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PSP Association
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Of joy and love

PSP, hooded stranger who rhymes with nought.

I once did rhyme with life.

I swam the sea, the water sun sparkled, as did I.

My arms were strong, my legs too, my face was a book

To be read of love, joy, sadness and anger too.

Now see me!

Struggling to drink, still able to think.

My arms and legs stolen by you.

Trapped by you, hooded stranger.

You cannot take me all… you gruesome fool.

I have kisses and hugs and much love too.

And when I pass, you won't have me still... No.

I will live on for the things I did and the love and joy I gave and got.

Go! Stalk the night unwanted thing, love will see me through.

51 Replies
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Kevin...no words...only tears! Beautiful

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And love will see us all through, love to you Kevin

Xx

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I have dreaded this day for you. You have been such a devoted husband. All of our hearts are broken for you.

xoDorie

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Hi Dorie

No, Liz is still good.

Sorry if I gave the wrong message.

I am touched by your response. Thank you.

I was so moved by recent losses here and my struggles with Liz, I thought to write these words of anger and love.

PSP reaches out to break hearts and, it seems to me, love is our first and final recourse.

xxx

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Oh, I am so sorry. I assumed (never do it!) that that was your way of letting us know. Forgive me.

Continue that enviable devotion! Enjoy every moment!

xoDorie

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And I certainly hope I didn’t send the wrong message to others😩

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Hi Dorie

We all do it... :)

Hugs

xx

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Beautiful and sad, lovely

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Beautiful. Nancyxxx

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So beautiful Kevin, you made me cry, you are such a wonderful man Kevin. Yvonne xxx.

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😢 ❤️ XxxX

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Kevin what a great poem. Full of anger but full of defiance too. Can I share it?

Marie x

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Great description Marie!....

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Hi Marie

Of course you can.

Yes, anger, defiance and a faith in love.

It's where I was at last night. Liz is so angry with this illness.

Then I came home and read the posts of loved ones passed on.

I hate this illness.

Warmly

Kevin

xxx

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Kevin that is something we all have in common? All of these neurological conditions push you to the limit. However as we say everyone is different and that's true.

It's almost as though it makes it as confusing as possible for everyone. The fact that a Neurologist can't tell you what the symptoms will be, or how long you have left because it is a different journey for everyone makes it worse. Everyone and their loved ones go on their own journey?

Take care of yourself. Never knew you were such a writer!

Love to you and Liz.

Marie x x

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Sometimes when there's so much grief (as there has been - a great wave of it these last few days..) art is the only response. You articulate it beautifully Kevin :-)

I loved Marie's description of the anger and defiance in your words - Not letting the darkness win!

Hugs and Thanks to you, our dear talented friend XXX

Anne G.

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Just so. Thanks. Hugs.

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Tears in my eyes too, Kevin.

Kia kaha! Stay strong in your love for each other. Your love will outlast the dreadful PSP and remain for always - no matter what!

Hugs to you both!

Jen XXX XXX

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Hi Jen

I looked up Kia kaha - great words!

Wishing you the same. :)

Warmly

Kevin

xx

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A very touching a pertinent poem Kevin, great description of this terrible disease creeping up on its victims and sucking the lifeblood out of them bit by bit. Love is the only thing left in the end and I hope Ben felt that until his last dying breath. I hate this monster called PSP.

K xxx

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"Love will see me through"--yes! Lovely.

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Oh Kevin how beautiful.

Love is supreme but PSP is a terrible trial. When Chris was diagnosed we vowed that no matter what it wouldn't break us. Our Doctor, who has since retired, wished us all the luck in the world. He was right we have to remain strong but it is the greatest trial of our 54 years together.

All we can do is keep on, keeping on.

With love and prayers for you and everyone caring for someone with PSP/CBD

AnneandChris

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Heart wrenching 😓 x

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Love this!

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Hi Amanda

Yes isn't it!

That was me flaming about it!

Hey, is 8th June still on?

Are you going to remind us all?

Hugs

Kevin

xxx

Oh, I just did ;)

Is it on?

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Just about sums it up for CBD as well. Love the fighting spirit it evokes and gives something to hang on to when wanting to give up. Thankyou.

Steaming with frustration

Jayne😤

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Hi Jayne

Yes, for CBD too... PSP's ugly cousin!

Exasperating, yes, it can drive me nuts!

Wishing you a good day.

Warmly

Kevin

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Thank you Kevin. PSP does not stand a chance of winning your soul with that sort of fighting attitude and all the love you have round you. Love Ali B

PS. I am taking the Cannabis Oil for me and it is helping.

