Help is HERE!

[EAE]

I'm sure you have seen that this site hasn't been very active for a while.

But, you can see the number of people who look here. Please know that there are some of us who have dealt with PSP first hand, and would be happy to do anything to help you if you are dealing with it now (a shoulder to cry upon, a listening ear, suggestions for dealing with a particular problem if we also encountered it, and friendship..)

I've met some people here who know me better than many who live near me. They are constant, and know what it is like to care for someone with PSP.

We are here for you if you need us, and would do anything to help.

This site used to be VERY active. The computer had problems and one of the men who "kept it going" died...those who remain want to keep it alive for those who need it.

My best to all of you facing PSP. It's a challenge to say the least, but it can be endured with the help of others, whether next door OR around the globe.

May the week be gentle to us all..


Beth

[Aussie]

Thank you Beth....as always i stand here besides you waiting to offer assistance if needed.The bond we share grew from a need to understand PSP as our loved ones courageously faced the PSP journey ahead of them.As carers we shared so much..our friendship now has endured the loss of not only our loved ones but many we have come to know & love here as well. The strength of that friendship has deepened over the years to the extent we share more with each other than with our own siblings...something that would appear to happen when you have been a full time carer,for who knows let alone understands better than one who has given so much.Our friendship will result in Beth & i meeting for the first time this coming Christmas when i fly to Missouri.I was so very fortunate that i didn't have to walk the PSP road alone so if you need an understanding friend to share the load we are here.May your week be filled with kindness,love & laughter.God Bless.
Glenda

[Sally Edwards]

Hello Beth and Glenda,

Thankyou for being here. I did start off, a short while ago, in a positive way, to try and get here each day. But things have been a bit difficult here and apart from grabbing a few minutes each day, I havent been able to do much.

But, please believe me, when I say that I have been thinking and praying for people who are travelling the journey with PSP.

We are coming up to Dads 4th anniversary. I cant believe how the time has flown. I will never forget the journey we had with PSP, but it does become a bit easier. The only good thing to have come out of it, has been the friendships and support that I found on this forum and the uk forum.

PLEASE continue to come here and help others. Even if it is just through reading the messages that we send to each other......

Take care and God Bless,
Sally x

[sanjay]

Hello Family,

This is Sanjay from Mumbai - India..

I used to be active on this website from OCT 1998 till OCT 2004. My mother was suffering from PSP and I was here full time carer. In the six years of interaction with this website, my family grew all over the world as it put me in contact with inidividuals who cared for their loved ones.

I agree that at one time this place was so busy that we had to arrange a sunday meeting in a chatroom for all to connect together. We shared information on PSP and prepared each other on how to look after PSP affected person as well as prepare the journey of PSP. The data bank was huge and contributions by experiences in different parts of the world was all logged here. Sadly, that database has been lost.

Should anyone have questions on PSP as carer or illness management, please log them here and I shall try and assist to the best of my ability.

I am confident that other PSP members too will pitch and assist. I miss the PSP family members alot. BOB and JAN are two individuals who really touched me and gave me strength to carry on. Sadly both are no more as they were called to Heaven by the Good Lord.

My warm regards and love to my PSP FAMILY. May you be happy and well. Life is tough after PSP but the challenges of PSP has certainly developed our character and personality.

May God be with You.

Love

Sanjay

[EAE]

Sanjay,

How good to hear from you! Our paths of PSP paralled themselves, with my being Mom's full time caregiver and her death in early November of '04. You were always an inspiration to me, my thinking that if Sanjay could do it, I could do it too. As you can see I tried keeping the forum up and going, but I think many of the people went to another forum which I frequent. I've thought often about you and your family, hoping all is well. Glenda is coming to visit me at Christmastime!! I can't wait!

More later..I'm off to work.

Beth

[Sally Edwards]

Hello, Beth,Glenda and Sanjay.

I thought I would visit and see how this site is going. Sadly, it is a shame to see it is very quiet.

It breaks my heart to know that all the hard work that Jan Del and Bob (Boston) did to keep the site up and running, seems to now be wasted. Apart form us faithful ones, who keep trying to keep the site going, no one else seems to be trying. As Beth, has said, it is obvious that people are visiting and looking for somewhere for help, support and friendship. But how can we help, unless they "talk" to us.

PLEASE, PLEASE, let us help you. We too, have travelled the PSP journey. Let us use our experience to help you too.

God Bless,

Sally x