• News & Events
  • Volunteer
  • Careers
  • Education
1-800-CALL MOSSREQUEST APPOINTMENT

Search Post

Categories

select

Choose a Month

select
Back to Blog Main Page Parkinson's Support Group: Empowering Patients & Caregivers
By: Jean Carl

Inside MossRehab

Jul 6 2023



The Klein Family Parkinson's Rehabilitation Center has extended its services with a support group for people with Parkinson's Disease and their caregivers. Established in 2019 at Jefferson Moss-Magee Rehabilitation Hospital-Elkins Park, the Center promotes Parkinson's research and serves as a resource for people with Parkinson's to receive the best therapeutic care and assistance for greater quality of life.

The support group is the newest initiative of the Center to help those with Parkinson's and their families better manage and understand the disease, while learning about the different resources available to them. With its link with the Center, the support group has a large emphasis on rehabilitation and education, and is currently one of the few in-person support groups in the region at a time when other support groups are being held online. 

“We identified a need for an in-person support group where people with Parkinson’s, and in particular their caregivers, can get more information about resources and the disease, ask questions about personal issues, and interact with other people in their situation,” explained Aaron Wong, PhD, Scientific Director of the Klein Parkinson's Rehabilitation Center and Director of the Cognitive-Motor Learning Laboratory. “Rather than do online meetings, people wanted to participate in person for a more personal connection with others.”

Held monthly, the support group begins with a general discussion and presentation before breaking into individual groups for caregivers and for people with Parkinson's Disease. Presentations feature clinicians and other experts who discuss a variety of topics related to Parkinson's including advancements in medication, gyms with Parkinson's programs, and community resources

“Our goal is to expand the clinical knowledge of attendees, address their issues, and introduce resources to help them better cope and understand the disease,” says Claire Sitarz, MSW, who serves as a social worker at the Center and runs the group for people with Parkinson’s. Sky Yallof, who serves in dual roles as the Center Coordinator and Research Assistant, runs the group for the caregivers.

The support group gives people with Parkinson's Disease the opportunity to socialize and discuss topics of mutual interest with others having the same diagnosis. Caregivers can share their experiences and specific challenges without worrying about talking about sensitive topics in front of the person in their care or making special arrangements to leave them somewhere while participating in the group.

"Caregivers often don't voice their concerns, as they don't want the person with Parkinson's to feel like a burden," notes Sitarz. "The support group gives them an outlet to share knowledge and personal issues, as well as learn more about the disease and resources. At the same time, people with Parkinson's have the opportunity to meet with others who can personally understand and discuss their concerns and frustrations."

Assessments and Advisement

In addition to the support group, the Center offers a monthly clinic that provides free assessments for people with Parkinson's from a multidisciplinary team of clinicians. The goal is to provide a broader picture and deeper understanding of their diagnosis and suggest treatments that can improve their quality of life. Anyone with Parkinson's can make an appointment with the Center for an assessment.

A physical therapist, occupational therapist, speech-language pathologist, social worker, and physician conduct evaluations over three hours and provide joint recommendations. Clinicians are experienced with the disease and understand specialized Parkinson's treatments such as Lee Silverman Voice Treatment (LSVT) Big and Loud Programs that address motor and speech deficits caused by PD. Based on findings from the assessment, clinicians offer recommendations for care. While clinicians only provide an assessment during the Clinic itself, they are able to offer recommendations in response to individual needs from a multidisciplinary perspective and can provide therapeutic care in individual follow-up visits.

"Typically, patients have to have separate appointments to see an occupational therapist, physical therapist, speech pathologist, and other specialists," says Yallof. "The Center enables people with Parkinson's to see these clinicians in one place where they communicate among each other to create a holistic plan."

In addition to receiving an assessment, they can receive advisement on personal questions and learn about resources that can support them. "Patients and their caregivers spend half a day with us and get immersed in talking to clinicians in addition to getting an evaluation," says Dr. Wong. "They can learn more about what to do and what to expect in the future. In addition, they get recommendations on what other therapies could help them as part of their rehabilitation treatment." A social worker can also help them with insurance, resources, and personal situations. When visiting the Clinic, people with Parkinson's also learn about opportunities to participate in research studies.

Research Opportunities

Another goal of the Center is to gather information on the outcomes of those who were assessed to document their response to treatments for future patient use. "We track individuals to ensure they are receiving recommended treatments and record outcomes to these treatments," notes Dr. Wong. "This allows us to understand which of our recommendations are most effective and for whom, so that if a new person comes to the Center with a particular set of symptoms, we can make more effective treatment recommendations."

The Center also gives people with Parkinson's the opportunity to participate in PD studies conducted by Moss Rehabilitation Research (MRRI) by joining the MRRI Research Registry. Researchers use the registry to find volunteers for studies that investigate the challenges of the disease related to speech and language, motor skills, attention, and memory in developing best practices for treatment.

"Once people consent to join the registry, they provide authorization to share their medical history and symptoms so I can determine a good match for research studies," says Yallof. "Right now, we are running two studies, one focused on effort-reward trade-offs and the other on habit formation. The goal of these studies is to gain a better understanding of the effects of Parkinson's on a person's ability to adopt new behaviors, such as those taught during therapy." Learn how to join the MRRI Research Registry.

People with Parkinson's can choose to take advantage of specific services offered by the Klein Family Parkinson's Rehabilitation Center. There is no obligation to get an assessment before joining a research study, or vice versa.

“Our goal is to serve as a resource for people with Parkinson’s and their caregivers and to be on the forefront of thinking about research and care for individuals with Parkinson's,” says Wong.

Current and past patients at Jefferson Moss-Magee Rehabilitation, as well as anyone within the community diagnosed with Parkinson’s, can join the support group. Individuals interested in participating in the Clinic or the support group can email Sky Yallof at hxy115@jefferson.edu or 856-431-3805. Or contact the Center directly at KleinParkinsonsClinic@jefferson.edu. The Center is open every fourth Thursday of the month. Appointments are needed for assessments.


Find out more about
 The Klein Family Parkinson’s Rehabilitation Center

 

 

Inside MossRehab

Related Posts

Permalink | Read Comments (0) | Add a Comment | Subscribe
*Name:
*Email:
Address Line 1:
Address Line 2:
City:
State:
Zip:
*Comments:  
Captcha:
Comments

0 Comments so far | Skip to comment form

Share This Page

Newsletter

Receive the latest blog updates from MossRehab.

Recent Entries

How Can We Help You?

If you have a question or comment, please send an email to

US News and World Report Best Hospitals Badge

Top-ranked rehabilitation hospital in Pennsylvania and top 10 in the U.S.

MossRehab (main hospital)

60 Township Line Road, Elkins Park, PA 19027
Directions All Locations
select