Hello for the first time yesterday my Charles had trouble he kept saying he wasn't going to make it to the end of the day. He has had PSP for 10 years is this what happens at the end stages? He has been very weak and can't walk good, but if there was a clinical trial to try that was promising we would go to the ends of the earth to keep him with us.
Thank you
Margaret
Hello Margaret ! What a wonderful photo , obviously taken at a very special time ! I take it that Charles isn't smiling due to the typical result of weakened facial muscles associated with PSP, or the camera caught him out of sync with the others ! Are you in the USA, England, or ? My sister , (67 yo) has had PSP approx. 9 years and we're in NY on LI . A's neurologist recently told us about some encouraging breakthroughs re: drugs that show promise, but followed that by stating what we know already ; which is that the whole process takes typically 10 years to transform the possibility into reality.Though we're hopeful that a treatment will be discovered , no miracle seems to be in sight. So I assist A. in any way possible and keep my spirits up by knowing that there are many others , both PSP afflicted and their spouses, loved ones, family members, and friends who are all over the world doing the best that they can under very challenging circumstances !! That doesn't change the heart rending reality of PSP, but it does help me keep things more in perspective.
It sounds as if your Charles has some really loving and caring people around him. How fortunate despite all of the trials he is experiencing.
Best wishes to you all !
Elise, sister and caregiver
