Page views: 1,153 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...
Pageviews: 1,020 Some of the things mentioned 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...
Page views: 1,228 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...
Page views: 1,476 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 conditions 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...
Pageviews: 1,128 Awesome shit. You'd be forgiven for thinking there's 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)...
Page views: 1,228 Balance of today's first day of my August of horror: and not once did I have to ask for it. Nothing lasts forever, but it's a good start.
Pageviews: 1,049 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...
Page impressions: 1,146 Supplementary budget for yesterday: all sorts of different types 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...
Pageviews: 1,099 Spoiler: Better sit down before you read on. When you've recovered from the initial shock, share my post, tag anyone who can help me, comment and join in the discussion... My name is Patrick, I'm 42 years old, I was diagnosed with ALS five years ago and still claim to be living life to the full and enjoying it....
