The PD Partnership: A Care Partner’s Perspective

CaringDo you think of yourself or your loved one as a “caregiver” in life with Parkinson’s disease?

There are some people who identify with this term, but many others who do not, which is why when Rhona Johnson, a former member of PDF’s People with Parkinson’s Advisory Council (PPAC) coined the term “care partnership,” PDF thought it fit perfectly.

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On Newsstands Now: Dr. De Leon & Family Circle Magazine

Family Circle Magazine, September 2015

Family Circle, September 2015

Have you picked up the latest issue of Family Circle magazine? If you flip to page 103, you will find a personal story about Parkinson’s disease written by Maria De Leon, M.D., a Research Advocate with the Parkinson’s Disease Foundation and former member of our People with Parkinson’s Advisory Council.

For those of you who do not know Dr. De Leon, she is both a movement disorder specialist (a neurologist with specialized training in PD) and a person living with PD.

Dr. De Leon’s story in Family Circle traces her journey with PD, from the confusion that arose over her diagnosis — in part because her early symptoms were not “typical” — to her current work as an advocate with PDF. We sat down to ask her about the story, what has changed in PD in the past 10 years, and what she hopes to achieve by sharing her story in this way.

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Shake, Rattle & Roll for PD: Q&A with A.C. Woolnough

PDF Champion A.C. WoolnoughA.C. Woolnough doesn’t let Parkinson’s disease get him down. He’s been actively involved in the fight against PD since his diagnosis in 2014, in part by volunteering with the Parkinson’s Disease Foundation (PDF).

He is not only a member of the PDF People with Parkinson’s Advisory Council, and one of our Research Advocates, he is also a member of our Creativity and PD Project.

Now he’s adding another volunteer role to his long PD volunteer resume — fundraiser. He is putting his passion for golf to work as a PDF Champion next Saturday, September 5, when he will host Shake, Rattle & Roll in Sandpoint, ID, a golf tournament to benefit PDF.

What drives A.C. to be so active in the community? Hear from him in our interview below.
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Transformation, Creation & Life with Parkinson’s: Q&A with John Creveling

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John and wife Christina

How did you spend your summer vacation? John Creveling, a PDF Research Advocate from Philadelphia, PA, spent it sharing his story with the Parkinson’s disease community.

At the beginning of the month, John’s story was featured in Neurology Now, a magazine widely featured in doctors’ offices and read by people living with Parkinson’s disease and other neurological diseases.  Just a few days later, the Parkinson’s community voted for John’s photograph, Transformation, to be featured on the cover of PDF’s 2016 Creativity and Parkinson’s calendar.

We sat down with John to hear about his own transformation into an advocate for Parkinson’s disease — one committed to living positively and creatively on the way to a cure.

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Advocating for Equality in Science on Women’s Equality Day

logo_women_and_pd_2015_tintedA few months ago, the National Institutes of Health — the government institute that funds $26.4 billion in biomedical research each year — called for equal representation for females in scientific research studies … female mice, that is.

Today, as we mark Women’s Equality Day, equality for mice (and human women) in scientific research might not be the first issue that springs to mind. But it is an important one.

Why? Because when scientists test new therapies for diseases such as Parkinson’s, there are several steps to make sure they are safe and effective in humans. And experiments in mice provide early clues for which therapies might help people with PD and which might not.

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You Asked & We’re Answering: Fatigue in PD

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Dr. Joseph F. Friedman

Why is it important to solve fatigue in PD? First, it is a debilitating symptom experienced by many people with PD; yet it is difficult to diagnose and treat. Perhaps more importantly, it is a symptom that people with PD and care partners told PDF was important when voting in the first Community Choice Research Awards survey.

This past October, I was pleased to lead a PDF Conference on Fatigue in PD in Chicago, IL. Because this meeting and subsequent research were inspired by the community, my colleagues and I feel it is important to let you know what happened and the progress we have made so far. At our meeting last year, along with the best minds in fatigue in PD and other diseases (see our full group listed at end), we had four goals before us: determine what we know, what we don’t know, what we can learn from other disciplines, and most importantly, where we should go next.

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