We had a nice quiet Christmas break. Our hardwood floor was sanded and finished on January 3rd and didn\u2019t take nearly as long as I\u2019d 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\u2019t take my PC with me, I started reading The Da Vinci Code, a very suspenseful novel. I couldn\u2019t 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\u2019ve also finished The Dinner Club, a novel with twists, turns, and was full of surprises. The books often don\u2019t look good after I\u2019m done with them. For me to read them, they need to be folded open completely. <\/p>\n
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. <\/p>\n
I have my own theory on these alleged improvements. ALS doesn\u2019t immediately shut off all function in muscle groups, like a spinal cord injury would. It\u2019s a gradual degradation. The effects of Chinese stem cell therapy mainly manifest in areas that haven\u2019t degraded fully, functionalities patients haven\u2019t lost yet. Those are the areas where psychology is as important as physiology. So I doubt Ardi Bouter\u2019s lungs themselves have gotten that much better, same goes for Loes, her arms haven\u2019t 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. <\/p>\n
On Ardi Bouter\u2019s 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.<\/p>\n
I don\u2019t 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\u2019t want to knock her down a peg, but I don\u2019t want to be part of the bandwagon, nor do I want to stay silent. <\/p>\n
Even GTST (a Dutch soap opera) has a character with ALS. Completely unbelievable. He doesn\u2019t have any symptoms, except one time where he briefly lost his voice and fainted. By now, he\u2019s 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\u2019re an army of unintelligible, drooling, helpless wheelchair people. <\/p>\n
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\u2019s hoping they\u2019ll have another vacancy in July, but I doubt it. <\/p>\n
January is probably the most boring month. There\u2019s nothing to do. It turned out that the fitted bridge for my front teeth didn\u2019t 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\u2019ll be going to the university hospital next month to see if they can remedy it. <\/p>\n
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. <\/p>\n
Other than that, I\u2019ve started planning my birthday party. I\u2019ll 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\u2019ll anxiously wait for his results. I went to a parent-teacher conference too. I was apprehensive at first, but I\u2019m glad I went. It was a good reason to get out of the house. I\u2019m not as mobile as I used to be. This year\u2019s theatre season started in January as well. We went to see \u201cThe Wishing Well\u201d by Arjan Ederveen with the whole family. But the best show thus far has been \u201cThe Veiled Monologues\u201d, the Islamic variant of the Vagina Monologues. It was touching, crude and hilarious.<\/p>\n
Books We had a nice quiet Christmas break. Our hardwood floor was sanded and finished on January 3rd and didn\u2019t take nearly as long as I\u2019d 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\u2019t take my PC with … <\/p>\n