Thank you for all the kind thoughts and my own thoughts are still with Baggs. 
A little update from me. DS has seen his specialist who has shone a chink of light into the darkness, coming up with a treatment plan to prevent the disease from progressing, even though it can’t be cured. DS could then move onto a maintenance schedule to keep it under control, possibly for years, allowing him to carry on with normal life. If the meds become ineffective, there are other schedules that can be used.
DS, and indeed all of us, feel that he’s been given a life raft and we hope that the future is not as frightening a place as it was yesterday.
Xxx