Debate: are people with Parkinson’s “sick”? (Part One)

Perspectives

Author: Joe McAweaneyPublished: 14 December 2017

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Debate

Last month, we interviewed health campaigner Alexander Reed – who was diagnosed with Parkinson’s nine years ago – about the European Parkinson Therapy Centre and his belief that people with Parkinson’s “are not sick”. The piece sparked a strong reaction from our readers. In the first of a two-part series, we hear from those who disagree with his assessment


Our interview with Alexander Reed, founder of the European Parkinson Therapy Centre, provoked one of the strongest reactions of any article on Parkinson’s Life. Many readers were upset by his choice of words, with some deeming them insensitive to the reality of living with Parkinson’s disease.

Ian Frizell, a health campaigner who was diagnosed with young-onset Parkinson’s in 2011, said: “Parkinson’s has taken my career, and my ability to provide for myself and my family. I am absolutely sick.”

One Parkinson’s Life reader, whose username is Chris DeAngeloWX5CJD, took exception to the wording of our headline, branding it “preposterous”. He said the article made light of his situation, saying: “Parkinson’s is a neurodegenerative disease, not a common cold.”

A criticism, voiced by several readers, was that the focus of the article showed disrespect to those living with the condition. Many felt the suggestion that people with Parkinson’s “are not sick” was unfairly dismissive of their situation.

Ian argued: “To say people with Parkinson’s disease ‘are not sick’ trivialises the issue.” Tonya Walker, Parkinson’s campaigner and regular Parkinson’s Life guest blogger, agreed: “Based on the definition of ‘disease’, yes we are sick. People with Parkinson’s struggle every day with symptoms that can be attributed to diseases – such as tremor, fatigue and difficulty talking.

“I am not a doctor, but having experienced many of these symptoms, I would not consider myself in good health.”

Dr Michael Okun, professor and chair of neurology at the University of Florida, US, echoed this sentiment, but pointed out that many with Parkinson’s choose to define their own condition.

“People affected by a physical illness are considered to be sick. However, it is important to consider that many people with Parkinson’s disease reject the ‘sick’ role in favour of a healthy disposition.”

Michael_Okun

Dr Michael Okun, professor and chair of neurology at the University of Florida, US

A positive outlook

The original article sparked a discussion amongst our readers on the subject of having a positive attitude, and whether it is an important part of living with Parkinson’s.

Ian said that promoting positivity can be counterproductive: “A common symptom of Parkinson’s is depression, and telling someone suffering with depression to ‘snap out of it’, or to be more positive, is not helpful.”

Gaynor Edwards, co-founder of Spotlight YOPD, agreed: “The most annoying phrase in the Parkinson’s community is ‘I may have Parkinson’s, but Parkinson’s doesn’t have me’. The truth is, some days it has us all.

“Positivity can be hugely beneficial to the individual, but I think it does little to progress our cause. There’s a time and a place for positivity, but there is also a time to make a stand.”

Gaynor was clear about how the condition makes her, and many others feel. “Make no mistake about it – we’re sick of the cramp and we’re sick of the pain. We’re tired, tearful and frustrated, we are truly sick of having Parkinson’s.”

Tonya agreed: “Parkinson’s is a relentless disease, that I wake up and battle with it every single day. I think we can all agree that we need to find a cure ­– now.”

European Parkinson Therapy Centre Gym

Gym facilities at the European Parkinson Therapy Centre


Have your say by commenting below

Read more:
The case against –Debate: are people with Parkinson’s “sick”? (Part Two)

Alexander Reed: “people with Parkinson’s are not sick”

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Comments


  • https://www.linkedin.com/today/author/134569387 Lisa Vanderburg

    Anyone who wants to meet my husband will know how ‘sick’ Parkinson’s is!

  • Gerold

    I have been diagnosed with PD more sixteen years ago and have met hundreds of other PDers since. Without no doubt, people with PD are sick. But this not mean that they cannot maintain a positive attitude. One important cornerstone of this is to actively improve your own condition, e.g. physical exercise, appropriate nutrition etc. Another is to become active and support promising research, such as cell replacement therapy for PD (e.g. http://summitforstemcell.org).
    In my experience, it is not helpful to ignore or redefine sickness in order to build a positive attitude upon.

  • Stephen D

    So I am 54, I take 14 different types of drugs a day, a total of 23+ tablets a day for Parkinson’s, RLS, Dep & Anxiety etc, and I am not sick? People always tell me I look great, but I do not feel great, ‘No i do not’, but I have learnt to push the pain barriers and thanks to my ‘daily’ routine of exercise, Pilates and boxing, I can buy a few hours a day where I do feel ok, but then it comes back, and yes I feel sick again, sick of Parkinson’s and how it has robbed me of doing the life things that most take for granted. So yeah, I have 3 hours a day when I am not sick, thanks to exercise. Don’t forget Parkinson’s has motor and non-motor symptoms. I often loose my train of thought, speech is affected, I forget things, no1 (always need to go) and no2 (daily constipation). Am I sick, yes sick of Parkinson’s as these other symptoms takes up the 3 good hours I have physically. My drivers licence was handed in soon after the day I was diagnosed, as it has also affected my eyesight (being pulled over by the police for driving all over the road, when I thought I was going straight) hmm am I sick ? yes, sick and tired of now relying on others to get around…I can go on and on. until next time….Best Regards, Dr Stephen D (The Parky Park Runnner at https://www.facebook.com/parkyparkrunner/)

  • David Carothers

    I was diagnosed 4 years ago this month. The pain does not stop. I certainly do not feel “well” or “healthy”. I am forgetting how to spell simple words; I call things by the wrong name. I do try the positive presentation in public and positive outlook, but its exhausting in and of itself to keep that charade up as well.

  • Colin Alexander Reed

    Leaving aside the science of what the difference is between a disease and a condition or disorder the fact remains that it is the way we look upon our Parkinson’s that has a major impact on the progression and quality of our life.
    Well done Parkinson’s UK for this video
    https://www.youtube.com/watch?time_continue=11&v=DwrvPpb2_YM
    Well done European Parkinson Therapy Centre for this video.
    https://www.youtube.com/watch?v=ZlIEVEnraTA&t=12s
    We should be united to fight every day for what we have, not what we don’t have and it is through unity and discussion that we can be stronger.

  • Antonis Glytzouris

    Let’s
    say we are sick. We are realists: All of us struggle daily with difficult
    moments. All of us feel in everything we do a sense of degeneration. But we do
    so many things – following of course our bizarre rhythms. And nobody knows how
    many different symptoms and rhytms exist. Labels are not useful. Let’s say we
    are living in a difficult condition. Let’s say we are not sick. Because we are
    realists and we hate labels. Because, we are living in a difficult degenerative
    condition which is sick. Because we are
    humans full of sickness, contradictions and adaptability.

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