amyotrophiclateralsclerosis

Care instructions with a difference

Seitenaufrufe: 1,206 Diese Sammlung von Anleitungen habe ich selbst mit meiner Augensteuerung geschrieben. Ich habe dafür bis zu 18 Stunden am Tag vor dem Monitor verbracht. Ich fände es deshalb schön, wenn du dir die Empfehlungen von mir sehr genau durchlesen und beherzigen würdest. Pflegeanleitung, Hilfsmittel für Neu- und Quereinsteiger, Fassung vom 22.07.2022, P. Ruppelt 2022 So steht es...

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When case workers play doctor

Seitenaufrufe: 1,436 Es ist eine ganze Weile her, dass ich Probleme mit meiner Krankenkasse hatte. Seit ich eine persönliche Ansprechpartnerin habe, die Verständnis für die vielen, oft nur kleinen, aber praktisch immer sehr besonderen Gegebenheiten und Umstände von ALS Erkrankungen aufzubringen vermag, läuft die Sache. Zumindest in der Theorie. Denn leider hat auch meine übliche Bearbeiterin irgendwann Urlaub. Oder...

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Eye control

Seitenaufrufe: 1,383 Meine Fresse. Für kein anderes IT-Produkt bin ich so dankbar, dass es so etwas gibt. Aber meine Fresse, das Teil hat mich so manchen Nerv gekostet. Es ist mit Abstand die beste Hardware und beste Software, die ich aus dem Segment der PC-Augensteuerung kenne. Aber ich und meine Ansprüche wieder. So ein Riesen Fickfuck. Ich würde mich...

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Acknowledgement

Pageviews: 1,096 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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Care contract

Page views: 947 Treasures, it's time to celebrate for now. New care contract signed and sealed. An incredibly big thank you to everyone I can't list individually. You know how happy I am that you exist.

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August of Terror is covered

Page views: 1,015 It's already Thursday, time is running out and well, everything looks like it's going to work out with my new care service. Several employees have already been here for familiarisation. The two guys yesterday made a calm but motivated and professional impression. The colleague today was also great. Apart from the one with me...

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Supplementary budget Cigarette No. 1

Page impressions: 1,125 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 to 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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The principle of hope

Pageviews: 1,097 Some people are beating their hands over their heads at my serenity coupled with deep black humour. But what's the point of stressing yourself out? Nothing. It could be worse. Besides, there is hope that there is hope. At least I hope so. At the moment, however, it all looks as if my puzzle will come together after all...

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Somehow it will work out

Page views: 993 It's time for a little update. I'm doing great with the eye control, but it's no comparison to my usual 500 keystrokes per minute. As I reply personally to everyone who writes to me, it takes time and I have still been able to reply to all messages. Sorry for that. Rest assured I am grateful for any tips and...

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