ALS (Amyotrophic Lateral Sclerosis): speech, swallowing and therapy

ALS (amyotrophic lateral sclerosis, once called Lou Gehrig’s disease) is a progressive disease of the motor neurons that weakens the muscles for moving, speaking, swallowing and breathing.⁠¹ Most people with ALS eventually have trouble speaking and swallowing.⁠² A speech-language pathologist helps from the first signs: speaking strategies, voice banking, communication devices and safer swallowing.⁠^3,4

What is ALS?

Amyotrophic lateral sclerosis (ALS), formerly known as Lou Gehrig’s disease, is a neurological disorder that affects the motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing. It is progressive: symptoms get worse over time.⁠¹ As motor neurons die, the muscles they control weaken, twitch (fasciculations) and waste away (atrophy), and the brain loses its ability to start and control movements such as walking, talking and chewing, as well as breathing.⁠¹

Signals travel from nerve cells in the brain (upper motor neurons) to nerve cells in the brain stem and spinal cord (lower motor neurons) and on to the muscles.⁠¹⁵ ALS damages both: the loss of upper and lower motor neurons produces the progressive weakness and wasting.⁠² ALS is one of the motor neuron diseases, a group that also includes progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy’s disease and post-polio syndrome.⁠¹⁵ NICE’s guideline for England uses the British term, motor neurone disease (MND).⁠⁹

How common is ALS?

Uncommon, and counted only by estimate, because ALS is not a notifiable disease in the US.⁠¹⁶ The figures each source gives:

• People living with ALS: CDC’s National ALS Registry projects 34,720 adults in 2026, and the VA puts the number at about 30,000; the registry notes that 2018 is the most recent year of measured prevalence.⁠^17,18
• New diagnoses: about 5,000 to 6,000 a year, by the VA’s count; the registry estimated 5,695, 6,045 and 4,861 new adult cases in 2014, 2015 and 2016.⁠^17,18
• Rate: 1.44 new cases per 100,000 people a year from 2012 to 2019, ranging by state from 0.65 per 100,000 in Alaska to 2.25 in Vermont; New England and the upper Midwest had higher rates than the nation.⁠¹⁶

Who gets ALS?

ALS can start at any age, but symptoms most often begin between 55 and 75.⁠¹ In a 2020 clinical review, the average age when symptoms began was 58 to 63 for sporadic ALS and 40 to 60 for familial ALS, and the lifetime risk of developing ALS was estimated at 1 in 350 for men and 1 in 400 for women.⁠² Men are slightly more likely to develop ALS than women, though at older ages the two are equally likely to be diagnosed; White people, particularly non-Hispanic White people, are most likely to develop it, but it affects people of all races and ethnicities.⁠¹

What are the first signs of ALS?

The most common early sign is gradual muscle weakness, usually painless, and where it starts differs from person to person: some people first notice difficulty holding a pen or lifting a cup, others a change in their voice or speech.⁠¹⁹ Early symptoms NINDS lists:

• Muscle twitches in the arm, leg, shoulder or tongue, and muscle cramps.⁠¹
• Tight and stiff muscles (spasticity).⁠¹
• Muscle weakness affecting an arm, a leg or the neck.⁠¹
• Slurred and nasal speech.⁠¹
• Difficulty chewing or swallowing.⁠¹

Not everyone has the same symptoms or the same order of progression.⁠¹⁹ In about two thirds of people ALS begins in the arms or legs (spinal or limb onset); about 3% first have weakness of the diaphragm, the main breathing muscle.⁠² ALS can also first show itself through changes in thinking.⁠⁹

What is bulbar-onset ALS?

