What is ALS, or Lou Gehrig’s Disease?
If you or someone you love has been diagnosed with ALS, you are one of at least 16,000 American families living with this life-changing disease. ALS, amyotrophic lateral sclerosis, is also commonly known as Lou Gehrig’s disease after the famous baseball player who brought awareness to it in 1939. It is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord.
No two people will experience the same disease progression, but in all cases, the gradual loss of motor neurons—and by extension, loss of muscle control—will require more care and assistance with activities of daily living. ALS symptoms may impact one’s ability to speak, swallow, walk, grasp objects, move, or breathe unassisted.
Researchers are just beginning to understand what may cause ALS: genetics plays a role in only 10 percent of cases, so the majority of cases are believed to be related to a combination of environmental and genetic risk factors. The scientific investigations for causes, cures, and treatment for ALS are ongoing.
Caring for People with ALS
With the medical knowledge and technologies available today, people with ALS can receive high-quality, advanced health care at home, including ventilator and tracheostomy management that was once only provided at hospitals and residential facilities. Personalized hospice care, or palliative care—the compassionate, multidisciplinary specialty focused on lessening symptoms and improving comfort and quality of life—also can be delivered in the home setting. This means that people with ALS can continue to receive excellent, one-on-one nursing care, assistive care, and medical social work services in their comfortable home environment for the duration of their illness.
Even for those blessed with a strong family caregivers, finding an ALS support group and a professional home health care team to help is crucial to making the most of their quality of life. Look for a reputable, private duty adult nursing provider who has diagnosis-specific expertise caring for people with ALS, and whose nurses and clinical managers are trained and certified for ventilator and tracheostomy care.
The Value of Home Care For Clients with ALS and Primary Caregivers
One of the most common regrets of home health care clients is letting financial or other worries stop them from getting help sooner. A reputable home health care provider will easily help explore payment options and explain insurance benefits and other community and charitable resources. The cost of in-home adult nursing services may be paid directly by Medicaid, private health insurance, Veteran’s benefits, or Workers’ Compensation insurance. Thanks to commonly available hospice benefits, more than 99 percent of people don’t pay anything out-of-pocket for hospice care services.
At BAYADA Home Health Care, we strive to ensure that clients receive the highest quality care in their homes, while maintaining an individual’s independence and dignity. As your care needs change over time, our Clinical Managers will assist you in identifying new or additional services that you may need. All care professionals undergo a rigorous hiring process and receive ongoing supervision and training by a registered nurse. We understand that coordination and communication is essential to ensure the highest quality of care for you. To fulfill this goal, your care team will work closely with your physicians, family, and community resources, such as The ALS Association.
Download our Living with ALS at Home guide.
You are Not Alone
There is a network of caring people and resources to offer the practical, emotional, and spiritual support you may need. On this most challenging journey, staying open and accepting the support of experts, other people and families facing the same diagnosis, and a professional home health care team can make a big difference in relieving pain and stress for both the individual with ALS and their loved ones.
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