I wish I had known

[Ang_ross]

My Dad passed away yesterday of PSP and I just needed someone to talk to who understands. I just wish I had know this site existed all these years and things could have been so much easier to understand. God love you all.

[NannaB]

I am so sorry you lost your dad to this horrible disease but I hope you find comfort knowing he is now free. It's a shame you have only just found this site. I can't remember how I came to it but am very grateful I found it. When I meet someone with any chronic illness, or my friends have developed one, I always tell them about Healthunlocked and how they can join their community. Folk here have given so much support.

I hope the horrors of PSP will start to fade and your memories filled with all the good things that made your dad who he was.

May you find peace during the next few very difficult weeks.

Nanna B

[easterncedar]

I'm sorry for your loss. Feel free to write anytime. We do understand something of what you are dealing with. If you'd like to tell us something about your father, share a bit of what he was like, what he did before psp or after, please do. I would be glad to know of him. Love and peace, Easterncedar

[abirke]

I am sorry for your loss. But like others have said, your dad is free from the disease. May ask how long he lived after diagnosis? Did he do anything that seemed to make his day-to-day living more comfortable? remember to focus on the good times your dad and you had the significant moments....If you want to talk , you have come to the right place....

AVB

[jillannf6]

yes i agree with what has been said above]

i have PSP (DXD 2010 DEC) aND am still here

upright most of the time apart from when i am

on the floor flat on my back or my face having fallen over again

i use a wheelchair inside sand out nose land it has reduced my

falls a lot

now at the moment i am suffering from a left hand which is numb and useless

and which i cannot use for typing or anything much so plz excuse the typos!!

and plz stay on the site

and remember your dad how he was b4 this PSP changed him

how old was he when he died?= it is a lovely photo of you and i guess ur dad would nor have wanted to leave you but he had to and now he is free of this PSP

PLZ be kind to yourself over the next weeks and ,months

lol jill

hugs and xxxx to you an d yr family

[Heady]

Hi, really sorry to hear that your Dad has passed away. It's hard to lose a father to any diesease, I lost mine to cancer 12 years ago. But to PSP, well it's a very cruel disease, at least now he is at peace.

Unfortunately, you have one more PSP battle to fight. Learning to live without your Dad around. I won't say time heals, because it doesn't! You just get use to the hole that you father has left. This battle, you have to face, like all the others PSP threw at you, with care, love and taking one day at a time! Take your OWN time to grieve, there is no set rule how long this should take. We are all different, so don't let anybody rush you!

It's a real shame you didn't find this page earlier. My husband has PSP, diagnosed 2 years ago, I don't know how I would be as sane as I am, without it. Please stay on the site, if you want to. There are quite a few people who have lost their loved ones, that are still very active on the site. So they will be able to help you, over the next few months. Also, you will have valuable knowledge, that could help the rest of us, if you don't mind sharing your experiences. Feel free to rant and rave as much as you like, nobody will judge you, all far too busy feeling exactly the same as you! But we will all listen and try and get you back on the straight and narrow!!!

Sending lots of love

Heady

[Ang_ross]

My Dad was diagnosed with PSP 14 months ago after 4 years of being incorrectly diagnosed with early onset dementia and depression. It first started with him losing his balance and feeling "drunk" when he was walking. This made him lose confidence in himself. I cared for him at home for two years when his eyesight started to become affected and he could not look down at his feet or to see the food on his plate so eating became difficult. At his request he moved into the most wonderful care home locally to me and I continued to visit very regularly. At this point he was still labelled with depression and dementia despite me knowing he never forgot ANYTHING! It was the lovely care home staff who recommended he eventually get a brain scan and PSP was diagnosed early last year. At last we knew dementia was NOT the problem although we were aware there was no cure. Tom (my Dad) declined fairly rapidly from then and very quickly he lost he power of his voice which was frustrating for him. Last to go was his swallowing and he laterally struggled to swallow pureed food and liquid. I have hated every second watching this cruel disease take away my strong farmer father. He is now at peace and I miss him dearly and will do so for a very long time. Tom died on Tuesday aged 74 years old.

[Doglinton in reply to Ang_ross]

So sorry for your loss. Losing my father is still painful to remember and he died 18 years ago ! As Heady said you get used to living with the hole.

It makes it worse, though, when the loss is from such a cruel disease, which takes away in bits. In some ways I lost my darling husband a few years ago but he is still there, missing some bits ,but also showing such endurance and courage, maintaining good humour and appreciation, still a real gentleman. The disease cannot strip everything away.

Let yourself grieve and mourn the loss, and ,when ready, focus again on the strong father of your youth. So many good memories are a blessing.

Love, Jean

[hmfsli]

It is a little over a year since Mum died (21/5/14) and I still miss her. Had a moment this morning where I found myself chatting to her about a trip we took together many years ago. I was revisiting that place for work and, despite my concerns, found only happy memories there. It's taken a while but the memories of life before PSP are emerging once again and they are good.

[Opope]

I'm so sorry for your loss. I lost my mum on 19th April to this awful disease.

Mum was only diagnosed in December when rushed into hospital with pnuemonia, however she was at the latter stages. She had vascular dementia so all of her symptoms had been put down to that unfortunately.

When mum was diagnosed with PSP I immediately started to research it and found this site and all the amazing people on it. It was a godsend to us over the next 4 months.

God bless you and your family

May your dad rest in eternal peace.