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Hi AliBee1

So pleased CBD oil is helping. Liz asks for it and she never asks for meds unless she has to. I keep forgetting to take it... Must remember, at least at the end of a high stress day.

Warmly

Kevin

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Thankyou Kevin ..... now tears are falling. Love Jxx

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Hi J

It makes me tearful too.

I didn't write it so much as it just poured out from my heart after a bad day with Liz.

I hope you are getting some sort of better days now, though it is still early days I expect.

Warmly

Kevin

xx

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Sending big hug and much love

Lots of love

Anne

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Hi Anne

Thanks

There is so much damned pain with these illnesses and then afterwards, more pain.

I hope you are doing OK.

Hugs

Kevin

xx

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hi kev

i am always amazed when others express he same thoughts as i have

i look back jusr three years and it always shocks me how much i have lost physically and yet my thinking brain is better than ever--just drafted another paper on quantum gtavity---

it would be easier if i knew how much longer i have as someone else posted

all best

jim

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Hi Jim

Fantastic that you are still writing about Q. Physics. I expect there is a beauty in it it for you. I admire the folk like Physics people, mathematicians and composers who see the world like that.

I was reading an article on neuroscience in the Guardian the other day. This neuroscientist (Oxford) said that a huge amount of our thinking is all but preconditioned. So I expect it is not so surprising that we have broadly similar responses to PSP/CBD.

Well, that time question and how much of it is an interesting one. I suppose one might see it as a Damaclean sword, or one might choose to see it as a gift of insight. None of us know how much sand is yet to run for us and yet most of us behave as if it is forever. My neighbour, a strong fit guy, developed prostate cancer and it is untreatable. I wonder how much sand is left in my timer?

My brain is a little more humble than yours. Doing lesser things I finally cracked making a really great rye bread... If I may I shall call it 'Moffat's Quantum loaf'. After all Schrödinger did have a cat. ;)

Wishing you the best

In admiration

Kevin

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Kev

you can check my publications at

researchgate.net/profile/Ja...

or by googling james moffat (mathematician) for a wikipedia overview :))

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Hi Jim

Thanks for the link. The work you have done and your career path are jaw dropping.

Strength to you.

Keep writing!

Warmly

Kevin

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Kevin you continue to inspire us! Janet

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Meaningful poem Kevin. Thanks 💞

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Kevin... Simply beautiful, may I share these words.

Tim

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Hi Tim

Of course you can.

I'm rather chuffed that you think them good enough.

I have done an edit so you might want to revisit the edited version at the top of the thread.

I think of you sometimes and your extraordinary take on this illness and the way you manage your life with it.

I take my hat off to you!

Warmly

Kevin

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Hi Kevin, you put it all so well into words. You are an inspiration to us all. Thank you . Sending hugs and lost of love to you and Liz.

Esther(Teeker)xx

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Thank you Esther. I will tell Liz too. She likes me to read posts to her from the forum.

I hope all is going as well as it might for you.

Warmly

Kevin

xx

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Love reading your posts, seems to me your quite a lady killer....Brenda. .

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Brenda!

You gave me such a surprise with that comment.

I think the only Ladies I kill these days are from my poor driving! :)

Wishing you the best of this horrible illness.

Warmly

Kevin

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Your words are so true. Glad to hear Liz is still good. Nanny857xx

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So touching. You have a beautiful way with words. May I share it with my friends and family? .It may help them better understand the way this horrible disease impacts our lives.

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Hi Karyn

Thank you.

And of course you can share them.

I have re-edited them at the top of the thread. It was rather dashed off from the heart and needed altering a little.

Most of the people I know, including family, just don't get the cruelty and suffering this illness brings. I suppose unless they see it it close up they won't. I think my family don't want the added pain.

Warmly

Kevin

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Kevin, I was going to disagree with you , until I got to the final line . I believe most of our family and friends do their best. Seeing Dan can be heartbreaking . He appears such a contrast to what and who he truly is. Others have their own struggles too and feel helpless with what this disease has done. Also there is often pain when they try so hard and get little response and there is none. They try.

A beautiful writing like yours helps put feelings into words. The feelings can be the hardest to share. I try so hard to be upbeat, doing what I must do to get by each day.

With PSP there is always enough pain to go around.

Thanks

Karyn

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Big hug Kevin.

Luis

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Beautiful words Kevin, I can imagine Liz as strong determined woman as I read.

Though thank goodness I had a tissue to hand too!!

Hugs to you both

Love Tippy

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