ALS, or amyotrophic lateral sclerosis, is a degenerative neurological disease primarily impacting the motor nerves in the brain and spinal column. Symptoms begin mildly, such as a change in the pitch of the patient’s voice or as a hand tremor that interferes with picking something up.
Eventually, the disease causes sufficient degenerative damage that results in the muscles becoming weak or even paralyzed. Also called Lou Gehrig’s disease, the condition is often fatal within about 3-5 years of development. Exactly what causes ALS is still unknown, and with such limited understanding of the disease comes limited treatment options. Here’s a look at the current treatments available for ALS.
Medication
There are currently only two Food and Drug Administration (FDA) approved medications available for Lou Gehrig’s disease. Neither of these medications can cure, stop, or reverse ALS. However, they do seem to be effective at slowing the progression of the disease. Thus, they keep quality of life higher, ease symptoms, and allow for lengthen personal independence. Riluzole (brand name Rilutek) is an oral glutamate inhibitor. Glutamate is a neurochemical messenger found naturally in the body, but too much of it in the spinal cord can be toxic for some of the nerve cells found there. Common side effects include dizziness, gastrointestinal issues, and liver changes.
Edaravone—brand name Radicova—is a central nervous system agent also used for stroke patients. Exactly how it is effective for ALS patients is not understood, but trials showed slower symptom advancement. Edaravone is an intravenous medication. It contains sodium bisulfate which can cause allergic reactions in patients with a sulfate sensitivity. Other common side effects include headaches, bruising, and gait disturbance.
In addition to ALS-specific drugs, medication to control other symptoms—such as constipation, pain, sleep disturbance, and excessive phlegm—may be recommended or prescribed by your healthcare team. Symptomatic treatment can be crucial for improving quality of life.
Combination Therapies
Perhaps the most critical aspect of ALS treatment is that it can be multifaceted. In other words, taking your glutamate inhibitor and going about your daily business is not nearly as effective as finding an ALS care team that will help you find therapies and support to help manage all the different expressions of the disease.
Physical therapy can help you adjust to the changes in your abilities. Learning new exercises and stretches that are catered to your stage of the disease can help diminish pain, improve mobility, and adjust to mobility tools (such as a brace or wheelchair). The goal of occupational therapy is to find ways to manage daily activities as limb mobility and agility decreases.
Specialized care for breathing can help extend life, as fatality can be greatly impacted by reduced diaphragm muscles. Periodic testing is generally necessary. Eventually, it may be necessary to employ mechanical ventilation, a means of artificial breathing used during sleep or continuously as muscles decline. As speech becomes more difficult to understand, speech therapy is a great way to find alternative means of communication.
Psychological Support
Living with a chronic disease, particularly one that leaves your mind completely intact while your body deteriorates, can be extremely hard on the mind. Including a psychologist or psychiatrist in your care team will help battle depression, anxiety, and other conditions that can crop up in tandem with ALS. Dementia and pseudobulbar affect are not uncommon in patients with Lou Gehrig’s disease. Pseudobulbar affect (PBA) is a disorder in which inappropriate and uncontrollable laughter or crying overtake the patient.
This might also include social services support to help manage financial issues, insurance, or other means of providing support to both patient and family. The ALS Association highly recommends a support group for patients with ALS. The chance to meet and communicate with other people who truly do understand what you’re going through can be an incredible means of dealing with the psychological concerns that accompany a chronic disease, as well as a chance to learn more about ALS.
