That really sucks, I'm sorry to hear that. I guess I've been lucky and have just had really good caregivers so far. In the circumstances you describe though it

That really sucks, I'm sorry to hear that. I guess I've been lucky and have just had really good caregivers so far. In the circumstances you describe though it sounds like you need to do your best to read and evaluate the source material and make the best decisions you can. I wish you the best. One thing that's worked out for me is nerding out with my doctors though. If they can't then I find a new one. So far for me this has just been with respect to lifting weights and the various consequences thereof, but I imagine the principle generalizes. I'm getting to the age where my body is going to start climbing the s-curve of decay so I hope I'm right. And I do have reason to hope. Someone very important to me has a rare genetic disorder. It took over a decade, but that person found a doctor who actually cared and nerded out over it and followed the research. Those caregivers are out there, so don't give up looking for them. If you happen to be fortunate enough to live in California your odds of finding such a person within driving distance are quite good.