Q: My friend was recently diagnosed with ALS. I know this is also known as Lou Gehrig’s disease; what else can you share about it?
Amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease, is a progressive neuro-degenerative disease. Although it is considered one disease, it has more than one specific cause. About 10 percent of ALS cases are genetic and the remaining 90 percent are from other causes. Age, head injuries, and exposure to lead have all been linked to ALS. Because causes vary, no two ALS patients are the same.
When someone has ALS, the nerve cells – motor neurons – that transmit signals from the brain to the muscles slowly die and limit the brain’s ability to control muscle movement. As ALS progresses, the person may lose their ability to move, speak, eat, or even breathe.
People with early-stage ALS usually begin to seek medical care because they or a family member notice a physical change that cannot be explained. Common examples include a change in the voice or trouble swallowing that is not accompanied by a sore throat, muscle weakness that can’t be explained, or losing weight for no reason. While a stroke may also affect speech, swallowing and arm or leg strength, a stroke will come on suddenly. ALS symptoms progress slowly.
On average, there are three to five ALS diagnosis per 100,000 people each year. Here in northern Idaho, we have been diagnosing one new patient every one to two weeks, which is significantly higher than the national average. On a positive note, the growing neurology program at Kootenai Clinic is allowing us to diagnose ALS more quickly.
Earlier diagnosis allows patients to be connected with helpful resources sooner and can significantly enhance quality of life. While there is still no known cure for ALS, medication, services such as physical, occupational and speech therapy, and support groups can prolong patients’ functionality and quality of life significantly.
I tell my ALS patients, ultimately, you are always in charge of your care. Whether you want an aggressive treatment through clinical trials or are more concerned with comfort care, you have a team of professionals and local support groups who are ready to help. We are in your corner, and you are not alone.
Kootenai Clinic Neurology, Call (208) 625-5100
MattsPlaceFoundation.org, helps ALS patients and families
TeamGleason.org, support for people living with ALS
ALS.org, the national association for ALS