NWPF

PD Community Blog

Needed: New Parkinson’s Vocabulary

Friday February 26, 2016

One of the less noticed challenges of Parkinson’s Disease is mastering the arcane vocabulary that describes the particulars of the disorder. If we want to speak clearly with our doctors and others about what ails us, we have to use strange words like “dyskinesia,” “festination,” “dystonia,” and “bradyphrenia.” Words that are fun to say on their own, but even more fun to rattle off as part of a sentence. “In spite of severe dystonia, she managed to festinate across the room.”

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Caregiving: Ken's Story

Friday February 12, 2016

When I started attending PD caregiver support groups I was impressed by the heroic stories of difficult caregiving needs and caregiver efforts.

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A Well-Tested Testimonial, or Spin for Parkinson's

Friday February 05, 2016

We all have stories. For those of us affected by Parkinson’s disease, the “beginnings” are especially poignant. Of course, the “middles” and “ends” are significant, too! But that first loss, and gain are determined. Indeed, those first sticky words (either the doctor’s or your own) hang onto the sides of memory a bit longer than the rest.

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Safety with Style: House design ideas you can hold on to

Friday January 29, 2016

The entry door opens in. Next, are there ways to prevent falls once inside?

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Caregiving: Susan's Story

Tuesday January 26, 2016

I am a caretaker by nature and reveled in sharing life with Joe, my husband of 28 years, as well as being a mother to our 3 sons. We fought hard, enduring 8 miscarriages, but life was sweet in those early years.

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Rock Steady Boxing: Emily

Tuesday January 19, 2016

“I LOVE hitting the bag: it's so satisfying! I can channel all my frustration and stress into those punches. When I leave the gym I feel as if I've left all my stress behind.” This is a refrain that is common within the Rock Steady Boxing community, and throughout the larger boxing and martial arts communities.

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Book Review: My Degeneration, A Journey Through Parkinson's

Friday January 15, 2016

Peter Dunlap-Shohl was an editorial cartoonist, one of those journalists who draw witty caricatures of people in the news, usually making fun of them. He had fun doing that. Then, at age 43, the real fun began for Peter. He was diagnosed with early-onset Parkinson’s Disease.

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The Marble Halls of Power

Monday January 11, 2016

Last spring, I had the opportunity to attend a two day workshop in Washington, D.C. with the Parkinson’s Action Network—an advocacy group representing the entire Parkinson’s community. The workshop was focused on preparing us for the third day—a visit to the Hill.

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Safety with Style: House design ideas you can hold on to

Monday January 04, 2016

In 2016, my Parkinson’s and I enter the teen years together at the same time that we face a major house renovation. Oh my, talk about stress.

By working with the contractor on design, I become part of the process. And in the end, I get PD-accessible features throughout the house.

Even better, I’d like to open the door to a guest and say, “Welcome to my home” without it looking like “Welcome to my PD- accessible home.” So, the features need to be functional but blend with the décor.

I hope that sharing these design ideas helps others add safety with style to their living spaces.

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ROCKIN’ AROUND THE GROCERY CART

Thursday December 24, 2015

Yes, I have Parkinson’s;
I’m the first of Jeff Camp’s sons;
As far as aunts, uncles and cousins.
I’m the only one!

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