The Eleanor and Lou Gehrig ALS Center at Columbia University operates two, full-day multidisciplinary ALS clinics each week. We have also recently established a monthly satellite clinic at ColumbiaDoctors Tarrytown to better serve our ALS patients and families in Rockland and Westchester counties, Fairfield county, northern New Jersey, and beyond. These clinics are sponsored by the Greater New York Chapter of the ALS Association and the Muscular Dystrophy Association, and made possible by the generous support of the Tow Foundation, Project ALS and many patients and families who value the services these clinics provide.
In collaboration with our colleagues in the Departments of Psychiatry, Pulmonary Medicine, Gastroenterology, and Interventional Radiology at Columbia University Irving Medical Center, our clinical staff strives to meet the complex medical, psychological, and social needs of the ALS patients and families for which we care.
Our nurse practitioner (NP) functions as the director of clinical services, overseeing the care provided by our multidisciplinary staff of health professionals. The NP works with the clinic physicians to establish and realize a personalized, comprehensive care plan for each ALS patient. She is involved in all aspects of patient care and education, including the placement and use of feeding tubes, and non-invasive and invasive ventilatory support. Along with our physicians and social worker, our NP also leads discussions around advanced directives, hospice/palliative care, and other end-of-life issues that require informed decision-making by patients and families.
Physical and Occupational Therapy
A physical therapist (PT) works with ALS patients to prolong mobility and function and makes recommendations for exercise, home, or outpatient therapy as well as adaptive and assistive devices needed to address the physical challenges of life with ALS.
An occupational therapist (OT) works with ALS patients to maintain independence in daily activities, including personal care, mobility, and work-related functions. This includes providing guidelines for exercise and range of motion and recommending assistive devices and medical equipment (e.g. wheelchairs, hospital beds, shower chairs) that ALS patients and families need to maintain one’s quality of life.
Speech and Swallowing Therapy
A speech pathologist evaluates speech and swallowing difficulties related to ALS, and makes recommendations for technologies that assist ALS patients to communicate.
A registered dietitian provides practical advice and counseling to ALS patients and caregivers about food and diet to maintain adequate nutrition and hydration. This includes recommendations for preparing meals that are safe and nutritious and guidance for meeting calorie and fluid goals in patients with a feeding tube.
A respiratory therapist evaluates breathing function in patients with ALS and makes recommendations for assistive devices, including a cough assist to clear and maintain one’s airway, and various types of non-invasive and invasive ventilatory support systems. The respiratory therapist is involved in the discussion of advanced directives that guide the difficult decisions that ALS patients and families face in the course of the disease.
The social worker provides support to individuals and families struggling with the practical and psychological challenges faced by those living and dying with ALS. The social worker helps with a variety of insurance, disability, and other benefits on which patients and families depend and works to educate and to provide access to critical resources and services available from public and private sources, including the ALS Association and Muscular Dystrophy Association. The social worker helps to create advance directives and is involved in discussions of hospice/palliative care and other difficult end-of-life issues.
The genetic counselor works with ALS patients and families to evaluate family history, to establish the possible contribution of genetic mutation to an individual ALS patient’s disease, and to assess the risk that family members face of developing ALS or a related disorder (e.g. frontotemporal dementia (FTD)). The genetic counselor provides education and support to patients and families at risk, offers counseling to individuals considering genetic testing, and assists in the interpretation of genetic testing results. The genetic counselor counsels patients and unaffected family members considering involvement in research studies that involve the identification and characterization of patients with heritable forms of ALS, including our ALS Families Project, which focuses on pre-symptomatic carriers of known ALS-causing mutations who are at risk of developing motor neuron disease and/or FTD.
Eligible patients at the center have opportunities to participate in studies that will elucidate disease mechanisms and reveal new treatment strategies and access to the most promising therapeutic trials.
Resources for Patients and Families
In addition to providing comprehensive clinical care, we strive to educate our patients and families about ALS and to empower them to become their own advocates in the fight against this disease. The ALS Center staff helps ALS patients and families access vital resources through ALSA, MDA and other community-based organizations dedicated to the care of patients with ALS. We provide educational materials that help our patients make informed decisions about their treatment and care, and we offer supportive services to patients and caregivers.
Make an Appointment
To make an initial appointment with an ALS physician or to schedule an ALS Clinic appointment, please call 212-305-6788, or email Neuro_ALSCenter@cumc.columbia.edu. All relevant medical records should be faxed to 212-305-1504.