Hi Ian,
Hope you are OK. We are still in research mode here ... Want a plan before we share news with grown up children.
We have a 26 year old son who has to hear following grandad's death from PCs in June aged 76 (diagnosed 72) that dad is now diagnosed at 53.
Just sent MRI report to TOOKAD people in Israel. This phase III clinic trial as reported in December 2016 led to remission in half the patients. All tested had single side disease however so my husbands bilateral is 'not optimal' but they are looking at his MRI report. They consider Gleadon 6 and some Gleadon 3+4
Hope you are coping... It is not want anybody wants to hear.
Regards
Clare