Life begins and hope keeps you going ....

[nomansland]

life begins along with a whole lot of HOPE dateing,marriage,job,children,grandchilgren.....then psp shows its ugly head,it ,over time, kills hope....what is there once that happens,Rollie

[goldcap]

Unconditional love. Acceptance. Living in the moment. Amazing yourself with your courage and tenaciousness and yes finally learning to let go.

[coyle51]

Well said gold cap. There will also be memories of the good times. Someone on this site suggested there could be positives in the nightmare that is PSP. I thought long and hard, and for me it was the relationship and time spent with my brother. I take comfort, right or wrong, that we are doing our best for our mum. I hang on to those positives and whilst I am not sure they constitute hope, it does help. Best wishes

coyle51

[jzygirl]

Where there is life there is hope. I was once told by a bhudist that today is called the present because its a gift to do with as we see fit. Jane xx

[Heady]

The above comments are beautiful, so I won't say anymore. Except just send you loads and loads of love and hugs.

Lots of love

Heady

[quickgel]

Hello Rollie, you sound at a very low ebb.

From your list I would think 'what there is' are a whole lot of memories of a life fully lived.

We all know just how wretched PSP is, some of us as carers and, far worse, those with it but 'emotionally' it can't take from us any more than we allow. It never took my wife's courage or dignity neither did it take my admiration and love for her.

I can find nothing positive to say about PSP from the suffers aspect but as a carer I gained strengthened friendships that last to this day. Life certainly isn't as I'd hoped or imagined it would be, how could it after being one of a couple for fifty years? but it's not 'hopeless'.

Emotional and physical exhaustion is miserable but it can be helped with a good nights rest and the support of friends, I hope you manage both.

Best wishes, Jerry.

[easterncedar]

It's not just psp. If you're lucky enough to live a long life you will likely lose all the things you spent your youth accumulating, or took for granted: family, friends, home, health, ability. Psp at least grants us the long goodbye. I've seen enough folks die young, some with shocking suddenness and some with agonizing disease, to be mindful of that - at least sometimes. I am often overwhelmed by grief and exhaustion and simple aggravation; psp deals a measure of heartbreak every day. I feel for you, Rollie. Love and peace, Easterncedar

[MaddyS]

Hello Rollie

You are in a very dark corner at the moment. I can't say more than has already been said by the others in this forum. Rollie I'm thinking of you and hope you can see the sun shine at the end of the tunnel. Take care, maddy

[puyella]

hi there rollie your a bit morbid today arent you mate I had a wonderful day yesterday I had all the family here as it was fathers day yesterday mate there was our own kids and gran kids and great gran kids there was 20 of us in total we had a real good time of it all the little ones played well together no arguing or fighting

and on my birthday in February we have another edition coming along so lifes pretty good and im lucky enough to have seen them all \\ bugger the psp mate thats nothing just a nuisance I refuse to give in to it ==== for now anyway matey im still breathing but shuffling around like some old boy and im only 78 I expect you wondered who this was from didnt you mate\\\\ how is madelane

doing !!! tell her from me to hang in there for all of us with psp I realize that life is not to bright for you mate at the moment but it will get better they have got to find a cure sometime or other very soon so lets leave it at that and go back to hope not despair a mate

ex peter jones not quite sure how I got the name of puyella see yer mate take care and madelane of course that goes without saying

[nomansland]

To all you good people,thank-you for your replies,I do agree it is a long goodbye the problem is after 2 years of no speech it,s not a real nice goodbye,anyway,thanks again,Rollie

[MaddyS in reply to nomansland]

Hi Rollie

Yes the no speach is a real stinker. Hubby has had no speach for about a year. Nothing we tried to give him some help with communication has worked. He has hardly any sight left and use of fingers is not great. We try to communicate somehow, one squeeze of the hand for yes, no squeeze for no. Two squeezes does not work. Together with all the other PSP symptoms, life for him is pretty boring. I take him out in his wheelchair on dry days. He likes that, although he can not hold his head up enough to see whatever he is still able to see.

We need to take one day at the time and look what is positive right now; the sun is shining, neighbours are chatting to us, children/grandchildren/friends are visiting, the puréed food does not taste too bad today. Forget about the things he can't have any more.

So we all on this forum solder on and hope for a treatment or cure.

Take care. Maddy

[nomansland in reply to MaddyS]

thank-you Madeline,Rollie

[jillannf6]

HI ROLLIE AND MADELINE

HOW R U BOTH TODAY/

I KNOW I TMUST BE SO DIFFICULT LIVING WIHT THSI PSP BUT TRY TO REALISE THAT MADELINE IS STILL WITH YOU AND IS V MUCH THE SAME PERSON INSIDE WHO YOU MARRIED ALL THOSE YEARS AGO

THE PICTURES ON THE WEBSITE ARE WONDERFUL OF U BOHT

I HAV E A PARTNER HWO I LIVE IWTH AND HAVE KNOWN FOR 5/6 YEAR S -EVEN I AM NOT SURE HOW LONG- BUT IT IS GOOD THAT YOUR IWFE AND YOURSELF JHA VE A LONG HISTORY WITH EACH OTHER

MY HUSBAND IS NOW A GOOD FRIEND (NOT SO AT THE TIME FO ORU DIVORCE) BUT HE IS HIS OWN PERSON NOW AND BETTER FOR IT AND I AM TOO= WE CAN BOTH WALK AWYA FROM ANHY PROBLEMS WHEN WE WANT TO

SUCH AS ,MY DAD'S DEATH ON SATURDAY = MY PARTNER GOT ON WIHT HIM V= WELL BUT MY EX HUSBAND DID NOT; NEITHER MY BROTHER NOR I HAVE HAD CHILDREN SO THERE WAS NO BIG FAMLY OT SEE MY DAD ON HIS LAST DAYS HERE ON EARTH

JUST THE TWO FO US

BUT IT WAS GOOD FOR ME TO SEE MY BROTHER AND TO REALISE THA THE WOUDL DO ALLT HE PRACTICAL STUFF B4 AND AFTER THE FUNERAL

SPRRY TO BE MORBID ABOUT FUNERALS BUT THAT IS WHER E I AM AT AT THE MOMENT

LOL JILL

HUG SAND XXXXX OT YOU AND M

[puyella]

hi rollie and madelane how are you both ok I hope mate well the sun is shining here t comes right into my bedroom and wakes me up after just dropping off for a few minutes having that sunshine just makes my day my friend it will be a good day to sit on the patio and have a beer wanna join me mate its a great day out there I hope that madelane is behaving herself and not giving you to much trouble or as little as possible anyway mate I will raise my glass to you and madelane as the day progresses and will hope for better things for you and your wife to enjoy now my friend take care see yer peter jones queensland Australia psp sufferer alias puyeller