Diary January 2001

La Vie en Rose

My book was warmly received. The best praise I got was from my cousin Jos:
“Whenever we talk about you at birthdays, it’s mostly about the symptoms of your disease (“she can’t do this”, “she needs help with that”, etc.), because of which my view of your life became very skewed. Whenever I thought of you, I thought of someone who’s wasting away in a wheelchair. Maybe that’s why your insights on your life are that much more significant. Sure, it’s sombre at times, what with your deteriorating motor skills, but it’s largely overshadowed by your positivity.” Continue reading “Diary January 2001”

Diary February 2001

Head mouse, continued

Paul, Hein’s brother, installed the head mouse on my desktop computer. It’s much more functional. A much larger screen, a cursor that doesn’t vibrate, a more responsive sensor area for the mouse, not always having to recalibrate my mouse and audible feedback whenever I press a button, which prevents accidental double clicks. Not to mention the programs that I didn’t have on my laptop. In short: I’m content. The advantage of using the head mouse on my own computer is that answering my own mail and using the internet is once again doable. I’m more self-sufficient and I can use my PC again, instead of aimlessly sitting around. I wrote this part in 25 minutes. Not bad. This month’s entire diary is written by using the head mouse. It’s working. I do constantly forget about the dot between my eyes, so whenever I forget to take it off before bed or using the shower, it becomes unusable and ends up in the trash. Continue reading “Diary February 2001”

Diary March 2001

Floor takes a day off

Floor was pushed to her limit, what with her daily acting repetitions, having writing a book report, two impending quizzes and a sizeable history deficit. In short: time for a sick day. At 9 o’clock Floor came downstairs, pyjama clad. She didn’t change out of it that day. What she did do that day was work. Tests, reports and four history chapters on the three religions were all finished and prepared by the end of the day. I found it homely. I learnt a lot about religion and I’ll never confuse those new Eastern-European countries again. Continue reading “Diary March 2001”

Diary May 2001

Borrowed time

In May, three years ago, I was diagnosed with ALS. The symptoms manifested more than four year ago and last May, my PEG was installed. It wouldn’t be a stretch to call the month of May my ALS jubilee. Statistically, I’m in the critical stage: the wrong side of the statistic; the borrowed time. According to the books, ALS gives you three to five years to live. Whether the countdown starts after the diagnosis or the first manifestation of symptoms is up in the air. As regards respiration, I’m in critical condition too. By the end of April, my lung capacity was one litre. By now, I have 30% of the lung capacity of the average woman my age. Fortunately I’m not suffering from carbon buildup. Secretly, I hope my lung capacity is a bit higher, because I get nervous during breath tests. What is more concrete is the fact I have to accept that I am truly on borrowed time. Continue reading “Diary May 2001”

Diary July 2001

Tweety and Dropje, the neighbourhood chicks

The new neighbourhood trend is finding and raising chickens. It started with Dropje, found at the hospital, allegedly without a mother. The next chick would be Ward’s. That was Tweety, an adorable brown/yellow chick. By day, they’re neighbourhood chicks. We made a big coop, which was installed next to our front door. At night, the chicks are brought inside. Most of the time, the two birds are at our house. Whenever anyone starts walking, they trot along: tip tap, tip tap. When we watch TV, they’re on the couch with us. There’s excrement everywhere. I do find it cozy, but as the chickens grow bigger, so do their droppings. Continue reading “Diary July 2001”

Diary August 2001

A phone call at quarter past eight in the morning

For one and a half years, I’ve emailed with Roel van der Kley, a fellow ALS patient. I always enjoy our correspondence. He has a good sense of humor and a knack for relativisation. It’s odd, but I have no mental image of Roel because we’ve never met. Roel shys away from ALS Days, but that may be because he spends lots of time in Tuscany. Just when we had agreed to meet up, and Hein even spoke to him on the phone, we got a phone call early in the morning. Roel died peacefully in his sleep on the evening of August 5th. I reread all of his letters on Monday. They’re gems. Many tears were shed. Continue reading “Diary August 2001”

Diary September 2001

The farmer experience

The chickens have gotten bigger and definitely lost some of their charm. They still cheep instead of clucking and still haven’t grown crests. I expect we’ll set them free this weekend. We’ll have to see how they do in the wild. Other than that, we harvested 1.5 kg of tomatoes, 2 apples and enough potatoes for dinner. Not bad, considering we’re beginners. Continue reading “Diary September 2001”

Diary October 2001

“You may have a fresh start any moment you choose, for this thing we call “failure” is not the falling down, but the staying down.”

Mary Pickford

I found the abovementioned adage while making the new newsletter for the Lawrence LeShan Foundation, a spiritual organisation offering guidance to people with life-threatening diseases. It’s the third newsletter with me as the lead editor. I was very moved by this motto.

