What Is ALS?
Amyotrophic lateral sclerosis (ALS) is a rare motor neuron disorder. Currently, there is no cure for ALS and no treatment to stop or keep the disease from worsening over time.
ALS mainly involves nerve cells called motor neurons. Motor neurons send messages from your brain to the spinal cord and muscles throughout the body. As ALS progresses, the motor neurons gradually die and stop sending messages to your muscles. Your muscles weaken, twitch, and atrophy (waste away). Eventually, your brain loses its ability to make voluntary movements:
- Talking
- Hand weakness
- Walking
- Breathing
ALS is sometimes called Lou Gehrig’s disease. This refers to the New York Yankees player who retired from baseball after developing the disease in 1939. Most people who get ALS are between the ages of 40 and 70. The average age at diagnosis is 55.
Types of ALS
There are two types of ALS:
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Sporadic ALS—This disease seems to occur at random, with no apparent risk factors or family history of the disease. About 90% of people with ALS have sporadic ALS.
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Familial ALS—This type of ALS means a person inherits the disease from a parent. Researchers have identified more than 40 genes associated with familial ALS.
Early ALS Symptoms
ALS symptoms are not always noticeable at first. However, these symptoms gradually become more evident. ALS symptoms typically start in one area of the body (your speech, hands, or legs) in the early stages of the disease. Muscle weakness and atrophy spread to other parts of your body. Eventually, your breathing is affected.
Amyotrophic Lateral Sclerosis Symptoms
People with ALS experience many symptoms:
- Slurred speech
- Difficulty swallowing
- Decreased hand strength and function
- Difficulty walking
- Muscle loss (atrophy)
- Muscle twitches
- Frequent muscle cramps
The order in which symptoms appear and how quickly the disease progresses differ from person to person. People with ALS eventually cannot stand or walk, breathe on their own, get in or out of bed without help, or use their hands and arms.
ALS can affect a person's ability to think and their behavior, but it does not affect their memory.
Amyotrophic Lateral Sclerosis in Women vs. Men
ALS is more common in men than women. Women tend to get the disease a little later in life than men do. Women are also more likely to have bulbar onset ALS (symptoms that affect speech or swallowing).
Why Choose University of Utah Health?
The Motor Neuron Disease/ALS Clinic is the only multidisciplinary ALS Clinic in the Mountain West region. Our team of specialists have years of expertise caring for ALS patients and understand the challenges of an ALS diagnosis:
- Neurology (neuromuscular neurologist)
- Lung specialist (pulmonology)
- Care management
- Clinical pharmacy
- Genetic counseling
- Nursing
- Nutrition
- Occupational therapy
- Physical therapy
- Respiratory therapy
- Social work
- Speech therapy
We see patients with ALS at the Clinical Neurosciences Center in Salt Lake City and twice a year at our Southern Utah clinic.
The Motor Neuron Disease/ALS Clinic is recognized as a certified Center of Excellence by the ALS Association, ALS United Rocky Mountain, and Muscular Dystrophy Association (MDA).
Find an ALS Specialist
What Causes ALS?
Scientists do not know what causes ALS or why ALS strikes some people and not others. However, evidence suggests that heredity (genes) and environment may play a role. ALS occurs more frequently in adults.
Some studies suggest that military veterans are more likely to develop ALS. The reason for this is unclear.
ALS Testing
If you are concerned that you may have ALS, make an appointment with your primary care provider. They will talk to you about your concerns and symptoms. They may refer you to the Motor Neuron Disease/ALS Clinic at University of Utah Health for an evaluation and testing.
Our neurologists specialize in managing ALS. During your appointment, they will take steps to understand your condition:
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Review your medical history
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Conduct a neurologic exam
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Conduct a physical exam
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Order tests, if appropriate
In the early stages of the disease, ALS symptoms can be similar to other, more treatable conditions. Different tests can help your provider rule out other conditions. Tests include the following:
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Nerve conduction study to measure the electrical activity of the nerves and muscles
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Electromyography (EMG) to test the electrical activity of muscle fibers
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Magnetic resonance imaging (MRI) to produce detailed images of the brain and spinal cord
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Blood tests, as needed
ALS Genetic Testing
Mutations (changes) in more than 40 genes can cause ALS or increase your risk of developing the disease. Genetic testing looks for mutations linked to ALS. Genetic testing is an option for anyone who has received an ALS diagnosis.
If you have ALS, genetic testing could answer questions to help you better understand your condition:
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Why you got the disease
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If your family members are at higher risk of developing ALS
If you have a genetic mutation linked to ALS, you may be able to start a medication or participate in ongoing clinical trials. These medications and trials evaluate treatments that target specific genes.
People related to someone who has ALS may also want to consider genetic testing. Such tests can help them understand their risk of developing the disease. Deciding whether to have genetic testing for ALS is a personal decision. If you or a family member want to learn more about genetic testing, talk to your doctor.
Amyotrophic Lateral Sclerosis Treatment
Researchers are still seeking treatment options for ALS. Current treatments cannot cure ALS but may help in other ways:
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Slow down the disease
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Prevent complications
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Make people with ALS more comfortable and independent
Make an Appointment at the Motor Neuron Disease/ALS Clinic
You will need a referral from your primary care provider or neurologist to make an appointment with our ALS specialists. Call 801-805-7575 or request an appointment.
You will have access to all of our multidisciplinary specialists during each visit to the Motor Neuron Disorder/ALS Clinic. Most insurance companies cover the cost of our specialized clinic care because costs are the same as a basic neurology visit. Our team will work with your insurance and other resources to ensure that services and therapies outside the clinic are less expensive. We’re here to help you and your family deal with the challenges of ALS. We want you to experience the best quality of life possible.
Support Groups
Salt Lake City MDA/ALS Group Meeting
Date & Time: First Tuesday monthly, 6pm-8pm
Location: Sanderson Community Center
5709 South 1500 West Taylorsville, UT 84123
ALS Association-Sponsored Family Support Group in Riverton
Date & Time: 2nd Tuesday of the month
2 pm - 3:30 pm
Location: Riverton Senior Center
Room D
12914 Redwood Rd.
Riverton, UT 84065
ALS Association-Sponsored Family Support Group in Roy
Date & Time: 3rd Thursday of the month
6 pm - 7:30 pm
Location: First Baptist Church of Roy
2025 W 5700 S
Roy, UT 84067
Riverton, UT 84065
ALS Association-Sponsored Family Support Group in Lindon
Date & Time: 4th Tuesday of the month
1 pm - 2:30 pm
Location: Lindon Senior Center
25 Main St.
Lindon, UT 84042
Boise
Please contact the MDA office in Boise for more information: 208-327-0107.
Patient & Family Resources
National Associations
ALS Association
National office phone number: 818-880-9007
Utah office phone number: 425-656-1650
ALS United Rocky Mountain
Phone number: 303-832-2322
Muscular Dystrophy Association (MDA)
National office phone number: 800-572-1717
Utah MDA phone number: 801-278-6200
Idaho MDA phone number: 208-327-0107 MDA-ALS
