I’m so sorry you are suffering this much right now. You said in the original post that you had a bad crash but managed to improve somewhat over the next couple of years. If you were able to do that once, perhaps you will be able to do that again and see improvements over the next months and years.
There is real hope for our community now which, reading through the forum, strikes me as materially different to how the situation was a decade ago when you first crashed. We have world class scientists actually interested in developing a real understanding of our condition and the PFS Network have assurances of a working relationship with them- it doesn’t sound like our community will be left in the dark for years in the same way as previous investigations. You are a young man still in your 30s, I believe a treatment can be available in a timeframe that will allow you to enjoy decades of a happy healthy life on the other side.
Please try and stay strong and just do whatever is necessary to get yourself through each day. We are all in this together and I believe we will all get out of this together with some more time.