Are you in agreement with this table? - PSP Association

PSP Association

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Are you in agreement with this table?

LuisRodicioRodicio profile image

Based on the paper " Update on the Diagnosis and management of PSP.

Neurology of Aging. April 2016.

(Alicia Garrido, Dolores Vilas, Eduardo Tolosa)

Written by
LuisRodicioRodicio profile image
LuisRodicioRodicio
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24 Replies
Marie_14 profile image
Marie_14

Luis not sure I understand this to be honest! Might as well be the first one to say it? What did strike me was the heading. About the neurology if aging. We have had a number of young people all men I think who have been diagnosed with PSP. So where do they fit into this? I think PSP is being undiagnosed a lot of the time. People are told they have other things. Mainly Parkinson's but not always. Someone posted recently that their loved one was told they had Dementia. So it goes on? Can you explain these figures for all of us?

Marie x

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to Marie_14

Good morning,

The table is a synthesis based fundamentally on three papers on types of PSP:

- A new definition of PSP. PSP-blog.org, Mars 2016 (Dr. L. Golbe)

-Update on the Diagnosis and Management of Progressive

Supranuclear Palsy, April 2016 (Alicia Garrido, Dolores Vilas, Eduardo Tolosa).

- Recording + Notes from “Diagnosing PSP” Webinar, August 2017 (Kathleen Poston).

The purpose of this table is to help differentiate Parkinson's disease (PD) from different types of PSP as soon as possible.

If I had had a table of this type I would have started a specific physiotherapy and speech therapy program 2 years before we did it.

I am convinced that this would have greatly improved the quality of life of my wife.

Another objective is to obtain information from the HealthUnlocked group to correct errors and improve the table.

Hug.

Luis

wear1947 profile image
wear1947 in reply to LuisRodicioRodicio

Hi Luis, could you send me by private, the original of your table?

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to wear1947

Hi wear 1947,

Could you send me your e-mail? The table is a xls document.

I have some troubles with my e-mail. As soon as it is repaired i shall send you the table.

Hug.

Luis

wear1947 profile image
wear1947 in reply to LuisRodicioRodicio

Please, confirm your email. Then I will be noticed that you email works well, Regards

wear1947 profile image
wear1947 in reply to LuisRodicioRodicio

Hi Luis,

I have tried with a magnifying glass to read the table, it was impossible. Please, could you be so gently to send me the xls version of it? I have understood it is based on Toledo's et al. paper but modified with your experience and other Info.

Anne G, sent me a table with a time line for the CBD of her husband, I will try to compare it and if possible, to enrich the table with my own observations on the timeline of my sister.

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to wear1947

Hi wear1947!

Of course.

If you give me an e-mail address, I can send you the xls file.

The table is a synthesis based fundamentally on three papers on types of PSP:

- A new definition of PSP. PSP-blog.org, Mars 2016 (Dr. L. Golbe)

-Update on the Diagnosis and Management of Progressive

Supranuclear Palsy, April 2016 (Alicia Garrido, Dolores Vilas, Eduardo Tolosa).

- Recording + Notes from “Diagnosing PSP” Webinar, August 2017 (Kathleen Poston).

The purpose of this table is to help differentiate Parkinson's disease (PD) from different types of PSP as soon as possible.

Hugs

Luis

Kevin_1 profile image
Kevin_1 in reply to LuisRodicioRodicio

Hi Luis

Thanks for the link too - PSP-blog.org - great read - interesting.

Hugs

Kevin

wear1947 profile image
wear1947

I understand that everyone will try to match in the table, the symptoms of their loved ones registered by the caregivers. By sure they will found that no one can match a complete column. For instance, I was between two columns -in the case of my sister- PSP-P and PSP-GF. Looking for experiences at the forum I finally choose PSP-P. But, I need to wait until the next visit to the neurologist, at the end of february to confirm my suspicion. The physician is in contact with every pacient 30 minutes, more or less. It is necessary a help of the caregiver detailed information. Trying to answer Marie_14, as a lot of neurological disorders (bipolar people e.g.), only recentle science could define with more precision the early beginning of the symtomps. In the case of bipolar disease they can found 10 years before, very tiny behaviour details.

raincitygirl profile image
raincitygirl

Hi Luis;

It looks like you've taken info from the article and made a table of it? I don't know the information well enough to comment, but I like tables and find them a lot easier to get a picture from, than long medical articles! I wish there was more information like this on the types of CBD...if there ARE types...I don't see any info on that, the way there are types of PSP...

cheers!

Anne G.

wear1947 profile image
wear1947 in reply to raincitygirl

Hello rain city girl, in the table there is a variant PSP-CBD, as I can remember.

raincitygirl profile image
raincitygirl in reply to wear1947

Good eyes, you - I missed that! Yes, CBD is being called CBS by some experts now. I'll respond to Luis as some of the CBS info doesnt fit w my experience.

Cheers!

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to raincitygirl

Hi "Rain city girl",

Some comments tell me the PSP phenotypes table looks blurry.

The table is an xls document. that I can not attach on this chat.

I can send it the table to you or anyone who may be interested by e-mail if I have an address sent by internal mail.

Regards

Luis

Kevin_1 profile image
Kevin_1 in reply to LuisRodicioRodicio

Thanks - put me down for that - Hard to read. :)

email on its way.

:)

raincitygirl profile image
raincitygirl

Hi Luis:. The info in the Psp- CBS column doesnt fully match my husband's experience (He has CBD/S). He has a very faint tremor. He definitely has increasing cognitive loss.

FYI. Thank you!

Anne G.

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to raincitygirl

Taking note.

Thanks.

Luis

wear1947 profile image
wear1947 in reply to raincitygirl

Please, could you prepare a list of symptoms and the progrssion?. Something like, at xx years old we consulted a GP, forthe following symptoms. More or less 3 years later, he started with tremor in the other hand... or at the beginnig it the tremos was bilateral...or something else.

Please, try to consider that I am not a very demanding personne,, try to build a table, simple in WORD, with the periods of time -from up to down- and in the second column the symptoms.

Thank yuo in advance.

Warm regards.

raincitygirl profile image
raincitygirl in reply to wear1947

Hi Wear: Sure - I'll do that. I'll send it by private message through here. Assuming I can figure out how to do an attachment!

Cheers!

wear1947 profile image
wear1947 in reply to raincitygirl

Is actually Vancouver a rainy city?

raincitygirl profile image
raincitygirl in reply to wear1947

It is quite rainy in the late fall, the winter and the early spring! Late spring through early fall is usually pretty dry and mild to warm :-)

jmoffat profile image
jmoffat in reply to raincitygirl

So why the name rain city?

raincitygirl profile image
raincitygirl in reply to jmoffat

I joined in November LOL!!

Kevin_1 profile image
Kevin_1

Hi Luis

Nice piece of work.

Though I would not dare to agree or disagree. It's a little above my pay grade. :)

Thanks for posting it.

Best

Kevin

JCRy profile image
JCRy

Thanks for this, Luis. Really helpful. Sent it to my daughter who lives far away, to help her understand a little more.

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