Diary September 2000



Every Dutch ALS patient recently received a request to participate in a nationwide study on the effects of creatine on muscle deterioration. Earlier studies abroad had failed because there weren’t enough ALS patients willing to participate. They have a point. Why would you risk the chance of getting a placebo when creatine is so readily available? In short, I’m getting the sense that this is a case of “what country’s patients are most willing to be medical guinea pigs?” It turns out that creatine is free in the Netherlands when you present a prescription at the chemist’s, even if you’re not partaking in the study. A correspondent of mine wrote one of the study’s researchers about where to get creatine from without enlisting for the study. The researcher wasn’t too happy with that, so he told my correspondent that creatine may be catastrophic for the kidneys (which is true, but only in high concentrations) and that it’s potentially lethal. It almost sounded like a threat, and for what? Just because his study was falling apart? That’s no way to behave. He’d do the exact same thing if he was in our position.

Mental well-being

Sometimes, people who haven’t seen me in a while email me, asking how I’m doing. Usually, I refer them to my homepage, which goes into detail about my physical deterioration. I hate writing about that. Like I’ve stated before, I’d rather stick my head in the sand. Recently, a good friend of mine asked me the same question. It was the first time I thought about the possibility of someone not wanting to know about my physical well-being, but my mental health. I have got to say, mentally I’m feeling completely fine. How did I get this resilient? A happy childhood? Inherent optimism? Always looking forward, never looking back?


Since I’ve started going downstairs at 8 (it used to be 9), my tea consumption has increased hugely. Drinking is beneficial to your health and bowels. My new morning routine did have an unexpected side effect: the times I need to pee have become irregular. It wouldn’t be a disaster if it wasn’t for the tight schedule we set up for my bathroom visits. On Tuesdays, our neighbour helps me use the toilet at a set time. Currently though, this regularity is the source of my stress. I hope my bladder quickly recovers from its confusion and goes back to its regular schedule.

Homeopath 2

I visited the homeopath again yesterday. It was the first time that my score was above 40, although I’m not sure what that score means for my ALS. Still, higher scores feel more rewarding (what is it with me and performance based systems?). He had read an article about a Mexican homeopathic technique. He told me he uses it too, but the machine they use for it in Mexico is more advanced than his. My homeopathic appointments are once every five to six weeks. The therapist had seen an influx of ALS patients, largely because of Myocafe, an online forum for people with muscle diseases. When I got home I felt ill, which wasn’t the first time. I don’t know if it’s a good or a bad sign, but what I do know is that it’s not pleasant.


For as long as I’ve used Rilutek, I’ve had brief periods of time where I stop taking it because it makes me feel faint and drowsy. As soon as I did, those symptoms vanished. My doctor advised me to at least take half a pill, which remedied the drowsiness somewhat. However, I sometimes fall asleep at random intervals in the morning. It feels like sleep ambushes me. I’ll sleep for an hour and feel fine afterwards. My sleeping fits are happening earlier and earlier. Last week I fell asleep at 9, just a few hours after I woke up. Because of that, I’m off Rilutek again. I’m still waiting to see if the symptoms disappear as quickly as I hope, but it’s 11 o’clock right now and I feel fine. Complaints about the side effects of Rilutek are commonplace.

The napkin, a controversial piece of cloth

I’ve been opposed to using a napkin during dinner. It look ridiculous. At this point though, it’s become a matter of using a napkin as a bib or changing shirts after every meal. After a cost-benefit analysis of the situation, the napkin was the clear winner. I started using them on holiday and I didn’t mind much, despite how public it was. It was different back home. I hate it. People apparently see a napkin as an invitation to make a mess while feeding me. I hate nothing more than a dirty napkin. I think that I’m the only person who’s allowed to spill on my napkin. It’s horrific. Whenever people ring the doorbell during dinner I gesture at the thing, in a way that says “get this disgusting thing off me, don’t let anyone catch me wearing it!” Usually, people are quick to intervene. It’s always such a relief. The moment I’ve swallowed the last bite of my meal, the same procedure follows. I know the napkin is necessary, but that doesn’t make it any less shameful.


I like to put things into perspective. Sometimes, one has to take a step back, look at their own situation and laugh about it. It’s like that sketch Bill Clinton made about his last days in the Oval Office. One sleepy reporter in the press room, bringing Hillary the lunchbox she’d forgotten, biking through the white house out of boredom, etc. Amazing. I can’t imagine seeing our PM doing that. The other day I got an email from a fellow ALS patient and I couldn’t help but laugh about the stories he told, no matter how tragic they were. They were so relatable. While writing he distances himself from his own life, while still knowing when to leave in certain details and dramatic moments. It’s a great writing style. He also had some comments about the parts about ALS in my diary. He told me that, despite the many forms ALS takes, despite the different ages at which it manifests, there is a certain familiarity to every story. I hope my diary and book can perpetuate that familiarity. I hope it grants people the insight to laugh at their own situations.

