Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,384
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
and money were no object what would you want to have done on this journey?
I am talking about the whole picture.
Obviously we all want the life experiences we said we will do someday (our so-called bucket list)
But how would you have set up your living situation? would you have moved (or did you move)? did you modify your house? what are the things you did and are happy with? what do you wish you had/could do?
What legal things did you wish you had addressed? beyond wills poa guardianship for minor children healthcare proxy living will advanced directives and social security representative payee? am I missing anything in that list?
What equipment do you have or wish for and when do you wish you had it?
What can you do to help your pals stay as much themselves as they progress?
I have been reading a lot and it seems like there are amazing communication tools including some way to record your pals voice ahead of losing it in a program that can then be used by your pals to "speak" in their own voice...
I know this is long and addresses many issues. if anyone has a thought on any one of them please chime in even with a word or two!
ps money is of course limited as it is for all of us. think of this a giant wishlist (what you would put after your first wish -a full and instant cure!
Thank you all
love
Nikki
I am talking about the whole picture.
Obviously we all want the life experiences we said we will do someday (our so-called bucket list)
But how would you have set up your living situation? would you have moved (or did you move)? did you modify your house? what are the things you did and are happy with? what do you wish you had/could do?
What legal things did you wish you had addressed? beyond wills poa guardianship for minor children healthcare proxy living will advanced directives and social security representative payee? am I missing anything in that list?
What equipment do you have or wish for and when do you wish you had it?
What can you do to help your pals stay as much themselves as they progress?
I have been reading a lot and it seems like there are amazing communication tools including some way to record your pals voice ahead of losing it in a program that can then be used by your pals to "speak" in their own voice...
I know this is long and addresses many issues. if anyone has a thought on any one of them please chime in even with a word or two!
ps money is of course limited as it is for all of us. think of this a giant wishlist (what you would put after your first wish -a full and instant cure!
Thank you all
love
Nikki