Watching the dog

Lieke is watching Buuf’s dog. Buuf [a shorthand for “neighbour” -Ed.] is one of her former, you guessed it, neighbours. Thus, when she cares of me every Thursday, she brings her dog along. She can watch us both. Nervously, the dog entered the room, jumped on me and licked my hands. Horrible. Defenseless, I accepted my fate. Now I remember why I don’t want a dog. This one constantly wants to sit on your lap. Lovely. Whenever Lieke feeds me sandwiches, she squeezed herself onto Lieke’s lap. How cozy, the three of us, huddled together eating a sammich. The dog and I, in a constant battle for our sitter’s attention. Ward came home and the dog bombarded him with love and affection. But of course, walking the dog is wonderful. Along with the neighbourhood kids, a proud Ward gallivanted around with the dog on a leash. She’s fairly obedient. And I, too, warmed up to the dog by the end of the day. Of course, the inevitable question was asked: “Can we get a dog?” Luckily, the idea was quickly nipped in the bud.

The aesthetics of a PEG

Applying a PEG (feeding tube) is no cakewalk. Many ALS patients dread it; because of practical, emotional and aesthetic reasons. Well, I’ve given up a lot of aesthetics already; no more make-up, wide elastic trousers, sweater vests instead of the smart jackets I used to wear to work, no shaving my legs or armpits. The only thing I did was dye my grey hair again. I’m a practical person. That’s easier for my loved ones. Aesthetically, getting a PEG wasn’t a huge hurdle. A dear correspondent of mine doesn’t find a PEG appealing at all. However, in the meantime she is losing a lot of weight, to the point that she’s become tired and lifeless. She’s wearing herself out. She has been admitted to hospital. First, they’re going to try to fatten her up with pureed food and such. If that doesn’t work, she will need a PEG. She’s expecting to remain hospitalized for 5 weeks. We visited her on Wednesday. Lots of sleep, eating for three and being spoiled a bit is her therapy.

After two weeks of hospital, she hasn’t gained an ounce, so she decided to get a PEG, which she pronounces PECH. Because she wasn’t looking forward to having an endoscope in her throat, the PE(CH)G will be installed with a radiographer. It’s an external operation with X-ray and only requires a small tube in the throat in order to make the knot. No gastroenterologist needed. Apparently, this method is frequently used in England on bulbar ALS sufferers, because their bulbar region is so sensitive.

Slightly nervous

Thursday was the first day with our new help, Astrid. I was a bit nervous all morning. Not because of eating or drinking. No, as long as I can sit on a chair, I’ll be fine. My nervousness is for the moment I have to use the bathroom. All morning, I debated “should I go now or should I wait?” Eventually, I decided to make the leap; we went to the toilet. It went well and I spent the rest of the morning feeling relieved. I’m like that with all of my carers who sporadically help me use the bathroom. Would they still be able to adhere to my old routine?


With ALS, the subject of respiration is unavoidable. Many neurologists are against artificial respiration for ALS patients; the disease is too progressive. Even nasal intubation is advised against (like a correspondent of mine heard from her neurologist), because if ALS is above the neck (bulbar), it won’t be possible to do it nasally, instead needing a tracheostomy (a hole and tube through the throat). It would be possible if the ALS is non-bulbar, but if it’s both, intubation is impossible. One’s facial muscles would be too rigid, or one’s mouth would gape too much to properly install a nasal tube.

I, a bulbar patient, have been going to the Centre for Home Respiration in Utrecht for three years and I have never heard about the impossibility of nasal intubation. Fortunately, a dear correspondent wrote to an American expert on the subject. What a nice fellow, writing back this quickly and elaborately. Last but not least; the answer is reassuring. There’s so much medical incompetence in the Netherlands, or at least there’s too many prejudices and aversions in the medical world.

His answer was as follows

Regarding your question: “…do bulbar patients skip the mask ‘trial’?”`A one word answer is: “No !” . To breathe or not to breathe…. That is the question! It is certainly not true that “a mask is never an option for a bulbar patient.” It is true, however, that tracheostomy needs to be considered as ALS progresses, particularly as bulbar impairment becomes more severe (that is, if long-term survival is desired).

The longer answer is that bulbar impairment with ALS is a continuum from mild to severe. Nasal mask Ventilation (noninvasive) is often successful for people with “mild”, or “mild to moderate” bulbar impairment. The pile up of secretions can become a problem with nasal ventilation, if secretions are pushed down into the back of the throat and airways, thus blocking air exchange and causing gagging or choking. However if one has an effective cough (using the assistive cough techniques) and secretions are not a big problem all the time, then nasal ventilation may work. It is very reasonable (unless bulbar impairment is severe) to arrange a trial of nasal ventilation. If it doesn’t work then go on to the next option (tracheostomy or palliative care).

