Competently Managing ALS Decline

Therapist holding patient's leg

The early symptoms of amyotrophic lateral sclerosis (ALS) can easily be mistaken for other diseases. For instance, ALS can be misdiagnosed as a cervical disc injury, leading to a delay in a correct diagnosis for some patients.

Do you have the necessary ALS-specific knowledge to competently differentiate between weakness caused by ALS versus weakness caused by a disc injury? ALS can take months to diagnose, but because ALS shortens a person’s life expectancy, a quick diagnosis is essential.

If your patient presents these subtle symptoms, refer them to a specialist:

  • Weakness of the upper or lower extremities that does not improve with therapy
  • Slurred speech
  • Difficulty swallowing
  • Wasting of the thenar eminence

Treating People with ALS

Treating this disease requires the therapist to accurately differentiate between signs and symptoms of upper and lower motor neuron dysfunction as well as understand the time period throughout which the symptoms appear. ALS progresses slowly and unremittingly and inevitably results in death.

The therapist’s goal is not that the patient gets better, but rather that the patient’s quality of life remains as good as possible as the disease progresses. Interventions for ALS require understanding, insight, and specific skills to treat and support the patient and family competently as they decline.

Although it has long been believed that patients with ALS should not exercise, recent evidence shows that the right exercise prescription, including strengthening of the respiratory muscles, can be beneficial for a better quality of life.1

A Team Approach

It is vital to have a skilled team of rehabilitation practitioners who understand the distinctive needs of the ALS patient, such as:

  • Medication
  • Equipment
  • Emotional support
  • Family support
  • Physical therapy
  • Occupational therapy
  • Speech therapy

Physical, occupational, and speech therapists are vital to this team and provide the expertise required for quality intervention as the patient navigates through their decline in function.

People with ALS require specialized equipment, which should be available at every stage of decline. These include:

  • Assistive devices
  • Wheelchair prescription
  • Home equipment needs
  • Communication technology
  • Respiratory devices

You can learn more about equipment and timing for patients with ALS in the MedBridge course, “Treatment Concepts for Persons With ALS,” presented by me and my colleague, Valerie Carter, PT, DP, NCS, GCS.

Preventing Scams

Like anyone else with a debilitating terminal illness, people with ALS can be enticed by hoaxes and scams that take advantage of people desperate for a cure. The website reviews alternative and off-label medications and grades them with the goal of helping patients with ALS make more informed decisions about them.

Though ALS can pose many challenges throughout a patient’s life, the right team, the right equipment, and the right medications—all at the right time—can be the key to helping people with this devastating disease have the best possible quality of life and comfort.

  1. Tsitkanou, S., Della Gatta, P., Foletta, V., & Russell, A. (2019). The role of exercise as a non-pharmacological therapeutic approach for amytrophic lateral sclerosis: beneficial or detrimental? Frontiers in Neurology, 10, 783.