The Power of the Pen Against Parkinson’s

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“Parkinson’s disease is a mimic. It is also a snowflake; no two incidents being identical in symptoms,” writes Gil Thelen, a PDF Research Advocate and longtime newspaper editor from Tampa, FL.

With these words, printed last week as part of his Op-Ed, Mr. Thelen has proven how powerful a tool the pen can be in the fight against Parkinson’s.

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Hospice and Parkinson’s and The Changing Conversation About End of Life

logo_fs_caring_129In the past year or so, PDF has seen an increasing number of articles broaching the topic of end-of-life planning — how to talk with a person about his or her care, the role of the family, whether drastic life-saving measures should be taken and whether it is preferable to spend those last days home or at the hospital.

Just this week, Barron H. Lerner, M.D., was the latest to weigh in on the topic of end of life with his piece, Overruling My Father, appearing in the New York Times. Dr. Lerner, a physician at NYU Langone Medical Center, who is perhaps best known for his authorship of “The Breast Cancer Wars,” turns his attention to Parkinson’s disease. And he reveals his and his mother’s decision, based on his father’s previously-expressed views, to choose hospice for the end of his father’s life. (He reports that his father, Dr. Philip Lerner, passed away in hospice in 2012.)

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Cindy Says, #MyPDPriority is Dystonia

#2bittker_cindy_grandkids_2015Which question about Parkinson’s is your priority for scientists to answer? According to Cindy Bittker, M.S.W., a PDF Research Advocate from Hull, MA, the answer is: dystonia.

As part of its Second Annual Community Choice Research Awards (open during April), PDF is profiling members of the PD community who have taken our survey to find out the priorities they suggest for scientists. The survey — open to people with PD and care partners until Thursday, April 30 — asks what is most important for researchers to study regarding specific aspects of the disease, including its symptoms, day-to-day management and treatment. Later in 2015, PDF will select two community priorities to be studied with $15,000 grants.

See our interview with Cindy and be sure to share YOUR PD priority by Thursday, April 30!

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Patient Engagement Works: Lessons from the Learning Institute Year Eight

todaro_ronnieTwo weeks ago, I sat in the back of a conference room in New Jersey, watching events unfold at PDF’s most recent Parkinson’s Advocates in Research Learning Institute, as I have for the past seven years. For the eighth year in a row, we were prepping a group of people with PD and care partners to understand the research process and how they can pair up with researchers to improve it.

As I sat there, planning details for the next day and ways to make the training better, I looked up and it hit me – it is working.

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Parkinson’s Through the Eyes of a Child

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New book by Soania Mathur.

Why does mom shuffle and stagger when she walks? What makes grandpa’s hand shake? Will grandma die of Parkinson’s disease (PD)?

When there is a diagnosis of Parkinson’s disease in the family, these questions may be on everyone’s minds.  If we imagine the experience through the eyes of a child, it is easy to see how such questions can be even more overwhelming.

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Let’s Talk About Sex … and Parkinson’s

Who’s talking website-living-pd-masthead_smallabout sex and Parkinson’s disease? Despite the challenges that some people with Parkinson’s face in regards to sexuality and intimacy (one study showed 87 percent of people with PD experience some sort of issue related to sexuality) the conversation on the topic has been sparse.

That is why PDF hosted a webinar on the topic last September with Gila Bronner, M.P.H., M.S.W., C.S.T, which has been viewed by more than 2,000 people. And it’s why why we noticed last week when comedy writer Marc Jaffe published an essay published in the New York Times, Finding Equilibrium in Seesawing Libidos, covering this sensitive topic of sexuality and PD.

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