Just spent a wonderful couple of days in my other home. You know the one I mean, the where everyone running around in different colored PJ's and the machines constantly ringing alarm bells, that no one takes any notice of, yes A&E!
S rushed in on Sunday afternoon. We were in the car, just going out, when he pointed to himself, thinking he wanted to go to the toilet, I turned the car around and we went home. Sat him on the loo, then these spasms started. Every couple of minutes, he was in complete distress. Tried to ask questions, to find out what was wrong, got nowhere, except the end of his penis was upsetting him. In the end dialled 111, they had to get someone to phone me back,. In the meantime, the spasms were getting worse, so I just dialled 999.
They all thought it was his bowels, due to the recent history. X-rays showed no blockage, just completely full. All blood tests came back normal, eventually someone examined him and said UTI. But oh the pain he was in, every two minutes he would spasm. He has AF, so his heartrate was going off the dial, one second 175, the next 40! Thankfully his blood pressure stayed stable, but I was frightened that his heart was going to stop at any moment. I have never known S to be really needy, but he was clinging to me, so frightened and distressed. It must have be dreadful for him, everytime they asked about pain, he indicated the was NO pain! Thankfully, nobody believed him.
My sister was with me through out, she knows PSP is rare, but she was totally shocked how only one person, out of the many we saw, had heard of PSP and even he didn't know anything about it. Had them all reading the PSPA leaflets! (Thank you PSPA!!!)
They have filled him up with antibiotics, came home yesterday. Both now completely knackered.
The good thing (I hope) is the nurse at the hospital has spoken to the DN's about proper bowel management for S, that they HAVE to provide! She was NOT impressed with them, in fact deliberately kept the DN on the line, for 5 minutes, while she asked me some questions, "to let her stew!" Nurses words not mine! I haven't heard from them yet, still I suppose it will take a week for the information to get from that person's head, to where it needs to get!!!
Anyway S seems to have survived this trauma without any obvious set backs yet. With the letter of complaint, that had already been sent, now this, you never know, our GP and DN's might actually do what they are paid to do, look after the sick and needy!!!
Lots of love
Heady
New to PSP and to this site-not so new to PSP symptoms
Psp hereditary 
Hi-Dad diagnosed with PSP
