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!
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
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.
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
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.
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
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.
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.
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.
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.
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