It’s been a busy week. On Wednesday I had a homeopathy appointment and on Thursday I attended ALS Day in Uden. Ineke, a fellow ALS patient from Leiden and her boyfriend carpooled with us, which was nice, despite the fact that I fell asleep in the car. Uden is not closeby; two and a half hours there and two hours back. All of that for an event lasting only four hours. We were late and had already missed a lecture. The good news: they’re building a national ALS centre, a central point for information about ALS. After that, it was a pleasant, laid-back day with only a light programme. We sat at a table, surrounded by familiar faces. I had my ever first reflex zone massage too. While I didn’t have my feet massaged, my hands did get treated. According to my masseuse I shed a lot of toxins. I’ll feel much better tomorrow. It was a love-filled day. People who knew me from my homepage came up to me and some of them hugged me. They politely asked if they could beforehand, mind you. I’ve learned to appreciate days like these.

The day after

The day after ALS Day was not pleasant. My head and stomach ached, I felt hot one moment and cold the other and I felt like I needed to vomit. I spent the entire day napping under a blanket. I didn’t eat anything and vomited once. Exasperated, I took some preemptive antibiotics. Maybe ALS Day had been more strenuous than I previously thought. Maybe I was just shedding toxins. Either way, I felt pretty damn awful. The following day I felt a lot better and I answered all of my email prompted by ALS Day, because we always write each other after one of these gatherings to exchange stories and experiences.

TV show

I’ve had a VHS tape of a TV programme about life with ALS for over 6 months, but I never had the courage to actually watch it. Two weeks before ALS day I received an email from Loes Claermont, one of the people featured in the TV show. I had corresponded with her before, but I didn’t put two and two together then. This year would be her first ALS day ever. She was warmly greeted, despite the fact that she was very upset about the things she saw and heard. Loes has a very slow-acting form of ALS. Meeting her made me curious and I watched the videotape. I cried a lot, but I also saw a lot of myself in her. I was touched by the other featured patient’s reflections on being curious about death and wondering if he could still be with them after passing away. I often wonder the very same thing.

Football

Saturday has become football day. Ward played with his team for the very first time today. He had been training with them since September. His team is comprised of a lot of his classmates. Floor played her second match today. And thus, slowly but surely, Saturday turned into a day of football. When the weather is fair and the match isn’t too early, we’ll come watch the match too. I wonder what they’re like on the field. I have never seen Floor play. Seeing as I used to play as well, I’m curious. We went to see Ward play on Saturday. He’s quite the acquisition, according to his teammates.

Traditional food

My childhood dinners were often just potatoes, greens and some meat. Student housing was a culinary revolution for me. No more hotchpotch. But with young kids, simple Dutch dinner has its advantages. Intricate dishes just lead to more pickiness and digging out unwanted ingredients. Just as the kids are learning to like more exotic cuisines, their mother has become wholly dependent on easily mashable food. In that regard, there is nothing better than vegetables and potatoes (meat is a bit trickier). Thus, we have a very traditional menu; beetroots on Monday, green beans on Tuesday, leek or spinach on Wednesday, spaghetti on Thursday, hotchpotch on Friday, the kids get to pick on Saturday and we eat takeaway on Sunday. It’s horribly predictable. Sometimes, we even willingly eat Brussels sprouts, until Floor got horrible stomach cramps for which she had to see a doctor, an intestinal colic. We’re hesitant about eating sprouts again. The kids don’t like this traditional cuisine. They’ll start to appreciate it once they grow older.

Teenage daughter

I had a row with Floor this morning. She wanted an allowance and I asked her why. She saw that as a provocation (turns out, she wanted money to buy a rose to give out on Valentine’s day and hoped I would finance it). It’s hard, only being able to speak if the other party is patient enough to listen. Good luck finding patience in an angry teenage daughter. She left for school, still upset. I hate that, but at least the fight is over. Actually, I’m left feeling angry. She’s quick to start yelling, something I don’t really have an answer to. Usually, we make up. We calmly talk about it. Sometimes, I write her an email. Still, it’s rough.

