December 1998

I’m a bit depressed. I’m starting to lose hope. The antioxidants haven’t helped thus far. The talks with my neurologist have proven to be disastrous: “Speech therapy, physical therapy, they’re no use. Maybe a bit of emotional support, but other than that? ALS Digest? A bunch of hysterical Californian hacks.” It’s those small jabs at my emotional supports that make me feel undermined. I haven’t done any speech therapy since. Go on without the things that give me hope? I can’t. I wrote my neurologist a letter about it.

Maart 1999

Doctors aren’t doing me any good. My legs are shaking heavily now. Too much empathy is another thing that I can’t stand. I wish everyone could just act like themselves, like everything is back to normal. Then again, nothing is normal anymore, is it?

Het bericht Doctors verscheen eerst op Living with ALS.

I have three practical worries; my mucus problems, mobility and the accompanying trouble I have using the bathroom using a patient lift. All three of them are easily solvable, but to me the solutions are worse than the problems themselves. There are suction machines to help me clear my throat, but it only works for some people. Others say it only made their issues worse. Which one is preferable? My mobility problem could be fixed by using a sling lift, in which I’d have to sit in something that looks like a big sack. That doesn’t sound appealing to me either. I hate not standing upright and I don’t even think it’s possible to use a sling lift with only one carer, especially since my neck can’t keep my head upright. As for using the toilet, a lot of ALS patients choose a catheter, but that’s a big step, not taken lightly.

My trouble with standing upright made my shower lady ask me if I didn’t think it was time to get a sling lift. She thought Hein’s endless lifting isn’t sensible anymore. Besides, she said a sling lift is easily operable with only one carer. I still have my doubts, although I trust my shower lady more and more. However, she doesn’t see the gravity of the changes she proposes. Hein first talked to me about the possibility of getting a catheter and she backed him up, saying it was just a matter of emptying the bag of pee on my leg every time it’s full. “We could get a catheter,” Hein said, to which I scoffed “We?” Easy for them to say. When the shower lady said that the people delivering the sling could simply take away my standing-up one, all I could do was glare at her.

After a weekend of choking on mucus, we ordered a suction machine and we’ve made an appointment for a demonstration of a sling lift. Two more steps toward complete powerlessness.

P.S.: By now, we’ve tested out a sling lift. It was true, it’s operable for one person, provided that person knows how to use it. I had to endure so many “I told you so”s, not to mention the dreaded comment that the demonstrators could take the old lift with them when they left.
Getting a new sling lift would affect a lot of other parts of my life. It’s impossible to get my trousers and pants down without a way for me to stand up. I already wear special legwear with velcro and a fly on my backside. Despite that, it’s still a whole lot of trouble to get me on the toilet, making a catheter or incontinence aids (Diapers. They’re diapers.) that much more appealing

Oxygen

I’ve quickly grown dependent on oxygen. Three weeks ago, I barely felt stifled, but nowadays I can’t sleep for more than 1.5 hours without having trouble breathing. Luckily, I have oxygen now. Keep in mind, pure oxygen is not the same as artificial respiration. With something like tracheal intubation, a mixture of different gases including oxygen is pumped into the lungs. It requires an extensive hospital stay, usually a week, to find the perfect balance of gases for a person. I’m using pure oxygen. It’s not exactly good for me, because it increases the amount of CO2 in my blood, but it is easier. The oxygen tanks are delivered to my house without me having to stay in hospital. I didn’t even have to consult a doctor besides my first appointment to get a prescription. As little time in hospital as possible, that’s what I like. The oxygen comes in canisters and is applied through nasal intubation. I haven’t heard of too many ALS patients using this method. Of everyone I’ve corresponded with, only one used it too, and only at night. I hope I won’t have to use it by day, although I have noticed that taking afternoon naps is becoming more difficult because I’m breathing more deeply. I’m feeling restless.

Feeding tube

I ingest a litre of food through my feeding tube, which adds up to 1500 calories a day. Besides that, I drink a “Good Morning” for breakfast, eat fruit and Activia yoghurt. An average woman needs about 2000 calories a day, but seeing as I don’t move, I don’t need as much. I’ve been eating a lot more than I did before (I don’t know if ‘eating’ is the right term). Four glasses of PEG food a day, trying to emulate my normal eating pattern. I love how easy it is. Only now have I realised how much energy I spent on eating before. I’ve been gaining weight too. One of my carers said my face has gotten much fuller.

