Peer contact

Most emails I send are addressed to fellow ALS patients, if only a few. Email has a certain covertness to it; physical discomforts are invisible to others, letting fantasy take over. Corresponding through email is very therapeutic for me, as is reading ALS Digest. Sadly, some of my peers have passed away recently. Continue reading “Peer contact”

In essence, one stays the same

It’s odd. My mother-in-law told me all the way in the beginning that my capacity to enjoy things would not be affected. My first thought then was “whatever”, but it’s actually true, I still relish the good things in life. One would expect a drastic change in my attitude toward life, but so far only small things have changed. Granted, I did become a bit more weepy. I’ve always cried easily, but nowadays there’s really no stopping it. The symptom fits the diagnosis, though. I’m emotional, but I still don’t want to be “sweet”. Continue reading “In essence, one stays the same”

Surviving and thriving

If one thing has become clear to me these past few months, it’s that humans are incredibly flexible. Quality of life is subjective. A stranger, or me in my heyday, would see my current condition as completely unlivable and worthless, yet I still make every day count and that makes me feel fortunate. It’s amazing that people can survive and even thrive after these drastic shifts. Continue reading “Surviving and thriving”

Alternative treatments

Like most ALS patients, the idea of alternative treatment for ALS made me very hopeful back when I was diagnosed with ALS.

On the day I was diagnosed, Steven Shackel published an article in the ALS digest about the surprising results of his research on antioxidants. His website is filled with information on medicines, vitamins, minerals, theories, his studies and monthly evaluations. I used a plethora of antioxidants during the first two years of having ALS. Steven’s story is supported by Eric Gredney’s story. Continue reading “Alternative treatments”


I love going on holiday. Doing things and seeing things with the family, that sort of thing. We’ve always been an adventurous family. Currently, going on trips a bit (read: a lot) more passive than it used to be. Luckily, it doesn’t ruin the fun. Coming back from holidays, however, is a lot less enjoyable. Continue reading “Holiday”

Diary October en November 1999

How was America?

It was great. We did a lot of fun things and everything went as smoothly as it could’ve. The cottages we rented were amazing. They all had swimming pools, very American. We visited Universal Studios and went on plenty of attractions: E.T., Jaws, Earthquake, King Kong, Twister, etc. Then there was Cape Kennedy. The whole place reeks of spaceflight history. It’s still in use; the next launch is scheduled for December 2nd. Lastly: Epcot, a new Disney theme park. Future World was a bit disappointing, truthfully. The World Showcase was pretty, especially Mexico, the child acrobats and the breathtaking parade. Continue reading “Diary October en November 1999”

Becoming unintelligible

Of all my handicaps, not being able to speak clearly is the worst one. It isolates me the most. People are afraid to constantly ask me what I said, but their vague reactions usually tell me that they didn’t fully understand what I said. What would someone even have to say to me? Problems like these usually arise between me and acquaintances, less so with friends. The uncomfortableness on both ends makes me even more withdrawn. It used to be contact like this that used to give me life. And I love gossip, so how will I stay informed? Continue reading “Becoming unintelligible”

Diary December 1999

Sunday night blues

What’s the deal with Sunday nights? Yesterday (Sunday) we had a lovely day. Floor and Ward were in pyjamas until 1:30. They had both built K’nex structures. Hein went into town to buy presents for Sinterklaas (a Dutch tradition similar to Christmas). In the meantime, we were making presents for each other. Celine Dion on the radio, candles lit, soda and biscuits. I asked Ward to put the kettle on, but he doesn’t know how. Floor helps him, but is a bit too assertive. The harmony is gone. Hein comes back home and accidentally spoils that Ward will be getting a steering wheel from Sinterklaas, something that can’t really be un-spoiled. Continue reading “Diary December 1999”

Diary January 2000


Christmas break is like winter hibernation; we go to bed late, sleep a lot and wake up in the PM. Floor especially is a huge sleepyhead. The weather is fitting, too; the Netherlands is covered by a grey rainy blanket. It truly is December. We barely had any friends over, spending most of our time together as a family. We weren’t idle, either. We saw Oliver Twist in The Hague, Floor did A Christmas Carol which was beautifully executed, we celebrated Christmas with friends and family and spent our days playing games and lazing around. Continue reading “Diary January 2000”

Diary February 2000


Ward received a thank-you card from my ex-colleague Jan for acting as a translator whenever he couldn’t understand what I was saying. Ward had to constantly pause and resume his video game, for which Jan apologised. I sometimes forget that, despite all of the external help I get, I rely the most on my family. Last Saturday Ward and I had the house to ourselves while Hein was out shopping. Ward wanted to play outside and asked me if he could. “Of course,” I told him. “But who’s going to turn the pages of your newspaper?” he asked me. “You know what? I’ll pop in every once in awhile to see if you need anything.” Detecting and solving a problem in a matter of seconds. 8 years old and already a problem solver. I have a splendid son! Continue reading “Diary February 2000”

Diary March 2000

Spring break

This year we went to Limburg on spring break. We rented an actual mansion in Gulpen. Nine bedrooms, a lounge area, a bay window with a stunning view of the hills, not to mention the tennis court. We felt like royalty. The house wasn’t very wheelchair accessible, sadly. We managed just fine, though. I had a sink in my room and we’d brought our own raised toilet seat. The bathing facilities weren’t suited for me, so every morning I was hand-washed by Hein. Other than that, the location was perfect.