Learn about the different programs PD&MDC offers

The Parkinson Disease and Movement Disorders Center hosts the Penn Ataxia Center. Under the direction of Dr. Ali Hamedani, MD, MHS, the center offers multidisciplinary care for patients with cerebellar ataxia, with a particular focus on genetic and inherited causes of ataxia. Our team consists of neurologists, genetic counselors, nurse practitioners, and social workers, and we work closely with the physical, occupational, and speech therapists at the Dan Aaron center. We are also a site for multiple clinical trials of investigational symptomatic and disease-modifying treatments for inherited spinocerebellar ataxias.

To learn more about our Ataxia center, please visit https://www.med.upenn.edu/pennataxiaclinic.

The COPE Clinic is hosted at PD&MDC and is a CurePSP Center of Care, as well as a Multiple Systems Atrophy Coalition's Center of Excellence.  CurePSP Centers of Care are medical facilities with established leadership in specialized therapies and treatment options, comprehensive support services and clinical research dedicated to Progressive Supranuclear Palsy, Corticobasal Syndrome and Multiple Systems Atrophy (see below).

MSA Coalition's Centers of Excellence provide access to the best possible and easily accessible multi-disciplinary clinical care and supporting services for individuals affected by Multiple System Atrophy (MSA) and their families through a geographically diverse network of local and/or regional clinical centers. In addition to coordinating care with both clinical and social services, the Centers will provide professional and lay education in the areas they serve, will be involved in, and inform patients of MSA clinical research, and collaborate with The MSA Coalition in its efforts to continually improve the lives of those affected by MSA.

Directed by Dr. Andres Deik, MD, the COPE Clinic utilizes a multi-disciplinary team approach to provide specialized care for individuals with atypical parkinsonian syndromes.  During the clinic, participants are evaluated by the following healthcare professionals with special interest and expertise in atypical parkinsonian syndromes:

• Neurologists
• Palliative Care Specialist
• Clinical Nurse
• Physical, Occupational, and Speech Therapists
• Social Worker
• Research Coordinator

WHAT ARE ATYPICAL PARKINSONIAN SYNDROMES?

Parkinsonism refers to slowness of movement, rigidity, imbalance, and tremor. Parkinson disease is one type of parkinsonism. There are several less common disorders—the atypical parkinsonian syndromes— which are related to Parkinson disease, but characteristically involve other symptoms.

PROGRESSIVE SUPRANUCLEAR PALSY (PSP)

In addition to parkinsonism, patients with PSP typically experience early imbalance and frequent falls, abnormal eye movements, speech changes, and cognitive problems.

CORTICOBASAL SYNDROME (CBS)

Common symptoms of CBS include asymmetric limb stiffness and decreased range of motion, difficulty using familiar objects, involuntary limb movements, and cognitive difficulties.

MULTIPLE SYSTEM ATROPHY (MSA)

The cerebellar form of MSA is marked by unsteady gait, incoordination, and slurred speech.  The parkinsonian form involves slowness, rigidity, and soft speech. Many people have symptoms of both types of MSA. Lightheadedness, bowel and bladder problems, and difficulty swallowing commonly occur in MSA.

LEWY BODY DEMENTIA (LBD)

LBD is associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits affect chemicals in the brain which  can lead to problems with thinking, movement, behavior, and mood.

HOW MUCH DOES COPE CLINIC COST?

Insurance is billed for visits with the neurologist, palliative care specialist, physical, occupational, and speech therapy. Coverage of these services is checked with your insurance company prior to scheduling your appointment and may be associated with a co-pay.   Nursing, research, counseling, and social services are provided at no cost.

HOW LONG IS IT?

COPE clinic can be anywhere from 3-4 hours in length.

HOW OFTEN DO I ATTEND?

Attendance is typically bi annually, or annually, depending on one’s needs.

WHEN IS COPE CLINIC?

COPE clinic only occurs once a month, on a Friday.

WHY DO I NEED COUNSELING?

Living with Parkinson Disease can be challenging both physically and emotionally. You may feel sad, anxious, or a sense of loss.

Have you been recently diagnosed and need  someone to talk to? You may also be a family member caring for someone with Parkinson Disease and experiencing your own feelings of anxiety or sadness.

These feelings are all common and a very real part of the Parkinson experience. Research has shown that treating the psychosocial aspects of Parkinson can be just as important as treating the physical symptoms of the disease. That’s why talking about your feelings can help. The Counseling Program is here to listen, care, and offer ways to help you cope with some of the emotional challenges of living with Parkinson Disease.

WHAT KIND OF SERVICES WILL I FIND HERE?