Bulbar-onset ALS starts in the muscles of the mouth and throat that control speaking and swallowing, called the bulbar muscles.⁠²⁰ It is the first presentation in about 25% to 30% of people, with slurred speech (dysarthria), swallowing difficulty (dysphagia), voice changes (dysphonia) or, more rarely, weakness of the jaw muscles.⁠² NICE describes a bulbar presentation as speech or swallowing problems, or twitching of the tongue.⁠⁹

The first speech changes are subtle: they usually do not make speech harder to understand, and may be no more than a slower speaking rate, a change in voice quality or less precise articulation.⁠⁵ Bulbar onset is more likely in people with the C9orf72 gene expansion, and it tends to move faster: the 2020 review gives a median survival of 2 years from onset for bulbar ALS, and NICE lists a bulbar presentation among the factors linked to shorter survival.⁠^2,9 Even when ALS starts in the limbs, the majority of people eventually have speech and swallowing difficulties.⁠²

ALS weakness comes on gradually and is usually painless.⁠¹⁹ A sudden change in speech needs emergency care, not a wait for a clinic appointment.⁠²¹

What causes ALS, and is it genetic?

For most people the cause is unknown. Nearly all cases are sporadic, seeming to happen at random, with no clearly associated risk factors and no family history; about 10% are familial (inherited, or genetic).⁠¹ Family members of people with ALS have an increased risk, but their overall risk is very low.⁠¹

Changes in more than a dozen genes can cause familial ALS. The two most common:

• C9orf72: about 25% to 40% of familial cases and a small number of sporadic cases (NINDS); the 2020 review gives 30% to 50% of familial and 7% to 10% of sporadic ALS.⁠^1,2 The same gene change can cause frontotemporal dementia, ALS or both, and it appears to be the most common genetic abnormality in both when they run in families.⁠²²
• SOD1: another 12% to 20% of familial cases; about 2% of all ALS, which FDA estimates at fewer than 500 people in the US. Tofersen treats this form.⁠^1,23

Genetic tests exist for some genetic causes of ALS.⁠¹⁵ A rare genetic form affects children as young as 4 years.⁠¹ Smoking, body mass, exercise and exposure to metals and pesticides have all been studied as environmental risk factors, but a causal link has not been established.⁠² Some studies link head injury to a higher risk of ALS, and more research is needed to understand the connection.⁠¹

Are veterans more likely to get ALS?

Yes. Some studies suggest that military veterans are about one and a half to two times more likely to develop ALS, though the reason is unclear; possible factors include exposure to lead, pesticides and other environmental toxins.⁠¹ The VA puts the risk at about 1.5 times that of people who never served.⁠¹⁸ Federal regulation treats ALS as service-connected whenever it develops after discharge, for veterans with 90 days or more of continuous active service; the benefits are in the benefits section.⁠¹⁴

What are the symptoms of ALS as it progresses?

As ALS progresses, weakness spreads, and more of everyday life is affected. The problems NINDS lists include:

• Moving: weakness, stiffness and wasting of the muscles of the arms, legs and neck.⁠¹
• Speaking or forming words (dysarthria): slow, effortful, slurred speech and a breathy or hoarse voice.⁠^1,3
• Chewing and swallowing (dysphagia), and keeping a healthy weight.⁠¹
• Drooling (sialorrhea), because saliva pools when swallowing weakens.⁠^1,24
• Breathing (dyspnea): shortness of breath during activity and difficulty breathing at night or when lying down.⁠¹
• Emotions: unintended crying, laughing or other emotional displays (pseudobulbar symptoms).⁠¹

ALS does not affect sight, touch, hearing, taste or smell, and the eye muscles and bladder control are usually spared.⁠¹⁹ The VA notes that it can affect thinking, behavior and bowel or bladder function in some people.⁠¹⁸ Living with these losses can cause anxiety and depression in the person with ALS and in their family.⁠¹

Does ALS affect thinking, language or behavior?

Often not, and many people with ALS remain mentally alert and aware throughout the disease.⁠¹⁹ Because most remain able to reason, remember and understand, they are aware of their loss of function; some people have problems with language or decision-making.⁠¹ The European guideline puts behavioral and cognitive change at up to 50% of people with ALS, and the ALS Association says that up to 50% never develop significant changes.⁠^25,26 In the 2020 review, 35% to 40% had mild behavioral or cognitive changes, and in 10% to 15% an additional diagnosis of frontotemporal dementia (FTD), a form of dementia, could be made.⁠²

When thinking changes, it typically affects attention, flexible thinking and word generation more than memory.⁠¹¹ Signs the ALS Association lists that touch communication:

