Unmasking Nonmotor Symptoms of PD: Visiting Nurse Notes with Dr. Susan LaRocco

Image courtesy of Wendell Lowe, member PDF Creativity and Parkinson's Project.

Image courtesy of Wendell Lowe, member PDF Creativity & PD Project.

Do you wish your health team understood the impact of your “invisible” symptoms — the ones that we cannot see, such as fatigue, sleep disturbances and pain?  Susan LaRocco, Ph.D., of Curry College, an alumna of The Edmond J. Safra Visiting Nurse Faculty Program (EJS-VNF) at PDF, is helping to make that happen.

In 2012, Dr. LaRocco completed our “train the trainer” program, which prepares nursing faculty in Parkinson’s disease so they can, in turn, prepare their students. Dr. LaRocco’s final research project for the program recently resulted in a published article, “Unmasking the Nonmotor Symptoms of PD,” in Nursing 2015, a journal widely read by nurses across the US.  We sat down with Dr. LaRocco to learn about her work, how the program impacted her teaching, and why telling other nurses about nonmotor symptoms is so important.

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Is a PD Support Group Right For You?

photo-advocates-pdfmaterialsWould you like to share resources and tips for living better with Parkinson’s? If so, joining a support group is one option to consider. For some people with Parkinson’s, support groups can be wonderful sources of information and social and emotional support. You may be wondering how to find a support group or, if there isn’t one nearby, how to start one yourself.

Our team at PDF is here to help.

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ADA Turns 25: Reflecting on How the Americans with Disabilities Act Protects the PD Community

Commit to the ADA - Pledge On! at www.adaanniversary.org - Celebrating 25 years (1990 - 2015) Americans with Disabilities Act - ADA National Network (www.adata.org)Parkinson’s may limit some physical abilities, but it should never take away a person’s right to live well. Thanks to the Americans with Disabilities Act (ADA),  it is much less likely to do so.

As we mark the 25th birthday of the ADA — which was signed into law by President George H.W. Bush, on July 26, 1990 — we revisit why it is important for the PD community, including how it can protect you and your family and how to contact PDF for help if it doesn’t.

The ADA is a civil rights law that prohibits discrimination based on any kind of disability — defined as temporary or permanent impairment of physical or mental abilities — including, a diagnosis of Parkinson’s disease. (Note that the law can also sometimes apply to individuals who have caregiving responsibilities, e.g., for a person with PD).

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What about the Symptoms We Can’t See? Diane & Scientists Discuss ‘Invisible Faces of PD’

eblast_pam2015_week4_image#2Do you find that your ‘invisible’ symptoms — the ones that people can’t see like sleep issues or dizziness — are the ones that bother you the most? Many people with PD say this is the case, but just 15 years ago, this wasn’t widely known.

The good news is that this past April, a group of scientists got together to speak about these symptoms at a meeting, “Non-motor Symptoms: Unraveling the Invisible Faces of Parkinson’s Disease,” hosted by the New York Academy of Sciences (NYAS) in New York, NY.

The better news? Diane Cook, a person with PD, and an Advisory Council member and Research Advocate with PDF, was a keynote speaker. She spoke with about 100 scientists about the impact of non-motor symptoms on the PD community and the urgency for finding solutions and treatments. Her comments are included in the meeting’s final report, which was published this week here.

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One in 43 Million: What Can PD Caregivers Learn from AARP’s Report?

CaringAre you a care partner to someone living with Parkinson’s? You are not alone. In fact, PD care partners may have some experiences in common with 43 million other Americans who also help to care for loved ones.

This information was shared last week, when the AARP joined with the National Alliance for Caregiving to report on the state of caregiving in the US. Together the groups reported on results from a nationwide survey which included responses from 1,250 caregivers who specifically care for adults living with a variety of illnesses such as cancer and Alzheimer’s disease.

What did we learn that might be helpful to the Parkinson’s community?

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History in the Making for Parkinson’s Disease

research_vernaleo_beth_100x1001.jpgWhy would a group of scientists return to college dorms for four days to talk about research? And why is it a big deal for Parkinson’s? I found out last month at the Gordon Research Conference on Parkinson’s Disease at Colby Sawyer College in New London, NH. Funded in part by PDF, the conference welcomed more than 180 scientists who spent four days sleeping, eating and breathing a topic of interest — which for us, is of course, Parkinson’s disease.

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