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PSP Association
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We will always miss you

I joined this forum few months ago. Everybody has been so supportive and great. It feels like one big family. Somebody is always there to help or answer questions.

My loving Dad unfortunately lost the fight with PSP. I am so sad and want to cry all the time. It is so hard to cope with it. I couldn't even write about it for a long time....so I only kept reading others posts that made me feel little closer to him (flashbacks)

We have lots of supplies that we haven't used (diapers, reusable, washable pads, PEG supplies, urinary bags, etc.) All brand new.

I would like to donate them or give them to somebody who suffers with the same disease as my Dad did or somebody from this great forum......

I am on Long Island in the US. I am not sure if anybody is close to me and is in need of any of these things? But please let me know if you do.

Thank you,


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So sorry, Monika. Hugs to you. Love, ec

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Thank you


I am sorry for the loss of your daddy....My one son cries alot...my other cries never...and my daughter is in shock cries, be's mad, goes through the what ifs.... all the feelings that grief conjures up; so I know how your feel....I pray that you will in your own good time come through all of this a better person, able to help the world become a better place to live. But for now, cry, and laugh thinking of the funny things your dad would do and reminisce about the things that made that man hopefully the best dad in the world.

I too am in mourning and it seems to be stretching way out beyond the dusk ....



Area Agency on Aging may be able to help you with your excess supplies.....I have yet to do that as well.....

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Thank you so much for all the good words. I remember when you posted about your husband passing. I read every post. My daddy was then in the hospital. Still fighting. I had a feeling that he was starring to loose the fight with PSP. He was just loosing too much weight and he couldn't easily breath anymore.

It's such a cruel disease. I go through cries, what ifs. And it's not getting easier. I am just glad he is not suffering anymore.

But thank you for all your good words and support and posts.



Monika like you I have supplies of things but don't know who to give them to. Seems such a waste to throw them away when someone would be grateful of them?

Like you I am struggling with coming to terms with the mourning process. I really miss my husband. My daughter is really struggling too but locks herself away in her house. My son keeps it to himself but does come to see me, he's not averse to counselling whereas my daughter is.

My Granddaughter seems to be going through pain too but is trying to hide it. She has always come to stay on Saturday night then decided she would come every other week. This month she hasn't stayed and has been telling me her Mum didn't want her to stay! I know she is getting older too so probably wants to have time with her friends but it isn't like her to lie to me. We have akways been very close. So have had a very tearful weekend.

We are always here for you Monika so don't forget that?

Marie x


It is very interesting how everybody is coping differently with loosing a loved one. I am just trying to think of the good memories and times we all have had with my dad. However this sometimes brings the question why him? Why he couldn't enjoy fully all the times we've spent together?

I feel like this disease is so cruel. It take away everything from the person. From walking to vision to swallowing. All was left at the end was ability to hear and understand everything.

I am trying to find positive in all of this. Sometimes I am relieved that he doesn't suffer anymore, sometimes I am angry, and sometimes I smile when I think of my childhood and great things we've done together with my dad.

I love him and miss him so much.

Thank you Marie for all your good words. We are in it together. And I can just pray that they will finally find cure for this horrible sickness so no more families would suffer from it.


Monika I think you are doing much better than I am. You at least look back on happy memories? I seem unable to do that. I am just locked in a place where all I can do is think of all he went through. I relive all the falls all the loss of dignity, the whole thing! I am stuck and don't know how to get out of it! One day I will I suppose as before I was stuck and unable to cry. Now I can cry but I wish I could remember the good times. I will work on that one Monika!

See we do help each other? Sometimes by saying something in innocence.

Hugs to you.

Marie x

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