• Saying “no” when meaning “yes,” or less reliable yes and no answers.⁠²⁶
• Thinking of a word but not getting it out in conversation, or saying or writing words in the wrong order.⁠²⁶
• Not following therapy instructions or swallowing precautions.⁠²⁶

Other causes of thinking changes are worth checking first: too little oxygen or too much carbon dioxide from weak breathing, medication side effects, depression or anxiety, and poor sleep.⁠²⁶ The AAN says screening tests of executive function may be considered to detect these changes (Level C), and notes that the Mini-Mental State Examination is less sensitive to them; frontal lobe impairment was linked to lower use of feeding tubes and breathing support and to shorter survival.⁠¹¹ Language problems after a stroke or a brain injury are covered in aphasia and cognitive-communication disorders.

Why do people with ALS laugh or cry uncontrollably?

This is pseudobulbar affect: sudden crying or laughing that is exaggerated or does not match how the person feels. It is common in ALS, the result of a brain reflex that no longer works correctly, and it does not necessarily mean the person is anxious, sad or depressed.⁠^26,27 The AAN puts it at 20% to 50% of people with ALS, the 2020 review at about one third.⁠^2,11 Dextromethorphan with quinidine (Nuedexta) is prescribed for it; the AAN rates it Level B, and the European guideline also lists antidepressants (SSRIs or tricyclics) as options.⁠^11,25,27

How is ALS diagnosed?

There is no single test that can definitely diagnose ALS.⁠¹ It is a clinical diagnosis, made when a person with progressive weakness has signs of both upper and lower motor neuron damage and no other explanation is found; newer, simpler criteria that have been proposed need only combined upper and lower motor neuron signs in one body region, or lower motor neuron signs in two.⁠² A neurologist familiar with ALS can help a person get diagnosed early, and the exam and tests are repeated at regular intervals to see whether symptoms are getting worse.⁠¹ The tests mostly rule out other conditions:

Because many treatable conditions can mimic ALS, diagnosis often takes time: the delay is still often up to a year after the first symptoms.⁠^2,19 The ALS Association strongly recommends a second opinion from an ALS specialist, since in about 10% to 15% of cases people first told they have ALS later learn they have a different condition.⁠¹⁹ NICE asks doctors who suspect ALS to refer the person without delay.⁠⁹ The conditions that can look like it are in the related conditions section.

How does ALS affect speech?

ALS causes speech problems when it attacks the motor neurons for the speech muscles, producing dysarthria: slow, effortful, slurred speech and a breathy or hoarse voice.⁠³ Weakening breathing muscles affect speech too: speaking can be tiring, especially later in the day, and people find themselves using shorter sentences and struggling to project their voice.⁠³ Speech can also sound nasal, when too much sound passes through the nose.⁠^1,3

Because ALS damages both upper and lower motor neurons, its dysarthria is expected to be mixed spastic–flaccid: upper motor neuron damage gives spastic dysarthria, with slow, labored and distorted speech, and lower motor neuron damage gives flaccid dysarthria, with a wasted, twitching tongue.⁠^2,28 ASHA classes such combinations as mixed dysarthria.⁠²⁹

Almost all people with ALS develop a motor speech disorder as the disease progresses, and at some point 80% to 95% cannot meet their daily communication needs with natural speech.⁠⁵ Dysarthria is common in other neurological diseases too, but not this common: ASHA’s figures are 26% to 62% of people with neuromuscular disease, 44% to 88% with Parkinson’s disease and 40% to 51% with multiple sclerosis.⁠²⁹

How fast does speech change in ALS?

It varies. There is no single timeline for ALS, and many people have periods of weeks or months with little or no noticeable change.⁠³⁰ Speech often stays easy to understand for a while, but once intelligibility begins to fall it can decline so quickly that there is little time left to set up a communication device.⁠⁵ That is why speaking rate is measured:

• A baseline: the ALS Association advises having a speech therapist measure your speech rate early, as the number that guides the timing of each step.⁠³
• Regular checks: in research that followed 158 people every 3 months from diagnosis to death; changes in speaking rate typically come before speech becomes harder to understand, and the rate can be measured over the phone for people who live far away.⁠⁵
• A threshold: one research group recommends referral for an AAC assessment when speaking rate falls to 125 words per minute on the Speech Intelligibility Test; adults without a disability average 190 on that test.⁠⁵

Does speech therapy help with ALS?

