Actually you should be beaten for that
Previous issues
Week 20: MDK assessor
Week 19: Care service
No news is goog news, I guess. Quite a boring week, one would almost be inclined to say. Hard to believe. How nice.
And so I started to think about how to bring everything up to date, adapt texts, create new photos. It's not all that trivial when your eyes are the only thing you can still move.
My Care Guide. I have pretty much transferred version 1 from the previous print format to the web. Now it's a matter of updating the content. The basic requirements have changed quite a lot. That is, after all, the essence of ALS. The lowest common denominator, if you will. Fun fact, I'm writing about that too, the MDK has its own opinion. I still remember today how my disbelief grew with every paragraph of my initial report. The more I read and reflected on it at the time, the more often the question popped into my head whether I should rather cry or laugh. My personal highlight - quote -:
"no change relevant to care is to be expected in the medium term".
Yes, I have this in writing from the MDK. In black and white, the entire assessment of my health insurance company, i.e. which care costs it will cover, is based solely on this report. In this particular case, the AOK didn't have to pay anything. Precisely because the expert was of the opinion that my ALS would not change anything in the medium term. I don't want to give too much away. But it will be good. I simply have an exaggerated sense of justice that wants to be satisfied. If I can still play Robin Hood and help you, I'll be even happier. Because it wasn't my idea. At some point I gave a few tips in an ALS forum on how to free oneself from the negative spiral of the MDK. You don't want to know how many enquiries I received about this by PN with individual questions and the request whether I would send my letter. Of course I would, I have. The more sufferers show that ALS two destroys the body, but our brain is better than ever, the more likely it is that something will change in the system.
As amusing as it may be in retrospect, not everyone is suited to the role of having to defend themselves against an overpowering opponent. And again, this is a single letter that decides whether a care service is approved or you have to continue to tremble every time you go to the toilet, whether you can make it back into the wheelchair without outside help. Or not. Time doesn't pass quickly when you're lying on the square-metre designer tiles from Italy that adorn the floor of your bathroom with your trousers down, crippled and exhausted. And you're waiting for the help you summoned with the Apple Watch.
For this reason, this statement - not expecting any change - deserves a place in my personal Hit list. I'll put this in "only" 6th place, because for the time being, health impairments are not the direct result, but we have a legal and effective remedy, as we will see. It is simply an indictment of the stupid MDK. And it's annoying, stressful and therefore exactly what you should avoid as an ALS patient. In this respect, sit down, six. Insufficient verdict.
Apart from this - and this is even a historical thing - there was not much else new to complain about these days. Enough small things, to be sure. But nothing that would have made it into the top ten. No news is good news.
- Cover me up, strip me completely naked and "clean" me in bed with surface disinfection, then soap me up from head to toe. And leave me to freeze for two hours until they have finished the laundry. Read more? You can find it here: Basic care
- To tell the surprise visitor, who enters the flat with his own key on Saturday morning, one of the most implausible old wives' tales I have ever heard. Of course, he didn't drink the can of Jackie Cola. Some completely retarded person threw it in the rubbish and now the whole flat smells of it. He took it out of the bin to rinse it out. More about that? You can find it here: The insensitive sick person.
- "I have to have a little whisky from you now." (he said, ignoring my dimenti and emptying the bottle until the end of service) Read more? You can find it here: Inventory Olé
- Leaving me in the shit for over an hour, because night duty comes shortly and I'm so stressed that my own coffee is more important. I would have loved to use the time to clean myself up, because my three friends who are visiting are having dinner in the dining room. I really don't need to have my ass wiped when my friends are sitting next to me. Read more? You can find it here: Shift, change.
- Finding a syringe filled with cloudy liquid by the sink and wanting to give it to me via the PEG without knowing whether it is a tablet, cleaning agent or something else.
- The MDK assessor comes to the conclusion that no care-relevant issues are to be expected with my ALS. I have this in writing.
- "With the powder you call ice, you need yes a straw to drink that". (was about the crushed ice I bought for my carers for the premium brand drinks and alcoholic beverages I also bought for my carers).
- "I never took anything home, just empty bottles for crafting." (apart from the fact that empty bottles are also my property, no one drank from them except you, you moron) More on this? You can find it here: Inventory Olé
- Going out onto the balcony with a coffee and a cigarette and throwing it over to me as I walk by, saying he's sorry, I'll get my coffee in a minute. But he's so keen on a cigarette right now. Read more? You can find it here: Shift, change.
- They just don't believe me when I say that I haven't had a bowel movement yet. No, the nurse has to convince herself. More about this? You can find it here: Don't hurt my feelings.
You can find all the old issues here (entire Archive):