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.
Written by
Tokki
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That's a shame. I thought it was after a ladybird or something similar, or like me when going on a country walk, always lagging behind as she noticed all the bugs, lizards, snakes etc.
Welcome to both of you missed your first post. I am probably going to teach gran to suck eggs but once you have the help, finances and home adaptations sorted do not forget to get some good memories while you both can, get photos of both of you together and Bugs looking happy, these will be helpful in the dark future to come. If you had a bucket list you both wanted, do it, spend any cash on yourselves now before the care costs swallow you resources.
Sorry to repeat things you have heard but treasure her while she is fully with you PSP robs both of you of your future so enjoy the present.
Our neurologist who diagnosed Chris said very firmly. It is a progressive disease. I asked how long and he said most about ten years from first symptoms but a great variation. I said ,as Chris was 80 we were more concerned about quality of life. He didn't give platitudes but said they would give us support and keep him comfortable. He still sees us every 8 months and is pleased with Chris' slow progression.
We went the month after diagnosis on pre-arranged holiday to Costa Rica and built up more memories.
I agree with nanna B that worrying about the future is pointless as we can't change it. So I TRY not to worry. But I do rant !!
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My Baby!!!
How do other carers deal with the "difficult" days?
