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.

Slow Pentecost

It doesn’t happen very often, but this Pentecost weekend I was bored. I didn’t know what to write, we didn’t go on any outings and the weather was bad and cold. I napped a lot. And I nagged Floor. About how it would be a good idea to go through her History material well in advance, while Floor didn’t feel like it at all. Fortunately, we did some evening activities which were highly enjoyable. It’s worrying to me whenever I can’t think of anything to do. Amusing oneself is an important skill for an ALS patient. Maybe it’s time for me to get a library card and some audiobooks. I am content with Ward reading to me. On Whitsunday we paid a visit to the renovated National Museum of Ethnology. Pretty, but not very original. All new museums look very much alike. Many showcases, nice lighting and lots of slow modern media. The appeal of the old building has vanished completely under the veneer of modernisation. The kids stayed home. Like I said: museum fatigue.

Big toe aftermath

In March, part of my ingrown toenail and the accompanying fibroma was removed. Regrettably, the wound wouldn’t close. My shoe probably puts too much pressure on my toe, because of which the fibroma and infection have returned. I won’t be able to wear shoes for two weeks. All of that while I’m so dependent on my shoes. Twice a week, the GP comes by to treat my foot with silver nitrate, a substance that kills fibroma. My toe has gone black. When it’s warm, having no footwear can be awfully cold. I still use Epsom salt, often accompanied by Floor and sometimes Ward, who also enjoy foot baths.

Bitter

Helping me got to and use the toilet has become harder lately. When I sit down I often do so at a wrong angle and when I get up, my legs buckle, making it harder for my caregivers to get me on my feet. Besides, our bathroom is miniscule, not granting my carers much maneuverability. I recognise the pattern. First, my directions become more and more specific, after which I’m faced with the unavoidable realization that I can’t go on like that any longer. Like typing with a mouse, using the bathroom and eating sandwiches are quickly becoming unmanageable. The difference is that there are alternatives for typing and eating sandwiches: the head mouse and my PEG. There aren’t any readily available alternatives for using the bathroom. Granted, Hein still manages fine, but he’s not available every hour of the day. On top of that, he still has a weekend off. I’m bitter. It causes complications in the carer schedule and I’ll have to let go of another routine, this time without knowing what it’ll be replaced by. To be continued.

Cancer

A friend of mine has metastasised breast cancer. For the first time, I’ve realized that ALS has its advantages. I don’t have to make any medical decisions. No chance of recovery, no side effects, no hope but no hope lost either. None of that. Just the task of living on as best I can. It can be tricky, but it’s tranquil in a sense. It’s uncomparable to the life between dread and hope she’s leading right now. These advantages are also disadvantageous, however. With cancer, people ask about the possibility of treatment. It’s in flux. You’re doing something about it. Your story of survival gives people the strength to talk about your disease. After the ALS diagnosis, there’s just silence.

’Ballad of Lasts’

In my thoughts, I always note when I did something for the last time. Here follows a list. At least it’ll be off my chest.

• In May of 1998 I biked for the last time, after a schoolyard tumble with a bleeding head wound, many concerned parents and shaken kids.
• In September of 1998 I drove for the last time, the GP could come visit me instead. No longer safe.
• In October of 1998 I dressed myself for the last time.
• In November of 1998 I walked through the house without a rollator for the last time. The last time I went to the attic (using the stairs).
• In June of 1999 I fed myself for the last time, because it tired me. The last time I worked in my upstairs study, I could still operate the stairlift by myself.
• In July of 1999 I autonomously used the bathroom for the last time, because I couldn’t lift my trousers anymore.
• In August of 1999 I typed for the last time, albeit with one finger, taking four hours to type a quarter of a page.
• In September of 1999 I went outside with my scooter for the last time, turning became too difficult.
• In October of 1999 I showered while standing up for the last time
• In December of 1999 I ate my last non-blended dinner, but it was still thoroughly mashed.
• In March of 2000 I went to the toilet with my rollator for the last time, terrifying.
• In October of 2000 I drank unassisted for the last time, I couldn’t bow forward anymore.
• In October of 2000 I sat in the passenger seat of the van for the last time, my head kept slumping forward.
• In October of 2000 I used my light foldable wheelchair for the last time.
• In November of 2000 I stood up by only using my rollator for the last time.
• In December of 2000 I typed using my mouse for the last time, as well as sitting in a normal desk chair.

