new to PSP

[Slyone]

Iwas diagnosed in May with PSP about 4 yrs ago with Parkinson’s but was in because I wasn’t showing regular signs of Parkinson’s have been to a movement disorder clinic & possible i have PSP

[LuisRodicioRodicio]

Hi Slyone!

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“.

Zerachiel point out: With PSP, when the body is under stress or trauma like having an infection the PSP symptoms can increase and new ones appear; after the infection or trauma has cleared these new PSP symptoms can then start to go away although you will find that you don't get back to where you was before the trauma or infection.

Sinemet (levodopa and carbidopa) is usually prescribed to see if the PSP variant is responsive to the drug, usually if there is no improvement the drug is discontinued, gradually.

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:

“For many cognitive and behavioural symptoms, support, tolerance and environmental measures are more effective—and safer—than medication. Experience (anecdote) and cohort studies dominate the evidence base, over randomised, controlled clinical trials. So, focus on medications that aim to reduce those symptoms that trouble the patient, or place them at risk. The following sections are a guide, not a substitute for clinical judgement. Ask the patient which of all the problems caused by PSP actually bothers them—the answers may surprise you! PSP robs people of so many abilities and aspirations, but professionals often unwittingly remove the patients’ autonomy. Patient-centred treatment is more satisfying, more likely to succeed and better for risk-benefit decisions.”

I hope to be useful.

Hug and luck.

Luis

[ckb4]

hi!.. I’m v sorry you are dealing with this. My sister ( age 80) is in end stage PSP after diagnosis one year ago; however, because she lived alone the last many years, she had ignored many symptoms and her primary care doctor finally sent her to a neurologist. I would suggest you spend time talking to your family about this disease and ‘getting your affairs in order.’ I have seen why they call it ‘progressive’ It can start progressing v fast with the symptoms and your ability to handle things and make decisions will be altered. There is no medication to cure this totally debilitating disease that comes on slowly than speeds up like a silent train taking one’s body and mind week by week. This is the time to re-connect with family and make plans for your care once you are no longer able to function at a high level. Also, prayer…. connecting with God for direction, guidance during this crazy disease , and for strength and peace of heart of heart as you go through this….abd if you haven’t seen a picture of your MRI , ask to go so. If it’s PSP, you will see a ‘bird on the brain’ outline of a hummingbird, I understand this is the definitive diagnosis sign. My sister is in long term care w/ a one- on-one aide the last 8 months due to ‘impulsivity’ of trying to get out of bed on her own. So many things can happen with this disease, it’s good you know what it is now also you can prepare for what may come. God’s strength and love be with you . I will pray for you.