Maintaining Function in ALS

Vol. 14 •Issue 1 • Page 12
Maintaining Function in ALS

Is physical therapy a safe and effective intervention for this complex condition?

Helen Scanlon was 66 years old when she slowly began to lose control of some of the muscles in her body. She soon found that even the simplest movements, such as walking and gesturing, became monumental struggles. When her ability to speak was finally compromised, Helen’s medical team delivered the crushing diagnosis: amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease.

Helen’s symptoms were textbook signs—progressive weakness in hands, arms or legs; difficulty in speech and swallowing; “thick speech” or trouble projecting the voice. Later stages can see shortness of breath and difficulty with swallowing. Categorized as a motor neuron disorder, ALS attacks the medulla oblongata and the lower neurons of the spinal cord.

Because ALS attacks only motor neurons, the senses of sight, touch, hearing, taste and smell are not affected, according to the ALS Association, based in Calabasas Hills, CA. And the mind stays sharp despite a maddening deterioration of the body around it.

The Role of PT

Given that ALS results in functional muscle impairment and progressive weakness, physical therapy would seem a logical intervention to stall its progression. An article by Wendy King, PT, physical therapy supervisor in Ohio State University’s department of neurology, on the Lou Gehrig’s Disease Website ( identifies four key benefits that PT can offer to the patient with ALS:

• Maintaining range of motion;

• Maintaining muscle strength;

• Maintaining function;

• Decreasing pain.

To attain these goals, King advised beginning active, active-assisted, or passive ROM exercises and equipment needs before the patient loses mobility. Early timing is important, King writes, because a vicious cycle can easily be entered in which the patient avoids moving painful joints through their natural ranges, and this restriction of movement in turn leads to tighter and less elastic joints.

The most common complications PT can alleviate, King wrote, are adhesive capsulitis of the shoulder and neck flexion contracture. Restriction of shoulder movement has a noticeable effect on quality of life, since almost all upper extremity movements involve its use, and eventually just sitting upright with an unsupported arm will prove intolerably painful for the patient.

King recommended that patients lie on their backs and use a cane or dowel to allow the opposite arm to supply the strength for the ROM exercise. Even if the patient cannot complete the movement under his own power, caregivers and family members can be instructed to assist the movement gently to prevent capsulitis while avoiding injury. After the condition has progressed, deep heat, ice and anti-inflammatory medication can restore some flexibility while reducing pain.

For weakened neck muscles that can cause the head to droop, King recommends similar ROM techniques once per day, with the explicit instruction to therapists that neck braces should be considered before the flexor muscles have shortened so much that the brace is intolerable.

Exercise and ALS

While maintaining ROM is a common goal among medical professionals, there still isn’t a consensus as to the real value of exercise and physical activity. Instead, most ALS clinics will have OTs on staff to maintain function in the remaining musculature.

Researchers in the neurology department at Tel Aviv’s Sourasky Medical Center followed 25 patients with ALS through either a moderate daily exercise program or no exercise at all beyond their usual daily activity. Strength levels of subjects were assessed at three-month intervals using a number of scales.1

At three months, two parameters showed stalled muscle deterioration in the exercise group; at 6 months, a less significant trend toward stalled muscle deterioration in the exercise group was witnessed; and at 9 and 12 months, there were too few subjects in either group for sufficient analysis. The results prompted study authors to determine that a moderate exercise program could provide sufficient short-term benefits and should be recommended.

Further, a Portuguese study suggested that exercise may be beneficial in patients diagnosed with the condition once peripheral and muscle oxygenation is controlled through noninvasive assisted ventilation. The researchers in this study noticed significant differences at three-month intervals on the functional independent mobility (FIM) scale between 8 exercised and 12 unexercised patients with ALS. They also noticed a slower clinical course and better scores on respiratory function tests in the exercised group.2

Neurosport Physical Therapy, a sports-oriented practice in Marietta, GA, provides a specialized component for patients with ALS to attend therapy at a discounted monthly rate for one or two sessions per week, two hours at a time.

“Although we cannot yet alter the outcome of the disease, with focus on proper stretching and maintaining strength, the course of [ALS] can be less painful and slower to progress,” said founder Carolyn Lawson, PT. Therapists also provide suggestions on adapting ADLs, such as dressing, bathing and eating, and are available to instruct patients and family members on the most efficient methods in which to perform tasks.

Maintaining a dedication to community involvement, Neurosport physical therapists have been invited to speak at local ALS Association meetings to present information on stretching for patients, both alone and with a partner, strengthening activities, physical therapy related medical issues, safety concerns and ADLs.

And each year, on the Saturday before Thanksgiving, Neurosport sponsors a 5K Run/Walk from which all proceeds are donated to the ALS Association of Georgia. Last year’s event hosted 300 racers, including runners, walkers, wheelchair racers, and children of all ages.

Difficult Transition

From a patient’s perspective, perhaps the most inspiring words come from Joe Harris, a physical therapist himself who began noticing ALS symptoms in his own body in 1997, and is now semi-wheelchair bound and fighting to maintain strength in his upper and lower extremities. Harris, who had worked at Bannock Regional Medical Center in Pocatello, ID, maintains a Website,, to share his knowledge and the experiences of others who have the disease.

“Throughout my disease process I have undergone a transformation from a physically oriented individual to more cerebrally focused,” writes Harris, who had to make the difficult transition from caregiver to dependent patient. “I have mourned every physical loss by going through the stages of grief. In a way, I had to reinvent myself. Some last words of advice [are to] never give up, set future goals, hunger for opportunities to laugh, explore the world for ways to keep yourself productive, and seek out supportive friends, family and strangers.”

• For more information, contact the ALS Association at or 800-782-4747.


1. Drory, V.E., et al. (2001). The value of muscle exercise in patients with amyotrophic lateral sclerosis. Journal of the Neurological Sciences, 191, 133-137.

2. Pinto, A.C. (1999). Can amyotrophic lateral sclerosis patients with respiratory insufficiency exercise? Journal of the Neurological Sciences, 169, 69-75.

Jonathan Bassett is on staff at ADVANCE, and can be reached at [email protected]

Italian Soccer Players Prone to ALS

In one of the more interesting studies to come out of neuropathology research last year, professional soccer players in Italy were found to be far more likely to contract amyotrophic lateral sclerosis (ALS) than the general population.

The investigation was a far-reaching one, spanning 24,000 players who were active between 1960 and 1996. It was sparked after claims of rampant drug use among Italian soccer players surfaced, and was reported last month by Reuters Health.

According to the report, the established frequency rates of ALS in the general population would dictate that out of the 24,000 players studied, 0.69 deaths from ALS should have been reported. Instead, there were 8 reported deaths from the disease in the sample, along with a higher-than-usual rate of non-fatal ALS cases. The latest documented ALS-related death occurred in November, when Gianluca Signorini succumbed to the disease at 42.

Additionally, the study found nearly double the rate of deaths from cancer of the colon, liver and pancreas, causing many to speculate that doping may be the cause.

“[Health Minister Girolamo Sirchia] was struck by the gravity of the phenomenon and promised that the government will take the appropriate measures,” public prosecutor Raffaele Guariniello told the Italian daily La Stampa.

But despite the elevated disease rates, physicians are reluctant to confirm a causal relationship between drug use and ALS.

“The cause of the disease is yet to be determined,” Dr. Letizia Mazini, of the San Giovani Bosco Hospital in Turin, told Reuters Health. “According to epidemiologic surveys, there could be a link with muscular stress, but these are still hypotheses.”