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PSP Association
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Stress stress stress

Been thinking tonight about bloody psp, now I am sitting here feeling stressed out, I was clearing out some old paper work, brought back so many memories, old photos, old paper work, made me remember life before psp, things we were going to do, places we Wanted to see, but psp has taken it all away, it has left a man that can’t talk hardly, on the rare occasion he will try and talk, getting frustrated because we can’t understand what he is saying. Also having to do things for George that I never in my life thought I would have to do. George not being able to interact with the grandchildren, when we went to our daughters house yesterday for a family dinner, my daughter did a speech because our eldest granddaughter is going to university, George was hold our granddaughters hand, I felt so sad, I know if he was ok he would of been so proud, our first grandchild to go to university, I now he is proud, but he is locked in a body that cannot show any emotions, I cry inside myself for him bloody psp the most horrible illness ever. Why oh why do they suffer like this, horrible horrible illness. I just want to sit and talk to him about all the worry’s I have be able to share them with him, so unfair, sorry everyone bad couple of weeks and today brought it all home to me. Yvonne xxxxx

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Bless your heart Yvonne, rant away darling!!

I ranted to you earlier and you said nothing!!

You must share (especially with me, lol) I HATE to think of you going through this, but sadly where Psp is concerned I think it’s normal....

Psp disgustingly robs the patient of bloody everything, it’s so so spiteful!!

One thing I’d say is good, is that after looking through things you were able to remember pre Psp, I can’t, don’t think I ever will.....

Hold those memories and hold them close to your heart!!

Love you sooooo much

Keep on fighting, there’s no other way x

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Amanda you are so amazing I love you always there with the right words. Xxxx

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Nothing for you but hugs, Yvonne. I know how you feel. Love, Sarah

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Thank you Sarah hugs greatly excepted. How are you lovely lady xxxx

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Yvonne, I hate this disease also. I’m just glad you have this forum to vent your anguish and pain rather than hold it iin. Everyone on on this forum feels and understands your pain, but you have just described it better than I could.

Comfort and strength,

Bobby

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Thank you bobby laying in bed listening to george breathing xxxx

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I know it is hard now, but cherish being able to listen to him breath. I miss that.

Bobby

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Bobby I am, I can feel your pain, big hug coming your way. Yvonne xxxx

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So awful, Yvonne - and so deeply unfair:-(

What did our lovely mates do to deserve such a fate?

Yes, if you need to smash some plates, do it here! We get it.

Hugs to you XXX

Anne G.

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Anne I might just do that, bloody awful evening xxxx

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I know how you feel! It is like living with a complete different person. I often cry myself to sleep as well. Hang in there! Be proud of your grandkids and try to enjoy them if you can.

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Oh I love my grandchildren would be lost without them xxxx

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I feel what your going through ,every word,I can remember one thing my husband said to me when he was first diagnosed, I won’t have to wear nappies will I ,god bless him xx

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Tears your heart apart doesn't it, I think this is the sort of situation we all dread and the humiliation of some of the symptoms of PSP and their consequences are just awful.

Love Kate xx

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Sad isn’t it xxxx

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So sad xxxx

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How wonderful that your grandchildren most likely have memories of him well. My great sorrow is that ours are only 3 and 4 years old and they have only ever known grandad as a scary invalid. Breaks my heart if I dwell on it for too long. At least my daughter has happy memories I know she will share with them one day.

Juliet.

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My two little grandsons were also too young to understand that it was an illness making their 'Grumps' a bit strange and scary. We did everything we could to encourage them to get close to him, he loved it, but they were always anxious to get off of his lap after a customary kiss and cuddle. Heartbreaking.

Love Kate xxx

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Katie same here makes me sad, when they were here today when George was transferred, I asked one of them to bring wheelchair and the other the rota stand, they did it no problem, Joshua the older on pushed the rota stand right up to George’s feet, I am sure he would of helped with the transfer, brought a tear to my eye. Yvonne xxx.

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It's just too tragic isn't it Yvonne. Sending lots of love. Kate xxx

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Juliet this is one of the saddest things with the grandchildren xxxx

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Big hug for you Yvonne.

No words can make it better. It's torture for all of you. We all know how it is.

Love Jean xx

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Oh Jean I hope you are ok, did try to private message you, not sure if you received it. Sending you a massive hug, wish I could do it in person xxxxx

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I replied to your message. It's not always easy to find the way through the system.

Big hug back.

