PD to PSP ?

[Gymsack]

Has anyone heard, read or experienced that someone who having been treated successfully for many years for Parkinson's has evolved into having PSP? I know several who were originally mis-diagnosed with PD and the PD medication helped a bit but then the diagnoses was changed to PSP and then it accelerated . I am referring to almost like having both with the PSP becoming the main event.

[Bergenser]

We've seen the opposite - my mother-in-law was diagnosed with "atypical Parkinson's" at age 50. It was later described as Richardson/Steele syndrome. However she did not show signs of cognitive decline for over 20 years and when she died at age 82, it was established that what she had was "just" Parkinson's Disease. Please be aware that there is a variant PSP-P that initially presents very similar to PD with tremors and dopamine response. It is regarded as milder and may evolve into the more typical PSP-RS after several years.

Best wishes 🌻🌻

[LuisRodicioRodicio]

Hi Gymsack!

With the information that I have been able to obtain so far, at this moment most of the types of PSP disease have not a scientifically proven pharmacological treatment which even slows progression but there are several experiences in progress in different hospitals that have not yet reached definitive conclusions.

Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. After those years in which L-dopa works, the disease generally evolves to a type of PSP, frequently RS, CBD,...).

However if you didn't feel any difference then maybe it was not working for you and suffer from other variants of PSP.

“daddyt" point out on 2022-07: "It's important to note these are two different proteins involved with PD and PSP: Alpha-synuclein – PD and Tau - PSP. Levodopa Cardopa (Sinemet) has shown to have reduced the symptoms of bradykinesia in about 30-40% of PSP patients, depending on the variant. Its efficacy can lessen over time. My MDS has told me that a number of her patients went off the drug, then had better results the second time around. I have been on Sinemet for eight years and still benefit from its use alongside a daily exercise routine“.

"Lou T". has studied publications on parkinsonism and synthesized studies related to substances that could slow the progressive symptoms linked to PD and other related neurodegenerative diseases. It is interesting to read this document:

"Supplements we use to Try to Slow Parkinson's Progression (and other neurodegenerative disorders)" (2018-03-11)

smartpatients.com/conversat...

On most of PSP types the only thing you can do is counteract the symptoms…....but, despite how hard this disease is for everyone, it is posible to achieve a reasonable quality of life, even interesting.

On paper (2021-07-02) (whose reading I recommend):

pn.bmj.com/content/practneu...

Dr.James B Rowe, Dr.Negin Holland and Dr.Timothy Rittman.University of Cambridge Department of Clinical Neurosciences, highlight:

Hug and luck.

Luis

[Sun-flowerwearer]

Dear Gymsack

I read so many posts where carers state… looking back symptoms started x years before diagnosis …often 3 or 4 years but sometimes many years

Also many people state that initially they were given a diagnosis of Parkinson’s and given co lavidopa Parkinson’s drugs and they seemed to work but overtime stopped working as the PsP disease progressed.

It follows that they could think it’s Parkinson’s for years and then it progresses too fast or different symptoms appear that narrow down the diagnosis.

In my husbands case the Gap says it seems like Parkinson’s so I will refer you to a neurologist. The neurologist referred us to old age psychiatrist, neuro psychiatrist, an eye movement consultant, he had an mRi, they trialled Parkinson’s drugs which didn’t do anything for him and 9 months later said PSP. They had suspected PSP earlier but didn’t want to say until they had ruled out other things.

Whatever the diagnosis it’s dealing with what is presented each day x

[Gymsack]

Thankyou

I will be seeing a new Neurologist this week for the first time . The neuro I have been seeing is 150 Kilometers away and he has a very large practise so my appointments were 15 minutes while the new doctor has recently opened a part time office in the same town I live in and the first meeting will be 1.5 hours long . I will explore the possibility with her that I may have PSP . An old friend was given a diagnosis of Parkinson's that 2 years later changed to PSP and I had observed the differences , which can be described in a few words , but with very large consequence .

Thanks again