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PubMed This is a summary of 22 peer-reviewed journal articles Updated
Neurology · Amyotrophic Lateral Sclerosis

Building Your Multidisciplinary ALS Care Team

At a Glance

An ALS clinic that brings neurologists, nurses, breathing specialists, therapists, speech professionals, dietitians, and social workers together can anticipate changing needs, coordinate equipment and support, and help patients prepare for care.

Managing ALS is not a task for a single doctor. Because the disease affects movement, speech, nutrition, and breathing, the recommended approach to care is a multidisciplinary clinic [1]. In this model, you typically attend one clinic and rotate among team members during a single, comprehensive appointment, though home-based or telehealth models also exist.

Observational research consistently shows an association between multidisciplinary clinic care and improved survival—in some populations extending survival by about 142 days compared to those receiving general neurology care [2]. This survival benefit is even more pronounced for those with bulbar-onset symptoms [2].

Your Multidisciplinary Team Roster

A typical ALS clinic visit lasts several hours as you rotate through meetings with various professionals, each focusing on a specific aspect of your health:

  • ALS Neurologist: Leads the team, manages medications like Riluzole, and monitors your overall neurological status [1][3].
  • Nurse Coordinator: Your primary point of contact who organizes your care and helps navigate the healthcare system [4].
  • Respiratory Therapist / Pulmonologist: Monitors your lung function (FVC) and manages breathing supports like Non-Invasive Ventilation (NIV) [1][5].
  • Physical Therapist (PT): Focuses on safe walking, balance, and stretching to manage muscle stiffness (spasticity) [1][6].
  • Occupational Therapist (OT): Helps you adapt your home and daily activities, such as using specialized utensils or shower seats [1][7].
  • Speech-Language Pathologist (SLP): Evaluates swallowing safety and helps you plan for communication needs, including voice banking [8][9].
  • Registered Dietitian: Monitors your weight and provides strategies for maintaining nutrition when swallowing becomes difficult [1][10].
  • Social Worker / Psychologist: Provides emotional support for you and your caregivers and assists with insurance or disability paperwork [1][11].

Proactive Planning: Timing Is Everything

The goal of the clinic is to be “anticipatory”—meaning the team recommends tools before you are in a crisis.

  • Voice Banking: You should discuss this with your SLP as soon as possible after diagnosis, ideally before your voice sounds slurred (dysarthria) [8]. Voice banking allows you to record your natural voice to be used later in a speech-generating device [12].
  • Mobility Aids: Don’t wait until a fall to ask about a walker or wheelchair. While population data suggests that many patients will benefit from assistive walking devices or a wheelchair over time [13], this is highly individualized based on your own progression. A specialized seating assessment ensures a power wheelchair is customized to your body and your home’s layout [7].

Preparing for Your First Major Visit

To get the most out of your multidisciplinary evaluation, bring available records that help the specialist review your prior evaluation:

  1. Genetic Reports: Bring the full laboratory report for your NEK1 variant. This should include the specific “cDNA” notation [14] and whether you were also tested for other genes like C9orf72 [15].
  2. Diagnostic Tests: Bring copies of your EMG/NCS (nerve and muscle tests). While ALS is a clinical diagnosis, these tests are highly supportive and help exclude other conditions [16][17].
  3. Imaging: Bring the actual images (often on a CD) and the written reports for any MRI scans of your brain or spine [18][17]. The written reports are still useful even if the discs are not available.
  4. Respiratory Baseline: If you have had any pulmonary function tests (PFTs), bring those reports so the team can see how your breathing strength has changed since diagnosis [19].
  5. Legal Documents: Bring copies of your Advance Directive or Healthcare Power of Attorney if you have them, so they can be added to your electronic medical record [20][21].

If you do not live near a specialized center, ask about telehealth options or local referral networks. By centralizing your care in this way, you ensure that every specialist is working from the same information, allowing for a more cohesive and supportive journey [22].

Common questions in this guide

What does an ALS multidisciplinary clinic do?
It brings several professionals together to review different parts of ALS care, often during one coordinated visit. The team may include a neurologist, nurse coordinator, breathing specialist, physical and occupational therapists, speech-language pathologist, dietitian, and social worker or psychologist.
When should I start voice banking after an ALS diagnosis?
Ask a speech-language pathologist about voice banking as soon as possible after diagnosis, ideally before your speech becomes slurred. It records your natural voice so it may be used later with a speech-generating device.
What records should I bring to my first ALS specialty visit?
Bring your full genetic laboratory report, including the exact NEK1 cDNA notation and any C9orf72 testing, plus nerve and muscle test results (EMG/NCS), MRI images and reports, and pulmonary function test reports if available. Advance directives and healthcare power of attorney documents can also be added to your medical record.
When should I ask about a walker or power wheelchair?
Discuss mobility aids before a fall or urgent loss of independence, rather than waiting until you need one immediately. A seating assessment can help customize a power wheelchair to your body, home layout, and daily goals.
How is breathing monitored in an ALS clinic?
The team establishes a baseline of breathing strength, often using pulmonary function measurements such as forced vital capacity, and repeats them over time. A respiratory therapist or pulmonologist can use these results to discuss breathing support such as non-invasive ventilation.
What if I cannot travel to a specialized ALS center?
Ask about telehealth visits and local referral networks that can connect your clinicians with an ALS specialty team. A nurse coordinator can also help share information with your primary care doctor and organize care between specialty visits.

Questions For You

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Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many of the specialists on my care team are present during a single multidisciplinary clinic visit?
  2. 2.What is my 'baseline' for respiratory and motor function, and how often will we repeat these measurements to stay ahead of my needs?
  3. 3.When do you recommend I begin the process of a power wheelchair evaluation to ensure the chair is ready before I absolutely need it?
  4. 4.Can you refer me to a speech-language pathologist specifically trained in voice banking and augmentative communication (AAC)?
  5. 5.How do you coordinate with my local primary care doctor to manage day-to-day issues between clinic visits?

References

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This page is for informational purposes only and does not constitute medical advice. Your ALS care team should tailor specialist referrals, equipment, testing, and advance planning to your needs.