Newly Diagnosed: Taking the First Step on Your Journey
Becoming educated is a good place to start on your journey with amyotrophic lateral sclerosis (ALS). Whether you are a patient or a caregiver, knowing as much as possible about the disease will help you be a more active participant in your or your loved one’s healthcare. Learn more below about ALS, its causes, symptoms, and how it’s diagnosed.
ALS, also known as Lou Gehrig’s disease, is a progressive neurological disease that destroys nerve cells and causes disability. The disease causes the death of motor neurons, which control voluntary muscles. With the loss of motor neurons, the brain is no longer able to move or control muscle movement, and as a result, muscles become smaller and weaker.
ALS can be familial, or inherited, which is when it’s passed from the parents to the children, although this is rare. The disease most often appears sporadically, which means it is not inherited. Apart from genetic mutations, scientists have proposed other possible causes of non-inherited forms of ALS, including a chemical imbalance, an overactive immune response, and protein mishandling.
Depending on the stage of disease progression, ALS symptoms may range from mild to severe. Early-stage symptoms are mild and typically affect the muscular system. In the mid-stages of the disease, symptoms gradually worsen with increased muscle weakness. As the disease continues to progress, almost all muscles of the body become paralyzed.
There is no single test to diagnose ALS because it shares common symptoms with other neurological diseases. Instead, the diagnosis is based on a period of observation to track the progression of symptoms, combined with a series of clinical tests to rule out other conditions. Observation can take up to a year or more, which can result in a diagnosis taking from 12 to 14 months in the United States.
Living With ALS
Living with ALS and coming to terms with the diagnosis can be a challenge. Finding the right information and support can help ALS patients plan ahead and cope with the disease. There are many charitable organizations that help patients and their families. In addition, there are strategies that can help ALS patients and their caregivers cope with the everyday challenges of the disease.