APDA’s Grassroots Network: APDA Information & Referral Centers

Get to know the programs we offer at our Information & Referral centers

APDA is the largest grassroots network serving the Parkinson’s disease (PD) community. This network is comprised of APDA Chapters and APDA Information & Referral Centers across the country, through which we provide critical resources, programs and services to people living with PD and their families.

What is an APDA Information & Referral Center?

APDA Information & Referral (I&R) Centers are linked to academic medical centers that provide excellent PD care. There are 20 APDA I&R Centers and each Center has a coordinator who directs all the activities and serves as an integral resource for the local PD community. To help you better understand how APDA serves people with PD, we wanted to give a behind-the-scenes glimpse of how APDA I&R Centers operate and what programs and services they help provide to the PD community. To do this, we interviewed three of our I&R coordinators:

Cathi Thomas, RN, MS

APDA I&R Center at the Boston University School of Medicine, Boston, MA

 

Sim Basta, PA

APDA I&R Center at NYIT College of Osteopathic Medicine, Old Westbury, NY

 

Anushka Shiell

APDA I&R Center at Abbott Northwestern Hospital, Minneapolis, MN

 

What are the key functions of an APDA Information & Referral Center?

Sim: The I&R Center serves as a community resource which provides guidance to PD patients, their care partners, and their families during all stages of the disease. The Center helps to remove barriers to care, and helps to empower its community through advocacy, support, education, and exercise. It also helps to bring people together who are experiencing similar circumstances. The Center fosters relationships between patient and caregiver, patient and family, patient and physician(s), and patient and community resources.

Cathi: I agree with what Sim said. Here is a list that I put together of many of the things that an APDA I&R Center is charged to do.

1. Operate a telephone helpline (or via e-mail) for people with PD, family members, health care professionals, and other community members. We are often the first line of defense when someone gets a PD diagnosis.
2. Provide information and resources about PD symptoms, current therapies, and emerging research (using great materials developed by APDA – publications, web materials, webinars, etc.)
3. Maintain a list of local experts in PD including physicians, rehabilitation specialists, and others, and help connect people to those experts to ensure that people with PD receive optimal care
4. Connect people with local social service agencies and services that support people with PD and family members
5. Develop and offer programs for people with PD to promote wellness and increased quality of life
6. Establish and maintain support groups.

What is a typical day like for you as an APDA I&R Coordinator?

Anushka: The first thing I do when I begin each workday is check my voicemails and emails and respond to queries sent in by people in the community. After I have worked on those direct connections, I move on to support and education program planning, which includes everything from identifying topics of interest, reaching out to speakers, planning the agenda, creating promotional materials, and marketing the event via connections with local contacts, social media and press releases. If I have a PRESS^TM* support group session coming up, I work on getting the word out about that as well. Depending on what time of the year it is, there may be a digital edition of the Minnesota Messenger APDA newsletter that needs to be worked on, so I may be planning that.

One new project that I have been working on this year is reaching out to primary care clinics in rural Minnesota. Since many people with PD receive care from their primary care physicians, especially in rural areas, we want to make sure those clinics connect people with PD to APDA for education and support.

*PRESS^TM (Parkinson’s Roadmap for Education and Support Services) is a specialized eight-week psychosocial support group program developed by APDA and led by a trained facilitator. It is geared for people who have been diagnosed within the past five years.

What kinds of APDA programs do you help implement?

Cathi: Our Center administers The Parkinson Good Start program (for newly diagnosed), the PRESS^TM program, community support groups, and care partner groups.  During the pandemic I worked closely with our APDA Massachusetts Chapter in delivering additional educational and support programs virtually, which has been a great way to keep the PD community engaged and connected despite stay-at-home restrictions.

Sim: Programs that we have implemented include a very robust Rock Steady Boxing program, tai chi classes, dance classes (pre-COVID), a social support group for people with PD in the Black community, and a women’s young onset PD group. We also had 10-12 guest speakers last year.

What is the most common question people ask when they first reach out to you? What do they need help with most?

Cathi: Two common points of entry to APDA are at diagnosis, when people are looking for information on what PD is and how to access support, and when PD starts to progress to more advanced stages, when family members are typically requesting information on support services that are available.

Sim: The most common question I receive initially is “How will my disease progress?”  Most have come straight from the neurology office not knowing the plethora of PD resources they will have access.  Most just need guidance in finding a starting point/plan of action to tackle this new stage of life. That’s what we’re here for.

Anushka: Similar to what Cathi said, people reach out to our I&R Center at different points in their PD journey. I hear from people who are newly diagnosed and looking to learn more about PD, and people who have been living with PD for years and are now looking to get connected with more resources to help them on the journey. The questions I am most commonly asked are:

• How do I find exercise programs for people with PD?
• Can you refer me to a PD support group?
• Are there programs that will help me pay for my PD medication?
• Can you refer me to a counselor or therapist?
• My doctor mentioned you have a Patient Aid Scholarship program. Can you tell me more about that?
• Do you have information about where to go for driver evaluations?
• Do you have referrals for in-home help or home health agencies?

