Blog Archives: Advocacy

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

From Diane: It’s Our Time to Speak Up

Which part of living with Parkinson’s disease should be the priority for scientists to study? For Diane Cook the answer is: cognitive issues. She submitted her answer through the Second Annual PDF Community Choice Research Awards survey. Now she is urging you to share yours by Thursday, April 30. Diane worked closely with PDF to develop the first Community Choice Research Awards survey last year, which are a “people’s choice” for PD research grants. The ProjectSpark Foundation run by Diane’s children donated funds for the awards. Hear from Diane about why the “people’s choice” awards are critical for PD research, why she… read more Read More

A.C. Weighs In: Can PD Researchers Study Apathy?

Which aspect about living with Parkinson’s is your priority for researchers to study? For PDF Research Advocate A.C. Woolnough, the answer is: apathy. Apathy, which is a lack of interest or enthusiasm, is a common complaint among people with Parkinson’s and loved ones but has not received much research attention. A.C. shared apathy as his priority by taking PDF’s six-question survey as part of the Second Annual Community Choice Research Awards. Below, we interviewed him to find out why he thinks researchers should spend more time studying apathy. There’s still time for you too to submit. PDF is accepting survey submissions… read more Read More

Gil & Kirk Agree, Palliative Care Should be
Priority for Researchers

Which question about living with Parkinson’s is your priority for scientists to answer? For PDF Research Advocates Kirk Hall of Denver, CO, and Gil Thelen of Tampa, FL, the answer is: understanding how palliative care can help people with PD. Gil and Kirk separately completed PDF’s six-question survey as part of the Second Annual Community Choice Research Awards. It turns out that they chose the same topic. We interviewed them to find out why studying palliative care is so important.

The Power of the Pen Against Parkinson’s

“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.