The effects of Chinese stem cell therapy mainly manifest in areas that haven’t degraded fully, functionalities patients haven’t lost yet. Those are the areas where psychology is as important as physiology. So I doubt Ardi Bouter’s lungs themselves have gotten that much better, same goes for Loes, her arms haven’t improved but her voice has. Stem cell treatment takes at least six months to take effect with spinal cord injuries, which is a far more believable period of time than the instant improvements ALS patients claim to enjoy.

On Ardi Bouter’s website, which I check every day, a huge debate has erupted between believers and skeptics. Some of the biggest opponents of stem cell therapy have been threatened with being banned. I would hate that. The discussion would become very one-sided if there were only proponents left in the discussion. But the discussions have become so vitriolic that Ardi is considering closing his website.

I don’t feel completely comfortable writing about this. Loes Claerhoudt, a long-time correspondent, is currently in China and is a fierce believer in therapy. I don’t want to knock her down a peg, but I don’t want to be part of the bandwagon, nor do I want to stay silent.


Even GTST (a Dutch soap opera) has a character with ALS. Completely unbelievable. He doesn’t have any symptoms, except one time where he briefly lost his voice and fainted. By now, he’s already committed suicide. I get it. The show has to stay fun. ALS is too ugly and too real to show to its full extent. We’re an army of unintelligible, drooling, helpless wheelchair people.


I thought I had it all figured out, a summer holiday in Scotland. We were all looking forward to it, despite a few jokes about needing to bring lots of umbrellas and raincoats. But sadly, the owner of the cottage had messed up the dates: July, instead of August. We had planned everything around the assumption we could stay there in July, and Floor has camp in August. Here’s hoping they’ll have another vacancy in July, but I doubt it.


January is probably the most boring month. There’s nothing to do. It turned out that the fitted bridge for my front teeth didn’t fit. It had a bigger impact on my life than I had initially anticipated. I nervously kept my mouth shut in public and in company. I’ll be going to the university hospital next month to see if they can remedy it.

My fitted shoes are being as uncooperative as my bridge. My heels are too padded, meaning my feet are constantly at an angle and my legs spontaneously spasm.

Other than that, I’ve started planning my birthday party. I’ll be turning 50 in March, after all. Ward had another round of tests this month. He did far better with good planning and without builders running around the house. We’ll anxiously wait for his results. I went to a parent-teacher conference too. I was apprehensive at first, but I’m glad I went. It was a good reason to get out of the house. I’m not as mobile as I used to be. This year’s theatre season started in January as well. We went to see “The Wishing Well” by Arjan Ederveen with the whole family. But the best show thus far has been “The Veiled Monologues”, the Islamic variant of the Vagina Monologues. It was touching, crude and hilarious.

*Ardi Bouter’s website is no longer online