Has anyone documented the stages and poss timescales for PSP. Wife just been diagnosed.

[snapper]

[Hidden]

Go to pspeur.org and download the Pathway of Care for PSP. This explains very clearly the stages of progression of the disease., The timescales vary widely though. Normally from the onset of the illness it takes about 7 to 8 years. Problem is that very often people were suffering from the illness for many years before they are being diagnosed.

Also download from the PSPA website 'Your personal guide to PSP' which tells you about all the things to do and where to get help and support and how to initiate this. Finally it may be a good idea to talk to the specialist care nurse of the PSPA who may provide help and support.

[snapper in reply to Hidden]

Thanks for the links, at the moment we feel as if "thats your problem and just get on with it"

[snapper]

Hi Gerko did you mean the article " A brief guide to PSP" I don't seem to be able to find any downloads, I was expecting something in PDF format.

[Hidden in reply to snapper]

No, if you check under 'professionals' you will see the subject 'Pathway of Care for PSP. A guide for Health and Social Care Professionals'. You can download that in pdf format, or you can print it out. This will give you a complete and comprehensive overview of the pathway (progression) of the illness. This is an overview that should be obligatory reading materials for all GP's, social care organisations and carers.

The timescales are estimated to be about 8 years, but there is a big uncertainty about this. First of all, very often the condition is only diagnosed a long time after the onset of the disease. Or not at all. Very often GP's call it a general condition of old age. Secondly it is now believed that the illness may have already started a long time before the first symptoms manifest themselves. Hence the uncertainty about the timescales. However, if you read the write up of the Pathway of Care for PSP you can probably identify roughly the phase in which your wife finds herself currently and take it from there. Let me know whether / or not you can now find it. If not, give me your e-mail address and I will mail it to you.

[snapper in reply to Hidden]

Got it now. Thanks very much. All I have to do is to get the 'professionals' to look at it. Many thanks for your help.

[Susan789]

pspinformation.com/disease/...

[snapper in reply to Susan789]

thanks for your help on this. am just beginning to understand what the future holds.

[Susan789 in reply to snapper]

Looking back, I would worry less about the future, than about holding on to what you have today. Preparing is fine, but right now is the best it is going to be, and everyone is different, the stages are a guideline only and doctors know almost nothing beyond the symptoms that collectively label your wife's disease. If you look at what she CAN do right now, and then do it, the future will be easier. IE if you can both travel, and have a destination she has always wanted to see, or to go back to a childhood home, or sail or swim with dolphins or take a course or build the gazebo you always said you would. Whatever it is, just do it. Build some new memories, and get the psp mind active and engaged for as long as possible. Just my thoughts, I think that mom has done remarkably well by staying engaged. She still uses her computer, and my personal feeling is that her staying active even if we had a few more falls, has held the disease off longer than if we had let the depression and fear of the future win.

[Christine47]

I think Susan 789 may have the same article. pspinformation.com/disease/.... CurePSP also has a Rating Scale devised by Dr. Golbe that you may find helpful.

[snapper in reply to Christine47]

Thanks for your help