Director & Neurologist
Dr. Richard Bedlack grew up in a small town in central Connecticut. He went to college at William and Mary in Virginia, then back to Connecticut for an MD and Ph.D. in Neuroscience at UConn. Finally, he came to Duke where he completed his Medicine Internship, Neurology Residency, Neuromuscular Fellowship, and Masters in Clinical Research Science. He is currently a Professor of Neurology at Duke and Director of the Duke ALS Clinic. He has won awards for teaching and patient care, including best Neurology teacher at Duke, Health Care Hero, Strength Hope, and Caring Award, America’s Best Doctor, the American Academy of Neurology Patient Advocate of the Year, and the Rasmussen ALS Patient Advocate of the Year. He has received ALS research grants, participated in ALS clinical trials, published more than 100 ALS articles. He is the leader of the international ALSUntangled program which utilizes social networking to investigate alternative and off-label treatment options for patients with ALS, and leader of the ALS Reversals program which attempts to understand why some people with ALS recover from it, and to make this happen more often. He lives in Durham, North Carolina with his wife Shelly and two mischievous cats.
Dr. Xiaoyan Li is a specialist in neuromuscular medicine and research, with a focus on ALS. After completing medical school at Taishan Medical College (China), Dr. Li completed her residency in neurology at the University of North Carolina at Chapel Hill and her neuromuscular fellowship at Duke University. She is currently an Assistant Professor of Medicine and Neurologist at Duke. Neurology is being transformed by scientific advances and exciting new treatments are becoming available. Dr. Li uses her expertise, both in clinical medicine and basic science, to help find effective treatments for this disease. She encourages and welcomes patients to participate in clinical research that will move us forward in finding effective treatments and, ultimately, a cure. Her goal is to always make an accurate diagnosis and provide effective treatment. However, treating every person with humanity is equally important to her. She believes in listening carefully to people as they describe their symptoms and as they express concerns they may have. For Dr. Li, listening and treating people with respect is key to the doctor-patient relationship. Dr. Li lives in Chapel Hill, NC with her husband and 2 children.
The role of respiratory therapy is to monitor each individual’s breathing abilities over the course of their illness with the goal of maintaining breathing function and maximizing comfort.
These services include:
- Evaluation of lung function via Forced Vital Capacity (FVC) and Maximum Inspiratory Pressure (MIP) measures to diagnose and treat respiratory impairment
- Determination of need for non-invasive respiratory equipment, such as Noninvasive Ventilation (NIV), Cough Assist devices, portable suction, ventilators and oxygen
- Education and recommendations about respiratory exercises, such as breath stacking and hyperinflation, with the goal of maintaining respiratory muscle strength
- Monitor and adjust settings on respiratory equipment
- Patient and family education about respiratory issues specific to ALS and motor neuron disease, such as ventilation decision making
Physical therapy provides many services and options for people diagnosed with ALS and other motor neuron disorders. ALS and motor neuron disorders have the tendency to change one’s physical status over time and affect individuals in different ways. Our philosophy is to tailor our interventions to meet your specific needs with the ultimate goal of optimizing your independence. Some people who attend our clinic live nearby, but many people are not from the local area. Physical therapy provides direct services and consultation to provide you with information and education on a variety of areas that may affect your lifestyle. As we have contact with many people diagnosed with ALS, we hope to offer you, and your local healthcare providers, information on how to best meet your needs wherever you live.
Interventions may include the following:
- Exercise programs with an emphasis on safety, joint protection and energy conservation.
- Education on outpatient, home health and aquatic (pool) physical therapy services
- Education and recommendation for equipment that facilitates independence and enhances quality of life at home and in the community. This may include braces to keep you walking, walkers for stability, power equipment (wheelchairs) to allow access to areas within and outside of your home and a variety of other devices for safety and independence at home (patient lift devices, bathroom equipment, etc.)
- Specific problem solving to address mobility issues including negotiation of stairs, transfers off the floor and into the car, as well as bed mobility.
- Caregiver and family education on how to assist an individual with mobility related issues. Consideration for safety and avoidance of injury is emphasized.
