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.
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).
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 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.
Are 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?
Why 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.
How do we capture rising stars in science and encourage them to focus their attention on Parkinson’s? This is a question that PDF — in its quest to help solve, treat and end PD — has been evaluating since its creation 60 years ago.
In fact, PDF’s focus on catching rising stars in PD is the reason why we have prioritized funding for the training of early-career neurologists — more than 100 of them over the years — in PD research and care. It is also the reason we have supported the research of more than 250 early-career basic scientists over the same period.
Recently, PDF took a new look at the life-cycle of a Parkinson’s scientist. At once, we saw the need to capture rising stars before they drift from the field for lack of career options.
And we realized that we must do more.