Some developments happen at once. Still, I speak (or I try to), I play bridge, I laugh, I help with schoolwork, I go on holiday and I have loyal friends and family.

Toilet shenanigans

Hein immediately came up with a solution for my toilet problems: a commode. I dismissed the idea, too much of a privacy breach. Despite that, Hein went to a medical shop one day and returned with, you guessed it, a commode. Initially, it was our intention to put it over the toilet so it looks like the toilet bowl is attached to the back wall (it’s fixed to a sidewall), giving helpers more space to hoist me up. To actually do that though, the toilet seat and arm supports would have to be removed to make space. Thus, nobody (including me) would be able to use the bathroom normally. Not a great solution. Oh well, we’re a couple of days on and I’m over my initial apprehensions. Our priorities are clear again: being able to safely use the bathroom without any inhibitions. We put the commode in the hallway. Indefinitely, because we’re looking into renovating the bathroom. I trained with Inge this morning and it went well. It takes some getting used to, but in the big picture, it’s no big deal. Thus, the commode is proudly on display in our hallway. My mother finds it distasteful and suggested we cover it with a towel.

Momentary overload

Not only am I having difficulties with using the bathroom, but our regular carer is leaving us in July, the RIO is changing the amount of care I’ll get every week and we’re having a foldable shower chair delivered. In short, my whole routine is messed up. I’m not in the mood for that. Mind if I skip this round?

Nighttime analysis

I often wake up at night just to stretch and readjust. I can’t really call it waking up either, because I’m only ever conscious enough to note darkness, light, silence, the sounds of birds and the sounds of the heating unit. All of these different sounds and sensations signify different times of night, so I know what time it is without an alarm clock. As the days get longer though, the periods of “light without a sound” are becoming longer by the week. I always want to get out of bed then, but I’ve been able to resist doing just that lately.

Faithful

For almost three years, I’ve had a very consistent schedule of faithful caring friends and family. My mother still comes over every Monday afternoon till Tuesday morning, now assisted by a professional caregiver. Every three weeks, my brother Anton stops by on a Wednesday. Regardless of the weather, we go outside for a walk. On Thursdays, it’s either my mother-in-law or my sister-in-law Lieke who takes care of me. My neighbour Lisette assists my mother-in-law when I have to use the bathroom. On Fridays my friends Marjolein and Tineke alternate caring duties. We go on outings whenever we can. For the past two and a half years, Inge has been my main carer on Monday, Wednesday and Friday mornings, helping not just with housekeeping but a lot of other stuff. Of course, there’s Hein, Floor and Ward who take care of me for the remaining time. At school, Floor was asked if she know what informal care is. She had no idea. Well, she does it, as well as all of the aforementioned friends and family. Besides International ALS Day, June 21st is the day of informal are, and I want to put my faithful helping hands in the spotlight for once. Thanks everyone, without you my life would be a lot more dull.

Terrible disease

Prompted by the International ALS Day, an letter was composed to raise awareness about ALS. In the letter there is mention of a terrible disease. You may find it odd, but I’m against that. It’s so negative. There are plenty of worse diseases. Most ALS patients live good lives. Not everyone is so lucky. Maybe thinking of ALS as a “terrible disease” just doesn’t fit into my optimistic worldview. Isn’t it terrible. Well, it’s not pleasant, at least.

Not really true

Previously, I wrote about the silence that surrounds you after an ALS diagnosis, but that’s not true. It’s human nature to not accept the incurability of one’s disease. The alternative circuit is bustling. I did visualisations, reiki and (used to) use many anti-oxidants. I chatted about that with many people. Apparently, talking about treatment is easier than talking about the diseases and its consequences.

New help

Today is my first day with my new caretaker. I need to get used to it. Having to explain everything again: no bent straws, don’t hold my straw, hold the cup upright, etc. When she hoisted me up she gripped me so tightly I almost completely disappeared in her bosoms. I gasped for air. We couldn’t find a way to use the bathroom we both felt comfortable with. I do think she’s nice. I’m a bit grumpy though, I don’t take to change very kindy. I’m frustrated because of my unintelligibility and the mutual confusion it causes. I’ll get used to it. She does understand me and makes relativising jokes.

