What is ALS? Amyotrophic lateral sclerosis, or Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. According to the ALS Association, there are 15 people diagnosed with ALS in the United States daily, or 5,000 per year. People can live from three to ten years after diagnosis of ALS.
When a diagnosis of ALS happens, it can bring out the best and the worst in families coping with the devastating implications of the disease. While there is no known cure for ALS, there are drug treatments for the disease that can prolong life and help manage symptoms to maintain quality of life. Acceptance, support, communication, and positivity are vital from all parties involved to navigate the difficult decisions about ventilation and breathing devices, and the drastic lifestyle changes from what once were energetic lives. It is important to remember that despite drastic physical changes that occur, people living with ALS still have full mental functioning and are able to meaningfully contribute intellectually with colleagues, friends and family.
Family members can steer such contributions and can play a huge role in quality of life through their emotional support. John Bock, MD, says, “Quality of life can be a moving target, and happiness is reality divided by expectations.” Dr. Bock, a neurologist at the Conroe Regional Medical Center, took surveys from his patients on ventilation and found that they often had a general satisfaction with their quality of life, just as a healthy person walking around may have.
If you know someone, or are have ALS, you are not alone. Finding a support group in your area, or reading other’s stories allow you to advocate and learn from people experiencing the devastating illness.