Yes, though not by restoring speech. In a progressive disease, the goal of treatment is to maximize communication at each stage of the disease, not to reverse decline.⁠²⁹ Speech therapists help people with ALS learn strategies to speak louder and more clearly and to keep communicating as speech changes.⁠¹ The ALS Association advises starting with a speech therapist who knows ALS at the earliest sign of speech or voice change, or even before, and NICE asks for a speech and language therapy assessment without delay.⁠^3,9 Hoarseness is one more reason: the European guideline says to consider speech therapy for people with ALS who have a hoarse voice (see voice disorders).⁠²⁵

The evidence is from clinical practice and observational research rather than trials: the AAN found no controlled studies of communication treatment in ALS, so it rates the data as insufficient to support or refute it (Level U).⁠¹¹ What the speech-language pathologist (SLP) does, step by step, is in the stage-by-stage section; speech therapy explains what SLPs do, and speech therapy for adults how adult therapy works.

What speaking strategies make ALS speech easier to understand?

The ALS Association’s advice for the speaker:

• Save energy for talking. Fatigue directly affects speech, so plan phone calls and gatherings for your high-energy times and allow for breaks.⁠³
• Choose the setting. Avoid noisy or dimly lit rooms for important or long conversations, and make sure listeners can see your face.⁠³
• Slow down and exaggerate the sounds, especially at the ends of words, where they are most likely to be dropped.⁠³
• Breathe often. A breath every few words makes speech louder and easier to hear; give speaking your full attention, and do not eat or drink at the same time.⁠²⁰
• Use a single keyword, such as “lunch” or “medicine,” and name the new topic when you change it.⁠^3,20
• Switch modes: if a word is not understood after two tries, spell it aloud or trace the letters on your palm or a table.⁠³
• Agree on a turn signal, a gesture that tells listeners you have something to add.⁠³

Two devices help specific problems. If speech is clear but quiet, a light, wearable voice amplifier with a hands-free microphone helps; if a nasal quality is the main problem, a removable palatal lift appliance, which reduces the sound passing through the nose, may be suggested.⁠³

Do speech exercises help with ALS?

No. The dysarthria of ALS is managed differently from the dysarthria after a stroke: strengthening exercises designed for other kinds of dysarthria have not been shown to improve speech in ALS, oral motor exercises are not recommended, and rest can temporarily improve speech.⁠³ The strategies above, and planning ahead for communication devices, are the core of therapy.⁠^3,29

What communication devices help people with ALS?

Augmentative and alternative communication (AAC) is any method that adds to speech or replaces it once speech is no longer functional, and ALS is one of the conditions ASHA names for it.⁠^31,32 Most people with bulbar symptoms go through several communication aids as their needs and abilities change.⁠²⁰ The main options:

Choose a system for the body as it will be, not only as it is: researchers advise technology that supports several access methods, so a person can move from hand access to scanning or head or eye tracking.⁠⁵ The goal is to match the system to current abilities while planning for future changes, and NICE asks teams to make it work with other equipment, such as environmental controls, computers and tablets, and with breathing equipment, which can have compatibility problems with eye-gaze systems.⁠^9,31

How does eye-gaze technology work for ALS?

An eye-gaze system lets a person control a communication device with eye movement, typing or selecting messages that the device speaks.⁠^1,31 It suits ALS for two reasons: eye movement is often the least tiring way to operate a device, and it may be the only voluntary movement left, particularly for people who choose invasive ventilation.⁠⁵ In one study of 15 people, 93% reported using eye tracking successfully, and for 53% it was the only access option they had; glasses can need the camera angle adjusted to avoid glare.⁠⁵

When should someone with ALS start using AAC?

