Diary November 2000


Sick carer

Last week was relaxing. Bad weather, so most of it was spent inside. My mother is sick and because of her absence on Monday and Tuesday, we had to improvise with our carer schedule. It’s a delicate system and we really ought to have hired a new carer by now. My mother feels like she’s doing me a disservice by falling ill, so she was glad to hear that we had found a replacement.
After three weeks my mother got better. My primary carer Inge and my mother-in-law took her shifts. Hein has found a new carer for Tuesday morning who is also open to filling other gaps in the schedule.

Female discomfort

I asked my neurologist about the possibility of a pill that stops the menstrual cycle but he advised me not to use them. Hormonal shifts may negatively influence the development of ALS. There are women who deteriorate even faster after taking pills. I wouldn’t fancy that. I guess I’ll just struggle through this useless discomfort.

Flu shot

ALS patients are advised to get flu shots to reduce their chance of contracting pneumonia. It goes against every single alternative healing method. I decided to get one anyway. To my delight, a fellow ALS patient told me that his homeopath had actually recommended getting a flu shot. I wouldn’t be able to forgive myself if I died of the flu after refusing to get the vaccine. It was the first time I’d gotten a vaccine since I got diagnosed, but it didn’t have any side effects, luckily.

Head mouse

Typing using my mouse is becoming more difficult by the day. I will have to switch to typing using my head. It’s another big step and it saddens me to lose another trusted faculty. Handling a mouse is becoming impossible because of my tilting hand, my drooping head and the neck ache my posture gives me. I think typing with my head will be more relaxing. I’ll get to sit in a more comfortable chair, for one. I practised for the first time yesterday. It looks like a bindi, but I’m actually equipped with a silver dot between my head, which reflects infrared light to the screen, moving my cursor. It created a lot of curiosity from others. It does look peculiar. The strange thing is, I completely forget about the silver dot between my eyes. I guess others have to get used to it more than I do.
Help! Help! The cursor is flying across the screen. Even when it’s stationary, it trembly. I accidentally click all over the place. Programs start up and shut down, scrolling is impossible and I can’t type a single word. Luckily my hand still works, so when things go awry I can fall back on the old method. It’s all so fiddly my head hurts.
I would like some more explanation on head typing and some alternatives couldn’t hurt either. It’s urgent. I communicate by typing, after all. I’m getting a bit panicky. For now, I’ll just keep using my hand.

Kids Ward and Floor’s age

I’ve always been a bit envious of ALS patients with older kids. “At least they got to see their children grow up”, I’ll think, forgetting that Ward and Floor are my greatest sources of happiness. Afternoons are my favourite time of day. I eagerly await their return home. Like an old-fashioned stay-at-home mom I’ll wait for them (often joined by dad and grandma) with a cup of tea at the ready. Listening to their stories, singing songs, doing homework, going outside, sports, quizzing, having friends over, I’m involved in all of it. I’m in good hands. No reason for envy.
I recently heard Floor say that being a good mother is staying at home for the kids. Before, I would have given her a stern emancipatory talking-to, but not this time. Both because of my lacking communication ability (and maybe because I enjoy being at home with the kids).

One and a half-year-olds

Some friends of ours and Hein’s brother have one and a half year old sons. We went on lots of trips with those friends. Little Thomas and I are both carted around. It gives us a certain bond, even though our developments are essentially opposite. While the boy is becoming more and more self-sufficient, I’m becoming more dependent on others. The little tyke knows that, too. Often he looks at me in wonder. “Why do you still have to be fed?” Even one-year-olds are aware of what is normal and what is not.

Nodding off

My head is getting heavier and heavier and sometimes just rolls to the side. A kiss that is too firm can do the trick. It usually happens when I’m in a chair with a straight headrest. If I can’t keep my head straight, it can droop forward. Ever since Hein adjusted my chair headrest to a backwards position, there has been less stress on my neck and my head tends to stay upright. We’ve been looking for a neck brace for some time. Most of the ones I’ve tried were too tall at the front, making my head tilt back a bit. That’s unfortunate, because I always keep my head slightly skewed forward to prevent aspiration. The braces were just stifling to me. Yesterday we visited a company that makes tailored neck braces. I wasn’t looking forward to having my neck moulded in plaster, but luckily one of the ones they had in storage was a perfect fit for my neck. Content with our purchase, we went home.

6 months of PEG

I got my PEG on May 18th. It’s six months later and I’m glad that using it hasn’t become a necessity yet. I only use it for water. That’s because having to bow forward to drink from a straw is strenuous for my neck. I ask people to hold my cup up to my face when I want to drink. It’s not a fun task for my carers. Hein doesn’t like it much, but Ward and Floor hate it the most. The PEG is a good way to circumvent that.

Sitting in November

I’ve been sitting a lot more lately. I only use the PC in the morning, after which my hand and head are tired out. Afternoons are spent in my comfy chair. I usually listen to music. I’m a huge fan of U2’s latest album. My range is getting smaller and smaller. I don’t think there has been a month in my post-diagnosis life in which I’ve been outside less. The weather has been foul. I’m seeing fewer people in daily life, too. I realize that it’s winter, of course. Fewer people about. Because of my limited daily energy reserves, writing Sinterklaas poems and keeping up with my diary have become my number one priorities. I have completely neglected my email inbox. Oh well, I’ll have time for that some other day.