What You Should Know About ALS

The ALS Comprehensive Care Center at Stony Brook is designated "A Center of ExcellenceSM" by the ALS Association. Rahman Pourmand, MD, Professor of Neurology and Director of the ALS Comprehensive Care Center, offers some insight into the disease.

What is ALS?

Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS causes motor neurons (nerve cells) to die, and as they do, the brain loses the ability to initiate and control muscle movement. This results in muscle weakness and wasting, severely limited movement, and eventual paralysis.

Who is at risk for developing ALS?

The incidence of ALS in the U.S. is about two people per 100,000 a year. It is estimated that as many as 30,000 Americans have the disease at any given time. Most people develop ALS between the ages of 40 and 70, with an average of 55 at the time of diagnosis. It can also occur in persons in their twenties and thirties. ALS is 20 percent more common in men than in women; however, with increasing age, the incidence is more equal between men and women. Ten percent of the cases are familial, while the majority develop sporadically and involve no family history of the disease.

What are the symptoms?

The symptoms of ALS differ among individuals. Muscle weakness is its hallmark, occurring in approximately 60 percent of patients. At the onset, symptoms may be so minor that they are overlooked. A person may have balance or dexterity issues, or become clumsy. Other symptoms may include muscle twitching and cramping, slurred speech and difficulty projecting the voice, and, in more advanced stages, shortness of breath and difficulty breathing and swallowing. If you have these symptoms, it is important to see a doctor. The earlier ALS is diagnosed, the more effectively symptoms can be managed and proactive treatment planned.

How is it treated?

Although currently there is no cure for ALS, treatment can help manage symptoms and may delay the onset of the more serious manifestations. The ALS Comprehensive Care Center at Stony Brook takes a multidisciplinary, individualized approach. Patients visit the ALS clinic, held twice a month, where, over the course of three to four hours, they see a number of medical professionals specializing in ALS. Depending on the needs of each patient, this clinic visit can include a neurologist, nurse, psychologist, social worker, occupational therapist, physical therapist, speech language pathologist, nutritionist, or other specialists brought in on a consultant basis. The team helps patients manage the symptoms and helps families manage the stress of caregiving. They connect patients with specialty equipment (e.g., wheelchairs or technology that aids in speaking and swallowing). They also can refer patients to other Stony Brook physicians, including a team of surgeons, when appropriate.

What are some of the misconceptions about ALS?

Many people do not realize that diagnoses of ALS can differ dramatically. In some patients, the symptoms level off; others survive many years with the disease. There are patients who have lived for more than 10 years with ALS. Further, there is currently one FDA-approved medicine, called riluzole, that can help to slow the symptoms. Although function does not return, the medication can, in effect, delay the progression of disease in some patients by months to a year. Since the medication is most effective in the earlier stages of ALS, getting an early diagnosis of the disease is very important.

What else distinguishes Stony Brook's approach?

As one of just 34 ALS Association Centers of Excellence in the country, Stony Brook's ALS Comprehensive Care Center uses a team approach that provides the highest quality of care for people living with ALS and their families. The team stresses family involvement in all aspects of treatment, and at the clinic, the social worker talks with family members about their issues and concerns. Education is also a focus, and a support group is held monthly. Frequently, grand rounds and seminars are held for physicians and physicians-in-training, and talks are presented for family members and the general public about ALS. Transportation can be arranged, parking is free, and travel time is minimal--all major considerations for families and caregivers of patients with ALS who may be wheelchair-bound and limited in movement. Finally, Stony Brook is now embarking on a research program, which means that groundbreaking treatments and the latest protocols will be available to our patients.

For more information about the ALS Comprehensive Care Center, call (631) 444-4000.

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All health and health-related information contained in this article is intended to be general and/or educational in nature and should not be used as a substitute for a visit with a healthcare professional for help, diagnosis, guidance, and treatment. The information is intended to offer only general information for individuals to discuss with their healthcare provider. It is not intended to constitute a medical diagnosis or treatment or endorsement of any particular test, treatment, procedure, service, etc. Reliance on information provided is at the user's risk. Your healthcare provider should be consulted regarding matters concerning the medical condition, treatment, and needs of you and your family. Stony Brook University/SUNY is an affirmative action, equal opportunity educator and employer.