Page views: 730 Dear diary, this is a really cool thing that I was finally able to set up with the active support of my sister. The hardware has been installed and connected for ages and three days. But setting up the various necessary apps has proved to be a bit tricky on several occasions so far. The current...
Page views: 812 Dear diary, it came as it had to. As it always happens when I try to sweeten my fellow human beings' time with me. My generosity is mercilessly exploited. Probably not even intentionally and not maliciously anyway. But that doesn't change the result. It keeps my brain busy for days. My pulse races, instead of 60-70 at rest I can...
Page views: 791 Last time I tried to explain what changes occur to the nerves as a result of ALS. The bottom line is that I can hardly move anything any more - keyword tetraparesis - but I feel and sense everything as I always have. And also want to feel. My girlfriend gave me a „scratcher“ for my birthday, a telescopic stick fork scratcher...
Page views: 926 Today, for a change, I'm not complaining about my care service or moaning. Quite the opposite. Today I want to tell you something about the real life of an ALS patient. Something you won't find in any textbook. Why doesn't anyone write about such things? Good question. Probably because it doesn't make any money and...
Page views: 690 Dear diary, help me. I don't want to have to lie in my nursing bed again and watch a trickle of blood run from my mouth into my pillow. After all the trouble and stress I've just had because of my bleeding gums, I've had enough for the next few weeks. I already have a toothbrush ban...
Seitenaufrufe: 753 Liiiiebes Tagebuch, schön, dass es dich gibt. Du verstehst mich. Wenn ich dir in einer sachlichen Besprechung widerspreche, du würdest nicht auf deine Meinung bestehen und darauf rumreiten, ohne sie zu hinterfragen. Ich hätte irgendwas vergessen, das höre ich mehrfach täglich. Obwohl die Bilanz 100% auf „Patrick hat nichts vergessen, sondern Pflegerin hat einen Fehler gemacht “...
Pageviews: 667 Dear Diary, To this day, I'm still fascinated by the fact that at 43, I'm obviously already part of the age group we used to call „goths“ when I was a kid. Instagram is too much adverts and BS for me. When I talk about Facebook, my carers laugh at me. Who still has Facebook today. And yet another blog....
Seitenaufrufe: 786 Liebes Tagebuch, es ist eigentlich schon eine Ironie des Schicksals. Ich habe früher nie ein Problem gehabt, beispielsweise beim Sport oder beim Feiern zwischen 15 Gin Tonic noch zwei Flaschen Wasser zu trinken. Oder auf der Wiesn. Wenn ich mich erinnere, dass ich in den besten Zeiten mal zehn Maß getrunken hab, heute undenkbar. Heute wären das...
Page views: 719 Phew! Dear diary, can I even put you through this? But if not you, then who? I've been trying to meet someone in charge for weeks. PDL, GF, someone who has something to say. We've also made several appointments over the past few weeks. But without exception, all of them were cancelled by the management. Most recently, I received two new appointment proposals,...
Page views: 763 Dear diary, am I doing something wrong? So probably yes, it can't be normal. But then what am I doing wrong? Or do other patients have similar problems? I don't think so, that would be tragic to the power of ten. The bleeding has stopped. The panic still has a firm grip on me. 3 Tavor Expedit and 10 drops of morphine directly under the...