Hein on tour

Hein went cycling in Limburg this weekend, putting some real miles on his bike. Some time to himself, but not for too long. I slept in my chair overnight. I was glad to be in my bed again last night. My sister-in-law Lieke took care of me. On Saturday evening we saw Bridget Jones’s Diary with mothers and daughters. I highly recommend it. A lovely night of laughter and relaxation. I entertained a lot of company too. I notice I called on Lieke a lot, I do rely on my caretakers an awful lot. The weekend went smoothly.

World ALS Day, June 21st 2001 in the metropolis of Uden

Right before we went to Uden, we got the news that the frontman for Mexico, Olav, had passed away. How did he deteriorate so quickly? He seemed fantastic on March 15th. I was bothered by it. On the ALS Day itself we commemorated Olav, too.
It was a great event with excellent food (for those who still eat it) and good service. The opening ceremony was a parachute jump of five parachutists. Two of them landed well, one got tangled in a street lamp and to of them landed out of sight. There was a humanist introduction and Maurits van Selms’ attorney, followed by an open space, a kind of structured coffee break. We were asked to think of conversation topics, from holidays to dating prospects. We didn’t participate, but we did talk to a fellow ALS patient from Leiden who was not looking forward to this day and confrontation. All in all, we had a good and casual time. There weren’t too many people (I only recognised a few people from prior gatherings), but the foundation still managed to make it a spirited occasion We left at half past five, feeling content.

June

June was a month of accepting changes, with which I am still coping. I’m working on it. It wasn’t all doom and gloom, though. The weather was nice, but not too hot, I enjoyed the time I spent sitting in the garden. The kids played in another tennis tournament, which I spectated. I met a lot of neighbours there. During a rainstorm, we sat under a tarp and watched the water rise up to ten centimetres. A wheelchair is infinitely useful for that. Ward found a chick on the street. It’s touching and adorable to see him grooming it. I would like to have a chicken. Floor was way too tired for exam week. She invited a bunch of her friends over to watch movies, unashamed of the commode or her ridiculous mother. Hein and I also celebrated our 12 and a half years of marriage, which we celebrated with the kids. Enjoyment of a month is more of an exercise of focus than anything else.

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

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.

Because they constantly walk after people, Hein accidentally stood on one of the birds’ feet. The whole house was in panic mode. Tweety lost blood, limped and just sat around not doing anything. Dropje was obviously shaken up and wouldn’t stop walking circles around Tweety. Floor went to the vet with her. Tweety is on antibiotics now. Fortunately, things have gone back to normal and the chickens are tip-tapping after each other again. At night, when it gets dark, they sit down on heads and shoulders to roost. Every night, I use the computer with two chickens perched on my head and I’m powerless to stop them.

The new helps

There’s no rest for me. I used to have one help for Monday afternoon and Tuesday morning. I got two of them in return from the home care initiative. One didn’t make a great first impression. She introduced herself. When I nodded, she repeated herself, loudly and clearly. It immediately prompted me to respond: “I’m not deaf,” thinking to myself: “nor retarded.” It was an allergic reaction. It was patronizing. Inge was bombarded with questions about me, like I wasn’t there. When my mother told her she was deaf, the new help yelled everything in her ear. She meant well. She really was concerned about me. The other one didn’t show up the first day because of a misunderstanding. Things really went awry when my new Monday help suggested we get a patiet lift for the bathroom. It’s called shooting the messenger.

No, no, no

No, no, no, I don’t wanna
I don’t wanna shake hands
I don’t wanna say “hello ma’am, goodbye sir”

Paraphrased from a poem by Annie M.G. Schmidt

A patient lift, albeit one with standing assistance, but still: a lift. Look, machines are useful. What would we be without washing machines, cars and even wheelchairs? But a patient lift? It’s a huge contraption made just to put me on a toilet in the hallway. It’s like using a popemobile to get to the bathroom. Many ALS patients, me included, lose their temper when faced with a patient lift. I feel like crying.

But Jeanet, you’ll get used to it.
No, no, no, I don’t wanna.
But Jeanet, just try it sometime.
Imagine I really need to go, it would take hours.
But Jeanet, she’s not strong enough
Well, Inge isn’t that strong and she does just fine
But Jeanet, it’s hard on their backs.
No, no, no, I don’t wanna.

