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.’
The book
Handbook Parkinson’s Symptoms
Together with 12 million others, I have Parkinson’s, and I would like people to better understand what that entails, and why we sometimes behave in a somewhat incomprehensible way. Parkinson’s is not just a disease that makes moving around difficult. There are many symptoms that have little or nothing to do with movement, which have a major impact on our functioning. For example, we also suffer from ‘stiffness and slowness’ of thought and emotion.
Unfortunately, there is still a lack of understanding in this area among many people, including those living with Parkinson’s, their loved ones, and healthcare providers. For many of us, those non-movement-related symptoms have the greatest impact on our daily lives.
That’s why I wrote this book. To help you understand our sometimes-incomprehensible behavior a little better. And while I’m at it, I’ll also share what you can do for us. All in accessible language.
The book discusses about 45 different Parkinson’s symptoms and provides answers to:
What’s going on?
What’s to be done?
What’s to be avoided?
To illustrate what we encounter in our lives with Parkinson’s, the book contains many anecdotes from people with Parkinson’s, their loved ones, and healthcare providers.
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
Anecdotes
From the book
“As a newbie in Parkinson’s – I was diagnosed 6 weeks before I read this book – the first introduction to this book was a bit overwhelming. Will I get all these problems? But during a gathering for people living with Parkinson’s, I realized that the disease is different for everyone. The ‘advanced’ patients also seemed to have only some of the symptoms. This is a book that describes dozens, perhaps hundreds of people and therefore much more than my own future. But if I experience symptoms, I’ll be able to easily find it in this book, with advice on what to do and what not to do and that is enormously helpful.“
Jan – person with Parkinson’s
“When I wake up in the morning, even after a short night, my body feels incredibly stiff. My left hand, shoulder, and arm especially feel as if they’ve been battered and bruised. Movement is both difficult and painful. Did a truck hit me while I was sleeping? I reach for the pills on my bedside table, hoping I don’t fumble them, and wait for them to kick in. Slowly, I shuffle down to breakfast and to another dose.
An hour later, after a hot shower, I catch a glimpse of myself in the mirror. There I am—finally! “Good morning,” I think. “Where have you been?”
Janneke – person with Parkinson’s
“Before I knew it, I was stretched out on the forest path, having fallen mercilessly hard. The pain wasn’t just physical – it hurt my soul too. So, this is what my fellow Parki’s are talking about; regular falls and their many consequences. I realized I was lucky that my reflexes still worked sufficiently this time, and I was able to catch my fall. I didn’t break anything. But will I be as lucky the next time I fall? And the next time? And the next? Can I trust myself to walk alone as the disease progresses? Fortunately, for now, I have regained my confidence.”
Monique – person with Parkinson’s