Description of PSP

[nayook]

Hi Everyone,

I'm wondering if anyone has attempted to write a general description of PSP which could be filed and printed or copy/pasted as necessary when a friend, acquaintance or professional asks about the condition. It can be upsetting and stressful to try to explain how awful the condition is. When I do attempt to verbally convey what it is like, I always realise afterwards that I've forgotten to mention some key aspects of the condition. I guess it is easy enough to find a list of symptoms, but I'd like to see a document that was broader than that in it's scope, possibly addressing also, issues like stress on family and primary carers, rate of progression, change in personality of the patient. Right now I'm feeling quite wrung out, and not up to tackling the task, so I'm throwing it out to you all as challenge. Does anyone want to "pick up the gauntlet?"

Lynne

[Hidden]

Hi Lynne,

That is a wonderful idea & would be a heavy (gaunlet) task.

Do you think any of the medical students might take this on as part of their schooling? We definitely need young folks to pick up the gaunlet (in so many ways).

Hopefully someone will know someone who knows someone. . . OR maybe we could start a new post here & our understanding friends on this forum could post 1,2 or 3 items concerning their battle with PSP. I would be glad to help in way l can.

Sending gentle hugs & love to you both... Granni B

[nayook in reply to Hidden]

Thanks Granni B. We'll see how much further interest is shown by others and see if it leads anywhere. Jeff's reply points to an excellent description of the "clinical" symptoms, and I'm grateful for that. But such a list only scratches the surface in describing this horrid condition. What is missing is a sense of the frustration, helplessness, emotional distress, etc that is the ongoing battle for sufferers and their carers. I think it's that aspect that others don't always "get".

[easterncedar]

Check with the psp association. Folks have in the past mentioned that they provided something along the lines you mention. Not being in the UK I never followed up on it myself.

[nayook]

i seem to have lost Jeff's reply to me, so can't reply to him! I hope hell see this. He sent me this link.

nhs.uk/conditions/progressi...

Thanks Jeff. See my reply to Granni B for my thoughts. Actually reading your series of comments about caring for Larry gets close to conveying the despair that we have to deal with, though you seem to deal with it with great compassion.

Lynne

[Kevin_1]

Hi nayook

I'm so sorry to hear of your diagnosis.

PSP is generally regarded as a gene disorder which is not inherited. However there is some small scale research which has identified rare cases where it appears as if some families have inherited the disorder. These cases are thought to be exceptionally rare and the were calls for more research on this. There is a huge amount of work going on to get a proper diagnostic tool (Biomarkers) which will enable more focussed developments of cures and to enable more precise research on how the illness progresses. Last time I looked there were some eight different sub types and cousins of PSP. Progress is being made at nailing it down.

Meanwhile this link might provide what you need. The articles for professionals are quite readable.

pspassociation.org.uk/

Best of luck to you and welcome to the forum.

Kevin

[rriddle]

Check out this list of PSP resources here:

brainsupportnetwork.org/edu...

I'm sure one of these has what you are looking for.