Clinical Rating Scale for PSP

Hello everyone

I'm not sure whether the following (6 year old) article has been discussed on this forum, but I know some of you like to ask questions about the progression and prognosis of PSP.

There is a rating scale that has been used by neurologists and it may (or may not) be helpful. In the middle of this article (brain.oxfordjournals.org/co... there is a questionnaire about rating the symptoms of the PSP patient.

Most of it can be done by the carer (who usually notices/knows more than the doctors). The only tricky question is about saccades (those almost invisible eye movement in people without PSP but in PSP sufferers they are the observable little rapid shifting of the eyes, almost like nystagmus). Just guess at this one! Some of the words may have to be googled if you are unsure, but most are in reasonable English.

I know a lot of this article will be difficult to understand, but once you calculated a score (called the PSPRS score) for the person with PSP in your care, then there is a table (10) that suggests survival times (and other interesting tables).

I don't usually like to talk about survival times, but a lot of questions come our way about this subject.

In no way am I endorsing this method of assessment, nor do I want to promote it to this forum if it seems inappropriate and too "clinical".

{It could be a discussion point when you meet with your neurologist(s)}.

If the link does not work just Google "A clinical rating scale for progressive supranuclear palsy"

All the best.

[jillannf6]

hi i shall do this

thanks for hte input

lol JIll

[MoragR]

This was really interesting. In a way reassuring to see that symptoms like unexplained crying, (and sometimes laughter) which are recent new additions for my father, are part of the PSP. I haven't seen "emotional incontinence" mentioned before.

Many thanks for this link.

Morag

[ForMyDad]

I have not read the article yet, I will though. My Dad also has uncontrollable laughter just now which he hates the sound of as his voice has changed. He cries at things too that would never have affected him before.

Thanks for the information.

[Hidden in reply to ForMyDad]

Hello "ForMyDad"

The uncontrollable laughter or crying is called the pseudobulbar affect (and is given the name of emotional incontinence or lability, as MoragR noted above). My wife has mostly uncontrolled laughter, and also a gravelly voice (fortunately, only rare crying events).

It's all part of PSP! My wife also has stress incontinence, so when she laughs she urinates into her pads, so when we have a lot of laughing sessions, I have a lot of changing to do. It's all worth it to see her laugh and enjoy certain moments together!

[JoJo-K]

Thank you as always for your invaluable input.

Best wishes to you and your lovely wife

JoJo xxx