amyotrophiclateralsclerosis

Putting on the nose-mouth mask

Seitenaufrufe: 1,044 Zum Vorgang des Aufsetzens der Maske verweise ich für ein grundlegendes Verständnis erst einmal an die Anleitung des Herstellers und übersetze das Ganze für dich. Achtung! Die Anleitung des Herstellers beschreibt nur die grundsätzliche Vorgehensweise für Patienten, die die Beatmung zur Unterstützung benötigen und noch selbständig atmen können, während die Maske gewechselt wird. Da die Maske in...

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Philips Respironics Amara View Nasal-Mouth Mask

Seitenaufrufe: 1,027 Fangen wir doch gleich mit einem meiner wichtigsten Hilfsmittel überhaupt an. Es ist zugleich das Hilfsmittel, bei dem am meisten falsch gemacht wird, weil es niemand richtig erklärt und offenbar jeder denkt es wird schon irgendwie funktionieren. Aus der Erfahrung mit über 40 Intensivpflegekräften (oder vermeintlichen Intensivpflegekräften) kann ich versichern, dass es ein gefährlicher Trugschluss ist. Was...

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My tools

Page views: 1,007 As we have already established, everything always seems to be different for me than for everyone else. I need to be ventilated, but I still opted for mask ventilation. Unfortunately, that puts most people off at first. But it's easy to put the masks on comfortably and accurately. Even without pressure points despite zero leakage. You just have to...

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Daily routine / calendar

Page views: 1,085 If, like me, you are dependent on help for every little thing, no matter how small, a structured daily routine can be enormously helpful, even for a crazy slob like me. Display The current daily schedule is shown on the large portrait-format POI display. You can see everything here: which therapy is due, which doctor is coming when and why, when I...

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Medication

Page views: 995 Note: If you don't do everything yourself... I'll rewrite the medication plans as soon as I can find an hour to do it. Because the ones I got from the old nursing service were so wrong. It's an indictment that in eleven months they haven't managed to at least correct this and document it properly. The following medication plans are...

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Emergency plan

Pageviews: 1,067 Yes, I know that there is something like this somewhere in the file of every care service. Theoretically. Maybe even practically. But even then, such plans remain pure theory. They don't work in practice. I've experienced things that you can't imagine. A carer (who doesn't speak German, English, French or Spanish) seriously...

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Little things that make me happy

Page views: 1,284 It really doesn't take much to make me happy. As is so often the case, it's the little things that make life more beautiful. My fingers are constantly contracting. Unfortunately, this not only looks like shit and isn't exactly healthy, but it's also uncomfortable. So please stretch my fingers out again at every opportunity. When I...

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When we get stuck

Page views: 1,153 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

Pageviews: 1,020 Some of the things mentioned 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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Emergency sign

Page views: 1,018 When all else fails, I communicate directly through my eyes. It is therefore extremely important that you focus exclusively on me in all activities on and with my body. Signs that I use: Rapid eye blinking (eyes close and open constantly) Immediately lay me completely flat on my back with my head to the right. No cleaning....

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