amyotrophelateralsklerose

It gets under my skin.

Page views: 636 Let's see, what else happened that was exciting? One of my carers got a new tattoo while he was at home. It looks good. For me as a layman, it was also very neatly done. When I looked through the pictures of the studio where he works on Instagram, I noticed a few works in particular. The...

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Hit List (Week 20)

In this specific case, the AOK did not have to pay anything. Precisely because the expert was of the opinion that my ALS would not change anything in the medium term. I don't want to give too much away. But it will be good.

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The thing about the thing

Pageviews: 828 Part 3 of 3 Shitting has to be learnt. New day, new luck. Have you digested yesterday's post yet? Well, I'm only moderately so. To be honest, my enthusiasm for writing about my ridiculous Pippifax problems has not yet returned. But this should be the shortest part by far. If you missed the first two, you can find them here...

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The thing about the thing

Pageviews: 765 Part 2 of 3 Problems that mean the world. Can. But definitely do when they do. We were in trouble. And I'm starting an extra post for that? Actually, yes. Over the last few weeks, months and years, I have repeatedly experienced the lack of understanding about my ALS disease. Especially when it comes to medical...

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The thing about the thing

Pageviews: 766 (Part 1 of 3 Nothing in our lives can be taken for granted. Not even the ability to take a shit. Nice shit. Rarely is this expression more apt than in this context. Because today I want to dish up some shit for you. To be precise, I would like to tell you about this very thing. I've neglected writing for the last two days for some reason. Instead...

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Manicure

Page views: 804 Supposedly a boring topic. But, as so often in life, it depends on your point of view. Is a manicure billed differently to a pedicure? Obviously yes. I haven't found anything about the reasons for this yet. Is a manicure for a tetra (patient with four paralysed limbs) to be assessed differently from a pedicure in terms of handling? Nope, I can...

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You are right and I mean peace

Pageviews: 710 Dear Diary, As much as I'm thinking about changing care provider, can I even seriously consider it? Imagine people working there with respect and common sense. What am I supposed to get upset about then? That's not possible. Somehow I can't shake the feeling that my excitement...

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Supply chain problem chain response.

Seitenaufrufe: 681 Liebes Tagebuch, wieso fällt mir eigentlich nichts Erfreuliches mehr ein, über das ich berichten könnte? Man könnte fast den Eindruck bekommen, dass es mir im Moment nicht so sonderlich dolle geht. Kein Grund zur Sorge, ich springe nicht gleich von der nächsten Brücke. Der Aufwand, da überhaupt erstmal hinzukommen, erscheint mir deutlich zu hoch. Wenn du das...

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Your body? Exactly not.

Page views: 786 People simply don't want to believe me when I say that I'm not hungry or have no appetite right now and therefore don't want any more food to drink. People just don't want to believe me when I say that 1.5 litres of the finest Munich tap water via the PEG will last me until 4pm. I'm not in the mood to drown. You want to...

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Basic care

Page views: 581 Well, basic care. What is there to say? Not much, you're the professional. I think a few key points will suffice. This was the end of my original description of basic care. But then everything changed. I was wrong. It's not clear how basic care should work for me after all. What specifically...

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