Thank You to our Survivors: Part 2 - PSP Association

PSP Association

9,658 members11,568 posts

Thank You to our Survivors: Part 2

raincitygirl profile image
35 Replies

This is a Thank You to those of you who have completed the PSP/CBD journey with your loved one, and who stay connected to this site. Your "freedom" has come at a great cost: a deliverance from suffering for your dear one, and a different kind of suffering for you. Despite your loss, you have stayed connected to us and give us the benefit of Perspective. You share your grief, you give us valuable information and also the hope for a new life after PSP/CBD.

So in the depths of this cold and dark January (..at least in the N Hemisphere..) thanks and love to Andrea, Jean, Sarah, Marie, Anne, Dan, Bev and more. You can't imagine how helpful you are to us all. XXX

Anne G.

Written by
raincitygirl profile image
raincitygirl
To view profiles and participate in discussions please or .
35 Replies
Helen119 profile image
Helen119

Hi Anne

This is such a beautiful, thoughtful thing to do, shows what a kind person you are.

Also full of gratitude and respect to all on this site.

Love and hugs

Helen xxx

Yvonneandgeorge profile image
Yvonneandgeorge in reply toHelen119

Here here love you all 💕

Heady profile image
Heady

Thank you Anne. I think I can answer for everyone else, those of us that have finished the first part of the PSP journey, still need all our friends that we have made over the years, to get us through the second part. It's just as rocky and lonely. I want to still be part of this group, I need to be. I need that feeling, that i can still help, in some small way. The bottom line for grief is, you are on your own, how ever your loved one died, but the years and the trauma of PSP, we all go through, somehow sets me apart from other widows. I personally, think it's the same, but I know in the widows group I belong to, they treat me differently, because everything I have been through. Only people on here, again, know what it's like and know it's "normal!!!!!", and I need that, more than ever.

So thank you again Anne, for letting me stay and for making me feel needed.

Sending big hug and much love

Lots of love

Anne

abirke profile image
abirke in reply toHeady

How are you treated differently at your widows group, Anne?

Heady profile image
Heady in reply toabirke

There is a real mixture of reasons, why we have all joined this group, including a murder. Mostly it's cancer, everyone seems to be in awe about what I have even through and how long i had to care for Steve and don't really understand how I feel about him leaving me, long before his death.

Lots of love

Anne

abirke profile image
abirke in reply toHeady

I had a neighbor whose wife died in 2013 , just months after Bruces diagnosis. I wondered then as I do now , what would be harder, the sudden death with no preparation ; no goodbyes or I love you's and maybe the last words were that of anger; a grief and guilt that cannot be remedied or prepared for .....or would it be the long term progressive diseases such as our loved ones had... with too much preparation too many goodbyes and still the guilt and grief . B and I had a sad but lovely four years together.

raincitygirl profile image
raincitygirl in reply toabirke

I have a close neighbour who had the alternate experience: sudden totally unexpected cardiac death at work during a week where there had been some "snarky-ness" at home. They were a very bonded loving couple. Her grief has seemed bottomless. I think of her whenever I'm feeling b__tchy about my current life....

Cuttercat profile image
Cuttercat in reply toHeady

Agree wholeheartedly, good for you!

Please keep staying with us, we need you.

Cuttercat

BindiLeech profile image
BindiLeech in reply toHeady

Anne, you are so definitely loved and needed on this website from those who care and those of us who require the caring!!!Never never, never underrate your value on this site please

love, Bindi!!!!!!!!!!!!!!!

Heady profile image
Heady in reply toBindiLeech

Thank you Bindi! Hope you are still keeping as well as PSP will let you.

Sending big hug and much love

Lots of love

Anne

raincitygirl profile image
raincitygirl in reply toBindiLeech

Bindi, did I read right? Are you one of our PSP survivors? ,(the ones I saluted on Post 1)?. Thank you for tuning in. So valuable for us to hear from you! Sorry I missed ypur name earlier. Xx

Anne G.

abirke profile image
abirke

Thank you Anne G., I try not to interfere in the day to day goings on of those new to this place as I don't want to add extra suffering of what will be. However some stuff I just have to respond to.

