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What You Should Know About ALS: Typical Symptoms, New Therapies And Sam Shepard

Charles Sykes
/
AP Photo
Sam Shepard, 2011, in New York. The playrwight/actor died July 27, 2017 of complications from ALS.

You don't hear about amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, too often.

Only about one in 100,000 people contract ALS. That ratio included actor and playwright Sam Shepard, who died from the disease at age 73 late last month. 

Dr. Hamid Kadiwala, a neurologist with Texas Health Fort Worth, says Shepard's age was typical of the disease, but it can affect people in their 50s and 60s, too. There's no cure for the disease, but there are several types of therapies to improve the quality of life of people who have ALS. 

Interview Highlights: Dr. Hamid Kadiwala...

...On the basics of ALS: The way I like to think about it is this connection between the brain and the muscle. We break it down further from the brain to the spinal cord, and the spinal cord out to the muscle. So the brain to the spinal cord is known as the central nervous system – and a part of it, the upper motor neuron system. And from the spinal cord out to the muscle, it’s known as the peripheral nervous system, the lower motor neuron system. Now, many diseases in neurology either have one or the other, but rarely is there a disease that has the combination of both — and that’s what ALS is.

...On Sam Shepard and typical of ALS patients: The age [of Shepard] is typical. It does have a male predilection to it, but it’s not predominant. It’s actually very sporadic, usually from the ages of 50 all the way up to 70, if not a little bit more, but mainly centered around 70. But, gender and race don’t play a role in this.

...On the cure for and treatment of ALS: There are two major paradigms that we focus on with ALS. The first one is with medication to prevent the wasting of that muscle, to prevent the progression of the disease.

Just as important, if not more so, is a holistic approach to that person’s life. When a person has a deterioration of their symptoms, they have difficulty walking, so we bring physical therapy or muscle therapy. They have difficulty in their daily lives doing things we take for granted, so we have occupational therapy work with them and develop ways to get around those issues. They have problems breathing, so we have respiratory therapy.

Additionally, there are issues with depression, psychological issues, social issues, so we have social workers, psychologists and psychiatrists work with them, as well as palliative care to help them toward their end-of-life care.

...On ALS research: There are new therapies out there. There’s one that came out this year. It’s the same idea. It’s about prolonging the quality of the person’s life more than the quantity. So far, as far as I’m aware in terms of research, it’s really focusing on ways to identify the disease early, markers looking for genes or areas where we can actually attack the disease.

For more information:

This interview has been edited for brevity and clarity.

Sam Baker is KERA's senior editor and local host for Morning Edition. The native of Beaumont, Texas, also edits and produces radio commentaries and Vital Signs, a series that's part of the station's Breakthroughs initiative. He also was the longtime host of KERA 13’s Emmy Award-winning public affairs program On the Record. He also won an Emmy in 2008 for KERA’s Sharing the Power: A Voter’s Voice Special, and has earned honors from the Associated Press and the Public Radio News Directors Inc.