Last week, New York Congressman Paul Tonko met with members of our community who were touched by PD. These people included people with Parkinson's, their caregivers, advocates, and researchers. Tonko said that a more human approach is needed to address gaps in legislation regarding PD.
Tonko shared that Parkinson's can cost the federal government $52 billion every year and that number is expected to grow to $80 billion by 2037. The bill is focused on efforts to relieve families, decrease government spending, and hopefully lead to a cure. The legislation is modeled after the 2011 National Alzheimer’s Project Act. This Act created a national plan to address the Alzheimer’s crisis and all other forms of dementia by 2025.
“We made such great strides with like a major neurological disorder and now in that same realm, we can assist hopefully the Parkinson’s community which deserves the attention and respect as does Alzheimer’s of the federal budget, of the federal government,” Tonko said.
The participants emphasized the importance of providing ways for doctors to connect with other providers to provide the right and appropriate treatment. It was a shared opinion that hospital staff often lack knowledge about the importance of timeliness when administering medication or providing assistance. The Parkinson’s Foundation does offer hospital safety kits that include information to help minimize this gap in knowledge, but it does not provide a complete solution as it is still up to the patient to carry these kits.
Doctor Kristi LaMonica, Associate Professor and Biology Program Director at Russell Sage College, was diagnosed with Young-Onset Parkinson’s Disease in 2020 at 40. LaMonica says she would like to see more focus on gender-differences in the legislation. “There's not much known about women in Parkinson's,” LaMonica said. “So, hormones are like a big black box. And hormones are terrible when it comes to Parkinson's. So, we don't know enough. A lot of women are dismissed when they mentioned their hormones to their movement specials. And who do you go to when you have problems?”
Doctor Damian Shin, a PD researcher at Albany Medical College, says funding is crucial for both researchers and patients. “You're getting a lot of buy-in from other disciplines, because they see that there is more funding in Alzheimer's,” Shin said. “And because if you have people that are getting into Alzheimer's research that are immunologist, that are nutritionist, there are some that are biologists, they're people from outside the field, they're not neuroscientists, that are coming. And that's fantastic. Because you really want to have that cross pollination. And that's what happens is when you have the funding, it's terrible, say, but you go where the money is.”
Rachelle Smith-Stallman sat at the round table. She teaches DANCE BEYOND PARKINSON’S in Albany and shared that there is community among her dancers, something others in the discussion say is important to their wellbeing. “Exercise is really, really important, dancing movement and also the way I teach,” Smith-Stallman said. “I teach in a way that really works both sides of your brain at the same time, and gets you healthy in the brain and the body.”
Mark Burek has lived with PD since 2007. Since being diagnosed, he founded Hope Soars, an organization aimed at inspiring those in the community to live fully. In the end, Burek says it’s all about attitude. “We all have limitations but it’s how you apply those on a daily basis that will give you the drive and purpose,” Burek said.
Tonko says he expects the bill to be revisited in September following language adjustments.
Original article: https://www.wamc.org/news/2023-08-10/new-york-congressman-paul-tonko-discusses-legislation-with-locals-impacted-by-parkinsons-disease