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.
As Father’s Day comes closer, I have been reflecting on what my Dad gave to me. A US Navy veteran, my Dad was proud of his 37-year career. He served his country as a seaman in World War II and later as an officer.
That’s one reason why his diagnosis of Parkinson’s disease – an incurable, chronic and progressive disease – hit him so hard.
Although he’s gone, one of the many values he taught me was to be a part of something bigger than self … to serve others … to give back.
How are you putting your passions to work for Parkinson’s? Each year, PDF Champion Dawn Judson puts her passion for offroading and and for her business, Bikini Offroad, to use by hosting Shake, Rattle and Crawl. The two-day off-road vehicle event is held in Marble, TX to benefit PDF.
The event offers drives on jeeps, ATVs, motorcycles and trucks on the scenic trails and hills of the Hidden Falls Adventure Park, as well as live music, a scavenger hunt, a raffle and dinner.
This year, Dawn and her family and friends raised $5,500 … bringing them to cumulative total of $16,000 since 2013! How does she do it? Read our interview with Dawn to learn why the cause is so important to her and how she puts this event together each year.