Diary November 2001


Too much

Sometimes, enough is enough. Even on his days off or after his bicycle trips, Hein comes home to a household in need. And it will always be that way. However hard I try to amuse myself. The social workers’ schedule is based around his work hours and whenever friend take care of me, it’s Hein is working too. It doesn’t exactly ease the burden on Hein. In fact, sometimes someone else should be taking care of me when Hein is home, like my mother does. Then again, it’s weird to be at home with a stranger around. And our kids are young and thus not always deployable. Hein does have the option to go out. I can stay home alone for up to two hours, a timeframe dictated by my bathroom use. But I think that “having had enough” is recognisable for many spouses of ALS patients. Very understandable. Like that, we carry on.


It feels like my head is becoming heavier. Whenever I’m drinking, my head quickly falls forward. Cups have to be held lower and lower. Eating and drinking is draining. I have to eat with a level head. After that, it droops back down. Up and down, it’s a lot of work. Sometimes, I have to call for a timeout. Eating itself is still manageable, even sandwiches. Using the keyboard using my head is the same, although it’s very time-dependent. It’s especially hard during mornings. By the time the afternoon comes around, I’m more flexible, apparently. That doesn’t stop me from groaning with exertion while I’m using the computer. Every word is a battle. I generally make too much noise.


It starts the moment I go to bed. Whenever I stretch I make a cacophony of sound. While getting dressed, I squeak. Eating is also accompanied by a lot of noise. Not to mention my PC usage. While riding my wheelchair, I hum. And at night, I have to cough up phlegm. I take a big breath and cough hard, until the mucus is gone. When I’m in company, people think initial big breath is a sign that I’m about to speak, so all eyes are immediately on me. What follows is a disappointing cough. The eyes turn away again. After drinking I usually burp. Not good for table manners.


If you go for a walk with me, prepare for a lot of greetings. “Do you know that man/woman?” my accompanist repeatedly asks me whenever a complete stranger greets me. Well, no. But my invalidity brings the best out in people. One ride through the park and I’m bombarded with “hellos”. Too bad I can’t wave.

Another benefit. The other day, we went to the cinema under the assumption that our friends had already bought tickets for us. In advance, we went to look for an employee who could help us use the lift. The young man didn’t dare ask to see our tickets. We vaguely referred him to our friends. Only afterwards did we find out that nobody had paid for us. The same thing happened in the theatre when we went to see Hans Teeuwen. Not very popelike.

Other examples. We were at the hospital and had been waiting for a lift for a while. At the last moment, we were joined by five guys in lab coats. The lift arrived, and in they went. They gestured at us to join them, but we obviously wouldn’t fit in the lift. And off they went. Not a smidge of shame. I can’t stand those types, so insensitive and callous (there are exceptions though).

Standing patient lift

Today marks the start of the standing patient lift’s second round. Astrid, our new help, didn’t feel safe lifting me anymore. She found it very hard to get me off the ground. She holds me under the arms, her hands on my back. She lifts using her legs. My other helpers lift with their arms, using their hands. It does require more dexterity because they have to quickly grab me by the arms after lifting me up, which is often a delicate process. Either way, Astrid has dropped me back into my chair twice now. There I was, slumped in my wheelchair. My legs spastically went rigid and shot forward. Good luck trying to get me up again. By a stroke of luck, my neighbour was visiting on both occasions, so in no time I was seated again. Shaking and barely talkative because of emotions. It undermined my trust. That’s why we got a lift. Not for me, but for Astrid. She’s lucky I like her so much, otherwise I would be a lot more reluctant to use a lift. I still am a bit, but I’m fine with it nonetheless.

Yesterday I had my first go on the lift. Afterwards, I spent the whole morning shaking. Horrible! But yesterday afternoon and this morning we did some dry runs and they went well. I only use it in the bathroom. Sometimes I wish I were a man, that way I could just stay seated. On the other hand, having someone else stuff your penis into a bottle can’t be too comfortable either.


I went to Utrecht again. Measuring my lung capacity is becoming more and more difficult. Getting the mouthpiece in is difficult and my lips are too weak to completely seal it. After that, a clothing peg was put on my nose and I was supposed to inhale and exhale through my mouth on cue. I couldn’t get the timing down. I was better at the exercise that measured my respiratory strength. I didn’t have to use the mouthpiece and peg, for one. I declined a little bit, I’m on 25% now. Luckily, my blood gases are steady. At the same time, they checked for carbon monoxide, a sign of breathing problems. They’ll do the same thing again in three and a half months.

Is it important?

Ward does understand what I’m saying, but not well. We often resort to spelling. With great difficulty, I formulate the letters and Ward faithfully keeps track. Suddenly, he was done and he asked me: “Is it important?” It killed me. What is important? Nothing, really. Except for the words “I love you,” nothing is that important. And I don’t say that enough. Still, people need conversation in their lives. That’s why his “is it important?” upset me so much. No, not really. The conversation ended.


