Can anyone point me to a fairly recent medical paper that contains survival and other statistics for PSP. Thanks.

[nigelvaughan]

[Hidden]

Hi

I have no idea what recent medical papers say but my husband had PSP for seven years. I once read that PSP can lie dormant for 20 years.

I don't know if this is of any help to you.

Kind regards

Lina

[PSPA_KatH]

Hi there Nigel

Here are a couple of papers that you might find useful.

• Disease severity and progression in progressive supranuclear palsy and multiple system atrophy: validation of the NNIPPS--Parkinson Plus Scale.

Payan CA, Viallet F, Landwehrmeyer BG, Bonnet AM, Borg M, Durif F, Lacomblez L, Bloch F, Verny M, Fermanian J, Agid Y, Ludolph AC, Leigh PN, Bensimon G; NNIPPS Study Group. PLoS One. 2011;6(8):e22293. Epub 2011 Aug 4

• J Neurol Neurosurg Psychiatry. 2010 Apr;81(4):441-5.

Survival in progressive supranuclear palsy and frontotemporal dementia.

Chiu WZ, Kaat LD, Seelaar H, Rosso SM, Boon AJ, Kamphorst W, van Swieten JC.

Department of Neurology, Erasmus University Medical Centre Rotterdam, Room Hs 611, 's-Gravendijkwal 230, 3015 CE Rotterdam, The Netherlands.

I have some more papers that are quite recent that you may also be interested in if you contact me on my direct email [e-mail] I can send the titles on to you.

Regards

[Jeff]

ninds.nih.gov/disorders/psp...

This link has extensive information.

[nigelvaughan]

Thank you very much for posting that very informative link. I had actually read it some time ago but failed to recognise the pertinence of some of the things it was saying until I reread it.

[maggieh]

Hi Nigel

My husband died in April of this year and he too had had PSP for 7 years. His behaviour began to change long before, although the symptoms - of what doctors at first believed to be Parksinon's - began in 2003/2004.

It has been my experience, from what I have read and what I have seen, that no two people with PSP or CBD are the same. It really is a case of finding out what you can, be aware, be prepared, but just 'go with the flow'.

Regards,

Maggie

[IsraelZehavi]

Hi guys,

Do anyone of you guys have a trick in your sleeve concerning:

1, Reducing double vision

2. Reducing inability to gaze downwards.

thanks,

Israel Zehavi

[jimandsharynp]

Here's something that will help you keep up with ANYTHING that is going on with PSP, even obituaries of those who die with it. It's a Google search and here's how you set it up.

Go to Google.com, click on "MORE" then click on "STILL MORE" then find the group of options under "SPECIALIZED SEARCH" then click on "ALERTS". On "ALERTS" screen you enter "Progressive Supranuclear Palsy" and fill in the rest of the fields and click "CREATE SEARCH". You will then receive a once a day digest of anything that took place on the web that has to do with PSP. It will give you links that you can then click and follow if you are interested in what that link has to provide on PSP. I find this keeps me right in the loop on what is up with PSP. You can do the reverse to stop the alerts at any time.