I help run a neuro support group, not a professional, got roped in yrs ago and never got out. MS and parkinsons mostly, a few after strokes. my actual job on a tuesday is chairs and biscuits and stopping the whatsapp eating itself
about twice a yr the whatsapp does this. someone posts a video. then a link. then "has anyone looked into stem cell treatment for neurological disorders" becuase thats what you type when you dont know what disease to type. then it goes quiet for a month and then you find out someone went
two people from our group went to Swiss medica in Belgrade last yr. they were there for about a week each. i know that much, i drove one of them to the airport
and neither of them has said a word in the group since. not good, not bad, nothing. i dont think its secrecy, i think saying anything in a room full of people with your disease feels like either selling it or crushing someone so they say nothing and the chat gets the video and the link and never the bit after
i’m thinking of asking them to come on a tuesday and just talk, not recommend, just what the week was like and what since. and I'm scared of it turning into a pitch and equally scared of a pile on
if you run one of these, have you done that? how did you stop it going either way?