What do you like most about your job as an APDA I&R coordinator? What part of your job do you find most rewarding?

Cathi: My favorite part of the job is when I make a difference in a person’s life. It may be simply sharing how best to communicate with their healthcare provider if they are feeling unsure about something or referring a person to a community exercise program. Small adjustments can make a big difference.

Sim: I always tell my patients that I learn as much from them as I provide to them. My local PD community is very inviting. They are always appreciative of the resources we provide and work hard to lift the spirits of the others navigating the same challenges. My patients have so easily welcomed me into their lives. They are always so excited to see one another, especially during our frequent Zoom gatherings/classes.

Anushka: My favorite part of my job is connecting with people in the PD community. I love sharing presentations at PD support groups (in person, pre-COVID, and currently via Zoom). I also deeply enjoy working with local facilitators to implement the PRESS support group and meeting our community at our educational symposiums. I have been the APDA I&R Coordinator for five years, and I love seeing familiar faces and names at events and support groups over the years. I get so much joy and satisfaction when I hear from somebody who attended a symposium that the information presented was helpful to them. I think it comes down to touching lives and making a difference, and that is something that we do for the PD community as I&R Coordinators.

Are there any stories that stand out to you where you helped someone with a particularly interesting or complicated situation?

Cathi: Our I&R Center is located in a large urban safety net hospital and often people have some additional challenges in addition to having a diagnosis of PD. This may include a language barrier, or financial concerns, or even being diagnosed later in the course of the disease due to limited health care access. It is incredibly rewarding to be able to provide support to a person using an interpreter or have materials in different languages. It is also rewarding to provide information on financial programs available so that the person can afford a new therapy.

Sim:  I have been working with a patient for three years who is Young Onset who was on Medicaid with few resources and no local family support system. Our fellow Rock Steady Boxers raised money for a “scholarship” to cover the costs of his exercise class. He also joined our monthly support group and weekly peer-facilitated group and now attends our Center two to three times a week. He made many PD friends who even pick him up for appointments. Unfortunately, he suffered a stroke recently but recovered quickly with few deficits and we arranged for daily calls from other patients to keep him motivated to get discharged. To see our community come together like that and support each other is incredibly rewarding.

I am also very proud of our 50 + medical and physical therapy students (our “Buddy Program”) who paired up with our patients during the COVID-19 lockdown. The students provided companionship and support to patients isolated at home via phone calls or Zoom. They also delivered groceries and boxing equipment to their homes.

What is one piece of advice you would give to someone who has been recently diagnosed?

Cathi: First, I always acknowledge a person’s feelings and try to understand where they are in the process of receiving a diagnosis.  It is also important to respect the person’s health care team, so I provide information on available support and services and encourage them to share this with their health providers. If a person is not connected to experts in PD, a reliable referral list can be quite helpful.

Sim: You are not alone in this battle. Take time for yourself. Educate yourself, and when you are ready, come up with a plan, and then continue to ask lots of questions. Exercise, exercise, exercise! We have seen the best outcomes for patients who keep a very regimented and structured exercise program.

Anushka: Please do not hesitate to reach out to your local APDA I&R Center and visit our website. APDA offers a wealth of trustworthy expertise regarding all areas of living with PD. APDA educational publications are a fantastic resource. In addition, joining a PRESS ^TM program in your area is a great step for helping you learn more about PD, as well as helping you connect with others who are going through something similar.

Is there anything else that you would like to share with our community about your role as an APDA I&R coordinator?

Cathi: As a nurse, I am positioned to inform individuals about referral sources and community services that are important for optimum continuity of care. Today health care is fragmented, PD is chronic and complex, and many unmet needs still exist. APDA provides this wonderful service to help fill the many gaps in information and support.

Sim: The PD community should rely on the APDA I&R Coordinators as a navigator for both resources and support. We wear many hats and I always tell my group members that if I do not have information about a resource, I will use my APDA network to find that information.

Anushka: The APDA I&R Center and Coordinator are here to support you. No question is “too small” or “too big.” We are always happy to help.

To find APDA resources near you, please visit the Community page of our website, email us at apda@apdaparkinson.org, or call 800-223-2732.

 Tips and takeaways

• APDA supports Information & Referral (I &R) Centers around the country which provide guidance to people with PD and their care partners. The I&R Centers are an integral part of the APDA nationwide grassroots network
• I&R Centers provide information about PD and community resources, offer educational and wellness programming and manage PD support groups
• Our I&R coordinators are a dedicated group of individuals that connect directly with the local PD communities around the country