The role of the Occupational Therapist is to work with individuals to maintain their ability to participate in their everyday activities. Tasks such as eating, bathing, dressing, writing, working, and using the computer can become challenging over time. The goal of the Occupational Therapist is to provide evaluation, assistance, and education that enable individuals to maintain some level of independence while performing these daily tasks effectively and safely.
Interventions provided may include:
- Assessment and treatment of functional activities (daily living activities, homemaking, functional cognition, community re-entry, and use of assistive devices.
- Assessment and instruction in adaptive equipment.
- Driving Evaluations: Visual acuity, visual-perceptual skills, memory/cognitive skills, reaction time, physical functioning, understanding of traffic signs and road regulations.
- Assist in developing home exercise programs to preserve upper extremity function
- Upper Extremity Splinting/Orthoses evaluation and fabrication.
Speech Therapy / Rehabilitation Engineering
Speech Pathology provides valuable services to patients with ALS and other forms of motor neuron disease. Individuals with motor neuron disease may experience changes in their ability to communicate and/or safely eat and drink. As a part of the multi-disciplinary team, the Speech Pathologist provides evaluation and treatment to address both progressive dysarthrias of speech (slurred speech) and dysphagia (swallowing problems).
These services include:
- Evaluation of progressive dysarthria including assessing the role of assistive technology in meeting communication needs
- Augmentative communication evaluation as speech intelligibility declines
- Evaluation of access to technology should the use of the upper extremities become difficult
- Evaluation of dysphagia
- Recommendations to increase safety when eating and drinking
- Patient and family education
The Dietitian’s role on the ALS interdisciplinary team is to help the patients maintain and/or achieve good nutritional status throughout the disease process. Nutrition plays an important role in maintaining the quality of life.
Services provided by our Dietitian include:
- Completes a full nutrition assessment during the first visit
- Evaluation of weight at each clinic visit to encourage weight maintenance and monitor weight loss or gain
- Assessment of nutritional intake, as well as the swallowing issues that may affect intake
- Education regarding nutritional supplements and diet modifications
- Provides tips and recipes for maintaining good nutrition
- Education and diet recommendations for individuals with feeding tubes
Medical social workers have a Master’s degree in the field of social work and have specialized training and experience focusing on health-related issues and their impact on physical, emotional, social, and spiritual functioning. Social work provides screening, assessment, and intervention to patients and their families, empowering them to deal with the stresses that accompany a diagnosis of ALS.
Services provided by our clinical social worker include:
- Psychosocial Assessments of Patients
- Patient and Family Education
- Counseling and Emotional Support
- Advance Care Planning Consultation
- Community Resource Referrals
- Home Health and Hospice Care Coordination
- Health Insurance, Social Security & Disability Benefit Guidance and Advocacy
Clinical Research Nurse Coordinator
Michelle Ward, RN
Clinical research nurse coordinators are nurses who have received specialized training and certification in coordinating clinical research trials. Clinical trials can include studies of new medications, studies to collect data to assist with diagnosis and monitoring of disease progression and those to study new non-pharmacological interventions.
Services provided by our clinical research nurse coordinator include:
- Screening for Participation in Clinical Trials
- Patient and Family Education Research
- Coordinating Clinical Trial Participation
- Direct Research-related Patient Care (lab studies, medication administration, etc.)
Assistive Technology Professional (Stalls Medical)
A certified ATP has demonstrated competence in analyzing the needs of consumers with disabilities, assisting in the selection of appropriate assistive technology for the consumer’s needs, and providing training in the use of the device.
Services provided by our ATP from Stalls Medical include:
- Wheelchair seating and mobility evaluations
- Mobility equipment maintenance and repair
- Equipment education and training
- Resource referral regarding accessible transportation
ALS Association North Carolina Chapter – Care Services Representatives
Erin Belleau, MSW, LCSW Meg Whitaker, MSW
The ALSA Care Services representatives help patients and families cope with the day-to-day challenges of living with ALS by providing a variety of services both in the clinic setting and the community.
Services provided by the ALSA Care Services Representatives:
- Patient and family education
- Emotional support to assist with general coping and adjustment
- Community resource referral information
- Education on ALSA programs and support services