Speech Therapy for ALS and Progressive Neurological Conditions
A diagnosis like ALS, primary progressive aphasia, or another degenerative neurological condition brings with it many unknowns. For patients and families alike, one of the most difficult parts is anticipating how communication, swallowing, and daily function may change over time.
As a speech-language pathologist, my role is to support both patients and their families through every stage of the journey. While there is no cure for these conditions, speech therapy can help preserve abilities, introduce tools for adapting to change, and maintain dignity and independence as long as possible.
Understanding ALS and Related Conditions
ALS (Amyotrophic Lateral Sclerosis) is a progressive neurodegenerative disease that affects the nerve cells responsible for voluntary muscle movement. Over time, it can lead to significant weakness in the arms, legs, and muscles used for speaking, swallowing, and breathing.
Other progressive conditions I work with include:
Primary Progressive Aphasia (PPA)
Parkinson’s Plus syndromes (e.g., PSP, MSA)
Frontotemporal dementia (FTD)
Multiple sclerosis (MS) in its advanced stages
Each condition affects the brain and body differently, but many share common features: declining speech, increased communication barriers, and risk of swallowing complications.
What Is ALS?
Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord—specifically the upper and lower motor neurons responsible for voluntary muscle movement. Over time, these motor neurons degenerate and die, causing muscles to weaken, atrophy, and eventually stop functioning.
ALS is sometimes called Lou Gehrig’s disease in the U.S., named after the baseball player who was diagnosed with it in the 1930s.
Key Characteristics of ALS
Progressive muscle weakness: Usually starts in one area (arm, leg, speech, or swallowing) and spreads
Motor-only disease: It primarily affects motor neurons; cognition and sensation are typically preserved, though some individuals may develop mild cognitive or behavioral changes
No known cure: Average life expectancy is 2–5 years from diagnosis, though some individuals live much longer
Most cases are sporadic: Roughly 90–95% of ALS cases are sporadic with no family history. The remaining 5–10% are familial ALS, caused by inherited gene mutations
What Causes ALS?
The exact cause is still unknown, but research points to a combination of genetic, environmental, and cellular factors:
Genetic mutations: The most well-known is C9ORF72, along with SOD1, TARDBP, and FUS
Glutamate excitotoxicity: Excess glutamate may damage neurons
Oxidative stress and mitochondrial dysfunction
Protein misfolding and aggregation
Neuroinflammation: Abnormal immune system responses may contribute to cell death
There is no single trigger, and researchers believe multiple factors likely converge to cause disease onset.
Early Symptoms
Weakness in the hands, feet, legs, or tongue
Slurred speech or changes in voice (often the first sign in bulbar-onset ALS)
Difficulty with swallowing or chewing
Muscle twitching (fasciculations), cramps, or stiffness
Fatigue, poor coordination, or frequent falls
How ALS Progresses
ALS typically spreads throughout the body, leading to:
Loss of speech and swallowing ability
Total body paralysis
Eventually, respiratory failure due to weakened diaphragm and chest muscles
Despite physical decline, most people remain mentally aware, which can make loss of function particularly distressing.
Diagnosis and Monitoring
There is no single test for ALS. Diagnosis is made based on:
Clinical examination
Electromyography (EMG) and nerve conduction studies
MRI and blood tests (to rule out other conditions)
Genetic testing (in some cases)
ALS is often diagnosed after ruling out other causes of symptoms. This can take months, contributing to emotional stress during the diagnostic period.
Treatment and Management
While there is no cure, several treatments can slow disease progression or manage symptoms:
Riluzole: The first FDA-approved drug for ALS, modestly extends life expectancy
Edaravone: Slows functional decline in some patients
AMX0035 (Relyvrio): Approved in the U.S. in 2022; may slow progression in early stages
Tofersen: Approved for SOD1-ALS, a genetic subtype, in 2023
Non-invasive ventilation (BiPAP) to support breathing
Feeding tubes (PEG) to ensure nutrition
Speech therapy, AAC devices, and voice banking to preserve communication
Multidisciplinary care at ALS clinics to improve quality of life and coordination
Communication and Swallowing
Speech-language pathologists play a critical role in:
Assessing and managing dysarthria (slurred or weak speech)
Teaching breath support and pacing strategies
Evaluating and treating dysphagia (swallowing difficulty)
Introducing AAC tools (low-tech and high-tech) as needed
Supporting voice banking early in the disease for future use
Research Directions
Promising areas of current research include:
Gene therapies targeting familial ALS mutations
Stem cell therapies to repair or replace motor neurons
Neuroinflammation modulators
Biomarker development for earlier diagnosis and treatment tracking
ALS is now considered a heterogeneous disease, meaning future treatments may need to be tailored to a patient’s specific subtype or genetic profile.
How Speech Therapy Helps
Therapy in these cases is about preserving quality of life. My approach focuses on three core goals:
1. Maintaining Communication
Training strategies for clearer speech, breathing support, and pacing
Voice banking or message banking for individuals with ALS, to preserve the sound of their voice for future use
Introducing augmentative and alternative communication (AAC) tools, ranging from low-tech boards to high-tech speech-generating devices
2. Supporting Safe Swallowing
Early evaluation of swallowing function, even before symptoms appear
Exercises to maintain muscle strength and coordination
Diet modifications, posture adjustments, and pacing techniques to reduce aspiration risk
3. Educating and Empowering Families
Providing caregiver training and realistic guidance as changes occur
Helping loved ones maintain meaningful communication even when speech is limited
Offering emotional support through a trusted, ongoing therapeutic relationship
Therapy That Evolves With You
One of the unique challenges of progressive conditions is that needs change over time. I continue to adjust therapy goals and tools to meet each stage—whether that means practicing speech strategies early on or providing access to advanced AAC systems in later stages.
Above all, my focus is on helping each person feel heard, respected, and supported.
In-Home and Facility-Based Care
I offer in-home therapy throughout Palm Beach County, including Boynton Beach and surrounding areas. I also provide services in assisted living, skilled nursing, and memory care settings. Teletherapy may be available depending on the condition and stage.
You Deserve Support at Every Stage
Whether you're newly diagnosed or navigating the later stages of a progressive condition, I’m here to help you plan ahead, adapt with confidence, and maintain your voice—however that looks for you.
Contact me to learn more about therapy for ALS and progressive neurological conditions or to schedule a consultation.