Parkinson Foundation Provides Services, Support to Improve Quality of LIfe
Mar 30, 2019 10:49AM
By Hilary Daninhirsch
Rock Steady Boxing at Oxford Athletic Club
Parkinson’s disease is a progressive, neurodegenerative disorder that affects movement. As April is Parkinson’s Awareness Month, we spoke with Casey Kasperik, associate director of social support and outreach at Parkinson Foundation Western Pennsylvania, located in Bellevue, about the outlook for Parkinson’s and how the nonprofit helps those with the disease.
North Hills Monthly (NHM): What is the mission of the Parkinson Foundation Western Pennsylvania?
Casey Kasperik (Kasperik): Our mission is to provide services, support and education for those living with Parkinson’s disease, and their families.
NHM: What are some statistics about Parkinson’s?
Kasperik: Males are affected 1.5 times more than females. The average age of onset is 60; between the ages of 65-69, the incidence of Parkinson’s is .1 percent. Whites have a substantially higher prevalence and incidence of Parkinson’s disease than blacks or Asians. At age 85 and higher, the incidence is about 1 percent. There are approximately 1 million people living with Parkinson’s in the U.S. and 10 million worldwide; western Pennsylvania has one of the highest rates of Parkinson’s, affecting about 12,000 people.
NHM: What are the risk factors?
Kasperik: Males are at slightly higher risk, but the main risk factors are age, environmental risk factors (herbicides, pesticides, heavy metals), and genetics. The Ashkenazi Jewish population is at higher risk along with the North African Berber population. Mutations in the LRRK2 gene are the most common genetic cause of typical Parkinson’s disease. Approximately 85 percent of cases are an idiopathic (unknown) cause, but it can also be drug-induced, due to head trauma or from vascular reasons.
NHM: What exactly is Parkinson’s, and what are the symptoms?
Kasperik: Parkinson’s disease is a progressive, neuro-degenerative disorder, second to Alzheimer’s disease. It was first described by Dr. James Parkinson in 1817 in An Essay on Shaking Palsy. Dopamine plays a critical role in the way our brain controls our movements and is thought to be a crucial part of the basal ganglia motor loop. Thus, shortage of dopamine—particularly the death of dopamine neurons in the nigrostriatal pathway—is a cause of Parkinson's disease. A person loses the ability to execute smooth, controlled movements. Dopamine is also a reward chemical in the brain and affects mood as well.
There are four cardinal motor symptoms: a resting tremor, rigidity, bradykinesia (slowness of movement), and postural instability. A diagnosis is made through clinical mode; you have to have at least two to three of those symptoms. There are also many non-motor symptoms associated with Parkinson’s, such as sleep and mood issues (including psychosis) and cognitive impairment.
NHM: How does that present itself?
Kasperik: The vast majority of people with Parkinson’s may experience some form of cognitive impairment over time. Though it is unique to each person, the development of dementia depends on how long you have Parkinson’s and the stage of disease. In general, about 70 percent of people with Parkinson’s develop dementia as part of their progression.
Parkinson’s disease psychosis may cause patients to experience hallucinations and/or delusions. More than half of all patients with Parkinson’s disease eventually develop these symptoms over the course of their disease.
NHM: How is it treated?
Kasperik: Dopaminergic drugs, developed in the ‘60s, are the traditional medications and still the gold standard, though some dopamine replacement medications are being reformulated or are using different delivery systems.
Another is deep brain stimulation: brain surgery in which two electrodes are implanted into a particular part of the brain and attached to a pacemaker-type device. It’s usually more beneficial for the tremor-dominant type of Parkinson’s.
Physical therapy, occupational therapy and speech therapy can be useful, as Parkinson’s is often known as the ‘small soft disease’—movements get smaller, voices get softer.
NHM: What role can exercise play?
Kasperik: Exercise is very important. For example, Rock Steady Boxing is a Parkinson’s-specific program. It is non-contact boxing that caters to people with different levels of progression. It is one of the various exercises recommended—you’re getting cardio benefits and you’re moving but you have to think of punch combinations. It is high intensity coupled with strength building and stretching. There is a class at Oxford Athletic Club, which also offers a class in yoga for Parkinson’s.
NHM: What kind of services does your organization offer?
Kasperik: We provide community outreach and education. We’re the go-to for information and referral to Parkinson’s-specific providers. We provide education and resources to those individuals who are diagnosed. We do presentations in the community and much more.
We have more than 23 support groups, including one in Cranberry. We have over 40 Parkinson’s-specific exercise programs, and we have professional training to help allied health professionals become certified in Parkinson’s-specific programs. We have an affiliation with Allegheny Health Network, part of the Cahouet Center for Comprehensive Parkinson’s Care, where we team up with physical and speech therapists and a movement disorder specialist all under one roof.
NHM: What do you have planned for Parkinson’s Awareness Month?
Kasperik: Our signature educational event is the annual Living Well Conference, which is on April 27 at the Marriott Pittsburgh Airport. It is not a medical conference; rather one that is geared to our population with a focus on the term “living well” and how to manage the disease. Our keynote presenter, Davis Phinney, is a person living with Parkinson’s—he’s a former Olympian cyclist.
The day after, on April 28, ballet master Alexander Tressor will present a program at the Pittsburgh Ballet Theatre; his whole program incorporates a holistic way of living with Parkinson’s.
NHM: What about events throughout the year?
Kasperik: We have quarterly Lunch and Learns, and we also have a Parkinson’s Primer, a daylong educational program for people who are newly diagnosed.
We are an almost entirely donor-driven organization, with 95 percent of our funds coming from individual donations, so we also hold fundraisers; our largest fundraising event is Step Forward, which will be held on Saturday, Sept. 21.
NHM: Tell me about the 2019 Dick’s Sporting Goods Pittsburgh Marathon and how that ties in to your organization.
Kasperik: Individuals or relay teams can run the half-marathon or marathon. There is also a 5K. We are an official charity, so you can join our team and raise money for our foundation.
NHM: Has Parkinson’s been the subject of any recent studies/research?
Kasperik: A neurosurgeon at UPMC is conducting a gene therapy study, and a doctor at CMU is doing research on optogenetics. There has been more and more recent research on how gut bacteria affects Parkinson’s—it’s looking like there is more gut involvement than was previously thought.
NHM: What is the most important thing people ought to know about Parkinson’s, and about your organization?
Kasperik: You can’t stop the progression. A lot of people think it’s the “shaking disease,” but there are more non-motor symptoms associated with it, like sleep issues, depression and anxiety. It is much more than a movement disorder, but it is not a terminal disease either. The more you know, the better you can manage it.
There’s a lot that you can do to affect the quality of your life with Parkinson’s disease; we’re here to support those with Parkinson’s and their loved ones.
For more information, visit https://pfwpa.org.