And you are right these folks here who have suffered the complete effect of PSP are good friends and soul mates if you will. I continue to appreciate and respect their wisdom and new experiences in life our after death.

Andrea

Ratcliffe profile image
Ratcliffe

Thanks Anne, and pretty much echo what Anne said in reply. All these Anne's lol.

I found this site useful on My PSP journey, and the continuing journey that post-PSP is.

We are all friends here, all going through our journeys our own ways, but all in need of help, advice and probably most importantly reassurance, and you lovely people have delivered it in spades at the points when I have needed it most.

Keep on being awesome everyone!

doglington profile image
doglington

Yes. Support is still needed after psp has done its work. Its always a two way thing !

xx

Nanny857 profile image
Nanny857

Hi AnneG thanks for both posts. I too am thankful that those whose loved ones are now free of PSP have stayed with us as their expertise and knowledge is much needed and valued. And for those who are still on this horrendous journey your posts are much needed too.

Marie_14 profile image
Marie_14

Dear Anne thank you for your kindness. As Heady (Anne) says we need you all as much as you need us. It is very much a two way thing.

Heady is right about being treated differently. It is simply that others don't understand what we have been through I think. Some people, even friends, don't want to know. That is hard to cope with at times. Here we are welcome and can actually help at times? I know when I found this group I was so relieved to discover others who were willing to help me. I thought after my husband died that I was going to help (if I could) those who were new and probably feeling the pure shock and desperation I felt.

Hope you are well Anne? These conditions take so much out of people.

Hugs to you.

Marie x

raincitygirl profile image
raincitygirl in reply toMarie_14

Marie, If it's me Anne you're asking (as Dan says, so many Annes!..) thank you, I'm doing well compared to many: we are not in the really physically difficult stage yet. My worst complaints are the loss of my husband's personality, companionship, energy, presence..and of course my grief at his losing his good life way too soon - and my life, as it is all chores and very home-bound (which I wasn't before!...I like to roam about a little).

I'm trying to keep perspective and health up for the really hard part(s) to come. It helps me to know that it won't last forever (as cruel as that may seem) and because of the Survivors and other members on this site who help me keep perspective, I can be a more giving, loving spouse. I'm just "delaying my time". Having said that, I DO have a few days away coming up thanks to my lovely step-daughter, and that will be grand!

Hugs to you :-)

Anne G.

Marie_14 profile image
Marie_14 in reply toraincitygirl

Anne where do you live? I like to know where all my pals are. Everyone on this site is regarded as a pal by the way! You are all great! Hugs to you all.

Marie x

raincitygirl profile image
raincitygirl in reply toMarie_14

Hi Marie, I'm just outside Vancouver BC Canada where today, again, as it has all month, it is raining! (Hence my "handle" ;-)

You?

Marie_14 profile image
Marie_14 in reply toraincitygirl

Ahhh do you know I wondered why the raincitygirl!! Does it rain that much in Vancouver? I know someone who went there to live but he came back to the UK! Maybe we don't have as much rain as we think we do here? I live in Cheshire right up against the Welsh border! I am originally from Ireland however. That seems a very long time ago now! My children and grandchildren are here, so apart from cousins who live in Ireland my family are now here. My brother lives in Spain.

Marie x

raincitygirl profile image
raincitygirl in reply toMarie_14

We're both used to moss and ferns then, ha ha!!

Marie_14 profile image
Marie_14 in reply toraincitygirl

Seems like it! 😁. One of my aunt's used to have fern in the front garden! One has started to grow in my back garden!! I couldn't believe it but think I will keep it...memories eh?

