My review of new book “Interviews with People with Parkinson’s: The Shortcut to Hope and Healing” by my colleague Lilian Sjoeberg.
Here is the book review for the new book on Parkinson's (search for "Lilian Sjoeberg" on your local amazon and the book should come up).
“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.”
Here is the book synopsis from amazon:
“Parkinson’s is traditionally diagnosed as a disease that only gets worse over time. This book challenges that view.
Interviews of people with a Parkinson’s diagnosis from around the world reveal that it does not have to be this way. Instead, hope and self-reflection can be part of the solution to a better life. People can recover or improve, not via quick fixes or miracles, but with supporting psychotherapy and an understanding of why the body, due to chronic stress or trauma, has ended up reacting the way it does.
People from many different countries talk about their lives and experiences before and after diagnosis, whether or not they decided to take medication, and how conversations with Danish online therapist and biologist Lilian Sjøberg have given them not only hope but also noticeable improvements in quality of life and reduction in symptoms for a disease that is otherwise considered chronic and incurable. The commonality is that all cases seem to have arisen from a form of chronic stress or early trauma, and when this is addressed, hope and improvements are found.
The interview format allows the reader to draw their own conclusions along the way as the interviewees describe their journey of getting better, and also inspires readers without chronic illness to think about the relationship between mind and body. Finally, it gently prompts Western medicine to look at the human being with a broader, more holistic perspective than in the past.
"If you're trying to maintain a positive attitude after a PD diagnosis, this book is for you. Lilian Sjøberg spent years collecting stories from Pwp who have learned to live better with PD symptoms. These aren't superficial stories. These are in depth interviews that probe the mindset of people determined to live better and heal. Lilian, a coach and biologist, writes tips on how to apply candid lessons to your own life”.