“Parkinson’s disease is part of my identity, whether I like it or not”

Interviews

Author: Sarah McGrathPublished: 10 March 2022

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From the balance between “defying” and “embracing” the condition, to what they value most in life – three people tell us about the relationship between Parkinson’s disease and their sense of self


What do you feel are the essential aspects of your identity?

Elisabeth Ildal, Denmark: The essential aspect of my identity is me. I have started a business, started sports clubs and I’m involved in politics. I write, I paint and have been a World Parkinson Congress Ambassador. I have fun with my family and my friends. I live a good life.

Jens Greve, Germany: I am a curious person – knowledge and understanding have great importance for me. Friendship, loyalty, justice and solidarity are things I value highly in my life. My family is my greatest treasure. They make my life infinitely rich.

John Baumann, United States: I describe myself as an inspirational speaker “who just so happens to have Parkinson’s”. That one phrase tells it all. What is more important than how I describe myself is how others describe me. Will they say “kind” and “full of love” as opposed to “self-centred” and “emotionless”? Parkinson’s can be the wake-up call to transform yourself into a better person.

John Baumann sitting on a bench outside

Since his Parkinson’s diagnosis, John has become an inspirational speaker and author.

Does Parkinson’s play a role in your sense of identity?

Jens: Part of my personality is my creativity and desire to create. For the last eight years I have been researching and communicating with the Parkinson’s community to help find a cure for our condition. This endeavour occupies a major space in my life. However, I do not view this as a permanent occupation with Parkinson’s – but as an occupation with health.

John: My condition is a fact and is here to stay. It does not define me, but it is something that cannot be avoided. It’s better to embrace Parkinson’s (while doing all you can to ‘defy the disease’). I am not ashamed or embarrassed to disclose my condition to others – in fact, it is amazing how people will jump at the opportunity to help a stranger that is struggling. It makes me feel hopeful.

Elisabeth: Parkinson’s is just a thing that I said “hi” to nine years ago. I’m still the same person I have always been, I don’t live in Parkinson’s; I live with it. There is always hope that the best is still to come. It’s better to have Parkinson’s today than 20 years ago. One good thing that’s come from the condition is all my new friends all over the world – I’m so thankful for them.

Elisabeth IIdahl and her husband with tennis rackets

Elisabeth (right) with her friend and fellow ‘padel’ player, Kim (left). 

Do you think your Parkinson’s diagnosis has impacted how others see you?

John: Sometimes it is the elephant in the room – everyone is ignoring the obvious. On the other extreme, Parkinson’s dominates the entire conversation, and excludes more uplifting topics. Hopefully people see me as a warrior. As retired professional cyclist and non-profit founder Davis Phinney says: “Every victory counts.” Just getting out of bed in the morning is a victory.

Elisabeth: It depends on the person. People always believe in what they see. It’s okay with me if they see me one way or another. Often I hear: “You don’t look sick” – to which I always answer: “I know, but you don’t understand what’s going on in my shoes.”

Jens: My family, friends, acquaintances and professional contacts treat me more gently, considerately and lovingly. I sometimes have the feeling that I live in a kind of protected zone. Those who know me experience how the condition spreads bit by bit. People in my environment react to this – empathetically and lovingly. I find this pleasant and am very grateful for it.

Jens Greve attending a award ceremony

Jens celebrating at the ITTF 2021 Parkinson’s World Table Tennis Championships. Credit: Sebastian Schleicher.

Do you ever struggle with balancing Parkinson’s as part of your identity?

John: There is no struggle – it is perfectly balanced between defying it and embracing it. Everyone has their crosses to bear. Everyone must deal with life-changing events. It is how we respond to this adversity that defines us. Parkinson’s is my life-changing adversity.

Elisabeth: Maybe in the beginning. Now I know a lot about Parkinson’s which I didn’t when I was diagnosed. Today I am aware of myself and my identity. I am independent and I take responsibility for my one life.

Jens: Parkinson’s is part of my identity, whether I like it or not. Just when I get used to the condition, a new complication, symptom, or side effect comes long. Philosopher John Locke wrote that consciousness is the defining characteristic of personality – not the body or the mind. I always try to direct my consciousness to the parts of myself that are healthy and vital.


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