 |
CERTIFIED
CENTER |
Services for the Evaluation,
Care, and Treatment of
People with Neuromuscular Disease
Jerry M. Belsh, M.D., Director
Annmarie Coyne-West, R.N., Nurse Care Coordinator
A joint program of
Robert Wood Johnson University Hospital and
UMDNJ – Robert Wood Johnson Medical School
Table of Contents
What is ALS?
What is a Neuromuscular Disease?
The Neuromuscular and ALS Center
Research
Goals of the Center
Services of the Multidisciplinary Team Members
Visits to the Center
General Information
Common Adult Neuromuscular Diseases
Support Group
Directions to the Clinical Academic Building
(CAB)
Contacting Us
What is ALS?
ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease,
is a progressive disease of the motor neurons (nerve cells that control
the skeletal muscles). As motor neurons are affected, gradual weakness,
atrophy, and paralysis of the skeletal muscles occur. This may include
muscles which control walking, arm movements, speech, swallowing, and breathing.
ALS does not affect a person’s intellect, vision, sensation, or bladder
and sexual function. Currently, the cause and ultimate cure for ALS remains
unknown, but effective management is available.
The neuromuscular diseases encompass maladies that cause dysfunction of the peripheral nervous system and muscle. Depending on the area affected, there may be motor symptoms (muscle weakness fatigue, wasting, incoordination), sensory symptoms (tingling, decreased sensation, pain), or autonomic symptoms (incontinence, diarrhea, lack of sweating).
The Neuromuscular & ALS Center is a multidisciplinary program for the diagnosis, evaluation, and long-term management of a host of neuromuscular diseases found in adults. The Center is one of only a handful of neurological climical centers in the State specializing in neuromuscular disease. It is cerified by the national ALS Association (ALSA) and is a Neuropathy Center approved by the national Neuropathy Association. It consists of a coordinated team of medical professionals with expertise in dealing with the specific needs of each patient and family. The Center is enhanced by Robert Wood Johnson University Hospital’s state-of-the-art diagnostic facilities, including a clinical neurophysiology lab for the performance of EMG and nerve conduction studies, and a neuropathology lab for performance of muscle and nerve biopsies. The hospital’s medical experts are also available to patients on a consultation basis.
The Center is one of the clinical programs of the Department of Neurology of UMDNJ-Robert Wood Johnson Medical School and of the Clinical Neurosciences Center of Robert Wood Johnson University Hospital.
Through clinical research, the Neuromuscular & ALS Center hopes to unravel some of the mysteries of ALS, neuropathy, and other neuromuscular disorders. The Center is actively involved in clinical drug trials aimed at finding an effective drug treatment for ALS. Patients attending the Center may be eligible for participation in current research and drug studies, which are carried out by the Center’s neurologist and research coordinator.
To clarify whether
the patient has a neuromuscular disease and to correctly diagnose it,
To provide specialized
services for patients with neuromuscular disease,
To maximize patient
function by utilizing a multidisciplinary approach,
To provide each patient
with information concerning the disease process,
To offer therapeutic
drug trials,
To keep patients
and families informed about research.Neurologist
The physician who provides an expert evaluation of the patient’s neurologic
function, makes a diagnosis, and monitors the long-term course of the disease;
also the team leader who provides a plan of overall management.
Nurse Care Coordinator
A registered nurse who coordinates patient visits to the Center, arranges
for appropriate specialty consultations, helps to run clinical research
studies, and acts as a resource person when patients have questions about
their disease or plan of management.
Physical Therapist
A licensed professional who evaluates muscle strength, walking ability,
balance, and endurance; recommends appropriate exercise programs, mobility
aids, and orthotic devices.
Occupational Therapist
A registered professional who evaluates difficulties in daily activities
(e.g., dressing, self-feeding, bed mobility and toileting); also assists
patients in adapting to upper limb weakness and maintaining independent
function.
