My grandad <3 died at the hands of psp 11.... - PSP Association

PSP Association

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My grandad <3 died at the hands of psp 11.4.13


hey im toni im 20 years old and my grandad had psp, he lived with it for 11 years he was the bravest man i have ever met, he went throough these years of pain to this nasty disease he was a good man it hurt seeing him not what he was the 2 days he was in hospital were the hardest days of my life he didnt look like the man i knew i stayed day and night i didnt want to leave his side i was there till he took his last breathe, it hurt to watch but i knew he was at peace and not in pain anymore, i want to help find a cure to this horrable disease i dont want anyone to go through the pain me and my family did, i have desided to plan a charity run for psp in the north east, he was the only man with the disease in the north east, i want make people aware of the disease and make a diffirents, its for my grandad and for anyone with psp. anyone who would like to contact me please do we can fight this x

14 Replies

So sorry for your loss Toni :( I think you are on the right track! It's people like you who can take a negative and turn it into something positive that make a difference. I'd come and run, but I'm in Canada, and honestly I'd walk or cycle. Keep your chin up and don't give up, the more awareness and support for psp, the closer the cure, or prevention.


Dear Toni, I think that you must take after your grandad in that you are also a very brave person ,in addition to being very caring and a person who really makes a positive difference in the world. I believe that your grandad knew that you were there by his side and could hear words that you spoke to him even if he couldn't respond. I also believe that he's very proud of you and that his spirit lives on in you. I live in LI, NY and am taking care of my sister who is 63 years old and has PSP.. She is also very brave and is doing the best that she can ! I hope that you have some people in the area that you live who can help you to organize and plan the charity event . Maybe the people at the PSP Association would have some good ideas also and could supply you with some printed handouts for example, that can be given to people to educate them about PSP and to raise their awareness .

Please keep us all posted . Sending caring thoughts and condolences to you and your family . Take care, Elise

Dear Toni, So sorry for your loss. Keep up the positive thoughts and your commitment to bring awareness to this awful disease. My husband has had this disease for 7 years and I dont look forward to whats in store as he is getting worse every day. Please know we are all behind you no matter where we live. We live in British Columbia Canada. I'd say you are a brave grandson as well. Sending you and your family healing and love.

Dear Toni

My husband has PSP for the last 5 years I am taking care of him we stay in Pune India

May your grand fathers soul rest in peace condolences to family

I would also like to start an association of PSP so that we can exchange views and help each other

ritak in reply to LALITHA

So sorry for your loss Toni. You are a very brave grand daughter to be with him in his difficult days. May god bless you.

Lalitha, I saw you wrote from Pune, its really hard to get support

For PSP in India as there is no association dedicated to the disease.

My mom suffers from PSP and it has been a draining experience for all of us.

My dad is the main caregiver as we live in Singapore.

A very heavy cross to bear that we cannot be close to them :-(

sorry, now he is in is your angel...let him go now that is free :) a hug for u

Hi Toni, you sound like a wonderful human being, to spend as much time with your Grandad, and he would have known that even if he couldnt let you know. We are also from the North east of England but are living in Australia now. It is so nice of you to want to honor your grandad by raising money for a cure, I'm not sure but i think Sir Sebastian Coe has a charity run in the Northeast ( The great north run) to raise money for PSP and other charity's. perhaps you could hook up with this association and raise money through club nights, party's and fun interests letting the youth of today see why we badly need to find a cure. good luck with it all, stay strong for your grandad for he surely loved you . :)

yes you are right seb coe's mum died from psp

so sorry for your loss. my husband haspsp. now for 5 yrs. if is just a horrible disease. i hate everyday now. it takes my whole life away. we retired and moved to florida to enjoy life and now we cant. we do have wonferful families and there is support here. we have a psp group with wongerful people. i made good friends here but my husband who is omly 66 yrs old cant do anything for himself. i have an aid all day and now i started to get weekend help too. sinxe oct. he has declined a great deal. we just push on and hope he doesnt suffer too much. there really nothing out there that works for psp.weve been all over and did alot of research. take care and remember all your good memories. bubbie

Hey Toni , so sorry for your loss , but your Grandad is now at peace and free of P.S.P. . I lost my brother recently to P.S.P. and the only way forward is to raise as much awareness, and funds so that some day there will be a cure found for this horrible disease. . My family have completed a Marathon in recent weeks and on April 21 we will climb the highest mountain in Ireland we have so many events planned for this year , and we will keep going for as long as we can .. So Toni go for it it for Grandad .. Much love and hugs ...Aine Southwest Ireland xxxx

Hi Toni,

I am so sorry to read that you have lost your Grandad to PSP. It sounds like you and he were very close.

When it comes to organising an event to raise funds for PSP the best advice I can give is to get in touch with the PSP Association; the team there have lots of useful information they can send you about how to set up and organise an event. For some events you need to get licenses and permissions from various authorities and I am sure the team at PSPA can point you in the right direction. It takes a fair amount of planning to organise an event but there's no reason why you couldn't do it so go for it and let us know how you get on.


Hi Toni,

I'm really sorry you've lost your grandfather to PSP, I lost my grandfather 8 years ago. As you say it's hard although it is a comfort to know that they are at last free of this disease. I'm now watching my great aunt, who is more like a grandmother in ways, head towards the end of her battle with PSP. The fundraising really does help as the difference we've noticed a considerable difference in awareness and resources, although this could be postcode related.

In terms of planning an event contact the PSP Association as hmfsli says. I ran London Marathon for them last year and did tea parties and all sorts in the process to raise money. They are really helpful and have a lot of experience. I'm not sure exactly where you are in the north east but potentially see if there's a support group somewhere near too? I'm happy to help if I can.



How hard that was for you to do, not including the heartache and worry as the disease progressed. I can only echo what other's have said; you are very brave and very compassionate.

I'm 54 and the mother of 2 daughters, 20 and 21, just like you. I'm in the earlier stages now, but they can see the differences in me and it makes them worry about me which makes me worry doubly about them, and what they will be a witness to over the next handful of years.

So I'm doing my best, now, while I can, to keep the atmosphere light, make sure we laugh everyday, and my 'stories' I've been telling them about themselves and/or each other are driving them a little crazy:)

Behind the scenes, I'm making as many important decisions as I can via a health care directive now so that awful burden won't fall on them. I'm also cleaning up other unfinished business & making various arrangements now, so it won't fall on them. Tho, it's somewhat satisfying to know I'm doing these things now, what I worry about most are my lovely daughters and how theyll cope before and after.

So when I see such a lovely yet spirited post from someone my daughters' ages, Toni, like you, it gives me hope and faith that they will pick up the flag I've carried and continue on, such as you're doing now.

Raising awareness is SO important. So create a run. Go for it!!!! Spread the word and MAKE people aware of it. BE OUR VOICE; it's surely needed. It's lonely for us who have PSP, knowing most people don't know what it is, or understand it if you explain it. But it's just as lonely for family members, friends, and caretakers of those with PSP there are sometimes not many people to talk to about how hard it is.

God Bless you; I am truly sorry for the loss of your Grandad. You'll be in my thoughts & prayers for a long time to come.

Judy J



I'm so sorry you've lost your grandad but I echo others and say he is at peace now and you know longer have to worry about him. Well done for considering fund raising while you are still grieving. I hope it all works out and you'll feel a wonderful sense of achievement when the money starts to come in. I hope my little grandchildren grow into such mature, caring young people and hope my husband with PSP, lives long enough for them to remember him.

Like Judy J, you'll be in my thoughts and prayers.

Nanna B

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