Amyotrophic Lateral Sclerosis and Exercise

Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease, is a devastating neurodegenerative disease involving the progressive loss of upper and lower motor neurons. The increasing muscle atrophy and spasticity caused by the disease leads to weakness and fatigue which eventually affects a person’s ability to ambulate, complete self-care tasks and ultimately breathe. As the disease approaches its end stages individuals become completely dependent, unable to speak or swallow and requiring mechanical ventilation for respiratory failure. Living just three to five years after an ALS diagnosis is considered normal. So with this prognosis, it is no wonder that a diagnosis of ALS leads people to ask what, if anything, can be done to prolong strength and health and delay the course of the disease.

At present, there is no known cure for the disease and the mainstay of medical intervention has been pharmacologic treatment and individualized symptom management by an interdisciplinary team. This can include exercising which is known to have physical benefits along with maintaining a healthy emotional state. However, evidence on the benefits, dosing and safety of exercise in the ALS population is extremely limited and somewhat controversial.¹ In fact, effortful exercise for individuals with ALS was widely discouraged for many years because it was believed to be associated with progressive degeneration, denervation and over-fatigue. However, more recently, studies suggest that moderate and carefully monitored exercise programs for individuals with early-stage ALS could be beneficial without consequent adverse effects.^2,3 But the data is still preliminary. This is because ALS is a rapidly progressing disease and maintaining a large sample size for a sufficient length of time in order to perform a high-level randomized controlled study is virtually impossible. So at this point, with the limited information available, exercise for ALS seems to require the need to strike a balance between prevention of overuse fatigue and disuse atrophy: certainly a degenerating muscle will be more susceptible to over-work damage, but then again, reducing activity level simply because of the diagnosis may lead to further cardiovascular deconditioning and weakness beyond the disease itself.

In researching ALS however, I was particularly interested in one topic: the benefits of supported ambulation in rehabilitation for individuals with ALS. And why? Because two remarkable individuals with ALS seem to have defied the odds and are now using the Rifton TRAM for consistent supported ambulation practice and using it to work towards achieving their long-term goals. It appears that both these individuals have survived with the diagnosis of ALS for over 10 years.

One of the individuals, a renowned entrepreneur in the fitness industry, Augie Nieto, is planning on using the TRAM to walk his daughter down the aisle at her July wedding.  His amazing journey after his diagnosis of ALS is captured in this article taken from the OC Register. (Click through the pictures at the top to see Augie in the TRAM).

The second individual, Dr. Craig Oster, was diagnosed with ALS at age 30 and is still around to tell his story 20 years later. He too uses the TRAM for rehabilitation.

Although there is limited research in the area of supported ambulation for individuals with ALS, one study does point to the use of supported treadmill training for improving ambulation and endurance in this population.⁴ The researchers in this study hypothesized that supported ambulation, by off-weighting an individual with ALS, could decrease the chance of over-use fatigue while at the same time providing repetitive, rhythmic exercise that closely mimicked the specific task of walking. According to current understanding of neuroplasticity and rehabilitation, task specificity is very important in improving functional outcomes. Although this study was performed on individuals with ALS who could still ambulate with an assistive device, results showed an improvement in gait function after four weeks of the supported treadmill training intervention with the effects maintained up to eight weeks after the study ended. The researchers also determined the intervention to be feasible and safe as no adverse effects were reported during the course and follow-up of the study, but certainly recommended further robust trials to validate the findings.  How this type of intervention would play out on individuals in the more advanced stages of ALS is still unknown, although we do have the examples of Augie Nieto and Dr. Craig Oster using the Rifton TRAM.

Because of its unique transfer opportunities and low-profile body-support system, the Rifton TRAM is being used more widely for early mobilization in the acute care setting with significantly compromised individuals and those on ventilator support. Although more evidence is needed, it may have a future role in improving the quality of life and maintaining the functional status of individuals in all stages of ALS progression as well.

References

1. Lewis M, Rushanan S. The role of physical therapy and occupational therapy in the treatment of amyotrophic lateral sclerosis. NeuroRehabilitation. 2007; (22): 451-61.
2. Lui AJ, Byl NN. A systematic review of the effect of moderate intensity exercise on function and disease progression in amyotrophic lateral sclerosis. JNPT. 2009; (33): 68-87.
3. Dal Bello-Haas V, Florence JM. Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease (Review). Cochrane Database of Systematic Reviews. 2013; (5).
4. Sanjak M, Bravver E, Bockenek WL et al. Supported treadmill ambulation for amyotrophic lateral sclerosis: a pilot study. Arch Phys Med Rehabil. 2010; (91): 1920-29.