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The PD Partnership: A Care Partner’s Perspective

Do 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.

Advocating for Equality in Science on Women’s Equality Day

A 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… read more Read More

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

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… read more Read More

Is a PD Support Group Right For You?

Would 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.

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

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… read more Read More

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

Do 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… read more Read More