amyotrophelateralsklerose

Lose weight

Seitenaufrufe: 1,137 Wenn du Tipps zum Abnehmen brauchst, da habe ich ein paar auf Lager. Mit ALS geht das noch konsequenter als mit den 25 km, die ich vor einiger Zeit noch in 2:35 gelaufen bin. Wie das Abnehmen der Maske funktioniert, erkläre ich im Punkt „Maskenwechsel“.

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Putting on the nose-mouth mask

Page views: 975 For a basic understanding of the process of putting on the mask, I will first refer you to the manufacturer's instructions and translate the whole thing for you. Attention! The manufacturer's instructions only describe the basic procedure for patients who require ventilation for support and can still breathe independently while the mask is being changed. Since the mask in...

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Philips Respironics Amara View Nasal-Mouth Mask

Page views: 946 Let's start with one of my most important tools of all. It is also the tool with which the most mistakes are made, because nobody explains it properly and apparently everyone thinks it will work somehow. From my experience with over 40 intensive care nurses (or supposed intensive care nurses), I can assure you that this is a dangerous fallacy. What...

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My tools

Page views: 949 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: 1,002 If, like me, you are dependent on outside 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: 942 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 had from the old nursing service were so wrong. It's an indictment that in eleven months they didn't manage to at least correct this and document it properly. The following medication plans are...

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Emergency plan

Pageviews: 1,016 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: 1,194 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: 1,074 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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