My father was diagnosed with PSP in 2016 .. which was post a few backward falls .. I had noticed a few changes besides balance issues like not blinking for long .. I had myself diagnosed the PSP with Google search before the neurologist confirmed the same !
I understood that there was little one could do about the progression but what was in my hands was give the necessary support and care as the condition progressed . Besides the physical care that was needed , we would mentally engage with him with games and talks that he could make sense of . What a challenging 8 year journey it has been for him and us as a family. Last 3 plus years he was on peg tube formula milk feed as his ability to swallow diminished. Around 2.5 weeks we noticed abdominal distension and took him to the hospital. Medication didn’t make it better .. and the gastro informed that the gut isn’t able to process any more and the motility has been compromised. So was referred to palliative guidance. Now we have been home for a week and he’s getting only minimal water with gut medication. He’s in the last phase of life .. could be days or weeks . A very tough time and praying it’s a comfortable and peaceful transition for him . He’s taught us how love is the best medicine.