This post features insights from Elissa Held Bradford, PT, PhD, NCS, MSCS, physical therapist for the ALS Certified Center of Excellence at Saint Louis University. As part of a multidisciplinary team, she works with other health care professionals specially trained to address the needs of people living with ALS. She shares advice for people with ALS in light of physical therapy month.
By Elissa Held Bradford, PT, PhD, NCS, MSCS
PT helps you MOVE.
Physical therapy (PT) is a part of the whole person comprehensive team approach to care for an individual and family living with ALS. Physical therapy, along with the full healthcare team here at the comprehensive ALS clinic at Saint Louis University and other centers, help individuals keep their world large, aka, engaged in the activities that matter most to them as a person and as a family. The PT examination and recommendations focus around movement. PTs ask questions related to movement-based activity priorities and challenges like walking and getting in and out of a car or a wheelchair. PTs assess how the individual moves, their strength, balance, flexibility and endurance. Sometimes PTs assess how the family helps the individual move to ensure both individual and family are safe and efficient. PTs work together with the individual, family and team, finding creative ways using exercise, equipment, and activity modifications to get priorities done.1 Adaptability is key to optimizing ability and will go a long way to helping someone be well despite ALS.
Exercise is medicine.
At the right dose, exercise is part of the comprehensive treatment plan for individuals living with ALS. Range of motion and stretching exercises are recommended for all individuals with ALS. Light to moderate intensity, NOT heavy intensity, aerobic and resistance exercise of muscle groups that can move against gravity is recommended for those in the early to mid-stages of ALS.2,3 The goal is to maintain as much strength and endurance as possible for as long as possible, but NOT overdo it and potentially increase weakness. In a disease that typically results in the loss of strength and endurance, maintaining or slowing loss, is a gain. Resistance training remains controversial in ALS. The reader is referred to the references provided at the end of this blog and referenced above, as well as to this nice summary on PT and exercise at Massachusetts General Hospital. Most importantly an individual should consult with their individual PT and physician for individual dosage recommendation.
Additionally, task-specific exercises such as sit to stand and balance exercises such as stepping in place may be recommended to help individuals prevent falls and stay active. Breathing exercises through a device that resists the flow of air may also be recommended to help maintain strength and endurance of respiratory muscles.4 A PT, along with the ALS team, determines the right dose of exercise for each individual.
The bottom line message is be active each day, listen to one’s body, and do some activity but not too much. The rate of perceived exertion scale (RPE) scale, with a goal of 3-5 depending on the individual, is a very valuable tool to help individuals gauge what is enough but not too much physical activity. See this link for an example: https://my.clevelandclinic.org/health/articles/17450-rated-perceived-exertion-rpe-scale
Got Pain? Get Moving.
Movement. Smooth often slow active movement is recommended if the individual is able to move their limb or body on their own. If the individual cannot move on their own or it is too painful to do so, then assistive movement by another person is recommended. Movement is oil to the joints and provides internal warmth to the muscles and tissues.
Prevention. Prevent pain from starting by making daily movement, particularly stretching and appropriate intensity resistance training, a habit. If muscle twitching or spasticity are contributing to pain, stretching and avoiding overwork of the muscle, are important. Muscle twitching is the small incomplete activation of a motor unit, meaning the signal from the brain to the muscle isn’t strong enough. It is usually a sign of overwork or fatigue of the motor neurons, the brain cells that provide the signal to the muscle. Avoiding overuse of the muscle is critical. Spasticity is excessive stiffness or too much motor unit activation, believed to be due to lack of inhibition, or loss of the stop neurons in the brain. Stretching and rhythmic active movements like stationary cycling can be helpful.
Support. Rest the painful joint, muscle or tissue through proper supports. This may be a mobility aid for walking if there is back pain or the proper height of the armrest of a chair or wheelchair if there is shoulder pain. Braces and taping techniques may also be used to help provide the proper support.
Additional PT strategies may include massage, electrical nerve stimulation (TENS), topical heat and ice, ultrasound, or iontophoresis.1 Other team members may recommend medication, acupuncture, meditation or counseling. Pain impacts the whole person and the family. Effective pain management often needs a comprehensive approach to address physical, emotional and psychological aspects of pain. For more information about pain in ALS talk to a PT and the healthcare team. Additionally here are two brief resources on pain and ALS:
Please see the blog posts titled ‘Living with ALS: Keep Your World LARGE!’ and ‘Living with ALS: Staying Active and Staying Safe’ written in collaboration with colleague, Julia Henderson-Kalb, OTD, OTR/L, for more insights and tips on staying active, staying engaged, and being well for individuals and families living with ALS.
Featured Image: Elissa Held Bradford, PT, PhD, NCS with Carmen Berkley at the ALS Certified Center of Excellence at Saint Louis University. Photo by Sarah Howell, of Sarah E Studios.
- Majmudar S, Wu J, Paganoni S. Rehabilitation in amyotrophic lateral sclerosis: why it matters. Muscle Nerve. Jul 2014;50(1):4-13.
- Lui AJ, Byl NN. A systematic review of the effect of moderate intensity exercise on function and disease progression in amyotrophic lateral sclerosis. J Neurol Phys Ther. Jun 2009;33(2):68-87.
- Dal Bello-Haas V, Florence JM. Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev. May 31 2013(5):Cd005229.
- Macpherson CE, Bassile CC. Pulmonary Physical Therapy Techniques to Enhance Survival in Amyotrophic Lateral Sclerosis: A Systematic Review. J Neurol Phys Ther. Jul 2016;40(3):165-175.