Jeanet van der Vlist’s Diary
For the past month, Ward has become a Harry Potter fanatic. My GP suggested he read the books to me. We started last night. Instead of flipping the channels after the evening soaps, I was read to. I really enjoyed it. Continue reading “Diary June 2001”
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”
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”
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”
“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.
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.
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.
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.
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.
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.
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”
Miscommunication
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”
After Monday, everything has gone back to normal. I wasn’t looking forward to it. I liked the holiday lifestyle: going to bed late and sleeping in. Being around Hein and the kids. And January is always such a boring month. I noticed that I was more anxious for Hein to come home during the first week. By the second week of January, I had adjusted by his comings and goings. Still, I will never not feel relieved when he gets home. Continue reading “Diary January 2002”
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. Continue reading “Diary February 2002”
It sounds strange, but the fewer faculties I have, the less I’m bothered by what I can and cannot do. These days, I’m losing less than I was during the first few years, I’ve been like this for a long time. At one point, I wrote down when I’d last done certain things, like biking, autonomously using the bathroom, etc. I was consumed by it. Once I made that list, that was that. One grows a thicker skin. The sadness I felt when losing motor functions lessened. I’ve banished some of those thoughts, perhaps subconsciously. Sometimes I do feel envious when the kids cling to and cuddle with Hein. I’m not much of a cuddler anymore. It’s a mutual effort. But this pain, too, is only proportional. Maybe I’ve just become desensitized. “Don’t think about it too much, Jet” was my mantra back in the day. Continue reading “Diary March 2002”
One of Hein’s uncles also has ALS. My mother-in-law keeps us informed. Today my mother-in-law, Floor and I were chatting around the dinner table. Our conversation was going down a grim avenue. I don’t want to discuss stuff like this with the children around. But how does one bring a conversation like this to a halt? I gestured at Floor a few times. My mother-in-law didn’t pick up on it. Walking away was not an option. Shifting the subject wasn’t either. Bluntly, I yelled “stop”. Seeing as my mother-in-law can’t understand what I say, Floor had to translate. And Floor thought I was being terribly rude. With some shame and an accusing look, she told her grandma to “stop”. My mother-in-law attempted to resurrect the conversation, but again I yelled “stop it”. Sure enough, the subject was dropped, but because of my insolence, Floor is mad at me. Granted, nuance and courtesy are things of the past for me. But how do I explain that to Floor? Continue reading “Diary April 2002”
I started May off the right way with buying some potted plants. I know you’re actually supposed to wait till mid-May, but every time I get back from a holiday I get the urge to do some gardening. We buy the same things each year, a bit boring. Visiting other people’s gardens only confirmed my opinion that gardens should be kept simple. Not too much variety, not too many seasonal plants, not too many bulbs (while daffodils do look pretty, I can’t stand the way they look after they’ve stopped blooming) and use symmetry, which makes it look more tranquil. Because of that, we got two of everything: two potted daisies and different pairs of geraniums. I’m completely satisfied. Continue reading “Diary May 2002”
Through my friend Tineke, who works at a charity in Leiden, I’ve gotten my hands on a report I get to edit. The report entails plans for an internet cafe in a poorer neighbourhood. It’s agreeable work; correcting, removing and clarifying the text. Besides, it’s a fun and well-thought-out project. I’ll also be involved in the organisation’s annual report. It’s a welcome addition to my daily routine. Continue reading “Diary June 2002”
Talking to people while I’m sitting in a wheelchair is a delicate procedure. When it’s just me and my accompanist, I prefer my conversation partner in front of me. When we run into someone on the street, my back is usually to the person striking up conversation. When that happens, I always screech “turn!” so I can at least look at who’s talking. That doesn’t mean I’ll feel involved; I’m way lower than anyone else, after all. But like that, I can at least ask questions, through Hein. The worst thing is being in between two people having a conversation. Hein, unreachable behind me, the person he’s speaking to in front of me. It makes me feel superfluous, and I lose interest. Continue reading “Diary July 2002”