Love Jean xx

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Dear lovely lady, everything about psp is pants, I so glad you have a loving family around you, I long for my family but they are all at least 150miles away so that can't happen. It used to break my heart to see Ben try to hug the little grandsons, he loved having them close to him but they were too young to really understand he couldn't be like a 'normal' grandad. There are no words I can do to make things better but just to let you know we all understand exactly what you are feeling, the helplessness and loss. Be sure we are there in spirit to support you Yvonne, you certainly need it. Much love to you both. Kate xxx

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Ok Kate thank you, sorry I am so late getting back to you, time just flies away. Yes I am very lucky the children are so near, you are a free agent now, go and see them and enjoy your grandchildren beautiful lady. Yvonne xxxx

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PSP = Pants, So Pants

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Dear Yvonne

I echo all your sentiments the cruelness of PSP is almost unimaginable. At least your grand daughter had him there for her celebration. This will be special for her.

I took our son up on the train to uni yesterday 3rd year running we have done it together and every year we see dads and sons unloading a car and laughing together - all those things he misses out on!

Strange how things catch you out I was sorting clothes out couple of weeks ago and took bags to charity shops of jeans, cords, chinos which my hubby will never wear ago - pull up pants and pull up 👖- is our life now.

Sending a massive hug to you and lots of love hope today is a better day

Take care

Tippy xxxxxx

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Tippy it’s a cruel illness everyone suffers, they can’t express their joy about anything sad thing is they would be so proud of everything that is going on. Grandsons here today the little one made George smile, before they came he was so miserable, the older on had a spelling test today and he got 8 out of 8 George had a smile on his face. Big hugs. Yvonne xx.

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Yvonne that is so lovely a smile is so precious in our house sounds the same in yours. It melts away a tiny bit of the sadness and stress knowing they can still experience a little pleasure.

Clever grandson too getting top marks for his spelling test and making his Grandpa 😊. One for the memory bank.

Hope you have a good nights sleep

Sending lots of love and a big hug

Tippy

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Thank you a smile is the best thing ever not many lately, have to get the boys here more often xxx

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It is such a hard, sad experience for all concerned isn’t it Yvonne. My heart goes out to you. What you said about having to do things that you never thought you’d have to do brought back many memories. We both had a chuckle one day when I was performing a particularly gross action and told Colin they never mentioned this in our pre marriage class we had to attend. It’s so good you can still get George into your daughter’s house so he can attend family gatherings. He must have felt so proud holding your granddaughter’s hand so even in this dark time happy memories can still be made. I have many happy memories of positive things that happened in the dark days and now I think about those more than the awful things which are gradually fading. I had a little cry when my daughter in law told me she was pregnant as Colin loved his grandsons

and it made me sad to think he won’t be there for that first cuddle. He was a very positive person though and never once said why me. In the early days several folk said, “Why you? You are such a kind, gentle man who has never done any harm to anyone”, and his response was always the same, “Why not me. If bad things didn’t happen, we would never appreciate the good things”. I think him saying that made me see things differently focusing on the many good things that happened in the midst of all the horror.

It was lovely seeing you last week Yvonne and although my life has now changed, I think of you often.

Sending you a great big hug and praying you have the emotional and physical strength to keep going and many more good moments to make happy memories to last you a life time.

💐 🍷 XxxX

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Bev it was so lovely seeing you, you are a lovely person so caring. So happy you are going to be. Granny again. Thank you for your wise words. Yvonne xxx.

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Agree totally,horrible ilness through and through. X

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Oh Yvonne, I wish I could do something to help ease your pain, but we all know there is nothing that helps. Cherish this memory of George holding his grandaughter's hand, it was his way of communicating how proud he is of her. Make sure she is fully aware of this.

You can still talk to George, even if it is one sided. Show him these old photos, get him to remember that there was a time when he could show you all, that he loved you and reassure him that you will never forget that. Sometimes, cry on the outside as well. There is nothing wrong with that, let him comfort you. I occassionally broke down on Steve, put my head on his lap, whilst he stroked my head. I now think I should have done this a lot more, for both our sakes. It would certainly have shown Steve, that he was still needed and wanted and he still had a positive role to play in my life. Despite all the horrors we both had to endure.

Steve now has two grandchildren he has never met. One from his daughter, she was pregnant when he died, but he did manage to feel him kicking. My daughter, he never even knew that she wanted children, much less get a cuddle. That is really hurting at the moment. I know Steve's blood does not run through James, but his outlook on life definelty will do, my daughter will not let her son grow up without Steve's influence. That is all our legacies, to provide and nurture the next generations. George has already done this and will continue to do so forever. PSP can never take this away from our loved ones.

Sending huge hug and much love

Lots of love

Anne

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Oh Anne I am sitting here crying reading your post, you are so positive, would of given up without you, thank you for your kind words, just feeling so low are clearing out the paper work, it had to be done I was looking for important papers. Big hug to you Anne and thank you for being there. Xxxxx

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I must admit, I was crying writing it!