Edward Anthony Oppenheimer, MD, FCCP
Pulmonary Medicine
Los Angeles, California – USA
Email: Eaopp@UCLA.edu


I’m glad we went on so many trips and enjoyed the nice October weather. Since we’ve had kids, we’ve participated in the morning and afternoon festivities on October 3rd (The anniversary of the end of the Siege of Leiden). After the parade, the festival became a drunken mess and the atmosphere turned hostile. Thus, we made our way back through Breestraat, watched the water show and watched another parade (like we always do). We’ve been doing it for years, but it looks like it’s coming to an end. Floor couldn’t come this year. She went out with her friends, returning at midnight. After the fireworks, we went to pick her up. Ward did come with us, but he had other plans with his friends at three, so we left early. We ate hotchpotch and that was it, the 3rd of October had passed.

The next night, we were supposed to go see the film Nynke, but seeing as it played on a screen in an upstairs area, we watched La Pianiste instead, not my preferred choice. It’s a hards ruthless story. It did make an impression in me, unlike Bridget Jones’s Diary, so at least it was intriguing. We had drinks afterwards, which was nice. Despite the fact that it was already October, we sat outside on a heated terrace. While I barely drink anymore (I used to drink a lot), I enjoyed a delicious Grand Marnier.

On Sunday, we visited Dordrecht with some friends. Every first Sunday of the month, a whole route of charity shops and art galleries open their doors. Gorgeous city, Dordrecht, it was a pleasant afternoon. Prince Willem Alexander and Maxima walked the exact same route the day after. The kids, however, are less and less likely to tag along. Floor’s excuse was that she had to do homework and Ward’s neighbourhood football tournament was finally happening. There weren’t as many people as we had hoped, but it was great fun nonetheless. I love the fact that they organise things like that.

Op school stonden ze op het bord geschreven,
het werkwoord hebben en het werkwoord zijn;
hiermee was tijd, was eeuwigheid gegeven,
de ene werkelijkheid, de andere schijn.

Hebben is niets. Is oorlog. Is niet leven.
Is van de wereld en haar goden zijn.
Zijn is, boven die dingen uitgeheven,
vervuld worden van goddelijke pijn.

Hebben is hard. Is lichaam. Is twee borsten.
Is naar de aarde hongeren en dorsten.
Is enkel zinnen, enkel botte plicht.

Zijn is de ziel, is luisteren, is wijken,
is kind worden en naar de sterren kijken,
en daarheen langzaam worden opgelicht.

Ed Hoornik

With this poem, Gerard said farewell to me. The last three lines were especially important to him. Gerard was my correspondent and friend for more than 6 months. He was like my father; he started every email with “Hello, girl”, and he encouraged me to keep publishing my diary. He was an enthusiastic reader. I got an email with this poem one day before he passed. I’m thankful that he thought of me, even in his last moments.


Yesterday, my toenail was removed for the second time. My toe refused to heal and kept getting infected and growing fibromas. After half a year of messing with Biotex, silver nitrate and “open-air therapy”, my GP had had enough and referred me to a surgeon once more. Apparently, there is too much pressure on my toe. Yesterday was the day. The injection is the worst part, along with the fact that the bandages can’t be removed for two days. After moving me though, the bandage already unraveled after half a day. Thus, we put a normal bandaid on it and I’m already wearing shoes again because it takes away some of the pain. Let’s hope it heals this time.

Off day

Sunday was one of those off days. It happens every couple of months. I wake up with a headache. Immediately, the anxiety comes in: “I hope it’s not from nocturnal chest tightness that’s common in ALS patients”. I’m cold and I feel nauseous. We cancel on our afternoon guests. I don’t eat anything all day. To make things worse, I got a terrible email. I keep crying about it, which isn’t making my head ache any less. At night, we received the news that Gerard had died. What a day. Luckily, I slept well and woke up the next morning fresh and without a headache.


On Saturday evening we went to a Hester Macander show, a comedian. The theme of the show was focusing on looking for passion, instead of on the things we do to keep ourselves busy. It resonated with me. I’ve wondered before what I would like to be if reincarnation were real. My conclusion is that I would like to be passionate about one all-overshadowing thing. I would love to make music. I think music is one of our most primal emotions, a language that transcends culture. Making music together is energising. Another possibility is becoming a photographer, a very ambitious one of course, one does have to be unique. Or I’d start a shelter for homeless children in a third-world country. Everyone probably has dreams like that. That deep down, there is a great person within you. The reality is, you’re already doing the best you can, which is a monumental task in itself.


October was a good month. Pleasant weather that made going on trips possible, even during autumn break. The new help is doing fine and that’s calming. The renovation of the bathroom and shower is taking forever, but we’re not really working on it that hard. Getting into the one square metre shower stall is still manageable. And I’ve warmed up to the commode. I do miss having a project, like my book last year, or the musical the year before. I’m looking for something new, but I don’t know what. For now, I have plenty of work to do before Sinterklaas.

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. Continue reading “Diary November 2001”

Diary December 2001

Multiple people have told me that the piece about the PEG operation I put out last month was about me. It was not. It was written by a friend who was rapidly losing weight and dreading an esophageal PEG operation. I thought it would be informative for ALS patients, because the method described is a unique one. I’m sorry if it caused any confusion. I’ve had a PEG for a year and a half now, installed regularly with a tube through my throat. Continue reading “Diary December 2001”