Bristol friends & family

My apologies to all that we never made it to Bristol. Unfortunately I had to make the hard decision not to attend due to almost a week of practically no sleep. I was not in a fit state to drive and, even though I considered it, wasn't in the right frame of mind to cope with public transport and my hubby. Sorry if its seems I was being selfish, I really missed not coming and meeting people but that's the way things seem to go these days, I arrange something and either I am not well or 'sir' will decide he doesn't want to do whatever is arranged - at the last minute..... holding my anger is getting a bit difficult but I have to remind myself, constantly, that he doesn't realise he is being awkward or really meaning to be.

11 Replies

  • Hi, sorry you weren't able to make it. It was an interesting day. Unfortunately not a lot of time was given, to be able to mix with anyone else. S takes sooooo long to eat, that even the lunch break was rushed for us! So didn't get to talk to anyone, apart from the people I already know from our local group. Maybe next time!

    We nearly didn't make it, S decided it was going to be a "slow" day, I give him several hours to get going in the morning, but I think I needed to be by 5.00 on Saturday. So I ended up trying to speed him up, of course it ended in tears, two falls! One, just as we were going out the door. I know I keep asking the question, but "what part of DONT MOVE does he not understand!!!!!" Another scar on his head. Hey ho!

    Lots of love


  • Try saying keep still instead of don't move. I found C focussed on the last word I said eg move. I tried to give a positive statement rather than negative. It didn't work every time but there was definitely an improvement.


  • I try and remember to get him to tell me what he is meant to do, if I pop out. I.e. Don't move, stay put etc. That is working, but yes I will try to change my wording, when I sit him down on the bed for a brief moment!!!

    Lots of love


  • Ha Ha NannaB great minds think alike. For some time I have been aware that C grabs the last thing I say. So if asked ”Do you want A or B?" It is always B. No doubt this is caused by slowdown in mental ability to process but can be a useful thing to be aware of.

  • I have found I can no longer give M a either or option as he will just say Yes or No and I still don't know what he wants. If its regarding food I take the options in and say which? It can be a little daunting having to ask him a question these days as he often says Yes for No and vice versa so I end up doing the 'wrong' thing and he starts his shouting tantrum. So again I have had to learn as Nanna says to put a positive statement and ask the question still but followed by a confirmation that I understand him, that way he doesn't get to know he is doing the wrong thing, especially as he doesn't realise his error x

  • Did you make this point on the feedback sheet? It could be that rather than leave the social mixing to lunchtime and coffee breaks, a period could be allocated specifically for just that purpose. In order that the less gregarious didn't get left in the cold it would require to be loosely structured, perhaps along the lines of 'speed dating', requiring families to move on after a set maximum period. It would need a bit of thinking about to get the most out of the time and any ideas would be welcome.

    Your request for 'layman understandable' notes on the research contribution has been passed on to the PSPA and will keep you posted in due course.

    Regards Jerry.

  • No! Never thought about until replying to Gilljan. Although when I got home, was sad that I didn't have time to find out if there was anyone from this site. Apart from your lovely self, of course!!!!

    Lots of love


  • I too would like to attend the local PSP gathering near Sevenoaks but Ben won't hear of it, think he is too scared to meet people further down the road with the disease and know that we will face in the future. I hope that you are feeling less tired and stressed for the next gathering it must help with the sense of isolation. Xx

  • Thanks Katie, feeling a little more refreshed as hubby surprised me by agreeing to wear lightweight incontinence pants in bed at night! Basically had to be really tough and warn him that unless I got sleep then I would have trouble looking after him and more chance of having a stupid accident as I was so 'out on my feet' and he realised he had to help me out. He gets up 3-4 times an hour in case needs to go loo, so with the pants I said that unless he started to actually go he wouldn't need to get up. Result in as much that he only gets up a couple of times now. Still tired this morning but it is going to take time to catch up on sleep as I can't during the day as he won't leave me alone when I am in another room, he hates being in a room on his own even with the dog around! Hope you get to a gathering as soon as poss.

    Malc saw a lady at the daycentre that is really well down the road with PSP - she's in a wheelchair, can't speak or hold her head up, however she understands everything around her and communicates by squeezing hands, she is also peg fed now. Thought hubby would baulk at seeing her but she is so much further down the road that I think he just didn't associate her with his PSP xx

  • I can't remember if you have mentioned it before but have you considered trying a convene? It is not suitable for everyone but when C got used to it, it became a life saver. Apologies if you have already said he can't use them.


  • Thks NannaB but that's a wont do area at the moment and things are working fairly well again now so will tread that path more carefully if have to down line

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