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.

The kids moved their rooms to the attic. I haven’t been there in five years. I used to have some idea of what their rooms looked like, but now that they’ve moved, I’m completely in the dark. Pictures and video don’t do the atmosphere justice either. It’s like the Euro. I understand people are having trouble adjusting, but I’ve never used them. I don’t even know what the individual coins and bills look like.

Documentary

Last week I watched a documentary about Diane Pretty, an Englishwoman with ALS who had to fight for the right to end her life. It did not raise my spirits. Her limp head and yammering voice are all too familiar. The only thing that wasn’t, was the pain. And it all looked distinctly destitute. Typically English. I don’t have a living will. Dying at a previously decided time sounds abhorrent to me. I’m counting on my doctor to give me morphine when my breathing fails. That’s something I need to talk to him about, actually. I’m hoping for a painless natural death.

Chipped tooth

Last week I chipped my front tooth while brushing my teeth. In its stead there’s a huge hole. It looks horrible, and it’s equally clunky when I’m trying to eat and drink. I use my front teeth for everything. I don’t know if it’s reparable. I can’t hold my mouth open for long and tilting my head back makes me nervous. In short, I can’t sit in a dentist’s chair. Hopefully there’s a quick and clean solution, because nothing spites a face more than missing a tooth. Some friends got me an appointment with a dentist who knows what ALS is and has experience operating on disabled people. It should be over and done with in 40 minutes. We’ll see.

Armed with a letter I’d written to the dentist, laying out my fears and considerations, we went on our way. He was such a nice man. He took photos and laid out his procedure. I was allowed to stay seated in my wheelchair. I had the operation the week afterward. I can show my face again. He had to improvise a bit, because the false tooth wouldn’t stick. He thinks it had something to do with saliva build up underneath the tooth, which isn’t great, structurally. He hopes it will stay put. I only bit his finger once. It resulted in him yelping and me laughing quietly. I think it has crossed everyone’s mind, biting the dentist while they’re rooting around in your mouth. I’d warned him about me involuntary biting reflexes. I do have to get used to my new tooth. At least my sandwiches don’t slip between my teeth anymore, and I look great.

Snow

I’ve had a few wonderful snowy winter walks. Everything looks so different. Besides that, I’ve been sitting in the sun, in front of the window.

Theatre season ticket

Theatre season was off to a bit of a slow start this year, but this month we went to see three shows. They were all good, although I did fall asleep during one of them.

Spa day

We had a spa day. It was Floor’s brainchild. We treated ourselves to a footbath, moisturizer and face masks while we enjoyed a few episodes of Friends. I enjoyed it immensely. That’s my girl!

Secondary school search

Ward got his expected grades and has been looking at different secondary schools. Four Saturdays of trial lessons, instead of football. We’re not playing a huge part in it. We had seen most of them already from Floor’s secondary school search. We’ll be going to an info day on Thursday at Ward’s favourite school thus far. He’ll be taking his exams next week. Let’s wait for the result first.

A good start

And I have been busy writing Ward’s end-of-year musical. This weekend I felt especially creative and wrote 5 scenes.

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

Ward’s school has this bizarre tradition of planning outings in the middle of winter, including an actual night of camping. Two days of walking 30 kilometres using nothing but a compass, sleeping in a tent of three and heating up cans of pea soup. I don’t know what’s the point of all of it, but apparently it’s the fashionable thing to do these days. Ward was lukewarm on the whole thing. His whole outfit was borrowed, the only clothing he actually owned were his gloves. Luckily, his shoes had been broken in already, because Ward’s only preparation was going on a two-hour walk around the woods close to our house, although he did take some supplies with him. What was the trip like, you ask? A lot of walking. It was nice to try something new, but it wasn’t something he’d do again anytime soon.

Ward did winter sports during his spring break. I missed him terribly. He got back on Saturday and had the time of his life. On March 10th, Floor and Hein will go skiing for a weekend.

