Hi Everyone, many thanks for the encouraging words. Since going to a meeting and joining this forum I am at last not feeling so isolated.
I think the way information is conveyed at time of diagnosis seems to be universally poor. The first time Bugs heard the word "degenerative" was at a meeting recently with a new Neurologist but even then no explanation of the term was offered.. When I first discussed this illness with the GP it was suggested that lifespan could be measured in years "just look at Stephen Hawking - he should have been dead years ago". Strange, I thought he had a very different illness and also a brain that still worked.
Anyway, no more rants at the moment. Back to more reading about this.
By the way, Bugs is a nickname given by her father. He said that when she was little, she was a bu***r. Still seems appropriate.
Regards to all.