Paperwork is always a killer. Normally end up throwing all my toys out of the Pram. Certain documents always go missing, when I need them. No matter how careful I am to file them correctly. Reckon Steve hides them, for a laugh! So I end up screaming at his picture, funnily enough they are put back, exactly where I thought they should be. So either I am right or going mental. (No rude replies needed thank you, the rest of you!!!)

You know we are all here for you and completely understand.

Lots of love

Anne

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Thank you Anne you made me smile this time. Yvonne xxxx

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Dear Yvonne

I totally understand your stress levels have peaked. PSP is so incredibly vile it just gradually takes someone we love a bit at a time.

I believe George is still fully aware of his first granddaughter going to university but PSP has made it impossible for him to show his pride.

Sadly I lost Les at the end of November last year. He did his level best to communicate with us. We used a board that could be wiped clean and Les wrote on that. I photographed what he had written with my mobile and enlarged the writing. He became so frustrated if I could not read what he had written. I did manage some words. The main one was "I am dying, look after your mum". He wrote that to our son. This was a week before he left me.

This is another vile aspect of PSP. We just found that way of communication. I don't know if each PSP sufferer is able to do this. It showed that Les was totally aware of the situation.

Yvonne I hope you feel a little less stressed today. I know how you are feeling. The frustration and effort at times is draining us emotionally, but the person we love with all our heart can be frustrated equally.

I am sending love and hugs to both you and George.

Love Pat xx (1 kiss each)

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Oh Pat so sad isn’t it, George has already spoke to the children quite a while ago, just hate to see him like this, bloody hate psp. Yes feeling sad though but one day at a time xxxxx hope you are going ok Pat? Xxxx big hug coming your way xxxxx

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Thanks for the hug Yvonne I am low on hugs now. That is one thing he always gave.

Les died on Wednesday 29 November but on the Monday night he suddenly hugged my head so hard to his chest. I was staying at the hospital with him and we slept in his hospital bed, it is something I will always be greatful for. I believe that hug was in some way Les thanking me for being there and I believe he knew he was coming to the end. Thank you PSP for taking the man I loved.

It's a hateful, vile and cruel disease and I try not to think too much about the way it takes lives little by little and then rushes as if to say "I hold the cards".

I can only feel incredibly sad knowing this is doing it's worst for you and George. I wish I could take the pain away for you.

Just love the time you are with George, I'm sure you do. Sometimes life gets in the way and stress comes with it.

Lots of love to you both

Pat xx

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Pat thank you lovely lady and big hug for you, bloody psp hateful illness xx.

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Oh Yvonne I so feel for you. This horrible illness is so cruel, its tentacles reach out and affect the whole family. There is no positive side to PSP (maybe apart from bringing all the dear folk on this site together !) and I can tell you that even after P`s death it is still having a lasting effect on my life - the guilt I still feel - maybe I could have done more, been more tolerant and patient etc etc …… Be glad you still have George and talk about the good times while you can.

xx

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Yes I am lucky that he is still here, but unlucky for him that he is suffering and it’s hard to watch. How are you doing? Hard both sides xxxx big hug for you xxxx

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You are quite entitled to rant. The whole thing is horrid and if we did not rant I think we would explode. Sending you a virtual 'rant catcher' and a big hug. Love AliBee xxx

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Thank you would off been lost without you all. Hugs to you all xxxxx

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It's difficult for George, sometimes I often think what's further ahead of me. I don't dwell on it though - just trying to make a difference anyway I can.

Tim xxxx

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Thank you Tim you are an inspiration to us all xxxx

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Oh Honey,

I know, I know. But stay strong and remember we are here for you. The aftermath is worse than being in it. I still am angry at what we had to endure but today is (would have been) our 25th anniversary and I'm so sad.

Keep the memories and kiss him today. I wish I could kiss Charles. Anything is better than nothing. Your love is there.

Cuttercat

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Cuttercat wishing you a very happy anniversary, I am sure Charles is with you, Yvonne xxxxx

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I know that feeling , things are like that for me right now, I feel I've been in the house along time and it's only been a few days.all I've done the last 3 weeks is make cups of tea and wash up and try to keep the house as tidy ....its hard work having an extention built....in my next live I would like to be a pampered pooch.....Brenda xxx

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Yes so true sending you a massive hugxxxx

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Oh Yvonne,

Vent away here and never apologise for doing so, as I know we all can relate and emphasise with what you’re going through.