Sore throat

On Thursday my throat started to hurt a bit and the next day, I couldn’t talk anymore. The only thing that escaped my lips was a pathetic rasping. I obviously had strep throat, which I’d probably caught from one of my family members, all of whom were ill as well. It took two weeks to pass. Two weeks of not being able to clear my throat as mucus just kept building up. Two weeks of fighting for air. It was unbelievably tiring, all of the coughing and the intermittent panic attacks. I repeatedly asked my company to leave so I could concentrate on clearing my throat. I was afraid of showering. I woke up multiple times a night to try to get some of the mucus out. My throat didn’t even hurt anymore and, for awhile, I was scared that this would be the new status quo for me. Clearing one’s throat, something that takes about a second for normal people, usually costs me hours. Fortunately, it did pass. I haven’t coughed in two days. Yesterday, after three weeks spent indoors, I tentatively went outside. Not too far, mind you. Today, I visited the Anthropological Museum in Leiden, still feeling a bit apprehensive. On Thursday, I’m going to a musical and the fundraiser is planned on the day after. I’m excited, if a bit nervous.

Hein

For more than ten years, Hein has been my most trusted companion as my illness progresses. He was there with me, in the doctor’s offices, during homeopathy appointments, during the PEG operation, but also at the hairdresser’s, driving me around, going on holiday with me and even falling asleep. It’s not been easy for him, with the past few months being especially challenging. Every time I have to get out of bed to spend the rest of the night sleeping downstairs, he carries his mattress downstairs and sleeps next to me. I can’t be alone anymore. Lieke has been here to help me sleep for a night or two a week, and Floor does the same. Still, the lion’s share is Hein’s. He’s had my back from day one and is constantly vigilant. He may not be a paragon of patience, but I understand why he isn’t, even if it may not seem like I do in the heat of the moment.

Sometimes, I get mad when he doesn’t understand my needs, when he thinks I’m being too nitpicky about my body’s positioning or when he’s not in my field of vision while he’s talking to me. The same goes for him, he doesn’t always put up with my barrage of little tasks. It’s not uncommon for ALS couples to have these kinds of tensions. Still, we manage just fine, largely thanks to Hein.

Fundraiser

It’s finally upon us. The night before the fundraiser I was pelted with emails, especially about the Italian delicacies. At the last minute, it turned out that we weren’t supposed to make the Italian food ourselves as it was against the law to do so without a permit. In the end, we found a caterer. I considered the musical on the night beforehand a sort of dress rehearsal for the fundraiser. For the first time in a while, I was put into the car, alongside a canister of oxygen. There was no trouble and I fared well. So, the next day we arrived in Alphen, equipped with my most comfortable chair and oxygen. The theatre looked enchanting and the interior was very nice too. When I came in, I was the centre of attention, a position I don’t do well in, I had to acclimatise first and find a nice quiet place to settle down. I was seated by the entrance, able to watch the crowds come in. Hein and Floor were by my side, while we had a good view of the cloakroom, where Ward was busy handling people’s coats. A picture was taken of me and the organisational team before the show began. It was a successful night. Monieke gave a speech, the show was fun with a lot of audience interaction. Monieke, as the person who had set the whole thing in motion, was lauded by the ALS foundation and the final yield was almost 4000 euros. During the intermission I had a picture taken with all of my carers, who had never met each other before that night. We went home at half past twelve at night and we hit the hay at two. I was still tired the next morning, but it was worth it. I had a marvellous night. Thanks, everyone!

During our post-fundraiser meeting, we drew a few conclusions, which are as follows. Generally, we were happy with how the event went. The Italian delicacies set us back a bit because the catering cost us some money, but it did look very festive. In total, we’ve made a net 3000 euros from donations and ticket sales, so combined with the LEGO sorting nights, we’ve made 4300 for the ALS Foundation. We didn’t know 60 out of the roughly 200 people that showed up, so we must have drummed up some publicity as well. My website was visited 2500 times last month by 1800 unique users. That’s about 600 more than my average.

Relieved

Yesterday, we met with my occupational therapist. It turned out that I wouldn’t need to alter my wardrobe any further in order to use the sling lift. You can imagine my relief. Besides that, she believed that the sling lift wouldn’t impede my bathroom usage, so a catheter wouldn’t be necessary. Another reason for celebration. She talked to me specifically and not just to my carer. I think I’d like to see her more often.

Sinterklaas

This will be the first year we celebrate Sinterklaas with just the kids. Travelling all the way down to Alphen to celebrate with fifteen people is becoming a bit too straining for me. I’ll be spending the rest of the month writing Sinterklaas poems, which is why I’m posting this diary early.

Het bericht Diary November 2007 verscheen eerst op Living with ALS.