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.

Head

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.

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.

Greetings

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.

Air

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.

Anxieties

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.

Neighbour

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.

Sinterklaas

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.

Het bericht Diary November 2001 verscheen eerst op Living with ALS.

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.

Broken appliances

Last night, my chair started acting up, tilting forward, making me slide off. Luckily, Hein was next to me and saved me from a swift slide to the floor. It’s awful when you can’t rely on the life-saving appliances. So now, lacking a better option, I’m in my wheelchair. It’s a lot harder to type, because I’m seated further from the PC. Last week, the spring in my shower chair gave in. Right now it’s always slightly retracted, making it a nightmare for Hein to put it down properly. My desk chair is now permanently in 4th gear, completely useless, pushed to the side. And it always takes days/weeks before the problem’s fixed. And so I’m always worried if I’ll be alright without those appliances for a while. It stresses me out. By now, my chair is fixed, but my faith in the seat has been tainted permanently.

Good news

I went to Utrecht for a respiration checkup again. My lung capacity has been stable for three tests now (meaning around 11 months). It’s around 1 litre (30%). I’m pleased with that. The test itself is proving more difficult than ever. The mouthpiece doesn’t fit my mouth anymore. Add to that a pin on my nose, and I’m totally lost. I do fine when I’m allowed to decide on my own breathing pattern. The subsequent talk with the pneumologist is always a treat.

Bad news

Hein’s uncle who was also suffering from ALS, Piet Verkleij, has passed away. And Ward’s school teacher has fallen deathly ill too. We try to shield the kids, but the outside world goes on regardless. I wrote a letter to Ward’s teacher, which left me upset for the rest of the day.

School’s out

The end of the school year is also a time of reflection. I’ve been blessed with another year with my children. I’m thankful for that, also for the way that Hein and others have made staying home a joy. Quietly, I’ve been thinking about the next year of school; Ward’s exams, choosing his secondary school, a school musical and Floor choosing her school specialty. But I’m afraid to look too far ahead. First, there’s the holiday to Zeeland. While watching the Tour de France I felt the pangs of nostalgia for exotic holiday destinations, but the heatwave we’ve been having the past few days has reinforced my belief that Zeeland was a good choice.

Het bericht Diary July 2002 verscheen eerst op Living with ALS.

Well, it’s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We’ll be looking back on this one for a long time.

I find evenings like this one difficult. I can’t talk, all I can do is nod and take everything in. It couldn’t be more different than how I felt during the planning stages. I was in my element. I felt relevant again, I was in control. It’s the feeling I used to have at work.

Hein’s 50th birthday

On the night itself, I had to relinquish control. Luckily, there was a lot to see and hear. Of course, being with people who hadn’t seen me like this before was confrontational, but they probably felt as awkward as I did.

My least favourite doctor

Last month we went to Utrecht again. We always make sure to get an appointment with Dr. Kampelmacher, a nice fellow. After the pulmonary test we struck up conversation with him. His modus operandi is complaint-based, so as long as we have nothing to report, our appointments consist of some chit-chat and nothing more. Before, he’d ask to listen to my lungs, but by now he stopped doing that too. Just another thing he’d only do if we had something to report. He’s my kind of guy.

This time, things went differently. It already started when he asked Hein for a one-on-one discussion. “Mr. van der Vlist, could you come over here for a second?” (Poor Hein, I use my maiden name, which means that in hospitals, he’s addressed as “Mr. van der Vlist.) That really rubbed me the wrong way. Why just Hein? Am I not allowed to hear something? Hein found it as ridiculous as I did. I would be part of the conversation. The question was simply whether I wanted my lungs tested, seeing as I had trouble blowing into the machine last time. I didn’t. Did she want to make this decision without consulting me? What I did ask for was a blood test to check my carbon dioxide levels.

The next nasty surprise: my own doctor wasn’t in that day, but a doctor I don’t like was. Three years ago, he advised me to get a PEG. No complaints there. But against everything I value, he went over my head and made an appointment at the AMC. It was a matter of urgency, he claimed. Despite that, I had to wait 8 months. I don’t like controlling doctors. Ever since, I’ve tried avoiding him. Oh well, what could I do?

He was visibly disappointed that I hadn’t done any lung capacity tests and he asked me about my cough. I told him I was fine, while he was busy unwrapping something. It turned out to be a device that measures coughing force. It also had a very obtuse mouthpiece. Courteously, he asked if he could measure my coughing. Hein gave a resounding “no”. Following that, he read out a whole list of medical conditions related to hypoxia. By now, they’re etched into my mind. Nighttime transpiration? Nightmares? Nocturnal drooling? Morning headaches? I put my head in “shaking no-mode”. Shakiness? Pooping? Unintentionally falling asleep? Dullness? That wasn’t even the end of it. My blood pressure, heartbeat and breathing per minute were measured. He also used a stethoscope to listen to my lungs. Do you know the expression “ignorance is bliss”? It proved to be true once again. My blood pressure is very high, 25 points above average. It only made me more fearful. Because despite my talk, I’m actually terribly afraid of this doctor. I had better avoid him next time.

Children

Young kids have a certain way of reacting to my disease, or rather, my wheelchair, my drinking with a straw and my idiotic way of speaking. When my new neighbours’ kids first saw me, they said, with all earnesty, “aw, that’s so sad”. I’m often stared at at the tea parlour. Kids don’t know embarrassment. Parents do. And some parent-child interactions are hilarious. The other day, a child in the park told us: “that lady has been naughty”. I don’t know why, maybe only naughty people end up in wheelchairs? Immediately, bother parents, obviously embarrassed, said in unison: “that lady hasn’t been naughty!” Or I’d pass a child talking with their parents about me. Or parents trying to keep their child from staring at me. I used to make me uncomfortable. By now, I just smile. People can get used to anything.

