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
This is what is written in my care manual, which is over 100 pages long and extensively illustrated with photos. Originally a loose-leaf collection, in a few weeks it became what I consider an extraordinary reference work for anyone who has to or wants to deal with the subject of ALS. Told in a fiction style in large parts, so that it is a pleasure to read. In addition, I believe that my deep black humour, coupled with my relentlessly honest, open narrative reality make one or two things I have read unforgettable. Which would be extremely helpful in the case of my own care, concerning myself. Because if I had to name one thing that weighs on me the most - at least in my personal experience, people often ask me about that as a terminally ill person - my answer would be unequivocal: 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 exactly the reason why I am writing here and making my very personal "care tips" public.
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.