Scared

This morning I had a nasty accident with the stair lift, probably because my legs were badly positioned. I was still shaking minutes later. I’m always scared of it happening again. Afraid of being afraid. Some of my days are dictated by anxiety. Most normal people can’t fathom what that feels like. “Why wouldn’t you sleep in your arm chair?” Because it impedes my movement and I don’t like lying flat on my back. Nobody seems to think of the little issues. “Just try it for one night.” No thanks. I can’t adjust anything and that powerlessness is accompanied by fear, especially since I can’t talk. All I can hope for is for someone to help me. I prefer writing my fears down beforehand so there’s an emergency plan in case something goes wrong, but even then, I hate being completely dependent on someone else. It’s a matter of trust, something I don’t think normal people fully comprehend.

A good friend and ALS patient described it like this:

”Fear: probably one of the worst parts of having a disease like ALS. I suffer from it too. Fortunately, I don’t have to bother with the patient lift anymore, but when I did, my biggest fear was them leaving me hanging. I used it because my legs couldn’t support my weight anymore. The lift put pressure on my chest, because of which I had trouble breathing.
By now, my greatest fear is my life support. Sometimes, the fluids in the machine have to be replenished, so for a short while, I’m resigned to gasping, fighting for air. It has to be done quickly and efficiently. Last week, one of my nurses managed to put the water through the wrong filter and all I could do was yell incoherently, because I can’t talk without my artificial respiration, my lungs just don’t get enough air.”

My mother

My mother isn’t doing well. She’s in a lot of pain, even with her morphine patches. Last week, she stopped by our place while she was on her way to the hospital. It was the first time I’d seen in a wheelchair. I was shocked. I tried to distract her by talking about the kids, but she just wasn’t all there, slumped in her wheelchair from the pain. She also made a strange mix-up, like she was disoriented. Today, she’ll find out if she can have a back operation to reduce the pain somewhat.

Three weeks on and one hospital stay later. My mother trusts doctors more than anyone, while I try to see as few of them as possible. I select my doctors based on their behaviour and bedside manner (I’ve already got a different GP and, per my request, I always see a doctor I like during my lung inspections in Utrecht). My mother visits several. Of course, that’s easy for me to say. After all, I’m not constantly in pain.

She turned 80 on March 3rd. She’d been admitted to her nursing home the Wednesday prior. A short stay. She left the following day. She hated it there. She celebrated her 80th birthday feeling more chipper than usual in her own home.

Teeth

I’ve completely neglected my teeth since getting ALS. I always thought: “they’ll last longer than I will.” Not so, so now I’m screwed. Last week I had a terrible toothache, I couldn’t eat a sandwich because the crumbs hurt my gums. On Friday they pulled another tooth so I spent the day with bleeding gums. Whatever, the tooth itself had all but broken off completely, so I wasn’t complaining. Almost immediately, something else started hurting again. I’m meeting with my dentist soon to make a full plan. ALS patients, be warned: take good care of your teeth!

Holiday

I’ve been hinting for months that we need to start planning our summer holiday. By now, it’s too late, all of the wheelchair-accessible housing are already taken. Scandinavia didn’t look promising, except for one cottage 400 km deep inside the Arctic Circle. I found something in Ireland but nobody was too excited about it. The trouble is, we’ve seen a lot of handicapped-accessible housing over the years and it’s getting old to go on holiday in Europe.

Time for a family meeting. We had the choice between a cottage in Oxford or one in Zeeland, two places we’d already been once. The kids picked Zeeland because of the sea, the amusement and the possibility of having friends over. We decided to have a few trips to Belgian cities. Oh well, holidays close to home have their charms.

Kneeling on a bed of violets

I read the book with baited breath, despite not understanding the protagonist’s religious convictions at all. It’s a beautifully written book, penned by the oldest son of a family. He was in a unique position as the oldest. He was his parents’ mediator, did not take sides and had a lot of responsibilities, maybe more than a child should have. He reminded of Floor, but maybe that’s the position a lot of older siblings are in. Floor is a great mediator too and always acts as a buffer whenever Hein and I are at odds because of my illness. She’s got a great sense of responsibility too.

Het bericht Diary February 2006 verscheen eerst op Living with ALS.