Love and hugs,

Mx

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Thank you xxxx

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Yvonnne so sorry to hear about your stress. What can I say, just - I'm thinking of you and sending lots of hugs. Love Maddy xx

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Thank you maddy xxxx

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Hi Yvonneandgeorge!

There are still many interesting moments that will please he even if he can not express it.

With PSP you have to learn to dance under the rain and snow.

Hug.

Luis

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Feels like PSP is a hurricane at times !!!

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Luis well said thank you xxxx

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Tippy it’s blowing hard here xxxx

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Hi Yvonne

Sorry that your feeling down and it’s such a terrible thing that we all watch and have these emotions going through our heads

I’ve just cleared all paperwork and got photos out and it wasn’t till I saw past photos of Archie and saw the difference we enjoyed with the photos he was a straight nutter but then he was different the last 2 years .I hope your stress levels have gone down some for you and just to say you are doing a fantastic job for George I honestly think in his own way he knows

I’ve still Archie’s ashes at home and I can tell you I go in room and talk to him and carry on with him and I hear him say ‘silly bas ard ‘ is on one again lol

Sending you massive hugs to you both and please take care of yourself too

Sue xx

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Sue you made me smile, xx.

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You let it all out to us girl, because there is no one else, you don't want to tell your family cause their hurting too, we have all experienced this frustration and can understand how your feeling, your right it's bloody awful, and so unfair, if you don't let it out sometimes you won't cope, so blast off, then find something nice for you as a treat. I was told this week by the specialist to, "stop being a carer let people help and be a wife, I wish that was possible, so sad to think that will never be again, thank God we have love,

Thinking of you, bless you, and scream from the roof tops if it helps, you deserve it.

Servena03 xxx

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Thank you so much what would we do without each other on here? Xxxx

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Oh Yvonne I know this is terrible my brother is just like your George everyday is something new with this PSP, I had a meltdown a few days ago, I always say WHY, hang in there, with many hugs . Nettie

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Nettie I keep saying to George fight this horrible illness, but I think he was just as depressed as me xxxx can’t blame him xx.

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Oh how my heart breaks for you Yvonne. There are no words! Hugs!

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Thank you sad times x

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Dear Yvonne and George,

Good feelings. See one more day the sun, feel the touch of a loved one, a warm skin, the parfum of a rose.

Someone to help me with the music that I like. When we are aware of ourselves, we are living.

I know very well the meaning of a never ending angst.

Try to stop from time to time, take away your mind from a bitter reality, take the time to have a coffe with a friend, make something you like.

There is nothing superior to being alive. this is your oportunity, do not loose your time.

All the best

Elena F.

PS: We need some Kevin's comments...!

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Thank you Elena, meeting my granddaughter tomorrow before she goes to university xxxx

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Hope you have a little fun with her, laughter helps me keep sane!!!

Xxxx

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This is a ghastly disease.All the retirement dreams gone and helping them find any joy in life seems impossible.Yesterday Duncan thought he'd like to stop the clonAzepam at bedtime..It is only. 2.5mils but enough that we don't have nocturnal scary falling.I need to sleep.He thinks that is why he is so tired all day but I have explained about fatigue being a huge problem.He doesn't even believe what our doctor's tell him.I guess this is part of the cognitive decline.He worked in a managerial role until 4 years ago when his work said he wasn't functioning well and had to retire .He was 62.I knew then he was ill but he blamed me for believing it.He was such a.lovely ,lovinghusband before then.Changes had been going on since he was 60.Now he is 67 and needs help with absolutely everything.No wonder he resents me sometimes.He was the capable one and big decision maker.We were a good team.Sometimes we still are.I ache for the old easy companionship.So I completely get it Yvonne.Love to all.

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You have described George here so much like what we went through, he said I told the doctor to say he had psp, he was really horrible to me at the beginning, nearly destroyed us, not having any sleep is a killer, I went to bed last night after 12.30 couldn’t sleep, up-and down all night then up at 6 o’clock, oh dear sending you a big hug. Yvonne xxxx

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I was thinking about you and George,It's been a long heartbreaking journey and it never let's up.Try not to let PSP take you both.

Keep on ranting or whatever it takes.

Massive (((hugs))) from across the pond.

Dee

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Thank you Dee feel like I need the biggest hug ever xxxx

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Dear Yvonne

Hope this will be a better week with a little more 💤 😴 & whilst I am being optimistic maybe a calmer George too!!

Sending lots of love

Tippy

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Tippy it’s been horrible george has been so agitated, lots of sleepless nights, very hard to cope with DN have been wonderful, but feel really stressed xxxx hope you are keeping well, how’s things your end xxxx thank you for thinking about me xxxxx big hugs xxxxx

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