My booklet

My booklet is almost done. It’s going to take a while to cross all the T’s and dot all the I’s, but it’s really coming together now. Distribution is our final hurdle. Should we distribute it widely or keep it limited? It’s a fun project. Working together with different people is very rewarding. It’s so much different than the narrow introspection I do in my diary.

About myself

I wrote a short text about myself using a set of questions provided by Stichting Valscherm, a Dutch organisation that organises activities for ALS patients:

Allow me to introduce myself. My name is Jeanet (1955-2007), married to Hein (1953) and mother to Floor (1988) and Ward (1986). We live in Leiden, the Netherlands, in a house built in the 1930s. I was raised in a household of psychologists, but I have primarily worked as a organisational advisor and project manager at a telecom company. My hobbies are/were: gardening, hiking, going on trips and cycling.
Is that all there is to say about me? No, I don’t think so. Those are my defining characteristics to the outside world. When I got ALS ten years ago, many of these traits diminished. One has to redefine themselves. I am not defined by my possessions, or my actions. One falls back on a basic set of traits: the personal characteristics that make up the essence of you. I have, for instance, my willpower, which allows me to plan out every one of my days. My optimism, allowing me to concentrate on the present and not dwell on the past. On the other hand, there is my impatience, which often gets in the way while I continue to grow more dependent on others. My vanity and pride, which prevent me from going outside without feeling some kind of shame. Despite this, I would describe myself as a happy person. I’m able to handle living with ALS pretty well, largely because of the loving people that surround me.
Another great help is this website and people’s reactions to my story. I never expected putting out anything as personal as a diary. I’m not much of a sharer. I’ve been apprehensive for a long time about making my diary public. Reading the diary of a fellow ALS patient from the US convinced me. A diary can be informative for fellow patients as well as friends; it offers insight into my disease and how I deal with it, but it also shows that life goes on despite ALS. As my ability to speak recedes, the monthly publication of my diary helps fill that void. For me it’s a way to show everyone that I’m still here, that I’m not just a helpless shell, but a person leading a “regular” life.
Below you can see a poem written by Steve Shackel. I consider it my motto.

When I wake each morning I decide…

This can be a good day or a bad day – my choice.
I can be happy or sad – my choice.
I can complain or I can cope – my choice.
Life can be a chore or a challenge – my choice.
I can take from life or give to life – my choice.
If all things are possible,
How I deal with those possibilities is – my choice.
Steve Shackel April 2000

Homepage anniversary

I launched my homepage in August of 1999, making it one year old. It means that I’ve described all of my yearly rituals. Sometimes, I’m afraid that I’ll run out of things to write about. Other times I’ll have so many ideas I’m bursting at the seams. Whatever, I’ll keep writing as long as I can think of things to write about. At least it gives me something to do.


Floor was doing her homework in the garden yesterday. That doesn’t happen often, she usually does it with her friend Emma, which takes about an hour. Whenever she does work at home, she’s downstairs. The first time she was assigned homework she immediately took it to my desk, which lead so a small territorial dispute. Yesterday however, she was sitting at the dinner table. I joined her and together we made our way through her History homework. Floor read the chapter to me, after which we did some exercises. Floor is one of my best translators, so we chugged through her homework like a train. We even worked through part of the following chapter. Floor told me she had a good time and that she was certain that we had answered all of the answers correctly. I hope so. I loved it too, so I told her I would help her anytime she asked. She’s taken it into consideration.

Artificial respiration

I watched a documentary about artificial respiration on TV yesterday, but it wasn’t that informative. It didn’t really convey what it’s like to use an artificial breathing device and the alternatives for the standard oxygen masks weren’t even mentioned. The pros and cons for resuscitation weren’t addressed that well. It’s such an individual choice. The pros and cons are hugely subjective to a degree that it’s not really a discussion worth having societally. Most surprising of all: I didn’t find it emotional at all. I didn’t cry once.


We’re winning too many gold medals. I’ve seen most of them on live TV. I didn’t use to care about the Olympics, but today it couldn’t be more different. I read every newspaper article I can find about it, I know the exact dates and times that the Dutch team gets to compete and I watch as many of them as possible. I’m not the only person who has suddenly become chauvinist because of the Games. I do wonder if I’m the only one who gets this snively whenever the Dutch team wins a golden medal.

Broken keyboard

I write on my PC using a WiViK, a virtual keyboard I control using my mouse. Laser-guided typing is only optional. The great thing about WiViK is the inbuilt word prediction. I’m one simple click away from a complete word, which saves me loads of time. The keyboard also registers the user’s preferred words, making things even easier. It’s like a pocket version of your own writing style. The other day, I switched on my computer only to find that WiViK refused to start. I was devastated. Hein quickly called his brother Paul. Paul suggested reinstalling WiViK. I panicked. I didn’t want to lose the twelve months of personalized word predictions. Fortunately, Paul was willing to come by that night. He re-installed the program without deleting my personal vocabulary. The kids timidly asked me if the operation was successful, obviously knowing how important it is to me. Paul took the time to decontaminate my PC some more. I’m so glad I have a helpful brother-in-law who knows what he’s doing.