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…
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.
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
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