Living Well With ALS Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive muscle-wasting condition for which no cure currently exists. While genetic, environmental, and lifestyle factors are thought to contribute to ALS, the exact cause of the disease remains largely unknown. Mutations in several genes, including SOD1, TARDBP, and FUS, have been connected to familial ALS and contribute to the development of sporadic ALS. A mutation in the gene C9orf72 has been shown to cause about 25–40% of all familial cases. Factors such as a history of military service or trauma, smoking, exposure to toxins such as heavy metals or pesticides, and viral infections also have been linked to ALS. The disease is more common in men than in women and in individuals between the ages of 40 and 70. Living with ALS can affect many aspects of daily life, including health, wellness, relationships, and careers. A diagnosis of ALS means that people may have to adapt to a new lifestyle. |
|---|
 Did You Know? A 2019 study determined that disease progression in ALS patients is one of the strongest influences on health-related quality of life. Researchers found that slower disease progression is associated with higher levels of emotional well-being. In addition to progression rate, pain and hopelessness are factors that affect health-related quality of life in ALS patients, with depression and physical ability having the strongest influence. |
|---|
“I spent most of my life following daily habits and routines that shaped my perspective about how life ought to be. When ALS appeared, it brought change and created imaginary roadblocks in my mind. I didn’t want things to change, to learn new habits, or to adapt to my new way of living.”I discovered that the only way to regain control was to change my perspective.”— Dagmar Munn, columnist, “Living Well With ALS” |
|---|
Factors That Affect Overall Wellness
Exercise
Exercise may provide many benefits for ALS patients, including reducing depression and improving strength and stamina. The goal is to work unaffected muscles to increase their functionality to alleviate the burden on affected muscles. However, patients must exercise carefully for it to be beneficial.
Type of Exercise
Regular and moderate exercise is better than excessive exercise. It is crucial for patients to avoid overworking their muscles because overstressed muscles may actually speed up muscle loss.
Patients should work with a physical therapist to determine how best to exercise safely, as well as to ensure that they include stretching, strength-building, and range-of-motion exercises in their routine.
Physiotherapy and Occupational Therapy
Physiotherapy, also called physical therapy, is a therapeutic strategy that focuses on movement. For ALS patients, it can be used to restore, maintain, and maximize physical strength, function, motion, and well-being. Physical therapists recommend exercises to maintain flexibility while preventing and reducing pain. They also may provide instruction regarding the use of assistive aids or adaptive devices to maximize patient mobility.
In addition, physical therapists can teach patients’ caregivers the best ways to help them with daily tasks and movements. If patients are assigned in-home exercises, caregivers will need to know how to assist them.
Occupational therapists may work in tandem with physiotherapists to help ALS patients. These professionals are able to help identify areas where patients may need assistance in their daily lives and then work with patients and their families to develop modifications that promote better mobility.