At last, I’m finally hooked up, a herculean task in itself. My legs spasmed. My whole posture screams of unwillingness. To make things worse, Floor has a friend over. I know my “mean side” is showing, my “rebellious child” side, my “argumentative side”. I know it’s wrong, but it’s part of who I am. I’ve always been like that and it’s often the source of my most creative ideas and solutions.

A welcome reprieve

In my mind, I was looking for alternatives. Maybe Inge wants to fill in for one of my other helps. She’s not going on holiday, maybe she needs a summer job. Most importantly, I trust her, and so do the kids. Especially during holidays, that gives me peace. I emailed her the same night. She’s in, what a relief. The summer suddenly looks a lot more sunny. I know it’s only a stay of execution, but what a stay it is. Before September, we want one caretaker for both Mondays and Tuesdays, for whom we’re searching right now. Goodbye, new helps. Goodbye, patient lift.

Hot

The start of July is sweltering. I don’t do well in the summer heat, but it’s been easy on me. We did cancel a homeopathic appointment because of the heat during car rides. We went to the beach on two nights to cool off. Thursday was the only day the heat got to me. Ward celebrated his birthday and the family had gathered in the garden, much too hot, even in the shade. My feet are swollen and my shoes are killing me. I’m having trouble losing heat.

The festival

On Sunday, we went to a festival in The Hague. The fairgrounds was full of tents and stages for theatre shows. The afternoon programme wasn’t a huge success with the kids, but at night we went to see a Loes Luca show, very funny, a sort of revue/variety show where even the waiters were part of the show. Loes Luca serenaded me with a hand on my shoulder for at least 30 seconds. Other than that, we saw a short show where the audience played the role of a housefly. The film on the screen featured Jim van der Woude trying to swat the fly. The ground shook along to the film. It was very primitive, a sort of parody of Disneyland.

My homepage

My homepage and the contacts I’ve accrued from it do me good. People who find support and inspiration from my diary feel especially rewarding. This month, the first message of “where is your June diary” already arrived at 8PM, July 1st. Or the bravery of a friend from way back who wanted to raise more ALS awareness. Or an old neighbour who remembered me. The following are a few special emails I’ve received.

During the World ALS Day, I was at a public speaking course in Nijmegen. There, I raised awareness for ALS, or at least I told my groupmates all I know about it, anyways. One of my fellow trainees was the head of a healthcare initiative and helped me fill in the gaps.

A quick message, just to tell you how good my food was. I had meat, fava beans with pork and potatoes, all blended together with a food processor and I ate like royalty. It was still warm and I was done in no time. What a relief, being able to eat at my old pace and… eating more than usual. I put it off for way too long because I was scared to start the next stage of my illness. If I had known it was this easy, maybe I wouldn’t have lost so much weight. All thanks to your email about blender food.

Your story in NRC on March 24th, 2001 is still interesting to us. An intense story, easily empathize with. Actually, I read and saved the article somewhere (but I lost it somewhere so I had to find an old copy). This morning I (Henk, also born in ‘55), together with Linda (8) and Paul (3,7) read your story again, with Linda and Paul listening intently. Linda was very taken with your story and Paul was most impressed. Linda would like to know if you were happy with your haircut (“the hairdresser asked if Hein was happy with the haircut”) and she understands that “the hairdresser should have asked you, not Hein” (her own words).
I read it to them, not just because I want them to know about you and your disease and how Hein, Floor and Ward treat you, but also to explain how a family friend feels who is battling a kidney disease.

I’ve been reading your diary for a while now… I thought it was a good idea to introduce my brother to your story and with the help of his wife, I did. It’s been very helpful to them.
When we talked about the need to get a PEG, his decision to get one was made easier by your diary. The sad part is that after he decided to get the operation (a few weeks ago) and was put in the OR (he had been mentally preparing himself for the installation of the tube), the doctor told him that operating would be too dangerous because of his breathing problems. He went home with empty hands.

The things one sees on a slow work day! Lacking anything else to do, I surfed the internet. Yes, I have to get used to the new jargon too. There, I stumbled upon a very familiar name. At first I was doubtful, but my (almost-) photographic memory proved me right (I thought you looked familiar in the picture with your husband), but when I saw your brother’s name, it clicked: you had to be the one who lived on the Erasmusweg in The Hague, under the Kortekaas family next to Aunt Tilly. Yours was the third door downstairs, mine was was the first one on the second floor.

