From WPC 2023
From WPC 2023
Being an advocate: what next?
Sally Bromley
Are you an advocate?
Could you be an advocate?
I’m definitely an advocate.
I know because I inform people about what it’s like, really like, to have Parkinson’s. I speak at meetings, conferences, to medical and pharmacy students, to residential care homes and more. You don’t need to go overboard, but do you tell anyone about what it’s like living with Parkinson’s?
We want improvements for our symptoms, better treatments and more information about how we can help ourselves. There’s a school of thought that we should self care. If a 10 year old with Type 1 diabetes can be trained to check their blood and self inject insulin why are we unable to care more for ourselves? With technology improving, rather than have in-person appointments, we could have smart phone technology to monitor our symptoms and these can be relayed to consultants, who can decide changes to our meds. Recall the most interesting talk we had from Kinan Mohammed from Neu Health. It’s down to each of us to tell our stories, to speak up for what we need, and to do so in a calm, manner. We do not want orange powder thrown but we do want better treatments. Ray Dorsey told us of the acceleration of all neurological conditions over the next fifty years.
Oxford Branch has a reputation for being active. Could we pull together and start expressing our feelings to those who are in positions to make change, and to make it happen?
We could set up a small working group to keep the branch updated on current projects and to communicate our thoughts. What do you think?
Parkinson's UK is the operating name of the Parkinson's Disease Society of the United Kingdom.
A registered charity in England and Wales (258197) and in Scotland (SC037554). 50 Broadway, London SW1H 0BL.