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You know your prognosis must be bad if your somewhat estranged ex-husband offers to put you in contact with one of his friends who is suffering from a progressive form of the condition you may have. I'm not even positive that it's the same disease, but it's certainly starting to look that way. I've been doing a lot of research on my own to hold me over until my follow-up appointment with a nurse practitioner at my current neurologist's office. As much as I hate to admit it, artificially intelligent chatbots have been helping me analyze my lab results and see a bigger picture. I don't think I'm ready to speak deeply with anyone about this yet. I've never been comfortable sharing my personal issues with a complete stranger. It's one of the reasons I never found therapy useful — along with the fact that I’m far too self-aware.🎗

writhe

Everyone has different ways to deal with their issues. Sounds like he still cares about you on a humane level, but you don't have to come in contact with him or his friend to bring him comfort if it doesn't help you. I wish you the best outcome possible and lots of courage.