Amyotrophic Lateral Sclerosis (ALS), known as “Lou Gehrig’s Disease,” is a degenerative disease of the adult motor system. ALS causes damage motor neurons that signal between the brain and spinal cord.  The damage to motor neurons is responsible for progressive weakness.

ALS is a rare disease that can affect any person at any age. For every million people, there are between 20 and 30 people living with ALS. That totals about 30,000 people with ALS in the United States.

While most ALS occurs randomly, about one in 10 cases can be connected to family history. Researchers have found more than 20 genes that can be damaged and cause the disease. 

• Painless progressive weakness
• Thinning and/or twitching of muscles
• Trouble with slurred/nasal speech or swallowing
• Laughing or crying too easily

People with ALS develop weakness that progresses. Most of the time, this starts with loss of strength in an arm or leg. This weakness can include muscle twitching and thinning. In about 20% of cases, symptoms begin with the muscles that support speech and swallowing. This causes progressive slurring, nasal speech, and difficulty swallowing. People experiencing this type of onset may choke and cough during eating. 

In both cases, the disease progresses to other areas of the body. Over time, ALS causes weakness in all limbs, an inability to speak or swallow, and leads to difficult breathing. 

The symptoms of ALS cause an increasing dependence on others. Eventually, those living with ALS will need support in all daily functions. While ALS affects the motor system, a fraction of patients also experience dementia. The progression of ALS can cause daily changes to someone’s ability. 

The disease can have a great impact on family and friends both physically and emotionally. With the progressive nature of ALS, a person’s needs and abilities can shift daily. The uncertainty and changes can be very hard to navigate. Families and caregivers will need support when navigating a loved one living with ALS.

ALS does not currently have a cure, though there are treatments that may extend and improve a person’s quality of life with the disease. Medical treatments can slow progression. Multidisciplinary centers can offer advanced therapies like clinical trials, research, physical therapy and emotional support to help manage different stages. 

Some medications for ALS include:

• Riluzole (Tiglutik )
• Radicava infusion or oral treatment
• Relyvrio (AMX0035) 
• Antisense oligonucleotide (ASO) which blocks cells from making the abnormal SOD1 protein

Death generally occurs following weakness in breathing muscles. There is an average life span 36 months following symptom onset.

The cause of ALS remains unknown and is a very complex disorder. The disease varies greatly in different people. Current research connects the disease to several different genes.