•  Individual Counseling
•  Couples Counseling
•  Family Counseling
•  Care Partner Counseling

The amount of time you spend in counseling  is variable and based on the individual needs of clients. Our goal is to help you find a way to  manage life with Parkinson Disease.

HOW MUCH WILL COUNSELING COST?

Counseling is a FREE SERVICE provided by  the Penn Parkinson Disease & Movement Disorder Center (PDMDC). The program is funded via a  grant from The Parkinson Council. The Council is a  supporter of service at the PDMDC. If you would like to donate, please visit theparkinsoncouncil.org.

WHO WILL I TALK TO AT THE COUNSELING PROGRAM?

Our staff includes therapists who have specific training in counseling people with chronic  illness, as well as an intimate knowledge of  Parkinson Disease.

Referral services for psychiatric illnesses are available.

WHAT IS DEEP BRAIN STIMULATION?

Deep Brain Stimulation (DBS) is a surgical procedure that involves implantation of thin wire electrodes that electrically stimulate targets in the brain to improve symptoms of movement disorders as well as other neurological conditions. DBS has been performed at Pennsylvania Hospital for movement disorders since the 1990s, and the PD&MDC was involved in pivotal clinical trials demonstrating its efficacy in Parkinson disease. At the PD&MDC, patients considering deep brain stimulation are evaluated and treated by a multidisciplinary team consisting of a fellowship-trained movement disorders neurologist, a fellowship-trained functional neurosurgeon, movement disorders-trained nurse practitioners, a neuropsychologist, and physical, occupational, and speech therapists. 

WHAT ARE SOME COMMONLY KNOWN CONDITIONS DBS IS USED FOR?

PARKINSON DISEASE

While medications and exercise can be very effective for Parkinson symptom management, some patients with Parkinson experience refractory tremor, medication intolerance, or changes in medication efficacy over time. DBS can provide relief of refractory tremor and other levodopa-responsive symptoms in patients who cannot tolerate levodopa or experience reduced efficacy over time. 

ESSENTIAL TREMOR

Essential tremor can interfere with performing daily activities such as writing, eating, and drinking. In patients with Essential Tremor who have disabling tremor despite treatment with medications, DBS can provide significant tremor improvement.  

DYSTONIA

Dystonia is a movement disorder that can cause involuntary movements, muscle spasms, and pain.  DBS has been shown to significantly improve symptoms in some patients with dystonia. 

DBS MULTIDISCIPLINARY PRE-OPERATIVE CLINIC 

Directed by Dr. Meredith Spindler, MD, this clinic utilizes a multidisciplinary team approach to provide specialized consultation for individuals considering Deep Brain Stimulation therapy (DBS). Clinic participants meet with multiple providers who perform evaluations and provide education regarding the benefits and limitations of this procedure, the surgery itself, and post-operative stimulator programming. To participate in this clinic, talk to your neurologist about obtaining a referral. 

COMMONLY ASKED QUESTIONS:

When is DBS Clinic? Once a month and it occurs only on a Friday

How long is it? 1-3 hours in duration, depending on the participant’s needs

Where is it held? 330 South 9^th. St. Philadelphia, PA 19107

How often do I attend? Only a one-time attendance is required if you are considering surgery

After Attending Clinic, will I be scheduled for surgery? One must complete the following steps to be referred to the neurosurgeon:

• MRI of the brain
  • A MRI of the brain completed within the last year
  • If completed at a non-Penn facility, please bring a copy the physical disc and report to your clinic visit, if we do not have it already uploaded in our system.
• Neuropsychological testing
• Attendance at DBS Clinic
• Referrals to neurosurgery can be made during DBS clinic if you have completed numbers 1 and 2 before your clinic visit.

Veterans seen at PDMDC or at our affiliate, the Parkinson Disease Research Education and Clinical Center (PADRECC) at the Philadelphia VA Medical Center can also be evaluated for DBS surgery at the Philadelphia VA. The 6 national PADRECCs were established in 2001 as Centers of Excellence to deliver state of the art clinical care, research, and education programs to veterans in the surrounding region. The Philadelphia PADRECC has long been at the forefront of surgical treatment options for veterans, conducting some of the first clinical trials in this area demonstrating the efficacy of deep brain stimulation for patients with Parkinson disease who no longer respond to medications.  Surgery is also available for appropriate candidates with Essential Tremor or Dystonia.

Led by Dr. Pavan Vaswani MD PhD, the DBS clinic at the Philadelphia VA Medical Center includes a comprehensive multidisciplinary evaluation with a Movement Disorders Specialist, Neurosurgeon, Neuropsychologist, Physical, Speech, and Occupational Therapists, and Clinical Nurse Coordinators. For convenience and particularly for veterans traveling from outside of the Philadelphia area, our nurse coordinators can work with patients to coordinate these evaluations and the MRI of the brain on a single day.

