PSP-R vs. PSP-P

[fothergilla]

Has anyone have any information about the different types of PSP, such as PSP-Richarsonian, and PSP-Parkinson type?

[Heady]

What can I say, ones s**t, the others c**p!!!

Lots of love

Heady

[Satt2015 in reply to Heady]

Spot on heady!!

[GonnaMissDaddy in reply to Heady]

Dear Heady, having read your reply here just after reading the status of the sweet wife who's husband took his last breath in the sunshine... I just want to say thank you for making me smile through the tears. You silly goose haha I love ya! ~Sheila

[Heady in reply to GonnaMissDaddy]

Unfortunately, I replied just after reading the same post!!!

Sorry, forgergilla, I wasn't much help last night. Don't know is the simple answer. But my thoughts are just the same!

Lots of love

Heady

[Patriciapmr]

My feelings exactly! xx

[Christine47]

Dr Golbe posted the information you might be looking for March 13 psp-blog.org/2016/03/13/a-n..., but I think Heady's is better.

[easterncedar in reply to Christine47]

hmmm, that link doesn't work for me. But searching "Golbe" would get me there, I suppose.

[Christine47 in reply to Christine47]

Sorry. I went to the link and typed in March in the search box. ...In lieu of that, here is the part I thought of interest. "The new criteria recognize the various phenotypes of PSP. They are PSP-Richardson syndrome (about 55% of all PSP), PSP-parkinsonism (30%), PSP-frontal dementia (5%), PSP-ocular motor (1%), PSP- pure akinesia with gait freezing (1%), PSP-corticobasal syndrome (1%), PSP-progressive non-fluent aphasia (1%), and PSP-cerebellar (<1%). The remaining few percent are combinations of these or still-unrecognized forms.

The new criteria also delineate various “oligosymptomatic” or “prodromal” (the wording remains unsettled) forms, which may or may not develop into one of the diagnosable phenotypes. For example, there is now evidence that someone in the PSP age group with gradually progressive gait freezing for several years and a normal MRI, even without other abnormalities, will almost always prove to have PSP. The same is true for someone with bilateral rigidity and bradykinesia who fails to respond to levodopa and has some sort of nonspecific, undiagnosable visual symptoms or dizziness. Neither of these patients would satisfy the proposed new criteria for any of the PSP phenotypes, but they may still be worth identifying for inclusion in a longitudinal cohort study of people who are at risk of developing PSP. Our new criteria do that.

I’ll keep you updated."

[fothergilla in reply to Christine47]

Thanks a lot for the info. Very interesting

[Katiebow]

Got in one Heady. Xx

[easterncedar]

Richardsons is typically evidenced by cognitive problems, p is for Parkinsons, and so movement is more affected. Lots of info going back years on this site. The search function is very handy! Anything from "Strelley" is sure to be good. Unfortunately he left and his profile was removed after his wife died, but you can get lots of info on everything by searching his name, and finding where folks replied to him using it.

[daddyt]

I've heard that research is sub-dividing groups of PSP further. I am diagnosed with PSP-P, the difference being that I do experience tremors... not to the extent that PD patients have. There is also the freezing gate issues etc., at least that's what I'm told.

[fothergilla in reply to daddyt]

I suspect that is what my Dad has as well. He tremors, and it will subside with levodopa. Have you experienced voice and swallowing difficulties?

[daddyt in reply to fothergilla]

My throat muscles are beginning to weaken and my voice has changed... just over a year now- much softer than before.

[easterncedar in reply to daddyt]

That must be a hard realization to deal with, Tim. I hope you have a speech therapist helping out? Have you checked out the LSVT Loud program? The exercises his therapist gave him made an amazing difference for my guy, although his speech is now fading faster than we can call it back - we still are in there fighting for it! Certainly his swallowing has been preserved - and that was really a terrible problem 5 years ago, and not at all so much now. Love and peace, Ec

[daddyt in reply to easterncedar]

It's a little troublesome. What bothered me the most was how quickly everything turned... went to bed one night "normal" and by the next morning it had changed. There was nothing progressive about it. To be truthful, that kind of a quick change in symptoms scares me and I fight to stay ahead of it. The SLT has given me a few strategies to manage the swallowing issues... thickener for my fluids, sauce on all my meat, smaller pieces of food (no to the point of minced or pureed yet). Oral "hawking and gawking sound exercise and so on. I shall check out the LSVT Loud program further. Thanks you. Warmest regards, Tim

[easterncedar in reply to daddyt]

That must be terrifying. If it can be of any comfort to you, I have to observe that we have had some symptoms come and go, with long plateaus of stability. Ten months ago, my guy was slipping fast, and now he's giving the aides and me fits because he insists on walking, and I am having trouble tiring him out!

[daddyt in reply to easterncedar]

Thank you. Ah... the ebbs and flows of PSP. I know them all too well. On my good days I almost feel guilty that others are suffering worse than me. On my bad days... I feel like I'm the only one suffering. PSP... the ride of my life.

[easterncedar in reply to daddyt]

I really do appreciate your sharing your experience, as my sweetheart can't. Thanks, Tim. It means a lot!

[Gracie_Girl in reply to easterncedar]

I agree Easterncedar, my sister definitely responded to LSVT Therapy. As soon as January comes around, we can get Medicare to pay for it to resume. She hated doing it (lol), but it makes such a difference.

[Gracie_Girl in reply to Gracie_Girl]

Daddyt,

I would like to Thank you too, for your valuable insight. And I'm so sorry you are having to deal with this dreadful disease.

I wish you all the best and give you lots of (((((Hugs))))).

Becky and Gracie

[daddyt in reply to easterncedar]

Thanks. I will look into it with SLT. Sometimes I don't mind not being heard... someone might actually hear what I'm saying and take offence to it (:

[cabbagecottage]

If any of you have a problem with mucus collection in mouth throat , esp preci ally at night.

Try making up a solution of water with a spot of salt sugar and bi carbonate of soda and put it into a small spray bottle .

Spray up one nostril while holding the opposite side , two sides ,

The GP advised me to do it when I had problem with nasal drip . It helped me and I thought it was worth trying for John ,

Of course this is the person can manage to control the sniff .

It has made a difference to John and I am not getting as disturbed at night . I have Ben doing it for a week . Do it at least morning and night .

[rriddle]

You can find information on the two main types of PSP on our PSP education page:

brainsupportnetwork.org/edu...

You can find blog posts about the five types of PSP and related topics here:

brainsupportnetwork.org/?s=...

[daddyt]

I am diagnosed with PSP-P and Frontal Temporal Dementia. It really doesn't matter, like Heady said... it's all s##t. I'm pretty sure you can google the different sub-types, I know the information is out there.