Did You Know? Exercise has been shown to be beneficial for patients with ALS, but the type and intensity of the exercise matters. A 2021 study published in the journal Neurology found that moderate physical activity was associated with the best survival; however, inactivity and regular, vigorous activity were linked to shorter survival times. |
|---|
“The goal of your exercise program should be focused on maintaining the strength of your unaffected muscles. During my early years with ALS, I enjoyed lap swimming. Over time, that transitioned into water walking. I now use a small rebounder with a handy safety hoop that helps me keep balanced. Rather than attempt one long, tiring workout filled with exercise movements, as I could do in my younger days, I now break up sessions into several 15-minute routines scattered throughout the day.”— Dagmar Munn |
|---|
 Diet and Nutrition Many ALS patients struggle to maintain a full and healthy diet, which can lead to malnutrition and excessive weight loss and further fatigue and weakness. Nutritional therapy, with the help of proper diet and nutritional supplements, may help prevent or alleviate malnutrition and slow the progression of ALS. Patients should discuss their nutritional status and dietary requirements with their physician and/or a registered dietitian before making any changes to their diet to ensure their individual needs are properly met. The Ketogenic Diet In some cases, a diet high in fat and low in carbohydrates, such as the ketogenic diet, may be helpful for ALS patients. The ketogenic diet focuses on using a different type of fuel source called ketone bodies that are produced by the liver using fats. When the body is deprived of energy, ketone bodies are utilized as energy stores. Because ALS patients may also experience energy deprivation because of malnutrition, a ketogenic diet may be helpful. The Paleolithic Diet The paleolithic diet also may have benefits for ALS patients. This diet consists of fresh vegetables, fruits, nuts, seeds, wild-game or grass-fed lean meat, fruit and plant-based oils such as olive oil or walnut oil, and fish such as salmon, tuna, or mackerel. It does not include food that would not have been available before farming, such as grains, dairy, legumes, and processed meat. Refined sugar, potatoes, salt, and other processed foods are also not included in the diet. Other Tips Nutritionist Alana Kessler generally recommends a high-calorie diet for ALS patients. She also suggests that the following guidelines may help ALS patients plan a diet strategy in accordance with their physician or registered dietitian: |
|---|
Fiber
Increasing dietary fiber lowers inflammation and promotes gut health. Key gut hormones include ghrelin, which stimulates the appetite when the gut is functioning properly.
Vitamin B12
This is a water-soluble vitamin that plays an essential role in the homeostasis of the nervous system. Clinical studies have shown that administering a high dose of B12 into the muscle within 12 months of symptom onset lessens decline and prolongs survival.
Carnitine
This is an essential antioxidant that protects against oxidative stress and damage. Carnitine can be found in red meat sources as well as chicken, milk, beans, avocado, milk, and fish.
Enteral Nutrition
Hypercaloric feeding through a gastrostomy (PEG) when placed early on in patients with dysphagia (difficulty swallowing) has been found to increase survival rate.
Did You Know? According to results published in 2019 from a clinical trial, a diet monitoring app may aid ALS patients in managing their calorie intake to maintain or even improve their weight. Results further indicated that greater weight gain was associated with slower rates of disease progression. Researchers emphasized the importance of monitoring-health applications being widely available for use by ALS patients as a tool to help maintain their body weight. |
|---|
“I avoid getting pulled into giving medical advice and always urge people to seek out a medical professional. I also recommend folks create a trusted circle of care, which would include people they know rather than people they met via social media.Another recommendation is to start adding healthy habits into daily life, including good sleep, quality nutrition, gentle exercise, and relaxing the mind and body. These will immediately help to regain control over needless worry, and later, they’ll help if a diagnosis is received. I give credit to these healthy habits for helping me to successfully live with ALS for the past 11 years.”— Dagmar Munn |
|---|
 Fatigue ALS-related fatigue is most often caused by the death of nerve cells. The inability of ALS patients to sleep restfully as a result of weakness in the muscles involved in breathing also contributes to fatigue. While fatigue can severely affect quality of life, there are strategies that can help to ease this symptom. Some individuals find benefit in dietary supplements such as creatine to increase or preserve muscular strength. Others take advantage of exercise therapies such as supported treadmill walking. Occupational Therapy An occupational therapist can work with patients on energy conservation techniques, which become more critical as fatigue increases with disease progression. Energy conservation techniques can help optimize daily tasks in a way that they require less energy. Occupational therapists focus on doing the routines that are necessary and saving energy for more meaningful activities. Energy conservation techniques also identify actions that are not as crucial or those that caregivers can do instead. Devices also are available that can make eating, dressing, grooming, walking, and bathing easier, thus helping to ease fatigue. Occupational therapists can make equipment suggestions and help patients and their families decide which type of equipment is most appropriate. Wheelchairs are recommended when patients experience excessive fatigue. Tips for Easing Fatigue Coping strategies such as the following, in combination with the above options, also can help to reduce fatigue in ALS patients:
|
|---|
Did You Know? Research conducted by Beijing researchers found that ALS patients are four times more likely to develop excessive daytime sleepiness (EDS) than those without the disease. The 2018 study also found that ALS patients with EDS also showed significantly worse cognitive abilities — particularly in memory — and behavioral changes than those without EDS, suggesting EDS may promote progression of these symptoms. |
|---|
“Many people with ALS get noninvasive ventilators, and they report that they sleep better and have more energy during the day.”— Kristin Neva, columnist, “Joyful Sorrow” |
|---|
Mental Health and Emotional Well-being
An ALS diagnosis can generate a range of emotions in patients and their family members because they all must adjust to a new way of life. Maintaining a good support network can help patients and others manage the vast changes. Help is available on how to have difficult conversations with family, friends, and colleagues about ALS. These talks can help patients and others adjust to the new reality.
