Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It causes loss of muscle control, eventually leading to paralysis and death. There is currently no cure for ALS. However, engaging in physical activity and exercise may help slow disease progression and maintain quality of life for ALS patients.
What is ALS?
ALS is caused by the death of motor neurons, which are nerve cells that control voluntary muscle movement. As motor neurons die, the brain loses its ability to initiate and control muscle movement. This leads to progressive muscle weakening and paralysis. The first symptoms of ALS often include tripping, dropping things, abnormal fatigue, slurred speech, muscle cramps and twitches. The disease eventually leads to complete paralysis, including loss of breathing and swallowing abilities.
ALS typically strikes people between the ages of 40 and 70, with an average age of 55 at diagnosis. Men are slightly more likely to develop ALS than women. The incidence of ALS is 2 per 100,000 people, and it is estimated that more than 16,000 Americans may have the disease at any given time.
Most cases of ALS occur sporadically, meaning there is no family history of the disease. About 5-10% of cases are familial ALS, caused by inherited genetic mutations. There is no definitive diagnostic test for ALS. Doctors make a diagnosis based on a person’s symptoms, MRI and electromyography results.
There is currently no cure for ALS. Riluzole is the only FDA-approved drug treatment, which may extend lifespan by a few months. Most treatments aim to relieve symptoms and improve quality of life. This includes physical therapy, occupational therapy, respiratory support, nutritional support, speech devices, and mobility equipment. The average survival time after diagnosis is 3-5 years. About 10% of patients survive for 10 years or more. Well-known figures with ALS include Lou Gehrig, Stephen Hawking and David Niven.
How Might Exercise Help with ALS?
While exercise cannot cure or reverse ALS, regular physical activity may help slow disease progression and minimize secondary complications. Here are some potential benefits of exercise for ALS patients:
Maintains Muscle Strength and Function
Exercise stimulates muscle contraction and movement, which maintains muscle strength. This helps counteract the progressive muscle weakening caused by ALS. Weight training and resistance exercises are particularly beneficial for building muscle mass. Maintaining muscle strength can prolong physical function and independence.
Increases Energy Levels
ALS saps energy levels and causes chronic fatigue. Regular exercise has been shown to increase energy, reduce fatigue, and improve sleep quality in ALS patients. This enhances overall wellbeing and quality of life.
Boosts Mood
The psychological impact of an ALS diagnosis can be devastating. Exercise helps by releasing endorphins, brain chemicals that elevate mood and relieve stress. This can reduce depression and anxiety in ALS patients.
Maintains Bone Strength
The lack of movement caused by ALS can lead to weakening and loss of bone density. Weight-bearing exercises help stimulate bone growth and density, reducing the risk of fractures.
Enhances Breathing and Circulation
As ALS paralyzes the muscles involved in breathing and circulation, exercise helps strengthen the cardiovascular and respiratory systems. This improves oxygen circulation and helps patients breathe and function better.
Prevents Joint Stiffness
Regular movement helps lubricate joints and prevent painful joint stiffness as mobility declines. Range-of-motion exercises are particularly helpful for maintaining joint flexibility in ALS patients.
Stimulates Neuroplasticity
Neuroplasticity refers to the brain’s ability to form new connections and pathways. Though not fully proven, some research suggests exercise may stimulate neuroplastic changes in ALS patients. This could potentially help the brain and nervous system compensate for the damage caused by the disease.
Slows Disease Progression
Some emerging research indicates physical activity may help slow the progression of ALS. In animal studies, exercise prolonged survival time and delayed the onset of paralysis. More studies are needed to confirm if exercise directly impacts disease progression in humans.
Challenges of Exercising with ALS
While exercise provides many potential benefits, ALS patients face unique challenges when trying to stay physically active. Difficulties may include:
– Progressive muscle weakness makes movement increasingly difficult.
– Exercise intolerance and excessive fatigue.
– Impaired balance and risk of falls.
– Shortness of breath and impaired respiratory function.
– Swallowing problems that risk food/liquid aspiration.
– Joint stiffness and restricted range of motion.
– Inability to perspire leading to overheating.
– Anxiety about overexertion worsening weakness.
ALS patients must listen carefully to their body’s limits and not overexert themselves. A physical therapist or trainer experienced with ALS can provide guidance on appropriate exercises and precautions tailored to each patient’s current abilities.