Before it is needed. AAC planning is most successful when started early, and the ALS Association advises having the parts of a complete system in place before you have to rely on them; a speech therapist will often recommend an AAC evaluation when speech begins to need repeating or the speaking rate slows markedly.⁠^3,31 NICE asks for AAC equipment without delay, and the European guideline for referral to a specialized AAC hub when complex equipment, such as eye-gaze access, is or is likely to be needed.⁠^9,25

Started on time, AAC is used. In the Nebraska work, 96% of people whose speaking rate was monitored and who were referred on time accepted and used AAC, on average for 24.9 months with bulbar ALS and 31.1 months with spinal ALS, many until a few weeks before death.⁠⁵ In one sample, 88% got a timely assessment; most late referrals came from general practitioners, neurologists outside a multidisciplinary clinic or long-term care staff.⁠⁵ Access is uneven: in Scotland, 17.3% of people with ALS acquired AAC equipment, and in Germany 46% of patients needed AAC, yet 39% failed to get a device.⁠³²

Does Medicare pay for a speech-generating device?

Yes. Medicare treats speech-generating devices as durable medical equipment, covered for people with a severe speech impairment and a medical condition that warrants one; computers and tablets generally are not, because they are useful without an illness.⁠⁷ What Medicare’s coverage policy requires:

• A formal evaluation by an SLP before the device is delivered, covering the type and severity of the impairment, language and thinking skills, the expected course, whether other ways of communicating could meet daily needs, and why the device and accessories were chosen.⁠⁸
• An independent evaluator: the SLP may not work for, or have a financial relationship with, the device supplier.⁠⁸
• A training plan for the device, and the SLP’s report sent to the treating practitioner before the device is ordered.⁠⁸
• Eye tracking: eye-tracking, gaze-interaction and similar accessories are covered for people with a demonstrated medical need, and alternative input devices when standard ones cannot be used.⁠⁸

Most insurance plans cover one speech-generating device every 5 years, usually after prior approval and an AAC assessment, the ALS Association says, and Medicare may not cover AAC devices in every setting, such as skilled nursing facilities or hospice.⁠^32,33

Can brain-computer interfaces restore speech in ALS?

Not yet as a standard treatment. A brain-computer interface (BCI) lets a person communicate or control equipment using brain activity alone, and researchers are developing more efficient, mobile BCIs for people with severe paralysis.⁠¹ In one investigational study, a 45-year-old man with ALS and severe dysarthria had four microelectrode arrays implanted in his brain; the system decoded his attempted speech with 97.5% accuracy in self-paced conversation over more than 248 hours across 8.4 months, at about 31.6 words per minute, and spoke the words in a voice designed to sound like his own before ALS.⁠³⁴ That is one participant, in a research trial.⁠³⁴

What is voice banking, and when should you do it?

Voice banking and message banking save your own voice for later use in a communication device or a text-to-speech app.⁠^1,3 There are three ways to do it:

When: as soon as possible, while your voice is strongest. The ALS Association recommends starting both as soon as possible, before or at the first sign of speech change, and ASHA’s guidance for progressive disease is to start AAC and voice banking as early as possible after diagnosis.⁠^3,6,29 Messages worth banking are the phrases and expressions that mean most to you and those you love, and a line for hospital staff, such as: “I use this device to speak but my thinking and hearing are fine. Please speak directly to me.”⁠³

Cost and equipment: most companies require a computer, an internet connection and a good headset.⁠⁶ Team Gleason covers the cost of the voice banking software from the companies it works with for anyone in the US with a diagnosis of ALS, and on an iPhone, Personal Voice is a free feature that creates a synthesized voice that sounds like you; this is the ALS Association’s information as of March 2026.⁠⁶

Help: the SLP can recommend programs and apps and install the banked messages or the synthetic voice in the device or app, and the European guideline suggests a specialized AAC hub for complex equipment, including message and voice banking.⁠^3,6,25

How does ALS affect swallowing?

A safe swallow needs 26 pairs of muscles working together, and as ALS weakens the bulbar muscles, swallowing (dysphagia) becomes harder and less safe.⁠^4,20 Most people with ALS eventually have swallowing difficulty, whether or not it started in the bulbar muscles.⁠² The consequences are choking, food or drink entering the airway (aspiration), lung infections such as aspiration pneumonia, weight loss and dehydration.⁠^4,35

Report these to the ALS care team, because they can mean the swallow is unsafe: coughing while eating or drinking, trouble chewing or swallowing, or trouble keeping food and liquid in the mouth.⁠⁴ Tiring meals matter too: weak bulbar muscles make chewing and swallowing more tiring, which raises the risk of weight loss.⁠⁴

How is swallowing tested in ALS?

