John Duguid from the Derby Branch of Parkinson’s UK has kindly given me a book that is just what I’ve been looking for: Brain Storms, a history of Parkinson’s research published last autumn by science journalist Jon Palfreman, himself diagnosed at age 60. He writes:
‘It’s sometimes said that a diagnosis of Parkinson’s is not so much a death sentence as a life sentence… The issue … is what we make of that life sentence.’ (p. 240)
For me, Palfreman’s book has provided new opportunities to make something better and more hopeful of my life sentence.
Palfreman’s book makes Parkinson’s research easily understandable – just what the East Midlands Research Support Network is about. He provides a fascinating account of the history and current state of Parkinson’s research and of the people involved in it. It is a complex and sobering picture, but just when I began to despair he points to more positive developments without raising false hopes. Along the way, I even got a clearer picture of what alpha-synuclein is, and why a phage may hold the key to significant improvements not only for Parkinson’s but also Alzheimer’s – an unexpected and very welcome prospect!
Palfreman not only covers the past and present of Parkinson’s research, he also mentions key issues such as the placebo effect and personalised care:
‘This leads to a striking conclusion. While the medicines may be fake, the placebo responses going on in our brains must be real, mediated by actual neurotransmitters… Whereas researchers are wary of the placebo effect, I view it as a positive and encouraging phenomenon. The brain, it seems, can work like a compounding pharmacy and synthesize chemicals like opiates, dopamine, and who knows what else.’ (p. 229f)
‘As we know, Parkinson’s is a highly variable disease. It presents at different ages, with different clinical subtypes that progress at different rates, in people facing widely different socioeconomic circumstances. And because everybody’s Parkinson’s disease is different, clinicians are increasingly arguing that the care of people with Parkinson’s needs to be “personalized” as much as possible.’(p.233)
This book is a must, not to say a no-brainer!
Jon Palfreman, Brain Storms. The Race to Unlock the Mysteries of Parkinson’s (London: Rider Books [ www.riderbooks.co.uk ], September 2015)