PSP Association
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View from the "other" side

My husband Charles has had PSP for five years. This weekend he wrote this. I thought it might give some insight into what it's like on the "other" side.

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"I am ill. I have PSP. Progressive Supranuclear Palsy. It is a Neurological illness. It involves not being able to speak and I am “locked in.” It is very difficult.

I don’t know what I am doing half the time.

You have this illness 24/7.

My vision is screwy and my balance is so bad that I need help.

Help takes the form of a wheelchair. I have had it for 5 years and still I am alive.

Would that it were different.

Each day is a drag. Each moment lasts a lifetime, literally.

To say that I am sick of it is an understatement. It is sick of me living every day."

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Makes my heart ache to see and read it but was encouraged to share with all of you.

Cuttercat

25 Replies
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It's tough reading it , your heart must hurt so much. Try to be strong. This diease is so exhausting .

Dee

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Maybe my husband wrote something like this but he could not see and kept going over his own writing with more writing.This helps remind me I really don't want him back as he was at the end.Rest in Peace Des.Love to all still in the struggle,Px

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Feel broken to pieces and I completely understand and think about him all the time what it must be like for HIM!!!!

THIS PSP MAKES SO ANGRY poor all PSP/CBD disease and still not knownof to billions on this planet.

Wish there was a cure TODAY !!!!!

Wish I could read dad what you have written cause it would let him know he's not alone but don't think that would be good !!!Don't know ???

Have to be so careful and tactful about life !!!! So hard .oh and just words I suppose oh I don't know!

Honestly wish I had this PSP and not my Dad . Poor all of you and all of our dear loved ones.

Crying must go xxxxxx

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I often wonder what my mother thinks day in day out Stuck in the same room same 4 walls 24/7. She says she doesn't get bored bless her, but it must be so frustrating not been able to walk or to stand at the window to look at her garden, we take picture's of day to day thing's just to give her insight into what is going on in our lives. The carers are brilliant with her bringing their lives/families into imams home it's like having an extended family. They even come early some nights if they have time to have a cuppa with her and to watch Emmerdale.

But who knows what is going through her mind I often see her thinking staring I ask her penny for her thoughts but she never tells

Is there anyone else with psp can give us any of their thoughts?

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Incredibly heartbreaking Cuttercat, so sad to read! Thank you for sharing. Huge huge hugs and love to you both x

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I am in tears reading Charles's note.. so many suffering alongside in so many countries .. including my amazing Dad who is now a shadow of his former self..

May a cure be found soon

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So sad reading this as well, to be locked in your own body, makes you realise what they are feeling. Yvonne xx.

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My husband just hated being locked in. So tragic. He was so kind to us and he tried to be cheerful, of course I pretended to be cheerful too

It is so cruel what this disease does to the body and the mind

All we could do was just love him

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So sad. I'm sure Chris feels trapped too.

love, Jean x

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Hi it so tough to be a carer ,my wife of 63 years is 2 years into psp journey, it seems the wife i known died 2 years ago and l fight to stay positive and give her the care she deserves, l just pray that God will take her before it get unbearable. to watch the one you love change in front of your eyes is the ultimate challenge, i hope your husband doesn't have to suffer to much before the end of the journey.

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It is such a horrible horrible illness, and hopefully someday there will come a cure.

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Heartbreaking Cuttercat, I know Margaret felt like this but she was unable to express it as she lost her ability to write/type before speech taken by the dreadful condition. PSP progresses differently for everyone. I found I could only hug her when frustration with my inability to get what she wanted right caused upset. I tried to talk to her daily but often I felt only that I was talking at her not with her.

Please give a hug from me and tell him to have courage and not give up trying to express himself as the black days will depress you both.

Best wishes Tim

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Very sad words indeed and I'm sure my Kim would of expressed the same words if she could of too. It's like being imprisoned in your own body and occasionally being tortured. Which more important why "us wardens" have to always put ourselves in their shoes and be as kind and gentle to them, even when we're to the point of exhaustion. Why? Because we love them so very much. Enjoy all the communications you can get, verbal or written, while you can.

Much love.

Ketchupman

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Thank you for sharing this - as communication gets harder, we start forgetting their voice, but they're still there!! I hate to wish for you and Charles that this may end soon, but you know how my dad went gently in his sleep, some mercy after all those years. Thinking of you and Charles and all PSP sufferers.

Dikke knuffel,

Lieve xxx

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Cuttercut it makes me so sad to read it. How very true it is though? I know Garry didn't want to live anymore. He just wanted it to be over with. When you lose the ability to speak it is so very difficult and frustrating. Sometimes we want our loved ones to stay for our sakes? However when Garry died I felt relief for him even though I have never felt so alone. I would love to be able to talk to him again but even if he came back for a chat I would be talking to myself? That's the utter sadness of PSP and other neurological diseases.

Give Charles a big hug from me and one to you too Cuttercut. Tell him thanks for sharing that with us. Maybe it might make some people think again and be less selfish and allow their loved ones to go? It is the hardest thing in the world but so important. Nobody wants to be alone but sadly when you give your heart to someone that is bound to be the outcome?

Marie x

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My heart gos out to you and your husband, my husband Charles has PSP for 12 years and is still here. Everyday it gets worse. It is a horrible illness. Have courage we are all hear for each other.

Marge

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12 years is a lifetime. I'm so sorry. I hope my Charles can go peacefully. I don't know how you (we) do it.

Cuttercat

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Well Done Cuttercat!!! Hope Charles is pleased with the response.

Lots of love

Anne

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This is so heart breaking. Thank you for sharing this. It will help us all remember that because we do not see any response it does not mean that our loved ones do not love us. They may feel but not be able to show it. Just keep loving them until it is over.God help us all. I needed to read this.

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So, so heart breaking. The only solace I had with my mum was the thought that she wasn't aware of what was happening to her. I hope that this is still the case, but now cannot be sure. My heart goes out to you and everyone that comes in contact with PSP.

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That post shows the horrible reality of PSP and all that it throws at the sufferer. I'm pretty sure this is how my husband, Ben, feels but is unable to write or put into words, the days must seem endless as they lay or sit biding the time away. Oh how I wish I could do something to help, all I can do is make life as comfortable as possible for him in whatever way I can so make life just a wee bit easier for him. This wretched disease does its worst and makes their lives almost unbarable, I hate it and all the misery it inflicts.

Love and hugs

Kate xxx

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Wow! This is how I imagine my husband feels. My heart bleeds for those inflicted with this horrendous disease and for their loved ones. It's a very sad reality. Thank you for sharing.

Joan

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Very brave of you to share this.

'Every moment lasts a lifetime' that is very sad.

I believe that if my Dad were to write something it would be exactly this.

XxxX

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Oh bless you Cuttercat. It is so enlightening to hear a view from an actual sufferer.......to really know what it's like. It is also heartbreaking to hear Charles speak openly about how he is feeling and the torment he is suffering. Love and hugs coming your way to you both. Thank you so much for sharing xxx

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I know that I am facing being in your position. My husband is newly diagnosed.

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