A speech-language pathologist is the specialist who assesses swallowing, and NICE asks for a clinical swallowing assessment whenever swallowing problems are suspected.⁠^4,9 An X-ray video of swallowing (videofluoroscopy) can show which food textures a person handles safely, but it is not required to establish whether dysphagia is present.⁠³⁵ At diagnosis and at each clinic review, NICE asks the team to check weight, diet, food and fluid intake, hydration, oral health and swallowing.⁠⁹

What foods and swallowing techniques help with ALS?

The SLP decides which of these suit you; the ALS Association lists:

• Smaller bites and sips, and two or three swallows for each mouthful to clear the throat.⁠²⁰
• Head position: for some people tucking the chin down helps keep food out of the windpipe, for others tilting the head back works better; the SLP can recommend which.⁠^4,20
• Thicker liquids, which move more slowly and give the muscles more time to close the airway.⁠^4,20
• Softer, moister food: sauce or gravy on dry food, foods of a single consistency such as oatmeal or thick cream soups, and pureed or naturally soft foods such as mashed potatoes, canned fruit or pudding when chewing gets too hard.⁠^4,20
• Small, frequent meals planned with a dietitian, who can also say which foods to avoid.⁠¹
• Eat first, talk later: if eating and talking together become hard, eat and drink before a social gathering.⁠³

Weight matters: weight loss, malnutrition and dehydration may speed muscle weakness, add to breathing problems and shorten life, so teams look for every cause of reduced eating, from swallowing and breathing problems to depression, loss of appetite and weak arms.⁠^25,36 Medicines can be hard to swallow too; riluzole comes as a thickened liquid, and the oral form of edaravone can be taken by mouth or through a feeding tube.⁠¹

What helps with drooling and saliva in ALS?

People with ALS usually drool not because they make more saliva but because a weak swallow lets it pool: the body makes 0.5 to 1.5 liters a day.⁠²⁴ What helps, in the order guidelines suggest:

• First, advice: on swallowing, diet, posture, positioning, mouth care and suction; sugary or acidic drinks, milk and juice can stimulate saliva, and a suction machine removes excess saliva so it does not have to be swallowed.⁠^9,20,25
• Medicines: NICE suggests a trial of an antimuscarinic medicine first; NINDS names amitriptyline, glycopyrrolate and atropine.⁠^9,15
• Botulinum toxin injections into the salivary glands when medicines fail or are not tolerated; the AAN rates botulinum toxin B Level B and low-dose radiation to the glands Level C.⁠^9,11,24,25

The evidence is thin: a 2022 Cochrane review found four randomized trials with 110 people with motor neuron disease, giving low- to moderate-certainty evidence for botulinum toxin B and moderate-certainty evidence for dextromethorphan with quinidine; the evidence on radiotherapy and scopolamine patches was too uncertain to draw conclusions.⁠²⁴

When should someone with ALS get a feeding tube?

The time to talk about it is early, well before it is needed. NICE asks teams to discuss a feeding tube (gastrostomy) at an early stage and at regular intervals, weighing the person’s preferences, swallowing, weight loss, breathing, the effort of eating and drinking, and the risk of choking.⁠⁹ You do not have to wait for the care team to raise it.⁠¹⁰

How it is placed. A percutaneous endoscopic gastrostomy (PEG), or a radiologically inserted gastrostomy (RIG), puts a flexible tube through a small opening in the abdominal wall into the stomach; the procedure is typically done as an outpatient, with anesthesia.⁠^10,35,36

Timing:

• Weight and breathing set the best timing.⁠¹⁰
• Earlier carries less risk. NICE lists the risks of a late gastrostomy: very low body weight, breathing complications, dehydration, and a higher risk of death and procedural complications.⁠⁹
• While breathing is adequate: the AAN’s 2009 parameter, retired in February 2026, said placement when the forced vital capacity is above 50% of predicted possibly carries less risk, based on one Class III study, and found the data insufficient to set a specific time (Level U).⁠^35,37
• If breathing is weak, the European guideline advises placing the tube with the person already established on noninvasive ventilation, and tube feeding through the nose while waiting for a gastrostomy.⁠²⁵
• Without delay once referred.⁠⁹

