Lose weight
Page views: 1,119 If you need tips on losing weight, I have a few in store. With ALS it's even more consistent than with the 25 kilometres I ran in 2:35 a while ago. I explain how to remove the mask in the section „Changing the mask“.
amyotrophelateralsklerose
Putting on the nose-mouth mask
Page views: 960 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...
Philips Respironics Amara View Nasal-Mouth Mask
Page views: 922 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...
My tools
Page views: 932 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...
Daily routine / calendar
Seitenaufrufe: 973 Wenn man, so wie ich, für jede noch so kleine Kleinigkeit auf fremde Hilfe angewiesen ist kann ein strukturierter Tagesablauf selbst für einen spinnerten Chaoten wie mich echt enorm hilfreich sein. Display Auf dem großen Hochformat POI Display wird der aktuelle Tagesplan angezeigt. Hier siehst du alles: welche Therapie ansteht, welcher Arzt wann wieso kommt, wann ich...
Medication
Page views: 928 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 haven't managed to at least correct this and document it properly. The following medication plans are...
Emergency plan
Pageviews: 999 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...
Little things that make me happy
Seitenaufrufe: 1,169 Es braucht echt nicht viel, um mich glücklich zu machen. Wie so oft sind es die kleinen Dinge, die das Leben schöner machen. Meine Finger kontrahieren sich ständig. Dummerweise sieht das nicht nur scheiße aus und ist nicht gerade gesund, sondern es ist auch unangenehm. Strecke deshalb bitte bei jeder Gelegenheit meine Finger wieder aus. Wenn ich...
When we get stuck
Page views: 1,052 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...
Things that must not happen
Pageviews: 998 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...