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. Dr. John Bock says, “Quality of life can be a moving target, and happiness is reality divided by expectations.” Dr. Bock 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 A.L.S, you are not alone. The lifetime chance of getting ALS, or what is commonly known as Lou Gehrig's disease, is around 1 in 1,000, or about the same as getting multiple sclerosis. Finding a support group in your area, or reading other’s stories allow you to advocate and learn from people experiencing the devastating illness.
Learn about how one family caregiver coped in our Article about Living with Lou Gehrig’s Disease.The ALS Association Support Group Finder ALSForums.com.