The Patient Perspective

This section covers the stories of people with Parkinson’s Disease. It was initially started with patient profiles written by Jon Palfreman, PhD, but since 2023 it has been revised to include PwP’s personal entries, covering their perspectives and insights. If you have suggestions for a new post in The Patient Perspective, please tell us and write to: jpd@iospress.com.

Patient’s Perspective - The Will to Live a Good Life

Posted by Pim van Holst, on 5 February 2024

By Sharon Chakkalackal
sharon.chakkalackal<@>gmail.com

This is my journey of how I came to be diagnosed with Young Onset Parkinson’s Disorder (YOPD) symptoms at the age of 38.

Last comment on by Patti Manners,

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The Importance of the World Parkinson Congress for People with Parkinson’s

Posted by Pim van Holst, on 29 August 2023

Attending the World Parkinson Congress for the first time was an awe-inspiring and transformative experience, bringing together a global community of people with Parkinson's disease, sparking empowerment and advocacy among attendees.

Last comment on by Patti Miller,

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Profile: Sara Riggare

Posted by Jon Palfreman, PhD on 20 March 2014

In October 1984, a thirteen-year-old girl called Sara sat in a small village hall in northern Sweden enjoying a folk music concert. “Everyone was clapping their hands and stomping their feet,” Sara recalls, “and I wanted to do the same. I could clap my hands, but when I tried stomping my feet, I discovered I couldn’t. It was as if the signals couldn't go from my brain to my feet.” This is Sara’s earliest memory indicating that something was wrong.

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Profile: Tom Isaacs

Posted by Jon Palfreman, PhD on 28 October 2013

In 1996, a 27-year-old London-based surveyor called Tom Isaacs was diagnosed with Parkinson's disease. Like others before him, he struggled to come to terms with his new identity. As he put it, “The truth was that I was now trapped inside a body that was now ageing at an alarming rate and was often incapable of responding to the demands put on it.”

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The Patient Perspective: Joel Havemann

Posted by Jon Palfreman, PhD on 14 October 2013

Every Parkinson’s patient is curious about what the future holds. One way to anticipate what’s coming is to learn from parkies further along in their disease. Unfortunately, it turns out that while many patient memoirs chronicle the early years of PD, there are very few accounts that document the long-term trajectory of the condition. An exception is Joel Havemann’s smart book, A Life Shaken.

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