PSP Variants

[daddyt]

And now you know... more.

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Tim

[Sharsuk]

Dear Tim,

Thanks for the informative article. My husband's diagnosis is PSP-PAGF plus PSP-SL.

Regards

Usha

[Bergenser]

thank you Tim

This set of variants was slightly different from the previous articles I’ve read.

The neurologist never said much about variants. I noticed however, after a clinic visit in 2023, that my husband’s diagnosis had been updated from PSP to “PSP - Frontal”. At our last clinic visit it was noted that his presentation also included some CBD features. I think it is normal that this changes over time as the illness progresses.

I read an article once that was studying “care needs in PSP by variant”. It did not surprise me to learn that the frontal (behavioural) variant(s) required more care and help from multiple disciplines.

I suspect that awareness of the variants may be helpful when preparing for Continued Healthcare or other healthcare assessments.

Something to discuss with the neurologists as well and to educate the primary health team about.

Please keep on doing what you can for awareness and understanding 💜🌻

[daddyt in reply to Bergenser]

There can be overlapping symptoms, I also present with CBD. My diagnosis was PSP-P FTD bv1. It is a complex disease with very nuanced symptoms, with no two people experiencing the same. Knowledge of these different variants is most helpful when preparing for continuing healthcare. BTW... there maybe as many as fourteen variants. It's helpful they can make a distinction between the variants, but it would more helpful to find a treatment, and ultimately, a cure.

Tim x

[messier]

I do wonder about the definitions of the variants because people's symptoms increasingly overlap in different ways. So what starts off as one variant changes to another. Mum started with CBD but developed PSP eye gaze problems later. I'll only know what it really was when they complete the analysis of her donated brain.

[Harshacceptance]

this is an interesting topic specifically noting Bergensers on continuing health care.

Dad diagnosed with Parkinson’s dec 19 had his diagnosis via DAT scan changed to CBD.

How his disease has presented over the years and its focus areas has been alarming.

At the CHC reviews I’ve always printed and waved the medical professionals printout for what is CBD as most people look at you and think do you smoke it … I’ve not met a single person who has heard of it outside those who care for dad.

It’s far too easy for it all to be collapsed into Parkinson’s when in fact the variations of PSP / CBD present quite different health needs - there is no question as I am sure everyone will agree that in the “end stages” of such a horrific disease there should be an automatic award of CHC.

CHC as we know is a minefield yet it’s vital to support patients and their families given how very unpredictable, intense and complex these diseases are …

Thank you for sharing