Hi everyone, I haven't written on here for some time as I have struggled to care for my husband. Les is now receiving palliative care in hospital after yet another serious bout of pneumonia. He was in a care home since August 2016 and they know nothing of PSP. PSP is so cruel and it is now taking my husband of 41 years away from me. I am not blaming the home for Les having PSP but the hospital gave him a cough assist 6 weeks ago and it has been on a hook in his room instead of being used each morning to help clear some of the mucous from his chest. Although exasperated by this I have put it to one side for now as I need to be with Les. I am struggling so much right now and knowing this is the end is heart breaking.
I wish you all the best in your own battle with this disease and send love to everyone.