Hi my names Miriam and I'm new here . - PSP Association

PSP Association

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Hi my names Miriam and I'm new here .

5 Replies

I'm very nervous to write on this psp site and its has taken me much courage .

My Dad who is the dearest man who has ever been in my life and the nicest man on this planet I'm not joking has PSP .The most traumatic distressing condition that I in my world sorry (selfishly), have ever experienced someone you love with your heart and soul go through watch them hopelessly helpless and so painfully go through.

He's been through everything someone with a terminal illness could possibly go through and more and worse I'm sorry I'm expressing my despair at my hatred for PSP.

A long and slow painful death .

He had had 24/7 care at his home where he had lived with all of us a family for the last 40 odd years .He now under tragic and circumstances out of my mums and sisters control because they did all they could until so sadly my mum became very very poorly and went into hospital and now luckily back home is slowly recovering and needing care too.

I've have a family to look after I only live and hour away .However I suffer with extreme anxiety and bipolar and ocd I am very disabled with my condition I hate it .

I in the last year have crashed my car 3 times as such a mess and many physical problems just had a major operation and can not and can never get my dad out my head .

I'm 44 years old but feel like a 4 year old daughter always with my dad .he was and will always be my hero .

I've seen him as much as I possibly can I've researched into psp in great depth. I knew afew years b4 he was diagnosed what he had as I did masses amount of research so it did not come as a shock however completely devastated.

I've watched him deteriorate the last few years and I'm sad beyond words .My condition also has greatly been affected and i have deteriated too to the point of being in hospital suicidal.

I have sooooo many happy memoriesof me and my dad and him healthy and a very happy man .which I hold of too deeply and these memories make me smile so happy and proud .

He's now in a care home and I don't like it at all I ring him every day I can't see him for sometime now as I've just undergone quite a biggy operation and need rest and can't drive (Maybe that's lucky). I've never seeked counselling or any kind of help or talked with anyone or professional about loosing a loved one I never have lost anyone close.I'm utterly devastated and heartbroken. I'm lucky though I do have a lovely husband although life has taken its toll on our marriage through extremely unable to handle and failing to cope with all that life has thrown we are strong and we are pulling though well day by day we have two beautiful gorgeous daughters. My dear dad's granddaughters who he is and would always be very proud of and they all love each other unconditionally. My eldest daughter aged 12 is particularly affected by her dear Grampy being so unwell but we hold on to the good times to help us through. Please can anyone if they have been so kind to read my long post reply.

It's 2 am in the morning and I can't sleep. I shall post a pic of him soon. Such a handsome man .Dear dear ASLAM Xx

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5 Replies
easterncedar profile image
easterncedar

Hello there. I'm very sorry to hear about all you are going through. You have more than your fair share of troubles, that's for sure. PSP is a tough diagnosis, but it isn't the worst thing. We do get to hold and love our dear ones. I'm sure you and your daughters are of great comfort to your parents.

This is a great community of caring people. Welcome.

Peace, ec

in reply toeasterncedar

Thank you so kind I didn't expect a response so soon I'm a nightime person and I'm in a little pain at mo but must not grumble at all its I just had an big operation last week and it's keeping me up a little. Need some Painkillers and obviously thinking about Dad. Spoke to him at the care home today and I worry as I really don't like one of the people that is in charge she is not kind and I don't think she is nice to my dad imade a complaint I hope she's in trouble.

What's your story ?

Thankyou so much for replying

I'm humbled .if it's late for you reply when convenient.

Can you tell me if not too much trouble how do I put a profile pic on xx

easterncedar profile image
easterncedar in reply to

Sorry, Miriam, I'm crashing for now. I'll try to write properly tomorrow. Good night! Ec

Spiralsparkle profile image
Spiralsparkle

You have taken the first step by posting on here and being able to off load your emotions. I'm sure your sis has told you how great and supportive this group is.

We are all sadly come together in tragic circumstances that rips out or hearts.

Big hugs

in reply toSpiralsparkle

Spiralsparkle lovely name

Thankyou for your reply .

Yes it's all so horrible isn't it but hey we'r not alone and can all walk this path together and wish for peace for our loved ones of course when nature will decide xxx

Lots of love and best wishes Miriamxx

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