It’s great to see Progressive Supranuclear Palsy make the Guardian. This sort of exposure in the national press can only be good to raise the profile of unusual forms of neurodegenerative disease. And, the article quotes my good friend and colleague Ian Coyle-Gilchrist, who is doing some excellent work putting in the hard yards around Cambridgeshire and Norfolk to find out exactly how common are the linked diseases of Progressive Supranuclear Palsy, Corticobasal Degeneration and Frontotemporal dementia.
My only gripe with the article is the quote I see from time to time: ‘His initial referral to a specialist brought no answers. “The neurologist said: ‘I can’t do anything for you’,” ‘
Whilst it is true there are no treatments to slow down or stop PSP, there are plenty of medications and information available that can help help everyday life.
I’m writing this in a bit of a rush, but the first 5 that come to mind in PSP are:
- Being aware of falls, seeing a physio to see how to get up off the floor
- Spotting swallowing problems early and seeing a speech and language therapist
- Addressing palliative care issues where appropriate
- Using appropriate drugs for the movement problems, such as high dose levodopa (and stopping it when it doesnt’ work!) and Amantadine
- Supporting applications for continuing care
Notice, most of these do not involve tablets. There are of course, a bucket-load more ways in which doctors may help people with neurodegenerative disease. I don’t want to give the impression that the future for people with PSP is rosy and that all problems can be treated, and I’m often worried we and our patients over-estimate our abilities to ‘treat’. But we can still identify issues and address them to the best of our abilities.
The PSP association’s helpful care pathway formalises a lot of the ways medical professionals can help.
I hope that my medical colleagues would change their wording to ‘I may not be able to provide a cure, but let’s look at what we can do….’