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 discuss with...
My name is Patrick, I am 42 years old, was diagnosed with ALS five years ago and still claim to be in the middle of life and enjoying it. I also strive to be the most pleasant ALS patient one could wish for. I don't want to be a burden to anyone. I think that works well. At least all the carers in my current team want to continue to be there for me - be it as a mini-job or even part- and full-time - should I ever change care providers. Which brings me to the topic...
Why this post when everything is going so well? Well, the politically correct answer is something like this: The new management of my current care service has overlooked the fact that services cannot be covered in August. Instead of talking to me early, they have preferred to terminate my contract now - quote - at the end of the current month, in accordance with the contract. I have exactly 13 days left to secure my supply from August. Fortunately, I love challenges. Challenge accepted ?
You will hardly believe it. I had actually already found an intensive care service that wanted to take over my 1:1 care with home ventilation seamlessly from 1 August. But now the relocation of a patient whose team I should have taken over is delayed. We can't start until September. So my search starts again...
That's where you come in. Who knows, sometimes you just need a bit of luck, and statistically speaking, I should have it by now. Can you help me find a care service or a carer who can somehow help me get through August? Partial care would also help enormously.
If we find an out-of-hospital intensive care service that can and wants to guarantee my 1:1 care in the long term - for life - that would be the jackpot par excellence. As much as I would love to switch to my own planned care service, any further training of a new team would be a torture for someone like me who is paralysed from the neck down and can hardly speak. And let's be honest, there must be a reliable care service that has capacity available and enjoys working with me as much as my current carers. I just have to find him.
You have questions? Then let me know and I'll answer them quickly. As quickly as possible via PC eye control.
I would be happy to hear from you in any case. Even if it's a rejection. At least I know where I stand, and that's only fair to you.
In the appendix you will find a small package insert about myself and the most important medical facts.
In joyful anticipation,
many greetings
Patrick
