{"id":5126,"date":"2023-03-24T18:05:29","date_gmt":"2023-03-24T17:05:29","guid":{"rendered":"https:\/\/paddys.de\/?p=5126"},"modified":"2023-03-21T20:53:00","modified_gmt":"2023-03-21T19:53:00","slug":"5126-2","status":"publish","type":"post","link":"https:\/\/paddys.de\/en\/5126-2\/","title":{"rendered":"Alarm! Exclamation mark."},"content":{"rendered":"Reading time<\/span> 2<\/span> Minutes<\/span><\/span>\n

This article is part of a series of contributions.<\/em><\/strong><\/p>\n\n\n\n

Besides all this wishful thinking about what a cannula could do better, there's another question that needs to be clarified. How am I supposed to call for help?<\/p>\n\n\n\n

At the moment, I simulate a leakage with my jaw and lips and thus set off the alarm. That will stop as soon as a cannula is stuck in me. Then the respirator takes over everything. A premature stroke, as I can currently trigger by leakage, is not possible with a cannula. And the alarm doesn't work with it either, unfortunately.<\/p>\n\n\n\n

I have enquired about another eye control, but the paths are .long. The original supplier of the aid has taken the product out of the range (wonder why). They don't have a comparable alternative on offer. Just some ancient all-in-one PCs and tablets - at least in my world it's 2023 and computer parts from 2016 are old in my opinion - which have a licence as an aid with the software for eye control and can therefore be sold at exorbitant prices. The health insurance will pay.<\/p>\n\n\n\n

So again I have to find a provider who can bill my health insurance. The usual ordeal of a home visit follows. To determine my needs. I get it. Half a year has passed since the last half-day appointment with the previous provider. I have certainly learned to speak again since then.<\/p>\n\n\n\n

And then there is also the question of what I do when the poorly developed software hangs up or the iris camera loses focus as an input device once again. Well, good question. I don't have an answer to it yet. <\/p>\n\n\n\n

<\/div>\n\n\n\n

None of this is easy. In my life, I've already had to make some momentous decisions. Investment decisions, for example, are easy for me. Incidentally, even if they were made \u201efrom the gut\u201c and not objectively considered. I've fallen flat on my face often enough. It's best to learn from such mistakes. At least you should.<\/p>\n\n\n\n

I also make fundamental decisions about my personal career swiftly and bindingly. Whether it is to refuse to work for reasons of personal conviction and to accept termination without notice without grumbling, ... To nevertheless invest 100,000 \u20ac (which I absolutely do not have and cannot find) when founding a company, ...<\/p>\n\n\n\n

I find it surprisingly difficult to decide that now is the right time for a tracheotomy. It was somehow easier for me to decide in favour of a PEG. Today, when I think about going to hospital for the next planned procedure, the first thing that comes to my mind is something completely different: anything but this care service. I can't afford it financially and health-wise. Unorganised chaos, unsterile work (and making fun of how they supposedly did everything wrong at the hospital and how - quote - \u201eretarded\u201c everyone else is) have already cost me enough.<\/p>\n\n\n\n

<\/div>\n\n\n\n
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To be continued...<\/a><\/div>\n<\/div>\n\n\n\n
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<\/p>","protected":false},"excerpt":{"rendered":"

Dieser Artikel ist Teil einer Beitragsreihe. Neben diesem ganzen Wunschdenken, was eine Kan\u00fcle besser machen k\u00f6nnte, gibt\u2019s noch eine weitere Frage, die gekl\u00e4rt werden muss. Wie soll ich denn dann bitte um Hilfe rufen? Im Moment simuliere ich mit meinem Kiefer und meinen Lippen eine Leckage und l\u00f6se dadurch Alarm aus. Damit ist Schluss, sobald eine Kan\u00fcle in mir steckt. Dann \u00fcbernimmt n\u00e4mlich die Beatmungmaschine alles. Ein vorzeitiger Hub, wie ich ihn derzeit durch Leckage triggern kann, ist mit Kan\u00fcle nicht machbar. Und der Alarm funktioniert damit leider ebenso wenig. Eine weitere Augensteuerung habe ich angefragt, aber die Wege sind…<\/p>","protected":false},"author":1,"featured_media":5131,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_lmt_disableupdate":"","_lmt_disable":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"footnotes":""},"categories":[1],"tags":[38,35,36,37],"class_list":["post-5126","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-posts","tag-als","tag-amyotrophelateralsklerose","tag-amyotrophiclateralsclerosis","tag-seltenekrankheiten"],"acf":[],"modified_by":"Ruppelt Patrick","wps_subtitle":"","_links":{"self":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/5126","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/comments?post=5126"}],"version-history":[{"count":8,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/5126\/revisions"}],"predecessor-version":[{"id":5135,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/posts\/5126\/revisions\/5135"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media\/5131"}],"wp:attachment":[{"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/media?parent=5126"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/categories?post=5126"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/paddys.de\/en\/wp-json\/wp\/v2\/tags?post=5126"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}