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Bob Kuhn

Kate;

Great Post!!!!

I agree wholeheartedly. Suffering may be a sometimes state of being, but we cannot allow others to identify us with that label. Next thing we know and they will be reverting to "handicapped". The difficulty is finding other language that is better. I like "people with Parkinson's" or "challenged". What about you? Others?

Your friend,

Bob

Kate Kelsall

Thanks, Bob, I appreciate your feedback.

It's important to monitor others' languague as well as our own self-talk about Parkinson's.

I like:
Person/People...
With Parkinson's,
Challenged by Parkinson's
Living with Parkinson's
Affected by Parkinson's
Managing Parkinson's

I DON'T like:
Person/People...
Suffering with
Parkie
Victim
Afflicted by
Handicapped by

Your blogger friend,
Kate

Betsy

Oh Kate,

Thanks so much for writing about this. As usual you're in the lead on what PWP should be doing. In this case, objecting to pessimistic, negative images of us. And your suggestion to take action is right on: write the newspapers and call up the speakers when we are catgorized as sufferers.

I would like to add that we should never act like sufferers.

Another word I would like to add to the X-list is victim!

AS always thanks for your thought provoking post!

Betsy

Kate Kelsall

Hi Betsy,

Thanks for commenting. I added "victim" to the X-list. See earlier comment.

Related to this topic is the stereotyping of PD patients. Perhaps we could write a post about this after the new year.

Kate

Betsy

Yes, it's a go!

Diane Cook

Kate,

I think the power of your model of being positive, upbeat and hopeful in the midst of a chronic, progressive disease serves not only as inspiration but also as education to those who may without thought use the word "suffer" (or closely related words). So I agree that we must take action to correct the labels, but perhaps the most powerful force of all is in the demonstration that you are not a "sufferer" but rather take the opportunity of your disease to make valuable contributions to help others.

Diane

Dirty Butter

I agree that words have power, if we allow people to use them as standard messages about any person with a disabling disease. But I tend to be non confrontational. Well meaning people have said things to and about me that I wish I had had the nerve to confront them about. So I needed this post.

I stopped by to wish you and your family a very Merry Christmas!


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Kate Kelsall

Hi Diane,

Thanks for reminding me that actions speak louder than words and that I lead my life not as a sufferer, but as a positive, upbeat and hopeful person managing my PD.

Kate

Kate Kelsall

Hi Dirty Butter,

I appreciate your comments.

I too have difficulty confronting and expressing my position through the spoken word. I find it easier through the written word. Also, my mission is to increase awareness about neurological issues in all of the community. Knowing that I speak for many people, not just myself, also makes it easier.

Merry Christmas to you and your family,

Kate Kelsall

Neil Sligar

I share a disdain for the term “sufferer.” (Note that “sufferer” has been added to the PBS transcript. It wasn’t in the words actually spoken.) It’s annoying when outsiders depict me as a victim. As troublesome as the condition may be, PD has opened a door to new friends and opportunities to be of service.
A descriptor I particularly dislike is “patient.” I’d agree with the term if in hospital or in a doctor’s room, but not when going about my day-to-day activities. It implies reliance and unless I’m seeking assistance, I’m not being reliant. Maybe I’m too sensitive but I sometimes feel that people not experiencing PD feel entitled to speak on my behalf.
If I were to join an exercise group specifically organized by physiotherapists for people with Parkinson’s, I’d be called a “patient.” Exercises would be chosen by a physiotherapist with emphasis being placed on safety for someone with PD. My choice is the gym, exercising with everyone else. Fitness instructors are happy to offer advice, if I seek it. My PD isn’t an issue. Parkinson’s is no-one’s concern other than mine. My gym tag is “member.”

Neil Sligar
Sydney, Australia

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