Info on patients with PSP

[_gvis-8]

Sister with PSP. Would like to speak to people that have a relative with the same syndrome.

[Escada29]

Hi we are all here its the right place to be for some good info and tips x

[NannaB]

Welcome. Just say what you want to say and any of us here who can help, will do. It helps us if we know what country you are in as health regulations and help provide is different around the world.  

I'm sorry about  your sister and hope you find help and comfort here like I and many others have.

Nanna B

[Heady]

Hi, welcome to the best site on-line!  We are all Carers, like myself, my husband was diagnosed in 2013, or sufferers of PSP.   We all rant, rave, kick and scream about this evil disease.  We share the good times and look to others to get us through the bad days.  

This is a world wide site, so any question will be answered quickly, no matter what time of posting.  Great for those sleepless nights.  Don't be frightened of asking anything, nothing is trivial with PSP.

Like NannaB has asked, where are you?  This will help, when you need advise about where to get help for your sister.  Are you her main Carer?

Looking forward to getting to know you!

Lots of love

Heady

[Kevin_1]

Hello _gvis-8

Welcome.

This is a nice forum, loads of good info and support with no rudeness or flaming.

Waiving

Kevin

[kryste]

anytime

[kryste]

you can email anytime [e-mail]

[Amilazy]

Hi -gvis-8 no idea about South Africa but welcome to this site for information from experience.  Read and take some lessons, PSP is different for everyone but there are similarities in stages.  Hopefully the progress will be slow and she has many years of relative safety.

Try the PSPA website (pspassociation.org.uk) for information on PSP and effects and support needed, especially information to hand out to medical professionals and Carers as most will have no idea on PSP and its effects.  Also if she is able get memories for later.  

My wife is 66 but has had PSP for at least 7 yrs and is now in a nursing home unable to do much independently but is still mentally active but locked in.  Be aware PSP is not a standard condition does not flow in the same manner for each patient but the main symptoms appear in different strengths but always cumulatively.

Good luck and keep in touch with the site.  Tim

[GillJan]

Sorry you have had to join this site and that your sister has PSP. My husband is about 3 years in now, always willing to help. If you can get hold of a copy of the book Last Dance at the Savoy by Kathyrn Leigh Scott, you would find it very informative, she is an author and actress and nursed her husband through PSP and has written a book about their journey. It is not dramatised, but sympathetically written, difficult to put down and confirms a lot of what I have felt and seen so far. That has made me feel much better about how I am dealing with the condition, knowing I am not the only one to say and feel some of the revelations in her book. Any questions just yell. Don't know how your sister is at the moment, but we can all help with equipment ideas etc as and when you want. Take care of yourself too, Gill x

[Sawa]

Hi there, we are in South Africa. My hubby was diagnosed in 2011 and my Mom and I share Carer duties as I still work full time. 

We are in Jhb. There is another couple I am aware of who are down in the Cape. Whereabouts are you? Feel free to contact me for info and questions. We tend to do things a little differently here to other parts of the world, and resources are sometimes difficult to find but I've done a lot of the research. My email is [e-mail]

Sawa

[Doglinton]

Welcome. You have found the place. You don't always need to ask as someone else may have asked. Lods of info here.

love, Jean x

[shasha]

I HAVE PSP SO IF YOU WANT TO KNOW ANYTHING THEN JUST MESSAGE ME

[Tttp]

Hi don't have your name sorry your sister has PSP, my brother also has this disease, diagnosed a couple years ago with problems at least 3 years before, I am kind of new to this site, how wonderful everyone is, very helpful. I caretaker along with my sister en law, feel free to get back to me it's comforting to talk with others who deals with this terrible disease, with great tips to make everyday a little easier on the them and the caretaker.

[Auddonz]

Best place to be if you have any questions. My hubby has PSP. Questions, just ask, someone is always here who can possibly help you.. You came to the right place.

Auddonz (aka Audrey)

[peterjones]

hi matey youhave hadall the good advice       nowput  it into      practice   matey  

peter   jones  queensland Australia   psp sufferer