would like to get the copy of a poem on PSP. One line state "appears to be not quite there", not exact words.

[Schatzel]

My husband had PSP and passed on in 2005. Our grandson is doing a school project on PSP and would like that poem and any other info you can send us

[NannaB]

I have just "googled" PSP poem and a couple came up. Perhaps one is what you are looking for.

I hope you find it. Great subject for a school project.

Best wishes

Nanna B

[NannaB]

I've just read the poems and am in tears like I was the first time I read them.

Nanna B

[Charliesyoungest]

I just googled the PSP poems also...sad but true. Great idea for a school project!

[hooperhyde]

Hi

I wrote a poem recently but I'm not sure it's the one you're looking for...

'Hello, Gorgeous', you uttered two words.

Two words which were music to my ears.

It's been so many weeks since I heard your voice.

So many weeks since I saw you smile.

I can't remember the last time I heard you laugh.

Those two words were spoken to Eleanor Rose.

Eleanor Rose, who was born 9 weeks ago.

Eleanor Rose is our first daughter.

Eleanor Rose, your first grandchild.

Ellie smiled sweetly right at you today,

She's so unaware of the torment you are in.

Oblivious of the grief we have all endured.

Her love for her grandma seems entirely unconditional,

Regardless of the appearance of your outer shell.

You're probably never going to cuddle her properly.

You're probably not going to see her grow up.

You might not hear her utter her first words.

You're unlikely to see her get married, have kids.

But she loves you, her grandma, absolutely, unconditionally.

It's as if she knows who you are.

'Mum, do you want to hold Ellie?' I asked you.

'No' you whisper softly back.

Is it because your heart breaks when you try?

I hate that you can't gather the words to explain.

But I don't question you, I just accept.

I don't want to force you or add to your sorrow.

I just show you Ellie and 'hello gorgeous' comes back.

Everyday I wonder what you're thinking.

Do you know what's happening to you?

Are you screaming inside 'I'm still here!'

'Let me speak, dress, eat, I can do it myself.’

'I can hear you, you know, I'm sitting right here'.

In my heart I hope you don't know,

That you don't really understand.

Most people would see a distressed

Contorted, trapped woman inside.

But I know that you are my mum.

A grandma, a wife and a sister, an aunt and a friend.

I hope that you are in a nice place,

Far away from this bleakness you are in,

A place where you're happy, calm and relaxed.

You grasp things so tightly, a finger, a tissue,

Whatever is there, in front of you.

Why do you hold on so intently, I wonder

‘I'm sorry Mum' although I'm not sure what for.

Sorry I couldn't save you from this illness.

Sorry for all of the things I did when younger,

that I should have already said I was sorry for.

I love you Mum, I wish you knew,

I wish I had spoken those three words more.

You'll never know how much my heart breaks,

every time I say it and there's no response from you.

You can't stand any longer,

or really sit in chair,

you spend hours in bed,

being tended by others.

Sometimes I wish you would just let go.

Then I feel guilty for wishing you away.

But you don't need to suffer any longer.

We're all settled and able to cope.

Each day I see you, suffer, in pain,

A little bit more of my heart breaks away.

Eleanor Rose is two years old now,

You made it to her second birthday.

She had a party, you came in your wheelchair,

You couldn't eat any cake but I did see you smile,

A little bit more of my heart broke again.

It's been 6 years since your diagnosis

You were given twelve months after just 2.

You fought for everything you believed in

Made so many milestones that we didn’t think you would.

You saw me marry the love of my life

You saw the birth of your first grandchild.

You lived in the home that dad would retire in

and saw your son settle down, fall in love.

But now its time to say Goodbye Mum, we know you're at peace now.

Goodbye Mum, you passed last night.

Goodbye Mum, you left so gracefully.

Goodnight Mum, close your eyes, sleep tight.

[NannaB in reply to hooperhyde]

This beautiful poem of yours is one that comes up if you google PSP poem. It's one I cried over again last night. It's something we can all relate to. Thank you for sharing it with us all.

Nanna B

[hooperhyde in reply to NannaB]

Oh thanks Nanna B I didn't realise it came up in google search! And anything to help people through this horrible journey!

[jimandsharynp]

I think that this forum would be a fantastic resource for your grandson. There are all aspects of the disease discussed here. Jimbo

[jillannf6]

hi

a lovely poem 2 remember your loved one by

lol JIll

a hug and xxx