I’ve written a review and update on research in PSP published in ACNR. There is a lot of really good work going on in PSP that I think deserves a wider audience. My research looks at networks in the brains of people with this dementia, along with corticobasal degeneration (CBD).
I don’t think a cure for PSP or dementia in general is that close, but drugs currently being trialled may slow down the disease course. Maybe we’ll find something similar to Riluzole in motor neuron disease which adds about 3 months of life.
One of the main messages of the review is that these drugs are coming and we need ways of measuring disease to understand their impact. This is really true across all dementias, including Alzheimer’s disease.
ACNR may not be the highest impact journal, but it’s relatively widely read among practicing neurologists. Most neurologists probably don’t think much about PSP, which is fair enough as they’ll see it only rarely. GPs will see even fewer people with PSP. But there are lots of rare diseases out there, particularly in neurology. Even the European Union is taking rare diseases more seriously these days, as taken together they are not so rare. Early diagnosis and appropriate management is as important, if not more important as for common problems.
If you want to know more about PSP or CBD in particular, the PSP association is an organisation that provides reliable information about the diseases and support for people with PSP/CBD and their families.