The Parkinson's Disease and Movement Disorders Center hosts the Dystonia Center at the University of Pennsylvania. Under the direction of Dr. Andres Deik, MD, MSEd, the center offers multidisciplinary care for patients with all forms of dystonia, and their families. At the center, patients with dystonia have access to:

• Comprehensive evaluations by movement disorders specialists with expertise in dystonia and other hyperkinetic movement disorders.
• Advanced diagnostic techniques for patients with unusual phenotypes, including consultations with neurogeneticists, mitochondrial specialists and video case reviews.
• Genetic counseling for patients with hereditary forms of dystonia.
• Advanced treatment techniques, including botulinum toxin injections and Deep Brain Stimulation surgery.
• Physical, occupational and speech therapy, social work and a regional support network for patients with dystonia and their loved ones.
• Opportunity to participate in clinical trials for dystonia.

In addition, the Dystonia Center is at the forefront of dystonia research in the region. A member of the dystonia coalition (https://www.rarediseasesnetwork.org/cms/dystonia), the center is involved in collaborative interinstitutional research and committed to the development of new treatments for dystonia. 

If you'd like to learn more about dystonia, please take a look at the following sites:

• What is dystonia? (https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Dystonias-Fact-Sheet)
• Dystonia (https://rarediseases.org/rare-diseases/dystonia/)
• The Dystonia Medical Research Foundation (https://dystonia-foundation.org/)
• Pediatric dystonia care at the Children's Hospital of Philadelphia (https://www.chop.edu/doctors/thakur-nivedita)

Dr. Ali Hamedani, MD, MHS is a neurologist specialized in both neuro-ophthalmology and movement disorders. He maintains a neuro-ophthalmology clinic at Pennsylvania Hospital that is specifically focused on the diagnosis and management of visual symptoms in patients with movement disorders, such as double vision and eye movement abnormalities.

We are proud to offer palliative care for our patients with advanced movement disorders. Our talented, multidisciplinary team consists of Movement Disorders and Palliative care specialists, nurses, social workers, chaplains and counselors. At Penn, we believe in a holistic model of care, and offer support to patients and loved ones alike. For more information, please contact sreichwein@pennmedicine.upenn.edu.

The University of Pennsylvania Huntington’s Disease Center is recognized as a Center of Excellence by the Huntington’s Disease Society of America. Located in the heart of Philadelphia, it is the only Center of Excellence in the tristate area. We provide individualized, multi-disciplinary, family-centered care for families living with HD.

Directed by Aaron Lasker, MD, the staff includes psychiatrists, genetic counselors, social workers, therapists, and a full-time coordinator dedicated to treating and assisting patients with Huntington’s disease as well as their families. Our team engages in ongoing collaborative research with several organizations, clinics, and laboratories.

Click HERE to learn more about how you can help our center fight Huntington's disease.

To learn more about the HD clinic at PD&MDC please visit https://www.med.upenn.edu/pennhdcenter.

Penn Therapy & Fitness physical and occupational therapists (PT/OT), and speech language pathologists (SLP) work with people living with neurologic disorders to restore them to their highest possible level of cognitive and physical function. Our therapists work closely with Penn Neurology and the Parkinson Disease and Movement Disorders Center (PD&MDC) to integrate rehabilitation plans that stay within the Penn Medicine continuum of care. The therapy and education care plans focus on the skills needed for everyday life.

The Dan Aaron Parkinson Rehabilitation Center, located at the PDMDC site, offers PT, OT, and SLP services and several group exercise classes.  Our therapists have many years of clinical experience working with the neurological population and hold numerous specialized certifications including:

• ABPTS Board-Certified Clinical Specialist in Geriatrics
• Allied Team Training for Parkinson (ATTP - Parkinson Foundation)
• Brian Grant Foundation Exercise for Parkinson Training
• LSVT® BIG
• LSVT® LOUD
• PWR! (Parkinson Recovery Wellness)
• Rock Steady Boxing
• Therapeutic Approaches for Dementia
• VitalStim®

The therapy team provides services to several of the PDMDC's specialized clinics:

• Atypical Parkinsonism (COPE) Clinic
• Deep Brain Stimulation Clinic
• Huntington's Disease Clinic

In addition, our therapists serve as educators for other therapy and fitness professionals, and people living with movement disorders.  They teach at several Philadelphia-area universities, serve as PT and OT faculty for LSVT Global and ATTP, and coordinate a yearly rehabilitation conference.

If you live a distance from the Dan Aaron Parkinson Rehabilitation Center, we would be happy to work with you to find you services at one of our other Penn Therapy & Fitness locations.