New York Congressman Paul Tonko gathered members of the local community touched by Parkinson’s Disease this week and says a more human approach is needed to address gaps in relevant legislation.
Democrat Paul Tonko of the 20th District hosted a roundtable discussion in Albany to get input on his bipartisan National Plan to End Parkinson’s Act from people living with Parkinson’s, caretakers, advocates, and researchers.
Parkinson’s affects the nervous system. It’s estimated to affect 1 million Americans.
While no patient is the same, common symptoms of the progressive disease are tremors, rigid muscles, speech changes, and loss of automatic movements.
Tonko says the disease costs the federal government an estimated $52 billion annually, expected to grow to $80 billion by 2037.
The bill is focused on efforts to relieve burdened families, reduce government spending over time, and potentially lead to a cure. The legislation is modeled after the 2011 National Alzheimer’s Project Act, which 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.
According to the Parkinson’s Foundation, it’s the second-most common neurodegenerative disease behind Alzheimer’s.
Roundtable participants echoed the importance of investing in pathways for doctors to connect with other providers to provide the proper treatment. They agree hospital staff often lack knowledge about the importance of timeliness when administering medication or providing assistance.
The Parkinson’s Foundation offers hospital safety kits that include information on working with someone dealing with PD, fact sheets, and medical alert cards.
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, not only for researchers but patients, too.
“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.”
While there is no cure for Parkinson’s yet, medications can be used to increase the amount of dopamine that reaches the brain or stimulate parts of the brain where dopamine works. Shin says aerobic exercises are the only accepted disease modifier shown to work in the long term. Rachelle Smith-Stallman teaches DANCE BEYOND PARKINSON’S in Albany.
Smith-Stallman says 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.
