seltenekrankheiten

When we get stuck

Page views: 1,074 As well prepared as we may be, no matter how much time we spend together, there will always be situations where you don't have a clue what I need. When I sleep, for example, I wear the nose-mouth mask. Under this, it is physically impossible to generate positive pressure when exhaling without using your own muscle power. I can therefore use this...

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Things that must not happen

Page views: 1,003 Some of these things hurt like hell, others are just frustrating or will annoy me to death if I live long enough to be annoyed to death. Still others are directly related to my breathing. They have an immediate effect on everything in my body. There's no room for discussion. What...

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Care instructions with a difference

Page views: 1,189 I wrote this collection of instructions myself using 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 new and lateral entrants, version dated 22/07/2022, P. Ruppelt 2022 This is what it says...

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When case workers play doctor

Page views: 1,402 It's been a while since I had any problems with my health insurance company. Since I've had a personal contact who is able to understand the many, often only minor, but practically always very special circumstances and circumstances of ALS diseases, things have been going well. At least in theory. Because unfortunately my usual contact person is also on holiday at some point. Or...

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Acknowledgement

Pageviews: 1,067 Awesome shit. You'd think there was nothing going on in my life. And yet I'm plagued by the little bit of conscience I still have. I haven't answered so many messages, or at least not properly. So many lovely people who shared my original post (and there were hundreds of them in the first few hours alone)...

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August of Terror is covered

Seitenaufrufe: 987 Nun ist es schon Donnerstag, die Zeit rennt und nun ja, es sieht bei mir alles so aus, als würde es mit meinem neuen Pflegedienst funktionieren. Es waren schon mehrere Mitarbeiter zur Einarbeitung hier. Die zwei Jungs gestern machten einen ruhigen, aber motivierten und professionellen Eindruck. Der Kollege heute war auch klasse. Abgesehen von seiner mit mir...

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Supplementary budget Cigarette No. 1

Page impressions: 1,104 Supplementary budget for yesterday: all kinds of different varieties and flavours of tobacco from e-cigarettes stuffed into empty capsules of the Kiffomat 3.000 (better known among health insurance companies as Vapormed Volcano MEDIC 2 and if you ask me, it's a Storz & Bickl Volcano Hybrid) in a painstaking and delicate manual process. Huge thanks to Geli and Erik. So can...

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My care service fucked up

Pageviews: 1,031 Spoiler: Better sit down before you read on. When you've recovered from the initial shock, share my post, tag anyone who can help me, comment and join in the discussion... My name is Patrick, I'm 42 years old, I was diagnosed with ALS five years ago and still claim to be living life to the full and enjoying it....

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