Diary September 2007



I’m eating more carefully than ever, but I still manage to choke on my food often, resulting in hours-long coughing fits. It’s especially terrible when I’ve almost gotten the mucus out of my trachea but it gets stuck. I always feel like I’m burning up when that happens. I usually have someone open the door, remove my blanket, adjust my chair and leave the room before I spent a long time concentrating on getting the mucus out. It happens about once every three days. The worst times were the ones during which I wasn’t at home. It’s happened two times so far, one of them in a supermarket and one of them during my weekly walk on Saturday. I’m developing a fear of being in public because of it. Maybe I should give up eating altogether and fully rely on my PEG. Porridge is the worst offender and usually results in a whole morning spent coughing and heaving. I’ve started eating less and my belly is getting smaller. But eating through a feeding tube feels like such a final nail in the coffin and I’m not ready for that just yet.

Sleep has gotten worse too. Whenever I’m in bed, I create so much saliva that I lose the ability to swallow, which wakes me up and sends me into a panic. But whenever I decide to spend the rest of the night in my chair downstairs, I wake up feeling short of breath, gasping for air.

Faith? I don’t have much left. I’ve become more tense, which lead to more spastic tremors in my legs. Now I understand how people develop phobias. I’ve started becoming afraid of being afraid.


I’ve been getting a lot of comments on my story, about how badly things could have turned out. One fellow ALS patient wrote on her blog:

”That night, everything went wrong. I woke up and immediately had difficulty breathing. My night time carer cracked a window but it didn’t help. I asked her to get my neighbour, Eveliena. The last thing I remember was spelling the word “dying” a few times, after which I lost consciousness. I was completely bewildered when I heard someone say “Irma, you’re in hospital and you’re on artificial respiration.” What? I thought I was dead.
Suddenly, I was faced with the impossible choice between a tracheostomy and death.”

She picked the tracheostomy and spent four months in hospital before being relocated to a nursing home. That’s a scenario I want to avoid at any cost.


Now that Floor has moved out, it’s up to Ward to keep our spirits high. He’s such a treat. By day, he’s usually in his room, but at 20:30 he goes back downstairs to watch TV with me. Together, we decide on what to watch. The only times he misses TV night is on days when he has football training. And watching is a strong word, he usually intermittently checks his MSN on his PC. Ward feeds me bits of chocolate and adjusts my blanket and backrest whenever I ask him to. Hein does the heavy lifting when putting me to bed, but Ward always comes by later to fix the minute details. Positioning the pillow underneath my head is a matter of finesse. Ward is very patient.
He’s also a great cook. His favourite dish is tortellini, one he perfected when he was only thirteen. The same goes for salads. Normally, kids don’t learn how to cook when they’re thirteen. Then again, normalcy is few and far between in our family.

Twenty years

Next month, we’ll have lived in this house for twenty years. I’ve been sick for roughly half of that. It’s an odd thought. In those two decades, we’ve had three fireplaces, replacing the old-fashioned stone one with granite, which in turn was replaced by a romantic one adorned with a mirror. Optimistically, we ordered a lot of firewood. Optimistic, because we’d never actually used the fireplace before. Before we knew it, the whole living room was engulfed in smoke. Once, and never again we thought. We had some specialists look at the chimney, but apparently they thought it was a lost cause. That is, until we had one over two weeks ago who told us that it was simply a matter of making the chimney a bit wider, something he managed to get done within a week. It only took him about an hour. Hopeful, we put the wood into the fireplace and before we knew it, we had a perfect roaring hearth. We feel stupid about not having the thing fixed earlier. Ward has a penchant for firestarting. Thus far, we’ve spent two Saturday evenings gathered around the fireplace with a rented movie playing in the background.

The fundraiser

By now, we’ve had three meetings. The first one was the most fantastical, the second one was the most practical and by the time the third one rolled around, we’d already put the plans we’d made during the second one into action. The only things we still have to figure out are the Italian delicacies. Tickets are already on sale and we’ve reached out to local newspapers too. We’ve managed to land an interview in one of them and an article in another. We’re hoping to fill the whole theatre, so come one, come all!


After I got back from holiday, I made a few changes to my usual routines. When I’m using the lift, my carers know to support my ankle with their foot so I don’t sprain it. It makes using the bathroom a whole lot less stressful, as well as making it easier for me to position myself properly before sitting down on the toilet.
I also decided to drop porridge from my breakfast, replacing it with something called ‘Good Morning’, a nice nutritious fluid breakfast. I eat one glass with a spoon and one-and-a-half glasses of it with my feeding tube. As a result, I don’t cough as much anymore. Besides, I read on a Belgian ALS website that Activia yoghurt doesn’t thicken one’s saliva as much as normal dairy does, so I’ve decided eat that instead of my usual sour cream.

The last change has nothing to do with my illness, but with my age; I’m having difficulty reading newspapers. These days I only scan the headlines and need to keep my books at an arm’s length before I’m able to read them. I just so happen to hate glasses of any shape or form, so this might be an issue.