Holiday

On Friday we’ll be leaving for Tubbergen in Twente. Like every year, we’ll be accompanied by Hein’s family and hope for fair weather. We used to go skiing. Surprisingly, the kids don’t complain about that at all. In May, we’ll be visiting Westerbork with family friends. We made some half-hearted attempts to plan a holiday to England, but the country is not really suited for the disabled. In that regard, The Netherlands is still a frontrunner. This summer we’ll be going to Zeeland. We’ll stay a bit closer to home this year. The kids hate it. It’s the fact that they have to tell their friends “We’re going to Zeeland”. The camping ground has surfing and sailing, plenty of entertainment. It’s an image problem. Snobs.

Dexterity

One of my feet bends inward while the other goes outward. That’s why I have special shoes. They allow me to stand for over 5 minutes. Without my shoes, I’m helpless. They’re elongated on either side to prevent me rolling my ankle. I think my shoes are some of my most helpful tools. Thanks to them, I was able to keep walking and using the bathroom on my own. I noticed that nobody at the ALS Day wore them, while most of them probably have painful feet.
Another great invention is the contraceptive injection. No more fuss. After a small buildup, I only need the injection every 3 months. My GP treats me at home. I remember asking my neurologist about stopping menstruation, but he just scratched his head. Most neurologists are men. Luckily, one of my fellow female ALS patients put me onto it.
And then, of course, there’s the head mouse, a marvel of technology to the uninitiated. How could it be possible to guide the mouse with only your reflection? Currently, the two builders we hired to repair our roof are gazing at me in fascination, watching me work. Everytime someone comes to visit, I give them a demonstration. Mouths fall open in amazement. And indeed, it is a marvel. The world has become a lot more pleasant for ALS patients because of inventions like these.
Okay, I’ll also admit, last but not least, my standing patient lift is useful. I’ve gotten used to it and I’m very content with the ease and the speed with which it allows me to use the toilet.

Corrie online

My mother is improving. She doesn’t write long paragraphs anymore, now knowing that the return key skips a line, and the random capitalization has become less abundant after she found out what the CAPS key does. My previous entry gained me a number of responses. Liesbeth Koenen (a journalist and one of my readers) sent my mother a copy of her booklet Email Etiquette, a book for beginners, as a helping hand. Another reader wrote:

I liked reading about how your mother, too, has started using the computer instead of calling. My parents have also bought a used PC and are doing their utmost to learn, but they also run into some strange problems. The other day, my mother complained about the screen not turning on while the computer was running. When I came to look at it, it turned out they had forgotten to turn on the monitor. But I do like the fact that they’re trying to stay up-to-date.

And like that, many other parents are working hard to catch up to their kids.

What do you say after you said hello?

That was the title of a popular book for shy people: how do you keep a conversation going? A pertinent question, now that I’m only intelligible to a select few people. The answer is: you can’t really. Without an interpreter at my side, I’m helpless. Conversation is a one-way street. It’s something not many people are good at. People like a response. If Hein isn’t with me, I’m in for a world of awkwardness. People want to talk with me, but they can’t. After their first question to me, the convo ends. Eye contact becomes uncomfortable. That’s how it goes for the rest of the night. That’s why I like to avoid large crowds. Intimate contact is impossible, partly because of the noise. I concentrate on the card game. In smaller groups, I’m always terrified of my translator going to the kitchen to put the kettle on. There we are, awkwardness mounting. Luckily, my interpreter makes a swift return. I do admire people who are courageous enough to attempt talking to me.

And how are your toes?

They’re great, thanks! Because of the fluid retention in my leg I’ve started wearing a tube grip, a kind of stretchy bandage that keeps the fluids at bay. Because of that, my toes are less swollen, less prone to friction and have an easier time healing. In addition, my shoes aren’t as tight as before. In short, a welcome change.

