Tag: book

I may be biased, since, as a person with a Parkinson’s diagnosis myself, Lilian Sjoeberg has been my therapy coach for a couple of years, in which time she has helped me to significantly reduce my symptoms, keep my drug burden to a minimum, and improve my quality of life… but I really do feel this book is essential reading for anyone who has a Parkinson’s diagnosis. It is also essential for anyone who cares for, works with, or provides services to, folks with PD. In fact, the findings of the book translate well to many other chronic conditions, and should even be of interest to healthy people who want to avoid chronic illness in the first place.

Recently* UCLA Health movement disorders neurologist Dr. Indu Subramanian “… drew upon patient voices and lived experiences to identify the common pitfalls of Parkinson’s diagnoses.” She says “how a diagnosis is delivered and the words that are used can impact a patient for years, with some patients falling into long periods of demoralization and hopelessness… in fact, I think it’s a very treatable disorder… giving hope, giving the patient agency is a critical part of the [diagnosis] message.”

This book aims to provide a significant part of that proposed solution, and to bring back hope for those who are already under a curse of doom due to a medical authority figure giving them diagnosis of hopelessness.

Lilian Sjoeberg lets the people with Parkinson’s diagnoses who are bucking the “it’s all hopeless” message, and are reducing symptoms and/or the amount of drugs they are taking, speak for themselves, by pulling together transcripts from a series of life history interviews she has done with them, and essays they have written.

The main finding of these shared life histories is that Parkinson’s is the result of life long accumulated stress and trauma, a life lived in fight or flight, and eventually getting stuck in the freeze stress response. This is a much more hopeful story than that of irreversible cell death in the brain of unknown origin, as it allows us to actually make sense of what happened to us, and see that Parkinson’s is the body doing what it was designed to – to help keep us alive.

The solutions then reveal themselves as stress reduction, trauma healing, becoming a calmer, more relaxed person, and becoming more stress resilient. The interviews and essays provide real world examples of the types of strategies that these folks with a Parkinson’s diagnosis have found helpful, and tell of the successes that they are having. Their lived experiences hence provide templates for others to follow on their own healing journeys.

*”Delivering the diagnosis of Parkinson’s disease- setting the stage with hope and compassion”.