Clinical Dietitian
A trained professional who evaluates nutritional and weight status,
assists with eating and swallowing difficulties, and recommends foods and
nutritional supplements.
Speech-Language Pathologist
A licensed professional who assesses speech and swallowing problems
and provides strategies to overcome these problems; recommends alternative
methods of communication, if necessary.
Pulmonary Specialist
The physician who evaluates and monitors respiratory function, treats
pulmonary infections and breathing difficulties, and advises patients regarding
major decisions about long-term respiratory and nutritional support.
Social Worker
A trained professional who helps the patient and family to utilize
appropriate community resources for their health care needs; discusses
health care benefits and concerns related to work and financial matters.
Neurogenetics Counselor
An expert who gives advice concerning whether relatives or offspring
may develop one of the hereditary neuromuscular diseases; also advises
patients about the most advanced genetic techniques for diagnosing these
diseases.
Hospital Chaplain
A certified member of the clergy who counsels patients and families
regarding spiritual and emotional difficulties and provides information
about living wills and end-of-life issues.
About the Director
Dr. Belsh, Professor of Neurology at Robert Wood Johnson Medical
School, is also Chief of the Division of Clinical Neurophysiology and Medical
Director of the EMG and EEG laboratories at Robert Wood Johnson University
Hospital. For over 20 years, he has been providing diagnosis and management
for patients with nerve and muscle diseases at the medical school in New
Brunswick. Dr. Belsh received his MD from Jefferson Medical College, Philadelphia,
PA. He completed his neurology residency training at Downstate Medical
Center in Brooklyn, NY and did his fellowship in Neuromuscular Diseases
and EMG at Mt. Sinai Hospital, New York City. He is co-editor, with Dr.
Philip Schiffman, of the book
Amyotrophic Lateral Sclerosis: Diagnosis
and Management for the Clinician.
Patients are encouraged to remain under the medical care of their referring physician while utilizing the Neuromuscular and ALS Center’s specialized services.
During the patient’s initial visit, the Center’s neurologist and nurse care coordinator perform a thorough diagnostic evaluation, including a careful review of the patient’s history, medical records, and previous test results. Additional tests may be ordered, and the patient may be scheduled to see individual members of the multidisciplinary team depending on neurologic findings and patient needs.
The Center’s neurologist can provide the patient with an expert "second opinion" for suspected neuromuscular disease or ALS in one or two patient visits.
Follow-up visits with the neurologist and other team members are required only if the patient is to be cared for on a long-term basis at the Center.
The Neuromuscular & ALS Center schedules patients on a weekly basis at the outpatient offices of the Department of Neurology, UMDNJ-Robert Wood Johnson Medical School. Information about the Center and about scheduling appointments can be obtained by calling the nurse care coordinator, Mary Bergen, at (732) 235-7331. The Center participates with most major health care insurance companies as well as Medicare and New Jersey Medicaid.
There are four major categories of adult neuromuscular diseases.
Diseases of the motor neuron
include ALS (Lou Gehrig’s Disease) and other motor neuron diseases.
Diseases of the peripheral nerve
include metabolic or toxic peripheral neuropathy, hereditary neuropathy
(e.g., Charcot-Marie-Tooth), nerve entrapment (e.g., carpal tunnel syndrome),
and nerve or plexus trauma.
Diseases of the neuromuscular junction
include myasthenia gravis.
Diseases of muscle
include muscular dystrophy, polymyositis, and metabolic and congenital
myopathy.
The Center participates with Robert Wood Johnson University Hospital in sponsoring a support group open to ALS patients and families. The group provides timely information concerning the disease, gives psychological support when needed, and offers a setting where ALS families can interact with each other. An ALS newsletter informs patients about community resources, current research, and upcoming events.
Contact Information:
The Clinical Academic Building
125 Paterson Street, Suite 6100
New Brunswick, NJ 08901
TEL (732) 235-7331
FAX (732) 235-7344
Neuromuscular and ALS Center of
Robert Wood Johnson
For appointments only, call: (732) 235-7733