So, We Progress, Parkinson’s and I: Reviewed by Jon Stamford

SO WE PROGRESS, PARKINSON’S AND I – Terry Rummins

It is a popular maxim in the publishing industry that everyone has one book in them – one novel or cookbook. And that’s it. How many writers release their first novel to huge acclaim only to find themselves, at best, unable to produce a second of commensurate power. At worst, the second novel never materialises. Lost in a maelstrom of apathy and publisher lunches. 

In Parkinson’s, the problem is the same if not more acute for writers. They start out with confidence. They have something to say and the ability to say it. Most commonly, they will be in the early stages of the illness – maybe the first five years – before the condition has had a chance to bare its teeth. Writing is easy, buoyed by the newfound creativity from the dopamine agonists. The war on Parkinson’s is a phoney war. 

By the time it gets to 10 years post diagnosis, a full decade in which Parkinson’s has revealed itself in all its chameleon forms to them, apathy is the dominant feature of their lives. Their energy levels are at a low ebb – writing a letter is daunting enough, let alone a book. And this is a pity, because by the time they have had Parkinson’s for a decade they have something important to say. No longer is it a phoney war. They have developed the tools you need to tackle the condition well at exactly the time when their ability to communicate those skills is waning. 

I lose track of the number of people who write profusely about the early years of Parkinson’s but who somehow fall off the radar when it starts to get tough. There are very few books covering that critical “moving on” phase of Parkinson’s. And this is an irony, because this is the point at which you begin seriously to need guidance. 

Terry Rummins has grasped the nettle of that second book. Her first book “So I’ve Got Parkinson’s Disease”, published in 2012, was an account of those first years, written at the end of that first decade of illness. The book was good, well written and practical. It was optimistic – Terry is by nature an optimist – but realistic as well. It did not paint a false picture of the condition. Terry is a psychologist by training and therefore well equipped to discuss the condition dispassionately. The first book was well received by all I know who read it.  

The second book “So We Progress, Parkinson’s and I”, recently published, is of course important. It covers those transitional years from 10 to 14 after diagnosis. Those years that nobody writes about. Those years when Parkinson’s ceases to be a minor irritation and becomes a major encumbrance. Those years when it’s no longer a joke. These are the years people really need to hear about and these are the years that they so rarely do. 

Terry has done the community a significant service with this book. She tackles the subject with honesty and positivism. And the issues she tackles are above all “second decade” issues. The first book and chapter titles like “stress”, “drugs”, “movement” and “exercise”. The hallmarks of the new book are “crises”, “a shock”, “simplifying in order to think” and “who am I?” It doesn’t take a genius to realise that these reflect the enhanced realism of that second decade.

Terry does not have all the answers by any means. Who does. But it’s more important that she knows what the questions are. And this book amply lays out the questions people need to think about. In that second decade, you need to up your game because the Parkinson’s is turning up the heat as well. Terry recognises this. She talks practically about how to deal with “off” periods, the necessity of charts and self-discipline. The book is again practical, still positive and realistic. 

The first book was good. This is better. The first was valuable, this is important.

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