Spring break

I feel more uncomfortable when I’m away from home. My routine is broken. I don’t sleep well, which is not an issue at home. I sleep my days away. The toilet is too far removed from the wall, making me slump like a sack of potatoes. We’re with a large group and I feel like a spectator, except for the time we spend playing games (we played a lot of Settlers of Catan). The family is helpful. I was stupid not to take my laptop with me, I would feel a lot more self-sufficient if I had. The weather was not cooperative; cold winds, rain, with a small amount of sunlight in between (when we got back home, the sky was blue again). Still, we saw a lot of the surrounding countryside. I especially enjoyed our visits to Ootmarsum and its galleries and Elsloo House. In Oldenzaal we visited what’s supposed to be the most modern shopping mall in The Netherlands (not) where I bought some new clothes. The windmills there looked straight out of a painting. If only the weather had been as kind to us.

Het bericht Diary February 2002 verscheen eerst op Living with ALS.

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.

I’ve been busy looking for a new pair of shoes since last August; they have to be comfortable, but sturdy enough for me to be able to stand up in them. After one failed attempt, where we only consulted a cobbler, we decided to try again, that time under supervision of a rehabilitation doctor, but to no avail. The resulting shoes just made me twist my right ankle, meaning I couldn’t stand up in them. We’ve devised a way to combat that: an EVO (an orthotic that functions like a splint) that keeps me from spraining my ankle.

Like the adage goes: never throw out your old shoes before getting new ones. Literally, in my case. I can’t think of any reason why I should exchange my current comfortable footwear for new uncomfortable shoes that prevent me from standing up and require orthotics to work properly, making every bathroom visit, where I’m already required to use a patient lift, a mechanical nightmare.

Downloading movies

Carlien, one of my carers, gave me a DVD copy of Hotel Rwanda. At first, we couldn’t watch it because my new PC hadn’t arrived yet, then because our specialist couldn’t attach the PC to the TV and lastly, because we didn’t have the correct cables. Carlien’s boyfriend came to the rescue and, in doing so, showed us how to download movies. After three days of downloading, the first batch arrived. They don’t have subtitles, but I could do with some English practise. I could tell I was missing out on some of the finer details in the dialogue of the first movie. By now, we’ve made a list of movies to download.

How much help should we expect from the kids?

It started with just making me some tea, a fruit smoothie, but now it’s gotten to the point where we think Floor would be able to help me use the bathroom. Because of our decision to hire as few carers as we could while still maintaining a manageable schedule, the kids and Hein are usually the ones taking care of me in the evenings and during weekends. It wasn’t sustainable, so Marjan cooks for us and feeds me on Saturdays, Lieke cares for me for one weekend a month and the kids are becoming increasingly involved. From the start, Floor wanted to know how to operate the PEG and the big syringe and after a while, Ward’s curiosity got the better of him and he learned how to work it too. “Why did I ever want to learn this?” he’ll often say when he has to give me water for the umpteenth time. Only two things were off-limits for the kids: using the bathroom and bathing. By now though, Floor has already shown her aptitude using the patient lift. She had been anxious to try it for a while, because she knew as well as I did that she would be taking some weight off of Hein’s shoulders. She immediately nailed her first attempt, probably because she had seen it done so many times before. Despite our initial doubts, we’ll call on her for help if it’s needed. And as it happens, Hein has a knee infection this week, so while Hein is limping around the house and lying in bed, Floor, with Ward’s assistance, helped me out in the bathroom.

Carers

There hadn’t been too many developments on the carer front the past year. We even managed to construct a good schedule over the holidays. But by the time autumn came around, the golden age was over. Brenda is going on a journey to Australia and Canada for a year and Carlien finally found a job as a physical and respiratory therapist. I’m happy for them, but it’ll be a huge adjustment for me. We’ll have to find new carers in the coming four days.

August

August was quiet. My biggest victory this month was finishing two Harry Potter books. Floor was away on holiday for two weeks and wouldn’t be celebrating her birthday at home, had it not been for the fact that her tent got flooded in Zeeland, meaning she was home for her birthday (after hastily being evacuated by a friend’s parents). We hastily bought streamers, a birthday cake and presents. School started a week ago and the kids are still adjusting to having obligations again. Hein’s infection is getting better. While we managed just fine despite it, it did lay bare the fragility of our carer system.

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