APDA’s National Rehabilitation Resource Center: In conversation with Dr. Terry Ellis

Dr. Gilbert converses with the Director of the National Rehabilitation Resource Center

APDA’s National Rehabilitation Resource Center: In conversation with Dr. Terry Ellis

Recently, APDA created and launched an online Parkinson’s disease (PD) training course for fitness, health and wellness professionals who work with the PD community. This new effort re-invigorates APDA’s already firm focus on the value of exercise in the management of PD.

In today’s blog, I am pleased to highlight another APDA initiative, the APDA National Rehabilitation Resource Center for Parkinson Disease, a program that brings rehabilitation information to the people with PD who need it. Dr. Terry Ellis, Director of the Center for Neurorehabilitation at Boston University, an APDA Center for Advanced Research, helped create the training video, and is also the inspiration behind the Rehab Resource Center.

The APDA National Rehabilitation Resource Center was established in 2010 and has a toll-free helpline which allows callers to speak with a licensed physical therapist (PT) who can offer advice about exercise and guide callers to resources in their communities.

Recently, I was able to talk with Dr. Ellis about this program:

Q: How does the helpline operate behind the scenes?

A: For many years I have given courses educating physical therapists (PTs) on Parkinson’s disease (PD). Through this work, I have built up a network of PTs around the county with an interest in PD. We keep a database of these PTs and constantly update it with new trainees. Typically, a person will call or email with a request for therapy resource referrals in their area. A PT doctoral student will listen to or read the message and then see what resources we have in our database. Prior to giving out this information, the student will verify that the information is still current. There is nothing worse for a helpline’s credibility than giving out information that doesn’t help! If there is no one in our database in the questioner’s area, the student will do some research to try to find the necessary resources. If new information is given out, that information is put in our database as well, to help the next questioner from that area.

Q: Do you keep a record of the questions?

A: Yes, we log every call and email with the name of the caller/emailer, their location in the United States and the nature of their questions. We would like to be able to gather more information about each inquiry, but we don’t have enough staffing resources to characterize the requests more than that.

Q: What percentage are calls through the helpline and what percentage are emails?

About ¾ are phone calls and ¼ are emails. However, e-mail correspondences are on the rise making up 34% of inquiries over the last year

Q: How many questions do you get a month?

A: The number varies greatly. If we receive some publicity for example, there is a spike in the calls. Perhaps this interview will cause a spike as well! Over a year, the number is about 1,000 calls.

Q: Can you tell our audience how to reach you?

A: The Center’s toll free helpline is 888-606-1688. The email address is rehab@bu.edu. We are referenced on the APDA website and on the BU website.

Q: What are the most common questions that callers ask you about?

A: Most callers are looking for a physical therapist, knowledgeable in PD, in their local area. Others have specific questions about exercise, such as “which is the best exercise for PD”?

Q: Let’s talk about exercise for PD more broadly. In the last ten years, there have been many studies investigating the relationship between different forms of exercise and improvements in motor and non-motor features of Parkinson’s disease. There is so much information out there, what do you tell callers who are looking for the “best exercise for PD”?

A: Exercise is a very important aspect of the treatment of PD.  In general, people with PD who exercise have better function and less disability compared to those who do not exercise. There are four core elements of exercise that are important for people with Parkinson disease – there is no one “best” type of exercise.  Aerobic exercise, strengthening, balance and stretching exercises are all recommended as they target different areas.  Aerobic exercise (e.g., brisk walking, stationary cycling) is important for fitness and may improve motor and non-motor symptoms. Strengthening exercises (e.g., using weights) improve muscle function and reduce PD symptoms related to slowness or bradykinesia. Balance exercises (e.g., tai chi, dance) reduce fall risk, and stretching exercises (e.g., mat exercises, yoga) may reduce stiffness and improve mobility.  An exercise program that contains some elements of all of these is recommended for most people with PD.  That being said, it is most important for people to engage in exercise they enjoy – as sticking to it over the long-term is important to reap the benefits! We encourage those with PD to consult with a physical therapist to receive guidance in developing an exercise program to best meet their needs.

You can check out APDA’s Be Active and Beyond booklet which offers a lot of great information regarding PD and exercise.

Q: Could you explain how the PT program works at BU?

A: We get referrals from the movement disorders physicians at BU, who more or less refer every new patient for an assessment, as well as from movement disorders physicians throughout the Boston area and beyond. We have found that even patients with very early PD, who seem to have no motor impairment beyond a small amount of tremor, actually do have mild impairments in gait and balance if they are tested by a physical therapist. Therefore, we want to get these patients into the clinic as soon as possible and design a PT program for them to keep them at their functional best. We schedule routine six-month follow-ups. I tell my patients that they should think of it in the same way that they think about a follow-up at the dentist. Everyone goes to the dentist routinely for a check-up and cleaning even if there is no specific problem. The same should be true for the physical therapist. At routine follow-up visits, exercise regimens can be tweaked to meet the ever-changing needs of the PD patient.

Tips and Takeaways

  • APDA funds the National Rehabilitation Resource Center, under the direction of Dr. Terry Ellis of Boston University. The Center provides information about physical therapy resources around the country.
  • If physical therapists are a part of your PD wellness team, they can adjust your exercises as the disease changes.
  • There are four core elements of exercise that are important for people with Parkinson disease and no one “best” type of exercise. The four elements are aerobic exercise, strengthening, balance and stretching exercises.
  • Find an exercise you enjoy, and stick with it for the best results.
  • Fitness, health and wellness professionals can take the new online APDA Parkinson’s Disease Training for Fitness Professionals to learn how to safely and effectively develop exercise regimens for their clients with PD.

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Dr. Rebecca Gilbert

APDA Vice President and Chief Scientific Officer

Dr. Gilbert received her MD degree at Weill Medical College of Cornell University in New York and her PhD in Cell Biology and Genetics at the Weill Graduate School of Medical Sciences. She then pursued Neurology Residency training as well as Movement Disorders Fellowship training at Columbia Presbyterian Medical Center. Prior to coming to APDA, she was an Associate Professor of Neurology at NYU Langone Medical Center. In this role, she saw movement disorder patients, initiated and directed the NYU Movement Disorders Fellowship, participated in clinical trials and other research initiatives for PD and lectured widely on the disease.

A Closer Look ArticlePosted in Parkinson's Treatments

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