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.

GTST

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.

Shit

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

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
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Het bericht Diary January 2005 verscheen eerst op Living with ALS.

On Wednesday, March 2nd, the long-awaited documentary on ALS was finally aired. I don’t like programmes about serious diseases and I never watch them. Every one of them pretends to be in-depth but always leaves me feeling like they haven’t even scratched the surface. But this time, I knew some of the people involved, so I was curious. I enjoyed how every person they interviewed had their own way of dealing with their illness, ranging from getting the most out of life to doctor-assisted suicide, from meticulously planning everything out to living from day to day. I’m more of an improviser myself. The only people who I knew before they were euthanized were male. Maybe that’s because they were used to being in control. Maybe they’re unable to deal with such radical lifestyle changes. It would have been interesting if the documentary focused more on that aspect of ALS, but they barely mentioned it. I’m so impressed with Ria Velthuizen, who managed to shed a positive light on a topic as depressing as ALS. I wouldn’t have been able to.

Snow

Through the window, I watched the snow fall. This year marks the first time I’ve had zero intentions of going outside for a walk in the snow. It turned out that I’d made the right call, as the snow got so thick that the wheelchair would have just gotten stuck. We went on a short walk on Saturday, but my head wobbled to and fro as the people behind me struggled to push me through the snow.

Placebo

By now, a survey for people who were treated in China has proven that the effects of the treatment generally last for three months. In December of 1997, when I was still thought to have MS, my ability to walk rapidly deteriorated. When I did, it was at a snail’s pace and completely wear me out. My neurologist prescribed a five-day high-dosage Prednisone treatment, which is the usual prescription for MS patients. My walking immediately improved. When we went on holiday the week after, I felt unstoppable as I hiked up and down the mountains. Back home, I even managed to go on a 7 kilometre hike at a decent pace. In March, it all came crashing down. I was having a lot of difficulty going up or down even the smallest inclines. By April, I was back where I started in December. Later that month, I got the ALS diagnosis. Prednisone isn’t supposed to work on ALS patients and yet my walking improved drastically. It lasted for about three months too so now the question is: is the Chinese treatment more effective than a placebo? Now, I’ve written more than enough about China. Consider this my last addition to the China discussion.

Cognitive Dissonance is the psychological theory that states people will do anything to justify their own actions, beliefs and feelings, even if it means ignoring facts that are in opposition to those three. It’s applicable to both sides of the China discussion.

Flat screen

My PC kept freezing, so our computer expert, after listening to the creaking hard drive and noting my intense usage of the machine, advised us to buy a new one. When he asked what I wanted from a new computer, I indulged my fantasies for a second. Would I like a flat screen? Of course! Nineteen inch? Sure, why not. I felt kids’ jealous looks boring into my back. “Oh sure, she gets a new computer. What about us?” It wasn’t even in my own interest. I should have known better, I hate change. I’m still using my old chair as my new one gathers dust, just because it feels too different. My new shoes? Too cramped, I’m not using them. So, one night I was using my new nineteen inch screen. Good lord, it’s massive. I was already having trouble using my head mouse on my old screen, but this? There I was, having to make ludicrous head maneuvers to complete even the simplest tasks. All I wanted was to get my old monitor back. So I did. Like my chair and my shoes, my new monitor has already fallen in disuse. I’m still getting used to Windows XP. My word prediction program is not working and neither is my cursor, which constantly disappears. In shot, I’m back to using my old PC too. I don’t like change, but I never learn either.

Planning

I’ll be celebrating my 50th birthday on Saturday, April 2nd. I thought of planning a buffet, but then I realised that I wouldn’t be able to eat any of it myself, so I scrapped it. Dancing wasn’t going to work either. That was why I decided, completely against Hein’s wishes, to organise a karaoke party. The idea alone made me giddy with excitement. I would be participating, of course. A lot of people told me that they would like to come, but didn’t fancy singing. What was I going to do? Create pairings and force them to sing? Everyone I asked seemed to think that was a bad idea. It’ll be fine, they said. Besides picking someone to start the night off, directing the other organisers and making a list of songs, I didn’t have that much control. I am becoming more hopeful. I’m back in the saddle again. Last night I couldn’t sleep for an hour because I was so excited. Let it go, Jeanet. Let it go.
On Wednesday I had a headache, I was nauseous and I didn’t feel like eating. Was I just stressing out?

50 years in photographs

I picked out some photos for my party. While I did like looking at old pictures, it didn’t send me on a nostalgia trip. I don’t get nostalgic about music either. I actually prefer contemporary music to what I used to listen to. Just one series of pictures made me feel a twang of nostalgia, the photographs we’d taken on holidays when the kids were still small; Mallorca, Menorca, Ibiza, France…

Fifty

I turned fifty Thursday, March 31st. Hein and the kids hadn’t even asked me what I wanted for my birthday, so my hopes weren’t high. I wouldn’t have known what to ask for either way. But in the morning, they were all ready to surprise me. Floor treated me to a spa day, Ward, smiling wide, got me a towel embroidered with ‘Jeanet, 50’ we’ll be going to see the musical Mamma Mia on April 1st. What a day. What followed was a deluge of birthday cards, congratulatory emails, balloons in the shape of the number 50, flower bouquets and a moderate amount of birthday guests. The weather was great. What else could I ask for. I’m already looking forward to Saturday.

Het bericht Diary March 2005 verscheen eerst op Living with ALS.