A touristic day in Amsterdam

On Sunday we visited the Anne Frank House in Amsterdam. Floor made a report on Anne Frank’s diary and Ward has a book review coming up. The kids were happy to have seen it. Ward picked up a good few postcards to show in his review. I couldn’t go in, so I was parked in the restaurant. Afterwards we went on a boat tour and on a stroll through the Vondelpark. I think Amsterdam is an amazing city.

Het bericht Diary November 2002 verscheen eerst op Living with ALS.

My brother has visited me on the third Wednesday morning of every month for the past four and a half years. We always go out for a walk. The bad weather had only deterred us one time. Last Wednesday was the second time. Shame.

More than four years of worry

Hein is obviously at the end of his rope. I’ve required his help for 4.5 years now. It changes a person. He gets impatient sometimes and has a short fuse. On top of that, he threw his back out on Monday. We’re going to look for more help, including weekend assistance. Thus far we’ve tried to not use professional help when the kids are around, so it usually comes down to Hein to do the work. We’ve noticed that, whenever carers are around, the kids tend to stay in their rooms, which is no fun. In short, we’re in a bit of a dip.

The return visit (2)

By now, the Dane has left and we have our privacy back. Everybody has to adjust to having guests. Floor had a great time and got very emotional when it was time to say goodbye. A great experience. Floor got increasingly more nervous as the Dane’s day of arrival drew nearer. She cleaned her room as soon as she got back from school, she made her bed and had a shower. I had a makeover too: a clean shirt and vest. All of that for the one minute I actually got to see him, because he immediately went to bed. The whole week was like that. As soon as they got back home, he went to bed and every morning they left at the crack of dawn. Even Sunday, a family day (which we stressed out about beforehand. What are we going to do? A theme park? Hiking? A football match? Opinions were divided.), was spent snowboarding. Floor had formed a sort of group with three other girls who had boys as exchange partners. No trip into the city on Saturday, but skating and bowling with the boys. Floor was a good host. The biggest point of contention was the morning shower routine, giving everyone enough privacy and time to shower while going to school on time.

Hot/cold

Seeing as the muscle in my arms have almost completely disappeared, I’m cold a lot. There I’ll be, at night, huddled in my fleece blanket. Apparently I just can’t retain heat anymore. On the other hand, I get way too hot when it’s warm out. On Easter Day, we went to watch Floor play football, but it was way too hot for me. I’d forgotten how awful it feels. Besides, always sitting in a wheelchair doesn’t provide great ventilation. Oh, how I longed to be in a cool room with my shoes off. We’ll be holidaying in Dordogne this summer, we took the leap and decided to go abroad. I hope it won’t be too hot.

The turn

Every morning I have to make a 90 degree turn while seated on my stair lift. My feel will go from hanging above solid ground to dangling above the stairwell, a harrowing experience. It’s a question of whether I can keep my legs still, so I don’t slump down and go into a spasm. It barely ever happens. Nonetheless, it’s the most nerve-wracking moment of my morning and I’m always glad to have gotten downstairs. That’s the downside of having a house with multiple floors. Hein suggested we move or have an extra bedroom built downstairs. I’ve got the feeling that the stair lift will last as long as I do.

Utrecht

It had been six months since the last time I’d had my lungs tested, so we went to Utrecht again. I decided to only have the oxygen level of my blood tested, which was fine, a bit higher than usual actually. When we made the appointment we asked for my favourite doctor, but sadly we got the doctor I’d liked to avoid again (see November 2002). We tried to discourage him by saying nothing had really changed since our last appointment. Despite that, he started dutifully rattling off his questions. He asked us what drugs I use, we answered, again, that nothing had changed after last time. He got the hint and left it alone. We could have done the blood test locally and done this conversation on the phone. How does one tell such an uptight doctor that you’d love to have a conversation, but one about your holiday, the purpose of nighttime respiratory aid or high saliva production in the morning? Every hope I had of having a normal conversation with him was smothered during his “interrogation”.

Denmark

We went on holiday to Denmark during the May holiday. It was amazing. We had a wheelchair-accessible house near Aarhus. A house that fitted 8 people, one bedroom too few, but otherwise completely equipped; dishwasher, washing machine, clothes dryer, a cd cabinet and a wood stove. The park itself had a tennis court and a sauna where people were expect to cool off by diving into the sea. Our daughters were courageous enough to take the plunge. Denmark is an empty-looking country, nothing spectacular but very friendly, with a lot of coastlines and water. We visited the place Floor had stayed during her exchange trip (to collect a jacket she’d forgotten there), a horribly boring town where the greatest attraction was a local pizzeria. But Floor would go back in a heartbeat. We went on a nice walk, during which everyone gave their utmost to push me up all of those hills. We went to see an open air museum, which I didn’t see a lot of because of the cobblestone roads. Aarhus turned out to be a surprisingly lively city which even had a Tivoli park, like in the Netherlands. The weather was fine. I had trouble making myself heard in a company in which it seemed like there was always at least one person talking. Doesn’t matter. I had fun.

Het bericht Diary April 2003 verscheen eerst op Living with ALS.