Page views: 726 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 can 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: 850 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...
Pageviews: 652 Dear diary, I just can't seem to get it right. Just when you think you've had enough vomit this week... just when you think things are about to change for the better in your care... just when you're thinking about whether changing care provider might not be a wise decision after all... Then it's time for another hearty...
Page views: 642 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...
Page views: 690 Dear diary, I'm glad you're here. You understand me. If I disagreed with you in a factual discussion, you wouldn't insist on your opinion and harp on about it without questioning it. I would have forgotten something, I hear that several times a day. Although the balance 100% on „Patrick didn't forget anything, but carer made a mistake“...
Pageviews: 632 Dear Diary, To this day, I'm fascinated by the fact that at 43 years old, 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....
Page views: 721 Dear diary, it's actually an irony of fate. I never used to have a problem drinking two bottles of water between 15 gin and tonics when doing sport or partying, for example. Or at the Oktoberfest. When I remember that I used to drink ten litres in the best of times, that's unthinkable today. Today that would be...
Page views: 656 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: 677 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...
Page views: 663 Dearest diary, you won't believe it. My carer was already packing my bag. Hospital. Because of bleeding gums? Dude! He's moderately enthusiastic about the idea of going to Munich city centre today. There in the ambulance, because the intensive care transport that was ordered has come in 0 % of the cases so far. Instead, a simple crane transport arrives without a doctor and the helpers...
