Rory’s Always On Newsletter is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. This week is my fourth anniversary but it’s not one I will be celebrating. On Wednesday January 2nd 2019 a doctor at St Mary’s Hospital in Paddington told me I was exhibiting clear signs of what she called “Parkinsonism”. It would be confirmed later by a scan but it was not a big shock to me - after all, a neurologist had written to the BBC a few months earlier to warn that I might have Parkinson’s Disease after seeing my hand shaking in a live television broadcast.
As someone who is a PPIE contributor to a number of research projects, the way NHS data doesn’t link up and the bureaucratic hurdles are so frustrating. Whilst the ethical considerations are very important, some of the other aspects are unnecessarily slow and unwieldy. This is partly why clinical trials progress at a rate that is glacially slow. Well done to Alastair Noyce!
Thank you for this great insight into PC 3. There was one aspect of the research I was curious about - why the research didn't take into consideration was "gut health" of those patients. What's their everyday diet, exercise routine and normal everyday lifestyle looks like?
As someone who is a PPIE contributor to a number of research projects, the way NHS data doesn’t link up and the bureaucratic hurdles are so frustrating. Whilst the ethical considerations are very important, some of the other aspects are unnecessarily slow and unwieldy. This is partly why clinical trials progress at a rate that is glacially slow. Well done to Alastair Noyce!
Thank you for this great insight into PC 3. There was one aspect of the research I was curious about - why the research didn't take into consideration was "gut health" of those patients. What's their everyday diet, exercise routine and normal everyday lifestyle looks like?
PPMI = Parkinson's Progressive Marker Initiative study. I'm enrolled and love the lumbar puncture...Not!