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Amyotrophic lateral sclerosis, or ALS, is a disease in which certain nerve cells in the brain and spinal cord slowly die. These nerve cells are called motor neurons, and they control the muscles that allow you to move the parts of your body. ALS is also called Lou Gehrig's disease.
People who have ALS gradually become more disabled. How quickly the disease gets worse is different for everyone. Some people live with ALS for several years. But over time, ALS makes it hard to walk, speak, eat, swallow, and breathe.
These problems can lead to injury, illness, and eventually death. In most cases, death will occur within 3 to 5 years after symptoms begin, although some people do live for many years, even decades.
How can you get involved? See details below about the June 5 ALS fundraiser.
Our plan is to raise awareness and funds for the care and cure of ALS and also raise the profile of our ALS clinic for the NorthShore community,” said Dr. Kincaid.
We asked Octavia Kincaid, MD, Neurologist at NorthShore, about promising research and treatment for ALS.
What are the symptoms of ALS?ALS is a disease that causes painful progressive weakness of voluntary muscles. Initial symptoms are often asymmetrical weakness of an arm or a leg, although a small number of patients will experience trouble speaking, swallowing, or breathing as the first sign of a problem. Sometimes, stiffness is the main issue. Pain is rare in ALS, although the discomfort of being weak or immobilized can be an issue for some people.
Is there new research that gives a clearer picture of what causes ALS? Although we continue to learn more about ALS every year, we still don’t completely understand why the nervous system starts to decline in this neurodegenerative disease. Researchers have identified multiple chemical components to the breakdown of the motor neurons (the nerve cells that control the muscles) but the trigger that starts this cascade of events remains elusive.
Are there therapies that can lessen the symptoms or extend life for an ALS patient?There are two FDA-approved medications that can slow the progression of weakness in ALS. We also use a number of medications and therapies which can improve comfort and maintain function and independence, even though we do not have a cure for ALS yet.
What tips do you have to help manage ALS after the diagnosis?Find a team to guide you and support you and your family. Support groups, both for patients and for caregivers, can be a great resource, as can organizations like the ALS Association. I often tell patients and families that everyone in their lives WANTS to help, but may not know-how. Be specific and even designate one person as the captain of the team, to delegate things like meals, driving, errands.
What does the ALS Clinic at NorthShore offer for patients recently diagnosed with ALS?Like multidisciplinary ALS clinics around the world, the ALS clinic at NorthShore brings numerous specialists together to care for patients and families living with ALS. In addition to Neurologists and Pulmonologists, patients in our clinic will see Physical and Occupational Therapy, Speech Therapy, Dieticians, a Social Worker, and specialists in braces and wheelchairs. During this extended office visit, patients and families have access to education, guidance, and recommendations specific to their situation. Seeing our patients every few months allows us to anticipate problems or changes and be proactive to maintain function and independence as long as possible.