I wrote this collection of instructions myself with my eye control. I spent up to 18 hours a day in front of the monitor. I would therefore appreciate it if you would read my recommendations very carefully and take them to heart.
Care instructions, aids for newcomers and career changers, version of 22.07.2022, P. Ruppelt 2022
That's what it says in my care guide, which is over 100 pages long and extensively illustrated with photos. Originally a loose-leaf collection, in just a few weeks it became what I consider to be an extraordinary reference work for anyone who has to or wants to deal with the topic of ALS. It is largely told in a fictional style, so that reading it is a pleasure. I also believe that my deep black humour, coupled with my ruthlessly honest, open narrative reality, will make some of the things I read unforgettable. Which would be extremely helpful in the case of my own care. Because if I had to name the one thing that burdens me the most - at least in my personal experience, as a terminally ill person you are often asked this - then my answer would be clear: repeating myself. I don't have enough time in my life for that kind of shit.
Long before the onset of the disease, I used to babble a lot, but I always chose my words carefully. I think language is a fascinating and powerful tool. It can be very precise. Repetition does not fit into my world view of what is said, any more than it does in any other area of life.
Now try to imagine what it must be like for someone like me to have to repeat myself in my situation. As someone who is dependent on a speech computer for conversation, which he can only operate with his eyes. Believe me, every single word belongs exactly where it is written. In terms of caregiving, I have been forced to train new caregivers too many times for a lifetime. I can't do it any more. And I don't like it any more either. It's so unnecessary. From my guidance I hope to create a better understanding not only among my own carers, but also among you and the wider community.
This is precisely the reason why I am writing here and publicising my very personal „care tips“.
They are in themselves also only recommendations from me. My ALS disease is an asshole. The simplest and most mundane things suddenly become a life task. But not only that. One is never finished fiddling around for new, creative solutions to problems that orthodox medicine and the pharmaceutical industry don't want to know about, because things are constantly changing. That's why this booklet is constantly being updated. Whenever you have suggestions, let me know. I try out everything.
Nevertheless, there are a few things that are really important (to me), even essential for survival. I'll be happy to tell you more about the background and details later. For now, it's important to me that we all know what we're talking about. Because yes, you can have a lot of fun with me, no question about that. But the next chapter is literally my deadly serious. Really. Really really.
Stay tuned. There's plenty more to come.
