Summary article from CurePSP

[Bergenser]

I've just read this article called Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of CareI'm sure this will have been shared here previously, I found it really helpful for where we are currently, to answer a number of questions regarding treatments, medication and options.frontiersin.org/articles/10...

[Millidog]

Thank you. This is informative and really useful

[Sun-flowerwearer]

Really good article and I’ve screenshotted different pages to show to the relevant health care visitors we have. The OT one is particularly relevant to us at the moment. Thank you for posting the article

[Jaguar86]

So good,. Helps to understand the cause of the symptoms and so useful when talking to Health Professionals who mostly say “never heard of it” the pharmacological inclusions are very useful too. I know it uses medical terminology (lucky for that I am a retired RN) but still so much info worthwhile for all of us.

[messier]

I can see some people would find the paper useful to provide information about what happens in PSP/ CBD. But I confess I found it disappointing and rather misleading. It gives the impression at the start that there are all sorts of possible treatments to manage PSP/ CBD. But it then goes on to point out the reality that most things have little effect. On careful reading it’s clear that anything they suggest is only useful in the early stages. It give little help with the complications of the late stages.

[Bergenser in reply to messier]

I have to agree, the advice reflects there is no cure and no effective treatment, only symptom management. At my husband's current stage, that makes a difference and we are trying anything e.g. he's been on a drug trial and we're now trying to get to continue a drug that at best has a temporary effect. Temporary relief and months of higher functioning is priceless to us at this stage. 💔🌻

[pmcdonough1]

My husband was on Donepezil improved his swallowing and quality of life. First 10 Mg then later increased to 20 MG

[Granny29335]

Thank you for sharing this!