How can I help her?

[Schuey]

Hi I have joined the PSP Association as my sister has PSP and I want to know what to expect in the future.

[abirke]

Let me be the first to sadly welcome you. PSP is difficult and its not going away and it consumes more than just the patient. I'm sorry. But you and any of your sisters friends and relatives are in for a long haul. However, this site may be able to give you some insight and or relief to know you are not alone. let me say that again, YOU ARE NOT ALONE! Heady (a fellow carer) welcomed me with the fact that I can cry and scream and vent all I wanted here . And she was right.... Another however. You can also gain strength here. so look for it and you'll find it. How long has you sister been sick? does she have a husband who might need a site like this? Let me also interest you in a site , CurePSP.org VERY GOOD site. They will send you a brochure(?) a Kit(?) whatever, it has alot of the Q's and A's, and Facts you will need for yourself and others, namely the medical field, who have never heard of such a disorder.......We are lone sojourners my friend. We are the educators....Mndovermnky has alot of good info look up his posts. There are people here who HAVE PSP. who write here....I just found out how effective taking a bathroom door off it's hinges was....more room less falls haha. Well as I do with most newcomers I will offer you this: If you are a Bible reader, open it. If you believe in the power of God don't be afraid to ask him for guidance...you cannot do this on your own. If you go to church, allow others to receive a blessing by letting them give their help to you (It's more blessed to give...)

I will leave you with some words of encouragement.

Again, Welcome

AVB

Cast your burden upon the Lord,and he shall strengthen you: he shall never suffer the righteous to be moved. Psalm 55:22

Do not be anxious for anything, but in every situation, by prayer and petition, with thanksgiving present your requests to God. And the peace of God, transcends all understanding, will guard your hearts your minds in Christ Jesus. Philippians 4:16

[NannaB]

Welcome Schuey. As I often do, I echo AVB's post, including the verses of encouragement from the Bible. There is so much to expect in the future, too much to write here. Google PSP for lots of facts but if you want to know what it is really like, read a few of the past posts and now you have found us, future ones. If you are not your sister's main carer, whoever is will need a lot of support so if you can give it, I'm sure it will be appreciated.

Nanna B

[Troubles]

Noooooo this is not a religious site please oh please do not go down this road. It's finding help in the real world not beliefs. Save that for yourselves if that's what you want to believe in but please please don't push this on carers and suffers . This is a cruel cruel disease WITH NO CURE get back to the real world just give every day advice not religion. Is our world not already in too many wars with Religion.

I'm sorry if this to too hard to hear for some but I have a family member who would see an family member die rather than have a blood transfusion due to a religion. EACH TO YOUR OWN BUT THIS DOES NOT MAKE THIS DISEASE GO AWAY ITS JUST THE WORLDS LARGEST SCAM. PRAYING ON PEOPLE THAT ARE ALREADY DOWN

[Schuey]

Thank you all for your kind words. It is comforting to know that there are other people who understand how you feel and who are willing to talk about their experiences. I had never heard of PSP until my sister was diagnosed. She has been suffering for the last three years. She doesn't complain but she gets frustrated because before she had this terrible illness she was very active and sporty and loved to dance. Her husband is her main carer and even though he finds it quite stressful he will not seek help.

[Julieandrog]

hi

what i have learnt

1 take every bit of help offered.

2 take each day as it comes, a curved ball will always come and hit you be prepared!

3 tell them you love them

4 cry a lot you will get it out of your system

5 loss and adjustment take time like a bereavement

6 get copies of the pathways from the association and give them to every professional you see

put humour in everything difficult i know!

julie x

[Schuey]

Thank you for your advice