Marie x

raincitygirl profile image
raincitygirl in reply toMarie_14

PS: Beautiful part of the world, Cheshire: Hubby and I took a small bus tour of Southern England from Bristol to Canterbury. Too short a time in each place but we saw Cheshire at one point :-) Hubby always said he could live there...

georgeg25 profile image
georgeg25

Thank you for this post. I do not post very much on here but check in daily. I have only just started the second phase of this journet ( I lost my precious Liz just 2 months ago) and still feel completely lost without her. The comments on here help me to realise that I will get through this dismal stage ( eventually). I would like to think that at some point in the future, I will be able to offer more support and comments. Thise site has and is helping me to retain my sanity. Thank you all you wonderful people from the bottom of my heart , broken as it is. X

raincitygirl profile image
raincitygirl in reply togeorgeg25

You are not alone George; we're here - all working on keeping our sanity! Glad to see you check in :-)

Cheers

Anne G

georgeg25 profile image
georgeg25 in reply toraincitygirl

Thank you Annie. It means a lot to know we are not alone.

Marie_14 profile image
Marie_14 in reply togeorgeg25

You are still in the early stages of grieving for your Liz. It gets easier over time but the road ahead can be very bumpy! I go up and down all the time. Nothing is easy is it?

Glad you still log on each day Georgeg25. There are so many of us who do.

Take care and hugs to you.

Marie x

georgeg25 profile image
georgeg25 in reply toMarie_14

Thank you Marie. Bumpy indeed. The road sometimes seems sooo long it is difficult to see an end. It is there but we must still travel along it. Take care.

Marie_14 profile image
Marie_14 in reply togeorgeg25

George how right you are. I keep waiting to get there wherever there is! In the meantime I just get up and read my email and do as little as possible. Some days I have spurts of energy so maybe I am getting there but don't know it?

Take care.

Marie x

georgeg25 profile image
georgeg25 in reply toMarie_14

I know exactly what you mean Marie. I am the same. Sometimes I just sit around all day with no inclination to do anything. Then some days I charge into housework washing shopping etc. I pray that we both and all the other survivors can find peace in our lives. Sending thoughts and hugs to all.

johns65 profile image
johns65

Every morning I grab my iPad and see what good information there is here from you good folks. I don't know how I could make it through the day if it was'nt. This journey is getting long and I am getting tired and I hope I can keep on smiling for a while yet. All the comments here, hit home and I feel like I have been walking in their shoes. Just another reason why we need to support each other on this terrible PSP journey. Just me here in Minnesota, Joyce

raincitygirl profile image
raincitygirl in reply tojohns65

Amen to that Joyce.

❤❤

Marie_14 profile image
Marie_14 in reply tojohns65

Joyce keep going until you realise you can't. Then get help!

Marie x

vlh4444 profile image
vlh4444

Thank you Anne. I think that as the months go by those of us who have lost our loved ones to PSP/CBD have perhaps gained a more balanced view of the whole dreadful experience. Maybe when the daily tribulations of the caring role have faded a little one can 'see the wood for the trees' better. The fact is that it is a truly horrible illness however you look at it and none of us who are left will ever be the same again. The challenge now is to try to find a meaningful role for ourselves after PSP caring. The new freedom brings its own stress in choosing the direction in which to go and having the confidence to grasp the new opportunities.

The old friends here provide an anchor in the rough seas we encounter as novice solo sailors.

Love to all

Vicki

raincitygirl profile image
raincitygirl in reply tovlh4444

Its like you're painting a picture of what comes after, Vicki..I can catch glimpses of it ...

Thank you!

Anne G.

Not what you're looking for?

You may also like...

To all our Readers!

Hi, my name is Anne, on here, known as Heady. My husband was diagnosed with PSP back in 2013, he...
Heady profile image

How Long from First Symptoms to PSP or CBD Diagnosis?

Hi All: I'm curious to see people's experience of the time between symptom onset and the "real"...

Thank you!

Thank you all! Words cannot express the gratitude I have for each and every one of you for your...
Cuttercat profile image

Happy Hols!!!

Two of our members are off on holiday to Morocco in the next few days. Have a fabulous time girls....
Heady profile image

Thank you

Thank you for the responses to my rant re hubs catheter experience, he’s home now. Every time...
Rocksbeb profile image

Moderation team

HelenPSPA profile image
HelenPSPAAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.