I’m full of little anxieties. My movement in particular is a continuous source of anxiety: are my feet straight? Am I coming in at the right angle? Is the toilet seat down? Are my arms properly supported (my arms are very heavy)? Won’t they leave me on the toilet for too long? But the PC can also be a source of problems if my caretakers don’t know how it works. I try to stay ahead of problems like that, so I always ask Hein if the PC is properly set up before he leaves. My mother-in-law doesn’t understand me. Without communication, I’m truly handicapped. And the PC is an enigma to her. This morning, the programme used to operate my mouse was hidden behind my on-screen keyboard. Not to worry, just minimise the window and open the programme. The thing is, I couldn’t click, because the programme wasn’t turned on yet. Try explaining that to your mother-in-law. Eventually, she called Hein who explained it to her. But the button to minimise a window is very small, so she kept unintentionally misclicking. Hein had to go to a meeting and hung up. Adrenaline coursed through my body. Eventually, my neighbour Lisette fixed it. I’m saved. ALS makes the smallest potential problems come to light.


Lately, my neighbour has repeatedly served as my guardian angel. Did I slump in my seat? Do I need the bathroom while Hein is away? Even now, with simply clicking a programme. Lisette knows what to do. I’m glad she’s there for me.

November is Virus Month

In late October, my PC got infected through a Word document. Word and my onscreen keyboard were slow and barely functional. When we decided to do something about it, the problems just got worse. Turning the computer on was marred by lots of error messages and turning it off was done by unplugging the PC. I never open attachments from strangers or people with suspicious, but this virus activated itself when I opened my mail, which would be necessary to delete the email it came in. The virus didn’t do that much damage to my pc, but it did send many emails the likes of which it came in when I accessed the internet. It’s still doing it, I keep getting infected emails back. Sorry, if you got the virus from me. By now, it’s at least 45 people. On Friday, November 30th a specialist remedied the damage somewhat, but it’s still suboptimal. All of this while I still have to write my Sinterklaas poems.


We celebrated Sinterklaas early, on December 1st. Apart from one nephew, the whole family is there. Some of the kids still believe, so we sang songs beforehand, a black-gloved hand threw sweets through the window and the presents were delivered to the front door. We read lots of poems.

An external PEG operation, by Ineke Mensink

The way it was explained to me, I would get local anesthesia on my stomach, but it would only work on a surface level, meaning that if they were to go deeper it would be painful. It would only take a while though, completely manageable. I’m not easily intimidated, so I wasn’t worried.

After two tries, the nasal tube was installed. The first time they tried, I vomited it out. After it was installed and attached to my nose with a bandaid, the real heavy lifting started. They had to make four holes, one for the PEG and three for the anchor points for the catheter below the skin. Making those holes is a process not unlike hammering a nail through a plank, but it takes a few nails of increasing size to make a hole big enough. And now multiply that by three. It’s only possible to relieve subdermal pain with general anesthesia, which is a forbidden fruit for me.

If I were to tell you that the pain was excruciating, that would be a gross understatement. All in all, it took 1.5 hours instead of 30 minutes. Later, it turned out that I was in an unusual amount of pain after the operation, which is only remediable with morphine. I use it to this day because the pain is unbearable without it. The problem, you ask? Apparently, during the insertion of pins into my stomach, one of them grazed my ribcage, so I have a bruised rib now. As a result, breathing is now extremely painful.

The pain I’m experiencing right now is not from a wound but from the clamps that were applied to keep the catheter in its place. Tomorrow, they’ll be severed. Eventually, the metal clamps will just be pooped out, they naturally evacuate the body. The clamps are inside me and kept in place by metal pins that were inserted from the outside. Those pins are cut after 11 days, the time it takes for the stomach to repair itself. In two months, the catheter will be replaced and a button will be made. It’s a sort of cover with a little valve so I get my flat stomach back, as well as the ability to wear normal clothes. It’s even invisible when wearing a swimsuit. I can even take it into the sauna, I’ll just put a bandaid over it. Nobody will suspect that beneath it is a hole directly to my stomach.

I would like to clarify that this was my personal experience and it doesn’t have to go this way. I had lost 30 kilos, so I didn’t have a gram of protective fat. It could have been a number of factors that contributed to how badly I had it. I would never discourage usage of this method for people unable to be operated on through the throat. I am still a wholehearted proponent of this method, especially because the installation of the button is also done externally, not through the throat. It’s very useful for patients of bulbar ALS. What does have to be taken into account is that it is still an operation, and it did result in an obvious acceleration of my ALS process.