Recommended Exercises for ALS Patients
Certain types of exercise are better suited for the physical limitations imposed by ALS. In general, non-weight bearing activities and exercises that can be modified for declining function are recommended.
Range-of-Motion Exercises
Gentle stretching helps maintain flexibility and full range of motion in the joints. This prevents stiffening as mobility decreases. Recommended range-of-motion exercises include:
– Shoulder circles
– Ankle rolls
– Knee extensions
– Hip flexor stretches
– Rotating the wrists and ankles
– Neck tilts
These exercises can be done daily, taking care not to over-stretch. Yoga and tai chi can also improve flexibility.
Aerobic Exercises
Low-impact aerobic activity helps maintain cardiovascular fitness and breathing function. Recommended options include:
– Stationary cycling – Use an upright or recumbent bike to avoid balance problems. Cycling only works the legs but is gentle for those with upper body weakness.
– Arm cycling – For patients who retain arm mobility but have leg paralysis, arm cycling machines can provide aerobic activity.
– Swimming – Buoyancy reduces stress on muscles and joints. Swimming works all muscle groups.
– Walking – Initially focus on short 10-15 minute walks and gradually increase distance as able. Walking is weight-bearing to maintain bone strength. Eventually switch to wheelchair walks as leg weakness progresses.
Resistance Training
Light resistance training helps retain muscle mass. This can be done through:
– Weights – Start with 1-3 lb weights for arms and legs and do higher repetition sets. Gradually increase weight as able. Avoid excessive fatigue.
– Resistance bands – Bands allow for easier modification as strength decreases. They provide resistance during full range of motion movements.
– Body weight exercises – Push-ups, chair squats, and other exercises using one’s own weight for resistance. Modify by adjusting body positioning as needed.
Focus on major muscle groups like arms, shoulders, back, chest, hips and thighs. Always allow for adequate rest between sets.
Inspiratory Muscle Training
Specific breathing exercises can strengthen respiratory muscles involved in inhalation and exhalation. Pursed lip breathing, diaphragmatic breathing exercises and breath stacking can help ALS patients maximize their lung capacity and respiratory function. This helps maintain oxygen intake.
Benefits of Water Therapy
Aquatic exercises and water therapy offer unique benefits for ALS patients, including:
– Buoyancy reduces stress on joints, making movement easier.
– Water resistance provides light strength training.
– Warm water soothes muscle aches and stiffness.
– Activities like swimming, water walking, water aerobics are less exhausting.
– Water supports the body, reducing fall risk.
– Helps ease breathing through hydrostatic pressure on the chest.
If possible, ALS patients may benefit from supervised water therapy classes 1-3 times a week. At home water exercises in a pool or hot tub are also helpful.
Lifestyle Modifications for Exercise
As ALS progresses, patients will need to adapt their exercise routines. Working closely with a physical therapist can help determine appropriate modifications over time. Recommendations include:
– Reduce weight and resistance levels
– Shorten duration of exercise sessions
– Change weight-bearing to non-weight bearing activities
– Transition from standing to seated exercises
– Use adaptive devices like grab bars, slider boards, pole walking
– Try alternative exercises to work specific muscles
– Take frequent rests to avoid overexertion
The key is to remain as active as possible within safe limits. Stop any exercise that causes pain, prolonged fatigue or shortness of breath. Staying motivated by exercising with a partner or trainer can help overcome barriers. Celebrate small successes, and modify activities before they become overly difficult.
Risks and Precautions for Exercising with ALS
While exercise provides many benefits, ALS patients should take precautions to exercise safely:
– Stay hydrated and avoid overheating, which is harder due to poor perspiration.
– Monitor breathing rate and use supplemental oxygen if needed.
– Consider physical therapy to learn safe techniques to avoid injury.
– Avoid exercising to the point of excessive fatigue, which can exacerbate weakness.
– Build up stamina gradually and start with shorter, easier workouts.
– Use adaptive devices like stabilized walkers, recumbent bikes, swivel cushions.
– Exercise in a safe environment to prevent falls and injuries.
– Keep emergency medications on hand.
– Listen to your body and immediately stop any activity causing pain, dizziness or breathing problems.
