A little explanation about this forum

Dear All

I feel it necessary to explain a few things:

Why are we all here? For patients who have Psp and for their carers and loved ones! For the dear Psp patients we have lost and for their dear loved ones left behind.

We discuss anything from the weather, to how we are all feeling, what helps and what doesn't. We give and accept advice from the family we have all met on here! We shout, we scream, we share!!

Sometimes we write things that are just simply a subject we wish to discuss, it doesn't always mean that 'something' will happen

This is a place of sanctuary and one that I couldn't have coped without in the last 18/20 months! This is a place you will make great friends, for life!

Take this forum for what it is, helpful and beyond......

Much love to you all x

50 Replies

  • All what you have written are well said . I may not write much but I love coming on here and reading and find out things that I done know 👏👏👏

    Sue x

  • Aww thank you Sue! How are you doing? X

  • Hiya

    Not bad still waiting for someone to pick archie up

    I find it frustrating now as 3 weeks ago he could of come home but still stuck in there

    Hope mum and dad are doing ok

    Sue x

  • Are the carers sorted Sue? You must be soooo stressed as must Archie be? Yeah all good this end, thank you, Mum making a good slow recovery and Dad seems to be settling well, putting on weight and has a lil sparkle in his eyes that I've not seen for years! Really rather amazing! X

  • Brilliant news about your parents

    No because archie has been in just short of 2 mths the care company couldn't pick him up again so now we have to wait to see who can

    Sue x

  • And my darling have they said how long it's gonna take? Time for a large rocket to be placed up someone's backside, maybe??!! X

  • Not a word just they keep ringing to see who can take him on .

    I voice my opinions but I'm getting like a broken record .

    I will have to troll the internet to see if I can rush it somehow

    Sue x

  • Definitely Sue definitely x

  • I'm so sorry Sue. What is it they are trying to do with your husband ; send him to a rehab facility? or trying to send him home? I am sure you have told us I have no memory .....It's not so much dementia that's taking my mind; just something I have never a good portion of...unfortunately getting less of it as I get more age....

    Anyway hang in there...call CHC or something

    No one should feel as if a prisoner!


  • Morning avb

    Archie's waiting to come home

    Apparently they have people who deal with finding a package for people with chc funding .i think it because his 1st call is hr and half and hr for the 3 other calls per day and they carnt slot him in .

    So I just don't know what's happening we are both sick of it

    Sue x

  • I'm so happy he is settling in. Xx

  • Aww thx Vron

    How's your cold/flu? X

  • It's getting better thanks Amanda! Xx

  • 👏👏 thank goodness I'm pleased x

  • I feel it is a place of warmth and love.......

    In the short time I have been a member it has helped me so much.

    Long may it continue.

  • Bless you Bargiepat! How are you doing? X

  • Yes all going well.........

    I will soon be going on the annual family holiday to Cornwall where we rent a large cliff top house...... the walk down to the beach will be challenging but I will have a son and 2 son-in-laws to help me.

    I will take a picture of the path and share it with everyone .......



  • Aww that sounds simply wonderful! We will look forward to the pictures x

  • And me Bargiepat

    I was completely at sea before coming here.

  • Well said Amanda!

    Hugs to you

    Can I give your Mum a hug too? She is so stalwart brave and loving. A beacon to others on a dark night.

    And definitely a warm hello to the wonderful Dad you have introduced to us.



  • Aww now I'm blushing K! X

  • Amanda now I don't believe you are blushing! 😁. Come on, you the woman who is so with it I am in awe! Your post was spot on though. It really is a place where we come to for help, guidance or sometimes just to see how our friends are getting on? Or sometimes to see the lovely photos that people send. Georgepa really lifted me up today with his lovely photo's. I noticed I wasn't the only one who felt that way.

    I have no idea how to put a photo on! Lucky I can post. I think the first few weeks I just read, then I had to ask how to post! Think it was Heady who told me. Never even noticed the post button! I suppose I was too uptight to notice anything.

    I am so delighted your Dad seems happy and your Mum is making good progress. How could she not with you looking after her? I feel like I know them both and you too after these past stressful months.

    Take care.

    Love and hugs.

    Marie x

  • Aww what a beautiful reply Marie, thank you! It really is quite incredible how we've all come together through this forum!! I like to think we all look after each other through the good and bad times! Hugs x

  • Amanda

    I think we do you know. If someone can help they will? Boy do people need help as they go through this or as their carers do? Hope you are not as worn out as you were?

