Supporting a Loved One After an ALS Diagnosis

Learn about risk factors, symptoms and home care options for ALS.

A number of years ago, the ice bucket challenge brought a great deal of focus and significant donations to the fight against ALS — Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease. A progressive, neuromuscular disease that attacks nerve cells and pathways in the brain and spinal cord, more than 20,000 Americans are living with ALS and up to 6,000 people in the United States are diagnosed each year.

To learn more about the risk factors, symptoms, treatment options and ways that the home care team at Visiting Care Giving Services can help, we have compiled this helpful information for families who are facing a recent ALS diagnosis in a loved one.

Risk Factors for ALS

• Gender. Men are more likely to be diagnosed with ALS than women.
• Age. Symptoms of ALS typically appear in individuals between the ages of 40 -70 years old.
• Ethnicity and Race. Non-Hispanics and Caucasians are more likely to develop ALS.

While a vast majority of ALS cases occur for no known reason, research suggests that military veterans are between 1.5 to 2 times more likely to develop ALS than the general population. Approximately 5 – 10% of cases diagnosed are familial, where an individual has inherited the disease from his or her parent(s). Environmental factors may also be at play, and researchers continue to study the impact of exposure to toxins, physical trauma and even diet.

ALS Symptoms

Frequently overlooked or even misdiagnosed, ALS symptoms appear very gradually and may not be noticed at early onset. Those diagnosed with ALS may feel clumsy and struggle with fine-motor skills such as writing or buttoning a shirt. Other early symptoms may include:

• Difficulty chewing or swallowing
• General fatigue
• Muscle stiffness, jerking of the arms and legs, or twitching
• Uncontrollable laughter or crying
• Slurred speech
• Muscle weakness affecting arms or legs

When ALS symptoms are first noticed in speech or swallowing, physicians refer to this as bulbar onset ALS. When symptoms are first noticed in the arms or legs, it is referred to as limb onset ALS.

Treatment Options & Supportive Care for ALS

While there is no cure for ALS, there are several treatment and supportive care options available that can help manage and relieve symptoms, and make living with the disease easier. A few of these include:

• Physical and Occupational Therapy. Helping a loved one with ALS continue to maintain mobility is possible with exercises specially designed to encourage flexibility without overtaxing muscles. This may include swimming, walking or range of motion exercises.
• Medications. Riluzole and edaravone are both approved by the Food and Drug Administration as treatments for ALS. In addition, medications can be prescribed to help manage symptoms such as muscle cramps and stiffness, pain, depression and sleep disturbances.
• Nutrition. Maintaining a proper weight is an important part of living with ALS. As the disease progresses, it can become difficult for the individual to swallow, and ingesting adequate fluids, calories and nutrients, is critical. A registered dietician can help design a plan to help meet nutritional needs.
• Home Care. The experts at Visiting Care Giving Services can help families navigate an ALS diagnosis. With a team of compassionate professionals, we are available to assist with respite care so that family members can have a break from care. Additionally, we can help with personal care needs such as bathing and using the bathroom, provide support and encouragement for exercises, provide transportation to medical appointments, help plan and prepare nutritious meals as outlined by a dietitian, and so much more.

An ALS diagnosis brings many questions about what to expect during the course of the disease, as well as concerns about how to provide the care needed to help a loved one remain in the comfort and familiarity of home. Visiting Care Giving Services, a top-rated Chesterfield senior advocate, is here to provide the support families need to navigate an ALS diagnosis with a team of highly-skilled, professional caregivers. Reach out to us today at (636) 493-9058 to learn more about the home care Chesterfield families trust and to schedule a complimentary in-home consultation. See our Service Area page for a full listing of the communities we serve.