In her latest post, Lou shares her excitement at getting her project underway and gives us an insight into her motivation.
So recruitment is underway and the first participants have been coming through! PROSPECT is up and running in Newcastle as is my Quality of Life project. So far there has been a lot of interest in taking part in both studies which is really heartening to see; it is a real privilege that people who are affected with conditions like PSP, CBD and MSA (Multiple System Atrophy) give up their time to help us to understand these diseases better. So thank you, to all of you who will be taking part or who are considering doing some research work in the future. We quite literally could not do it without you.
I conducted my first recorded interview last week, and the impact that it had on me was not inconsiderable. Taking surveys and doing examinations with people is one thing, but when people share with you the effect that their diagnosis has had on their lives…well, it was strong stuff. Part of my drive to do these interviews and analyse them thematically was to try and ‘describe the indefinable’, the personal experience of patients and carers. This sort of aspect is very hard to capture with just rating scales and surveys alone, and I am hopeful that these interviews will provide a real perspective for doctors and others with an interest in health care that is sometimes lacking in purely quantitative (number-based) work.
I thought it might be interesting to share snapshots of the extensive reading I do around these conditions, those facts that maybe don’t normally make it from clinician to patient… It is thought that the first description of PSP may have been from Charles Dickens, who describes someone with the facial features and slow movement of PSP. Of course we can never know if his observations really reflect someone who had what we now call PSP, but it really is pretty convincing.
With best regards to you all.