Handbook Parkinson’s Symptoms
‘My aim with the book is to create more understanding of our functioning and to create a better relationship between us and the people who support us.’
Who is this book written for?
Informal care givers, care providers and other health care professionals
(and of course, my Parki colleagues)
I wrote this book for those involved with people living with Parkinson’s, such as informal caregivers and professionals. It is a heavy burden to have Parkinson’s, but it is equally challenging to support someone with this complex and incredibly disabling disease. What we are able to do, how we feel and our ability to express ourselves, vary greatly. One day—or even one hour—may be completely different from the next. Sometimes we need you to encourage us, sometimes we may need to be slowed down. We’re often frustrated, and your support needs to be able to deal with the ups and downs of the disease. There is no method of support that always works. Just as we must be creative to function and need to have lots of resilience, we ask the same of you. This may frustrate you at times—we understand the feeling.
What support we need also varies in the different phases of the disease. In the initial phase we can still function reasonably well, but processing and acceptance are major challenges – both for ourselves and for our loved ones, who also need to deal with this unexpected bad news. In the next phase, more and more adjustments must be made, and we need more and more assistance. In a later phase we become completely dependent and may really struggle.
In this book I’ll answer the question: ‘Is this also part of Parkinson’s?’. And I’ll share tips on how to deal with the different symptoms.
My intention is to foster understanding and help guide you in supporting us. Understanding the disease in all its forms is crucial—there are already enough frustrations without a lack of knowledge. Parkinson’s is complex and can involve many symptoms. Without awareness of this complexity, misunderstandings may easily arise. I’m happy to help minimize these misunderstandings as much as possible.
I suspect that my fellow Parkis will also benefit greatly from this book. Looking at messages on various social media platforms, I regularly see the same question: “Is this also part of it?” I also want to inform these individuals and help them better understand their disease. We all choose when we are ready to learn about the full range of symptoms Parkinson’s can involve, so many Parki’s may not want to know everything. Keep in mind: we cannot predict if, when, or how severely we will experience potential symptoms. It’s likely that not all the symptoms covered in this book will be experienced by every person.
Not all questions surrounding Parkinson’s are answered in this book, such as questions about the possible causes and possible treatments. Fortunately, there are plenty of books and digital sources to consult about this. I’ve included a list of some of these resources at the back of this book.
Preview copy
A look inside the book
The author
Monique Thoonsen
Monique trained as a physiotherapist and pedagogue and is an expert in sensory processing. She writes, teaches, and consults on this subject and has authored four books in Dutch on sensory processing, two of which were translated into English: Sensory Solutions in the Classroom and Making Sense of Your Senses.
In 2021, Monique was diagnosed with Parkinson’s. As a healthcare professional with firsthand experience, she works with teams that support people with Parkinson’s. She noticed a significant gap in knowledge about the wide range of symptoms that can occur with Parkinson’s and how to address them effectively. This realization inspired her to create a comprehensive resource, listing the various symptoms in an accessible way while offering practical tips for those affected by Parkinson’s. Monique’s unique perspective, combining her professional expertise and personal experience, has shaped this valuable contribution to the understanding of Parkinson’s.