    Take good care of yourself.

    Marie x

  • I'm getting sleep now Marie plus rest in the day, ie more than I was, so my mojo is returning so to speak x

  • Glad about that. I am struggling to sleep and that's bad!! Used to be OK so not sure why I am like this.

    Marie x

  • i agr e ek and liz

    loil jill


  • Aww I feel like we are all in a similar situation and all with very real worries and I feel like we are getting to know each other very well? It does feel like a safe haven for me to share and listen to you all and I would be totally lost without you all x

  • Bless you Martina!! This is a very cool place to be and I wonder if I'll ever leave....x

  • Not without permission Amanda!! ☺

    Marie x

  • Martina

    You will never be without us. As long vas you need us we will be here. Have just signed the lot of them up! ☺. Seriously we are here for each other and sometimes we manage to have the answer to a question? It can be a small issue but something which nevertheless is dragging you down? Almost always someone has been there already.

    How are you? Are you coping?

    Love from Marie x

  • Hi Amanda

    Kevin reads all of your posts to me.

    You and your Mum are wonderful and lovely.

    No one could ask for more than what you too have done.

    With admiration and heartfelt sadness at recent things happening to you all regards your Dad and your Mums illness.

    You and your Mum are great.




    (typed for me by Kevin)

  • Aww bless you Liz, you and Kevin are such a pair of darlings! Good to hear from you and I hope your keeping out of trouble! 😆 X

  • Much love Amanda you are a wonderful person xx.

  • As are you dear Yvonne x

  • It is and well said xx

  • Thx York x

  • So true. I find it a sanctuary. It felt so desolate before I found this site.

    Value the warmth and humour.

    So glad to hear your dad is doing well. That will be the best boost for your mother - and assuage your guilt ?

    love Jean x

  • Indeed Jean indeed! X

  • Hi Amanda, I agree with everything you say. Dread to think how I would have survived the last four years without all you good folk, to pick me up, dust me off and put me back on the right track.

    Can I use this as a sales pitch??? The PSPA support groups ( UK only, sorry guys) do exactly the same, only you actually get to meet people face to face. At first they can be daunting, seeing someone well into their PSP journey, is frightening. The help I got from ours, was immense. Even now, I had lunch with four ex carers yesterday. I know several of you meet regularly with each other, thanks to these groups. If you haven't been, please contact the PSPA and find out where your nearest group meets. Ours is sadly down to one active couple, we need more to keep it going. It's so sad to think that there are people out there who need the support, but for one reason or another, don't go. Steve, who I can assure you, never joined a group in his life, loved going. He felt totally at ease, knowing everyone in the room understood and EXACTLY had heard of PSP.

    I know I have said this before, but a huge heartfelt thanks to everyone that has helped me and Steve on our PSP journey, who made it that tiniest bit more bearable, to those who made me realise that losing the plot every five minutes was normal. All the crazy things that PSP does to a couple, is just part of the illness, not a conspiracy theory, out to get me. Even now, to the ones that are supporting me, on my onward journey. THANK YOU!

    Love you guys!

    Lots of love


  • Aww love ya right back Heady!! As always wise words and advice from you!! And by the way, no thanks required, you have been and continue to be a invaluable help to us all!! X

  • Just one big family (:

  • Absolutely correct!! X

  • It's a year ago this week that I joined the family thank you all xx

  • Bless you Elaine! How's things? X

  • Things have changed fast as you know with this illness now have carers coming to help 3 times a day lasy year he could walk do small things now he cant walk wash ect no two days are the same how are you doing xx

  • Aww Elaine, it's sooo bloody hard and quite unbelievable how quickly things progress! I get exactly what your saying because it reminds me of my Dad! Do you have chc? I'm ok thank you, sending hugs x

  • Yes have chc in place only just after the second go that in it's self is just part of the fight with this illness getting the pen pushers to see pass there questions not every person with pap ect is the same but there we go and don't get me started on the 3 pad a day crap lol big hugs back hun xx

  • Pleased you have chc! Do you get respite hours? If not you should be!! Oh the 3 pads a day,,.....oh my life, what moron thought that lil gem up?! X

  • I read every day, but I don't always comment.

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