ALS patients with severe fatigue, respiratory impairment or advanced muscle weakness should first consult their doctor about appropriate exercise regimens. While moderate physical activity provides benefits, patients should not push themselves in ways that exacerbate weakness and fatigue.
Multidisciplinary Care for Exercising with ALS
Creating an exercise regimen for ALS patients requires input from a multidisciplinary care team including:
– Neurologists – Assess disease progression and make exercise recommendations. Monitor for negative impacts.
– Physical therapists – Evaluate current abilities and recommend appropriate activities. Demonstratesafe techniques and prescribe adaptive devices.
– Occupational therapists – Teach energy conservation tips and adjusting routines to avoid overexertion.
– Speech therapists – Provide swallowing exercises and diet tips to prevent aspiration when exercising.
– Respiratory therapists – Recommend breathing techniques and exercises. Monitor respiratory function.
– Psychologists – Help cope with emotional barriers and keep motivated.
– Palliative care – Manage pain, cramps, and discomfort during exercise.
– Nutritionists – Advise on hydration, protein intake, and supplements to fuel exercise.
Multidisciplinary collaboration maximizes the benefits of exercise while ensuring patient safety. Ongoing re-evaluation and program modification will be necessary as ALS progresses.
Clinical Trials on Exercise and ALS
Ongoing clinical studies are examining how exercise impacts ALS progression, including:
Moderate Aerobic and Strengthening Exercise in ALS
This Phase II trial by Johns Hopkins University is studying the safety and effects of a combined resistance training and aerobic exercise program in early stage ALS patients over 12 months. Results may guide exercise protocols to optimize benefits.
Weight-bearing Exercise in ALS Trial (WHEAL)
This Phase II study by the University of Massachusetts is investigating whether a moderate-intensity weight-bearing exercise program can slow ALS disease progression compared to non-weight-bearing routine care over 18 months.
Endurance Training in ALS
A Phase II German study is comparing a 12 week endurance training program of either cycling or arm ergometry to non-exercise controls in ALS patients. It will assess impact on muscle, lung and brain function.
aquaresp ALS Clinical Trial
This Phase II study is examining the benefits of assisted hypoxic hypothermic aquatic respiratory training for ALS patients. The water-based training aims to strengthen respiratory muscles and clear mucus.
These studies may provide stronger evidence on optimal physical activity programs to help slow disease progression and maintain quality of life. Results will shape future exercise guidelines for ALS patients.
Expert Recommendations on Exercise for ALS
Leading ALS medical organizations and experts offer these recommendations about physical activity:
– American Academy of Neurology – Engaging in regular moderate exercise can be beneficial for ALS patients without overworking weakened muscles.
– American Physical Therapy Association – Most ALS patients can safely participate in mild-to-moderate intensity exercise under proper supervision.
– National Institute of Neurological Disorders and Stroke – Many different types of physical therapy exercises can help ALS patients retain muscle strength and function.
– Dr. Richard Bedlack, Duke ALS Clinic Director – Light aerobic activity, range-of-motion exercises and assisted breathing techniques can maintain quality of life without overtaxing weakened muscles.
– Dr. Anthony Geraci, Rehab Director at Washington University ALS Center – “Staying as active as possible within a patient’s limits of tolerance maximizes physical capability and well-being.”
Overall, most experts agree regular physical activity tailored to a patient’s current abilities can be beneficial in ALS without causing harm. However, patients should avoid overexertion that worsens weakness.
Conclusion
While exercise cannot alter the course of ALS, regular physical activity may help slow functional decline and optimize quality of life. Maintaining muscle strength, flexibility, respiratory function and cardiovascular health can prolong independence. Appropriate exercises matched to each patient’s current capabilities appear safe and beneficial without accelerating disease progression. Water therapy, stretching, low-impact aerobics and lightweight resistance training are well tolerated by most ALS patients.
However, certain precautions are necessary to exercise safely based on individual limitations. Pushing too hard can worsen weakness and fatigue. ALS patients must work closely with their multidisciplinary care team to develop optimal exercise regimens tailored to their evolving abilities. Ongoing trials may provide clearer guidelines on how physical activity impacts the progression of ALS. For now, most experts recommend controlled physical exercise within a patient’s limitations to retain function, manage symptoms and improve overall wellbeing. While not curative, staying as active as possible can help ALS patients live better with the disease.