amyotrophelateralsklerose

Emergency sign

Page views: 949 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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Care instructions with a difference

Page views: 1,181 I wrote this collection of instructions myself using my eye control. I spent up to 18 hours a day in front of the monitor. I would therefore appreciate it if you would read my recommendations very carefully and take them to heart. Care instructions, aids for new and lateral entrants, version dated 22/07/2022, P. Ruppelt 2022 This is what it says...

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When case workers play doctor

Page views: 1,389 It's been a while since I had any problems with my health insurance company. Since I've had a personal contact who is able to understand the many, often only minor, but practically always very special circumstances and circumstances of ALS diseases, things have been going well. At least in theory. Because unfortunately my usual contact person is also on holiday at some point. Or...

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Eye control

Page views: 1,327 My God. I'm not so grateful for any other IT product that exists. But my gosh, this thing has cost me many a nerve. It's by far the best hardware and best software I know of in the PC eye control segment. But me and my expectations again. Such a huge fuck-up. I would...

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Acknowledgement

Pageviews: 1,056 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: 932 Treasures, it's time to celebrate for now. New care contract signed and sealed. An incredibly big thank you to everyone I can't name individually. You know how happy I am that you exist.

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August of Terror is covered

Pageviews: 972 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: 1,096 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 among 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: 1,042 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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