Depression and Anxiety
People with ALS may experience depression and anxiety, especially following an initial diagnosis. Scientists don’t yet know if this is related to the progression of the disease or due to its emotional impact. Patients might withdraw from social situations and feel isolated because of symptoms of the disease. Because it can be difficult for patients to recognize signs of depression, it’s important for friends, family, and caregivers to be ready to help when needed.
Support Groups
Support groups can help ALS patients and their loved ones come to terms with their disease, find commonalities with others, and learn positive coping strategies, Columnist Rick Jobus was skeptical when he attended his first support group but soon found how beneficial they could be when he became an active participant.
He writes, “When we walk through the doors of a support group meeting, we are admitting a horrific commonality. But however unintentionally, we’re also self-identifying as a survivor. Regardless of where we stand in the ALS journey, we are still here. That doesn’t happen without a plethora of harrowing moments and accompanying situational countermeasures. Many are novel. Some are brilliant. All are inspirationally life-sustaining.
In any case, the key is involvement with the proper mindset. To adapt President John F. Kennedy’s 1961 inaugural address, ask not what your support group can do for you — ask what you can do for your support group.”
Did You Know? A German study has shown that verbal fluency and space orientation are among the factors associated with ALS patients’ emotional well-being. The study also noted that cognitive deficits seem not to have an impact on overall health-related quality of life. Additional research is necessary to determine if high emotional well-being has a positive effect on cognitive function overall. |
|---|
“Many factors influence the quality and length of life for people with ALS. But there is only one factor that we can affect directly — our psychological and emotional well-being.Well-being is a state of mind. It’s how satisfied we are with our lives, no matter what our physical condition might be.”— Dagmar Munn |
|---|
 Mindfulness and Meditation The practice, the goal of which is to allow individuals to acknowledge their feelings in an honest but nonjudgmental way, involves strategies to relax the body and mind such as breathing methods and guided imagery. A simple mindfulness exercise involves sitting in a quiet, comfortable place and focusing on one’s breathing. Doing this for even a minute or two may help to clear the mind of negative thoughts and allow individuals to refocus their energy. Dagmar Munn, a longtime mindfulness advocate, emphasizes the role that meditation has had in her life and in allowing her to pay attention to it instead of letting it pass her by. For her, it has meant the difference between living in “survival mode” and “shortening the distance between our daily reality and the life we had hoped to lead,” poignant advice she once received from a friend. |
|---|
Did You Know? Research published in the European Journal of Neurology shows that mindfulness-based meditation programs improve quality of life and psychological well-being in ALS patients. Individuals who participated in an eight-week mindfulness-based meditation program scored higher on evaluation questionnaires related to quality of life and mental well-being than those who did not take part in the meditation program. Additionally, these patients indicated feeling less anxious and depressed. |
|---|
“I’m so glad I decided to learn to live in the now and be mentally present for every moment. Practicing mindfulness became a valuable coping strategy that helped me push back my mental walls of ALS and continue to engage in life.”— Dagmar Munn |
|---|