The time has come for me to feel the need to do some educational work on ALS. Not in the sense of hard facts. Hard facts and figures can be found on enough other sites. And they are either incorrect or should be treated with great caution, or they are boring. Mostly both. If statistics have their way, I'm already in the ground. But I don't see myself there for a long time yet.
ALS is a pretty crazy disease. How would I describe it? What does it mean for the person affected in everyday life? How do you behave as an outsider? Not so easy to answer when you think about it. Because I think the only real unique selling point is the constant change. The word „constant“ was chosen deliberately.
At first, everything is completely surreal. In my case, I kept tripping over my right foot while jogging in the forest. It turned out later that the cause was an incipient weakness of the foot lifter. Hard to imagine. One moment you're trying to reach your personal goal for the year in September, before the Wiesn starts. And then the strong beer season. Winter Tollwood. Yes, and winter itself, with Advent and Christmas. There wouldn't be much time to complete the 1,000 km. Everything looked promising. And then this. You fly over your own feet and can't do 2 km without asthma spray. In winter.
Time jump. I'm in a wheelchair. Now I no longer have to keep being told that I'm perfectly healthy and should see a psychiatrist instead of another neurologist. After six months of running from doctor to doctor, I now have a diagnosis: suspected amyotrophic lateral sclerosis, having ruled out all other „known“ diseases. They couldn't tell me much about it, I was told at the hospital. But I shouldn't ask Dr Google so much. But who else do I ask? At the hospital, I even had to prise the information out of the professor's nose that there is no treatment for it, that the disease is incurable and will lead inexorably to death within a few years. Still surreal.
Change of scenery. I drive my S4 to the customer. It was my fifth Audi at the time. Petrolhead, guilty. The car was bought, then I had it converted to hand throttle because my legs are paralysed. I probably would have had to go to driving school for it. But it wouldn't have been worth the effort. Until there's any doubt about a hearing, just take my licence away. I won't be able to drive anyway. I already can't lift my Ottobock lightweight wheelchair. I'm ordering a full carbon ultralight wheelchair, the price of which I've pushed into the five-digit range. This aid is not covered by the health insurance. I should use the existing wheelchair. Yes, thank you for this high-quality rejection.
I went to the office with it a few times. Effectively only on days when I would have had to go into town for physio anyway. And for a handful of clients. Then came Corona. No one could tell you what effects COVID-19 could have on ALS patients. My respiratory muscles are already on the back burner, but it feels like 200% continuous operation. So, nothing but expenses. Is anyone looking for a wheelchair that you can lift with just one little finger?
Speaking of unapproved wheelchairs. When the AOK asked me about my application for an e-wheelchair, I couldn't help but rudely ask them in writing whether they were actually trying to take the piss out of me. I was asked to explain why I could not use public transport instead of a wheelchair.
You've really got it in the brain. Unfortunately, as an ALS patient, you get this feeling all too often. Nobody at the health insurance company knows anything about it, there is no training - at least not with even poor results - and the company guidelines say to reject everything first. Without wanting to name names, I was told by several former employees of the health insurance companies that I would also represent them in the event of a lawsuit. Someone has to speak up. That's ALS too. As an ALS sufferer, you've got the arse end of the stick everywhere.
Change of scene. My business partner's phone rings in the office. He has received a Whatsapp from me. Normally I would write to him via the company chat system. But I can't get there. I send him a text along the lines of „Didn't make it from the bathtub to the wheelchair, trying to crawl to the door. Can you come?“. And that's what happened. All that remains is the memory. The bruises, the pain, the hard, cold parquet floor against skin still wet from the shower ... that fades. But, that's my point, the feeling is there. ALS is not exactly like paraplegia. I have already been treated by doctors who mentioned paraplegia as a characteristic of the disease. But that's completely different. Only nerve cells that are responsible for voluntary motor function are affected. The involuntary muscles continue to function in exactly the same way as the entire sensory system.
