Living a quality life with ALS

Amyotrophic lateral sclerosis, more commonly referred to as ALS or Lou Gehrig’s disease is a progressive neurodegenerative disease that affects nerve cells in the brain and in the spinal cord. Some early signs to look for are muscle weakness and struggles with speech, swallowing, or breathing. ALS is one of the most common neuromuscular disorders worldwide. People of all backgrounds are affected. It affects approximately 30,000 Americans. While males between 40 and 60 years old are the most common demographic to get ALS, women and younger people are susceptible. With that said, it is never too early to start learning about ALS.

While a cause is still unknown, there has been a wealth of new understanding of the physiology of the disease in recent years. Hopefully, with more medical advances, there will be a cure or a treatment someday. For now, though, there is one FDA approved drug called Riluzole that helps to slow down the progression of this disease. There are also several other drugs in clinical trials that may help. Also, there are devices and therapies that help to manage the symptoms. Physical therapy, occupational therapy, and speech therapy have proven to be an effective tool in managing ALS. The therapists can set goals and promote benefits for individuals living with ALS. Nutritionists can help as well.

Social workers, home care nurses, and hospice nurses are a great resource for individuals with ALS and for their families. They can assist with providing mental and emotional support, obtaining financial aid, arranging a power of attorney, prepare a living will, and find support groups for patients and caregivers. The home nurses not only provide medical care, but can teach the caregivers how to maintain respirators, give feedings, and move patients around in a way to avoid painful skin problems and contractures. Hospice nurses work directly with the doctor to ensure proper medication and pain management and can provide counseling.

Additionally, the ALS association can prove to be a great resource for those people suffering with this disease. What I find to be truly inspiring is the program through the association called Stories of Courage. It allows people battling with this disease to tell their story and how they still strive to maintain a good quality of life and make their mark on the world.