My mother
While my mother is deaf, she understood me for a long time, mostly on intuition. Lately, it’s gotten harder to understand each other. She doesn’t hear the doorbell ring. I make lots of noise and gesture at the window. My mother looks at the window, doubtfully, is something wrong with the drapes? Or the phone rings, and I nod at it, right next to my cup of tea. Would I like some tea? We do have a lot of fun though. Whenever Floor walks into the room with jeans that are way too short, she says “don’t trip on your pants-legs”. She’s a neat freak too. Descaling the toilet for a bit. Beating the doormats. Gee, what a useful trinket she’s found this time. Before you know it, there’s a new “Swiffer” in the house only she uses, or an instrument to see how much water is left in a plant pot. Meanwhile, Hein gets tips on how to remove the laundry from the machine with as few creases as possible. Before, I would have despised this much meddling. Now, I tolerate it, unless it becomes too meddlesome. Oh well, to each their own.

Aunt Rie

Since I got sick, I’ve avoided my family. A reunion, my mother’s birthday parties and, by now, many funerals of aunts and uncles have gone without my presence. Why? Because I’m scared to face my family. I see it in their eyes; “gee, such an energetic girl, in such a bad state.” I can’t take it. Strangely enough, I see my in-laws often enough. Oh well, all of those aunts, uncles and cousins, they don’t know me anyway. Essentially, it’s about loss of face. Once the avoiding starts, it’s hard to snap out of it. I do email with a few family members. This month, I made an exception. Aunt Rie, my mother’s sister, paid me a visit. An aunt I’ve always been close with. It was fun, but I could see in her eyes that she found it difficult. My mother confirmed that suspicion later. Apparently, seeing is different than knowing or reading about me. My writing is a bit concealing. It reflects my psyche in all of its sharpness. The same can’t be said for my body.

Dreaming

I dream a lot. Because I wake up often, I remember them. In my dreams I’m usually normal, but I usually have the feeling that something is not quite right. I often dream about going to work again. I walk around, confused in vaguely familiar environment, looking for familiar faces, none of whom work at KPN anymore. Finally, I see my boss who tells me I have to try extra hard to go to work again. After all, I’m not normal. Last night was even crazier. Instead of a feeding tube, an electrical cable protruded from my body. After charging for a bit, I was back in action. If only.

Camp

Floor and Ward went to camp this week. Floor went for the fourth time, to Luxembourg. It’s Ward’s first time. Floor just left. She got up at 5 to catch the bus at 7. So did I. In a bit, we’ll be dropping Ward off. I’m concerned. He’s never been away from home for that long. To a foreign destination with only girls in his class. Still, he has to sleep in the boys’ tent. I hope he finds his place. We just got back from dropping him off. It’s emotional every time. There he was, behind the window, surrounded by girls. Have fun, my boy. Meanwhile, we’re stuck with… you guessed it, two chickens.

The chicks

By now, Hein has made a cage out of an upturned table. We were getting sick of the bird poop. The cage is in the garden, in front of the doors. The chicks run around in front of the window, squeaking loudly: “let us in!” At night, they’re allowed in the house. They’re excited. Around nine, thy roost on my shoulder. Like vacuum cleaners, they peck every biscuit crumb off of my t-shirt and sometimes they drink from my cup. They remind me of a budgie I used to own. It wanted to experience everything I did, too; drinking, reading the paper. We get so much pleasure out of our chicks.

Intelligibility

I’m harder to understand. Even my usual interpreters are struggling, but we’re usually fine. First, I look for a synonym or another way of putting it and when that doesn’t work, we spell it. But even spelling is becoming harder. The letters are barely discernible because the sounds I make sound so similar. I’ve already permanently replaced the Z with an S, which gets me reprimanded sometimes. The first letters are usually fine, but we usually get stuck on one letter. After the small hold-up, we usually figure it out. That’s when it happens. My interpreter has forgotten all of the preceding letters. Stupid, stupid, stupid. From the top. Sometimes, they get one letter wrong in a whole series of letters. Good luck explaining that one.

