Amyotrophic Lateral Sclerosis (ALS) also called Lou Gehrig’s disease is a non-contagious neurodegenerative disease that affects nerve cells in the brain and the spinal cord. These nerve cells, called motor neurons, control the muscles in the body. ALS impairs and causes death of these motor neurons. When motor neurons die, the brain can no longer control muscle movement. People with ALS experience progressive loss of the ability to move, eat, speak, and breathe. The rate of progression of this disease is variable from person to person. While research is underway and there are a handful of medications to slow progression and assist in treatment of ALS, there is no cure.
Every day about 90 individuals in the United States are diagnosed with ALS. Most people diagnosed with ALS are between the ages of 40 and 70, with an average age of 55. 90% of those with ALS diagnosis have no family history. There is a 10% incidence of a familial connection through a mutated gene. Muscle stiffness or weakness are often the earliest symptoms. Diagnosis is a process of ruling out other causes for the symptoms and often takes a year.
A diagnosis of ALS is accompanied by severe physical, emotional, and financial burdens for the person living with the disease and their families. Our Home, Hope and Healing team has had the pleasure of working with individuals with ALS and their families: providing assistance and supportive nursing care in the home setting.
What we have learned from the special ALS clients we have served:
- Adapting to changes in physical function takes a special type of courage.
- Independence is key, being able to do a little for oneself is something that someone with ALS does not take for granted.
- Communication takes extra effort and time, and can be frustrating, but the person with ALS depends on us to make that effort.
- Goals of care discussions are difficult and are so important. Remember who is in charge.
- Caregivers and family members can learn something new every day from the person with ALS.
- Supporting each other is crucial, as is giving each other space and grace.
- The person with ALS is the hero.
- Take time to smell the flowers…or sort through and share family recipes, or photographs and enjoy something about every day.
Researchers are working to find ways to create new ALS treatments. Today, perhaps due to medications or treatments available, those diagnosed with ALS may live longer than in the past. Researchers are hopeful about some new findings and clinical trials.
May is ALS awareness month. During the month of May you can:
- consider learning more about ALS,
- wear red to raise awareness,
- sign up to walk for ALS, or
- donate to the ALS association to support necessary research. Visit ALS Association, Northern New England Chapter at www.webnne.alsa.org
— Post written by Laurie Bourgoin, BSN, RN, MBA, Chief Nursing Officer