What is PSP?

[Kevin_1]

This is a superb lecture by a neurologist at a Cure PSP Conference last year.

~I expect many here will have watched it, but maybe worth flagging up as it covers some of the breadth of the spectrum of the disease.

Waving

Kevin

youtube.com/watch?v=-Plhyzs...(Not working as expected?)

[Motts]

Good Morning Kevin and Thank You for posting . . . it will help me in making my decision. My mind has been confused lately - do I or don't I want to follow through with discovering a diagnosis. Sending you and Liz Hugs - Granni B

[Kevin_1 in reply to Motts]

Hi GB

That's a very good question.

I guess that as long as you are sure that the condition is untreatable then it makes little difference.

Living in the moment is all any of us can do.

Hugs back at you

Kevin

[Motts in reply to Kevin_1]

I started on this site to gather information to guide my husband down the path of carer . . . I worry for him and want him to take care of himself while caring for me. I am certain that you know Liz wants the same thing for you.

We added to our ax collection - hubby bought a bigger more manly one. I can not throw but we are gathering our friends around for this silly business and laughing a lot. So Ax Throwing Is Good Medicine. Stay Strong - Granni B

[Kevin_1 in reply to Motts]

Love, fun and laughter are great things

I looked it up - seems it's got over here too.

youtube.com/watch?v=vz3E-FP...(Not working as expected?)

Keep throwing!

[Janet5 in reply to Kevin_1]

What a common sense reply

[Kevin_1 in reply to Janet5]

Chuckles - no-one has accused me of that before

[raincitygirl in reply to Kevin_1]

It's the return of the Danes and Vikings all over again!!

[Kevin_1 in reply to raincitygirl]

As a 'Saxon' - They were damned pesky - You couldn't go to the loo leaving your mead on the table without a hoard coming in pillaging and burning. And you couldn't order another round because the barman would be dead or some such silly excuse.

Inconvenient times!

Waving

[Kevin_1 in reply to raincitygirl]

But gently, I remind you it was a Canuck who got all this going again... We know how it goes. First the axes and then you build the boats and on arrival you'll say, "Just Tourists - Hi! ".... You'll never find my mead!.. It's so hard to find I've had to write 'Mead here' so even I can find it... Um

[raincitygirl in reply to Kevin_1]

Yep - those lumberjack games build some good skills, eh?

If it's a Canuck throwing the axes around they'll just be hunting for beer anyway... Your mead will be safe!

... And maybe a bacon buttie....

Lol 🍁

[Kevin_1 in reply to raincitygirl]

OK - I'll leave a bacon butty on the porch... But I'm not daft you know... They'll come rampaging at us in all that Ice Hockey armour and stuff (Yes I've watched the videos... they make Vikings look like day trippers)... But I have a secret weapon... I have a whistle

Yes, I know...Canuck hockey rampager's can't hear a whistle ...but I try.

Thinking of you... I know its not easy.

Hugs

xx

[raincitygirl in reply to Kevin_1]

Its all you can do. Keep calm and think of England

XX

[Kevin_1 in reply to raincitygirl]

I edited my post - please re-read - and thinking of England is a grim thought right now - We seem to be set on a bizarre suicide course with Brexit... One day folk here will realise we are just a small island which needs to collaborate with friends... Sighing

[raincitygirl in reply to Kevin_1]

I know what you mean - many of our countries seem to be on a self-destruct mission, flinging tweets on important subjects out like schoolyard taunts; being insular and nativist, (yes, Canada too!) augghh! I try to have faith that sanity will reign eventually and we will all course-correct.

Thx for the good wishes: it's still a surreal experience, and I find it so hard to believe a person so vital and real and loved can just stop existing. Where are they? How can they just end?? I really understand author Joan Didion's title for her memoir of her bereavement "The Year of Magical Thinking"

Onward...as so many of us here do..and will.

XXX

Anne

[Kevin_1 in reply to raincitygirl]

Yes, its as if the world has gone bonkers.

The pendulum always returns in time.

I hope.

xx

[Pavaga]

Thanks Kevin,

Excellent video. I have a question to see if you can help me, I have asked the Neurologists but I do not have a clear answer yet.

What is consider onset of the desease? the time when all the symptoms started or the date PSP was diagnosed.

In my case with all the valuable information I have received from the group and conferences like this one, it helps me to organize and plan our future specially when Dave get to a point of total immobility, thanks a lot, Patty

[Kevin_1 in reply to Pavaga]

Hi Patty

The disease was possibly active for quite long time before you saw any symptoms at all. How long I don't know. A bit like a seed growing... we only know it's there when it finally pops its head above ground.

So the real onset date is unknown to all. However 'first symptoms' is a good date to remember for clinical interviews. It gives the neurologist an idea of the speed of progression.

The diagnosis date is simply that and quite a few folk hve earlier diagnoses before the PSP became clear.

So Liz had a year of a labyrinthitis diagnosis before it became apparent that her falls were due to something more serious. So we date her first PSP symptoms to the beginning of the falls.

I hope this helps.

Best

Kevin

[Pavaga in reply to Kevin_1]

P.D. I do not have clear if onset is the first PSP symptom or the date of diagnosis.

[Kevin_1 in reply to Pavaga]

Sorry

I've just seen this. I would take the first neurological symptoms as the onset even if they were labelled as Parkinson's at the time.

[Pavaga in reply to Kevin_1]

Thank you very much. 😺

[jmoffat]

Excellent video

Thanks Kevin

[Pavaga]

Thanks Kevin, so can I interprete the word "onset" in PSP as one of the first PSP symptoms we recall? Sorry about this question again, but I think it is more my English language applied to medical terms. Thanks, Patty

[Kevin_1]

Hi Patty

Yes, most people would call onset the time of the first symptoms.

Sorry to complicate things... I was dotting and crossing my i's and t's.

Not always a helpful thing.

[DeborahRamsden3602]

Excellent video. Something I think everyone on the group should watch. Really sums things up well. Thanks. Debs xxx