Page views: 713 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: 834 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: 636 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 wondering whether changing care provider might not be a wise decision after all... Then it's time for another hearty...
Page views: 631 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: 677 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“...
Seitenaufrufe: 621 Liebes Tagebuch, bis zum heutigen Tage bin ich fasziniert davon, dass ich mit meinen 43 Jahren offensichtlich bereits zu der Altersgruppe gehöre, die wir als Kinder „Gruftis“ nannten. Instagram ist mir zu viel Werbung und BS. Wenn ich was von Facebook erzähle, lachen mich meine Pfleger aus. Wer heute noch Facebook habe. Und noch einen weiteren Blog,...
Seitenaufrufe: 705 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...
Seitenaufrufe: 641 Puh! Liebes Tagebuch, darf ich dir das überhaupt zumuten? Aber wenn nicht dir, wem dann? Seit Wochen versuche ich, irgendwelche Verantwortlichen zu treffen. PDL, GF, irgendwen, der oder die etwas zu sagen ha. Wir hatten in den vergangenen Wochen auch mehrfach Termine vereinbart. Aber ausnahmslos alle wurden von der Geschäftsführung abgesagt. Zuletzt erhielt ich zwei neue Terminvorschläge,...
Page views: 653 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: 651 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...
