DasIstALS

Volcano: Preparation (fill with capsule)

Page views: 566 The first thing we need is a fresh capsule of cannabis. You can find them on the cooking island in the kitchen. I get the capsules pre-filled from the pharmacy. Because grinding the cannabis and filling the capsules is quite labour-intensive manual work, delivery sometimes takes two weeks. Please bear this in mind and let me know in good time if I need to reorder...

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Burns under my nail.

Page views: 769 Dear diary, please explain to me how a carer can fail to notice this. Over the last few days and weeks, okay, months, I can't stop marvelling. You have to keep both eyes closed a la Jackass. But I also have something in the recent past. I am convinced that the main cause is...

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WiLAmed AIRniva (respiratory gas humidifier)

Page views: 773 I have a very big request on the subject of topping up the water in the humidifier. I emphasise this so clearly because I hope you will be the first to comply with my request. Special request: fill to at least 50% The humidifier must always, at all times, without exception, be filled to at least 50% with water. If there is less water in the humidifier, this...

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ResMed Astral 100 (ventilation)

Page views: 895 For legal reasons, my provider (Vivisol, see the „Important contacts“ section for contact details) is responsible for familiarising me with the device. As my ventilation is never switched off and I only use a single ventilation profile, you don't need to know too much about it. My devices I have two identical Astral 100s. The emergency machine is always connected to a separate tube...

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The Koschten.

Page views: 703 Dear diary, I've once again spent quite a lot on my care and treatments in the last few weeks. It feels like I've been receiving co-payment bills almost every day. This always amazes my carers and therapists. There don't seem to be many ALS patients with the highest care level and 90% severe disability who are not exempt from co-payments. But exactly...

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Fascination Fasciculation & Cannabis

Pageviews: 943 Hi there, it's a thing with the radio. Pretty much everything is repeated all the time. People are only too happy to claim that there are so many good musical, factual or other editorial alternatives that could be broadcast. Of course there could be, but every station that does this hasn't made it into the mainstream...

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Upwind.

Page views: 603 Dear diary, a few turbulent days lie behind us. Between Easter week, a family visit and a panic attack, my carer has lost touch with reality and, as a result, two new carers have spontaneously started work. The first one yesterday in the late evening - some would call it „night“ if you don't finish until 1.00 am -...

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The storm before the calm.

Page views: 652 Dear diary, but something always has to happen first. Why do I, the customer that I am at the end of the day, have to show complete apathy for the seriousness of the situation to be recognised? Dogs that bark don't bite. So they say. Anyone who knows me knows that I like to defend my opinion with arguments. Especially when...

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But in the dream I was with you.

Page views: 912 Dear diary, my warmest Easter greetings. For the readers of my blog, I wish you a belated Happy Easter. I still blur the date and time of my posts to make it impossible for third parties to establish a direct link to a person. And obviously, while I was writing, I thought that these lines were probably written around Easter...

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Inventory Olé

Seitenaufrufe: 751 Liebes Tagebuch, es kam, wie es kommen musste. Wie es immer kommt, wenn ich versuche, meinen Mitmenschen die Zeit bei mir zu versüßen. Meine Großzügigkeit wird gnadenlos ausgenutzt. Vermutlich nicht einmal absichtlich und böswillig sowieso nicht. Aber am Ergebnis ändert das nichts. Tagelang beschäftigen tut das mein Hirn. Mein Puls rast, statt 60-70 in Ruhe kann ich...

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