Amyotrophic Lateral Sclerosis (ALS) and Exercise

Jul 19, 2011
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Introduction to ALS

Amyotrophic Lateral Sclerosis (pronounced: a-mi-oh-TROH-fik LAT-ur-ul skluh-ROH-sis) or ALS is a serious, degenerative nervous system disease that causes weakness, muscle atrophy, spasticity, and trouble breathing.  Early symptoms include muscle twitching, weakness in limbs, slurred speech and awkwardness. Most of the people who are affected by ALS first notice that they have started to trip or stumble, particularly if they have a “dropped foot” that no longer lifts when walking. Others notice that they have begun to have difficulty in buttoning a shirt or using a key to open a lock.  A small percentage of people have an onset in which difficulty in speaking clearly or swallowing are the first noticeable symptoms. Regardless of where the first symptoms initiate, the disease gradually spreads throughout the body.The Centers on Disease Control reports suggest that between 20,000 and 30,000 people in the United States have a diagnosis of ALS. The incidence of newly diagnosed cases is about 5,000 per year. ALS seems to occur slightly more often in men, most new cases are diagnosed between the ages of 55 and 75, and people most often live with this fatal disease 3 to 5 years.  New treatments are being aggressively sought to extend the lifespan, as well as to develop a more clear understanding of the causes of ALS so that new cases can be prevented. Causes such as heredity, environmental exposure to solvents, radiation, agricultural chemicals, lead, and mercury, or repeated injury have all been explored. It is currently believed that the causes are complex and that there must be both inherited and environmental co-contributors to lead to the development of ALS.

One medication for use in ALS has been approved by the FDA at this time. The drug, Rilutek (Generic name of “Riluzole”) appears to help slow the progression of ALS by reducing the elevated levels of a neurotransmitter, glutamate, in the brain.

Importance of Exercise in ALS

While no way to reverse the course of ALS has yet been found, treatments are focused on increasing the level of functioning the person can maintain, and preserving independence in the person’s lifestyle. A fitness program may play a key role in this effort.

A physical therapist or Certified Inclusive Fitness Trainer (www.acsm.org) can recommend low-impact exercises to help a person with ALS maintain their cardiovascular fitness, muscle strength and range of motion. Regular exercise has also been found to relate to a general sense of well-being and independence. Exercise has certainly been proven beneficial in helping people sleep better, feel more energized and maintain a positive outlook.

Designing a Fitness Program with someone who has ALS

Gentle, low-impact exercise (like walking, swimming, and stationary bicycling) can help to strengthen the unaffected muscles, improve cardiovascular health, and fight fatigue and depression. Since muscles that are underused can become spastic and shortened, a set of ‘range of motion’ and stretching exercises are also believed to be beneficial.

The four exercise program stages are: 1) planning, 2) implementation, 3) documentation of impact, followed by 4) program modifications based upon feedback. After a physical exam and receiving permission to exercise from the physician, the personal fitness plan and exercise goals can be set.

Since most people with ALS find it difficult to eat enough nutrients by mouth, arranging for supplemental energy intake and insuring that the person is well nourished enough for exercise is the key starting point. Aerobic conditioning should be performed three days per week, on alternating days. Muscular strength and endurance work can be performed on the same day, as long as the person does not become too fatigued. Range of motion, stretching, balance and gait exercises can be performed on the other days of the week, to alternate with the aerobic schedule. In this way physical activity remains a key component of the person’s lifestyle on a daily basis.

Walking is well suited for people with ALS, in the beginning stages of the disease. Progression of the walking program should be gradual, and initially should last for only 15 minutes, three times per week. The amount of exercise can be increased over time, as long as the person continues to enjoy the walk and is not too fatigued.

With strength training it is critical to be conservative. One set of 12 repetitions is sufficient for a strengthening program. A 30-minute full body stretch with both active and passive resistance should be included.

Respiratory distress is an inevitable complication of ALS, so deep breathing exercises should be performed on the same days as flexibility training.

Documentation of all components of the person’s exercise program and outcome is very important when a professional is working with a person with ALS. Documentation should include the following key data points: 1) date, 2) time, 3) exercise performed, 4) duration and intensity of exercise, 5) foods consumed, 6)  medications (what, when, how much), 7) resting heart rate,8)  blood pressure, 9) previous exercise that day, 10) changes to the program or changes that the person exhibits, and 11) how well the exercise session was tolerated.

Careful documentation of these key data will assure that the exercise program is beneficial to the person, rather than otherwise. Changes to the program will need to occur often, perhaps even weekly or daily, as the health of the person changes. Fitness staff must stay alert to the need for these changes.

Each individual will want to set personal goals, but from the perspective of the Physical Therapist or Personal Trainer, the desire to maintain function, and prolong ability as long as possible, are probably the most important goals. The exercise program has a value beyond the physical. Through exercise, goal-setting and working toward goals, the person with ALS achieves a sense of control over what is happening to their body, enabling them to better cope with the circumstances in which they have found themselves.

References

Centers on Disease Control (2010) Amyotrophic Lateral Sclerosis (ALS) Retrieved on May 11, 2011 from www.cdc.gov

Mayo Clinic (2010) Amyotrophic Lateral Sclerosis (ALS) Retrieved on May 11, 2011 from www.mayoclinic.com

Kerman, A., Liu, H., Croul, B., Rogaeva, E., Zinman, L., Robertson, J. Chakrabartty, A. (2010) Amyotrophic lateral sclerosis is a non-amyloid disease in which extensive misfolding of SOD1 is unique to the familial form. Acta Neuropathol. 119 (3). 335-344.

Kwong, L., Uryu, K., Trojanowski, J., Lee, V. (2008) TDP-43 proteinopathies: neurodegenerative protein misfolding diseases with out amyloidosis. Neurosignals 16 (1) 41-51

Gavett BE, Stern RA, McKee AC. Chronic traumatic encephalopathy: a potential late effect of sport-related concussive and subconcussive head trauma. Clin Sports Med. 2011 Jan;30(1):179-88, xi.

McKee A, Gavett B, Stern R, Nowinski C, Cantu R, Kowall,N,Perl D, Hedley-Whyte E, Price B, Sullivan C, Morin,P Lee H-S, Kubilus C, Danshevar D, Wulff M, Budson A. TDP-43 Proteinopathy and Motor Neuron Disease in Chronic Traumatic Encephalopathy, J Neuropathol Exp Neurol, 2010, 69: 918-929

McKee AC, Cantu RC, Nowinski CJ, Hedley-Whyte ET, Gavett BE, Budson AE, Santini VE, Lee H-Y, Kubilus CA, Stern RA. Chronic Traumatic Encephalopathy in Athletes: Progressive Tauopathy following Repetitive Head Injury.  J Neuropath Exp Neurol, 2009 68(7): 709-735.

Websites

ALS Foundation: http://www.alsa.org/

ALS Hope Foundation: www.alshopefoundation.org

Centers on Disease Control: https://wwwn.cdc.gov/ALS/ALSFAQ.aspx

Author: Tanya