They’re back

On Saturday, they returned. We picked up Ward at 3 and Floor at 7. Ward was surprisingly spry, apparently he had napped every afternoon of camp. On Wednesday, we had already received two postcards. Apart from a cut from a guy rope, he were fine. Floor, on the other hand, was worn out and got off the bus feeling nauseous. She had been drinking from a stream and it was only on Wednesday when the police declared the water unsafe. Half of the camp was vomiting. Our week at home was fine. It was a bit quiet, but I had the computer all to myself. I bridged until I could bridge no more and the computer beat me relentlessly. My bids were always too high. I’m glad they’re back. Now, they’ll have to amuse themselves for another two and a half weeks before we go on holiday. On August 15th we’ll leave for France, first to Brittany and then on to Oleron.

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

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.

On Thursday, the four of us went to the forest to look for a good place to release them. Someone told us not to deposit them at a petting zoo, because they’re territorial. There are lots of wild chickens. We put them next to the fence of the petting zoo, so Floor can check on them on her way to school. After throwing them some food and taking a few pictures, we left the chickens behind, like Hansel and Gretel. A rooster and a hen were already present, so let’s call them their adoptive parents. Floor spotted them the following days and they were thriving.

Dealing with carers

Dealing with carers is delicate business. Both parties have to feel at ease. It’s great when we hit it off, so I try to invest in that relationship. Carers are few and far between, so it’s important to let them know what you want. You can’t be frivolous with those relationships. By the way, I have more respect for people in healthcare by the day. People who deal with dinks like me. (Floor read along and told me: “you’re not a dink”.) It has a more positive effect on society than selling phones. Having friends and family as carers is a whole different story. You want to pick up where you left off, but of course that’s not possible. Family has it the hardest. Sometimes they have to face my anger. With Hein, I often debate whether I should ask him something now or wait for later, but often I feel like I’m asking too much of him.

Whining doesn’t help, creates a toxic environment and pushes people away. I’ve never been a nag, but I do get angry and impatient. Complaining in writing is foreign to me and doesn’t make for a great read. One has to think of their readers. That’s why I probably sketch my life as better than it actually is. That’s also a way of coping.

A happy person

My father-in-law was concerned during our holiday; was I doing alright? Now that he’s read my diary and seen the relaxed atmosphere at home, he’s reassured. He told me he’s surprised and amazed that I call myself a happy person. I dwelled on that for a long time. Why wouldn’t I be happy? Happiness is impossible, only when you don’t use your current situation as a given, but constantly question everything and refuse to accept your illness. That’s just the way it is. In my situation, I go through fun and less fun things. In my situation, I can still be a happy person.

Prayer

I received an email from Singapore from a Dutch woman who married a Pakistani man and converted to Islam. She sent a host of research papers proving that prayer does help; people who pray are more resistant, heal faster and people praying for you is also beneficial. She told me to ask people to pray for me. I know there are people who pray for me. I like that thought.

Asking people to pray for me, though, is something I don’t see myself doing. It’s taboo to me. In Islam it’s a part of everyday life. And even in America it’s run of the mill. That’s obvious after an attack like that. However, in the Netherlands it’s never really addressed.

Floor is worried

It started during our holiday. Floor felt strange tremors in her arms and legs every now and then. She completely panicked. I realised quickly that it was because of me. After all, I often have involuntary muscle contractions (fasciculations). Would being the child of an ALS patient lead to a lifetime of being scared to get the same disease? How do the parents have to deal with that fear. We told her that it’s not hereditary when ALS manifests this late in life. It didn’t help much, the panic didn’t subside. We asked the GP. “Probably growth symptoms, happens a lot”, he told her. I hope that helped. I’m afraid that she’ll never completely get over that fear. This morning, Ward told me about muscular twitches in his arm. Is it just growth? I don’t want to do this to my kids.

The doctor tested her reflexed and took a good look at her. She hasn’t mentioned it since.

A new carer

For the whole month of September, care went as per usual. Despite her imminent departure, Marje worked on every Tuesday of September. Inge took care of Mondays, but in October she’ll have class on Mondays. In the meantime, we’ve been looking for someone else. On Monday, our new help Astrid came by. We tried using the toilet. We still have to get used to and start trusting each other, she’s rather petite. I immediately liked her during her preliminary interview. I liked seeing her beforehand. It’s drastically different than the last carer, who simply showed up to work. All there is left to do now is learning to trust her in the bathroom and we’ll be in the clear.

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