This, my ALS, is - you guessed it - kind of surreal. I'm lying in bed, having to be ventilated around the clock. I make a big mental leap. We have arrived in the here and now. My abdominal, pelvic and chest muscles are virtually non-existent. These are muscles that you can consciously control, they practically just fall apart and there's absolutely nothing you can do about it. Defecation therefore only works with regular administration of Movicol (softener and laxative). If I then have to, I either enema if I feel that something is almost coming. Otherwise we help with Dulcolax (suppositories). As if that wasn't shitty - how apt - enough, there are always carers who can be super nice but unfortunately have a completely wrong picture of my illness. And a mum complex or I don't know what. As I said, I feel everything, and I'm pretty sure I've even developed a better perception than the people around me because of the other limitations. So. With this knowledge in mind, please give me a single plausible reason for denying myself the last shred of independence even when pooing and before I can answer the question of whether anything has come yet, just go and have a look.
Yes, I am a care case. But does that give anyone the right to ignore me, to de facto not even let me finish when I have been asked a specific question? To look into my nappy without being asked, regardless of any visitors? How would you like it if someone grabbed you at the shop and checked how successful you had been and then told your visitors everything about consistency, shape, colour and quantity? Unfortunately, that too is ALS. With ALS, you are not only a care case, you are increasingly being turned into one.
The fact is: I have come to terms with ALS. I organise my life independently. All the appointments, orders and processes that I manage run smoothly. Quite in contrast to the chaos that my care service creates.
The only thing I can't cope with - and don't want to cope with - is the feeling of personal disenfranchisement from so many sides. Providers, doctors, carers, the very people who should know best are allowed to internalise the following list.
- I know myself whether I have shat all over my nappy or not. You don't have to check it for me. With ALS remain all feelings, both physical and cognitive exist.
- I can decide for myself whether or not I want more food via the PEG. The mind is affected by an ALS not impaired. I don't need anyone telling me bullshit like I need to drink more food than the manufacturer recommends because I need to build muscle. With ALS, you lose muscle. That's a fact. According to current knowledge, this cannot be stopped and it cannot be reversed.
- I'm not 80, so talk to me like a normal person and not like I'm your grandpa. Unusual ageing heard not to ALS.
- I am not deaf. Being deaf belongs not to the clinical picture of ALS. So you don't have to shout.
- At 43, I don't need anyone to tell me when to get up. Believe me, I can decide that for myself. Not to mention the conspicuousness that I should best not get up until 10 o'clock, as soon as your night shift is over. Not many people have managed to ignore me in the morning, forget me at night and wake up when the day shift rings the doorbell. The best thing is to say that I slept like a log. I hear this regularly. It means that the nurse was out of it and has no idea what happened in the last few hours.
- If I say, based on several years of experience, that the headgear of the mask is too far down, i.e. in the neck, then please believe me. If I say it's easier to put it on again, then please believe me. If I say that my neck is overstretched, please don't start denying it. Where is there such a thing?
- My brain does not forget. It always has and it hasn't changed. Dementia is none Follow-up to ALS. You'll have to live with the fact that I'll answer every one of your sentences with the phrase „Have you forgotten?“ or „Do you remember?“. That's probably also part of ALS. From what I hear - I'll have to do some more research in this area - almost all ALS patients fulfil at least two of the three characteristics of above-average intelligence, athleticism and good looks. I can well imagine that other ALS patients are annoyed when people try to put mental limitations in their mouths.
- Nor do I attach any importance to being lectured on the possible consumption of stimulants. And especially not from someone who is surprised by my unannounced friends - who have a key to the flat - at a morning pint from a petrol station can. Sorry, it's so absurd what I'm experiencing, I have to process it somehow, so I'm writing .
- ALS does not cause pain. Nor any emotional or psychological ones. The consequences of ALS may be painful at times. Of course I miss my girlfriend. I want to get in my car right now and drive to see her. F*ck ALS. And caregiving errors often enough result in pain. I'm not saying cramps aren't uncomfortable for a few minutes sometimes either. But that's not a symptom of ALS.
- A little anecdote to end with: I am an agnostic and an atheist. Don't try to convert me, it's disrespectful.