Some people do not want a feeding tube, and that is their decision to make, as it is when to start using one.⁠^9,10 The ALS Association suggests including loved ones in the conversation.⁠¹⁰ A tube does not have to end eating: unless you have been told your swallow is unsafe, you can keep eating for enjoyment and use the tube to top up nutrition, fluids and medicines, and once a person can no longer eat even with help, it can reduce the risk of choking and pneumonia.⁠^1,10,35

Does a feeding tube help people with ALS live longer?

Possibly; the evidence is not from trials. The 2023 Cochrane review found no randomized trials comparing tube feeding with eating by mouth alone, and says such trials are very unlikely for ethical reasons.⁠³⁶ Of the observational studies, two prospective and five retrospective studies found longer survival with a PEG, while four prospective, ten retrospective and two post hoc studies found no survival advantage; the certainty of the evidence is poor, and there is no trial evidence on the best timing.⁠³⁶ The AAN’s retired 2009 parameter said a PEG should be considered to stabilize weight and prolong survival (Level B), with insufficient data on quality of life (Level U).⁠³⁵

How does ALS affect breathing?

As the breathing muscles weaken, breathing fails, and respiratory failure is the most common cause of death in ALS.⁠^1,38 Weak breathing muscles affect speech too.⁠³ Signs to report:

• Shortness of breath during activity, or trouble breathing when lying down.⁠^1,39
• Vivid dreams, morning headaches or daytime drowsiness.⁠³⁹
• Poor concentration or memory.⁠⁹

NICE suggests breathing tests every 2 to 3 months, more or less often as needed.⁠⁹ Coughing can be helped with manual assisted cough and mechanical cough-assist devices; the AAN’s retired 2009 parameter rated mechanical insufflation-exsufflation Level C for clearing secretions when peak cough flow is low, especially during a chest infection.⁠^1,9,35 Oxygen should be prescribed only by a provider who knows both lung disease and ALS, with ventilation support readily available.⁠³⁹

What is noninvasive ventilation, and does it help?

Noninvasive ventilation (NIV) supports breathing through a mask over the nose, mouth or both, or a mouthpiece; at first it may be needed only at night, and later during the day or full time.⁠^1,39 NICE says to offer NIV for breathing weakness, and to explain that it can ease symptoms and prolong life but does not stop the disease, and that it can be stopped at any time; the European guideline says it should be offered to everyone with ALS who has signs of breathing weakness.⁠^9,25

In the one randomized trial in the Cochrane review, 41 people, median survival was 48 days longer with NIV (219 days against 171 with standard care), and survival and quality of life improved in people with better bulbar function but not in those with severe bulbar weakness.⁠³⁸ The European guideline still says every effort must be made to allow NIV whatever the bulbar function.⁠²⁵ NICE asks the ventilation team to understand possible conflicts with other equipment, such as eye-gaze systems.⁠⁹

Invasive ventilation supports breathing through a tube in an opening made in the windpipe (a tracheostomy).⁠³⁹ People who choose it use AAC for longer overall, often by eye gaze.⁠⁵ Tell your providers and family your wishes about breathing support, so that decisions are not made in an emergency.⁠^25,39

What treatments are there for ALS?

No treatment reverses the damage to motor neurons or cures ALS, but some treatments may slow it, improve quality of life and extend survival; the effect of the disease-modifying medicines is modest.⁠¹ The cornerstone of care is multidisciplinary: nutrition, breathing support and symptom management.⁠² The medicines, with their status in FDA’s records:

The common side effects of riluzole are nausea, diarrhea, fatigue, dizziness and liver problems; of tofersen, pain, fatigue, joint and muscle pain and raised white cells in the spinal fluid.⁠^2,23 Europe’s 2024 guideline differs from the US approvals on one point: it recommends lifelong riluzole for everyone with ALS from diagnosis and tofersen first for SOD1-ALS, but does not recommend edaravone outside a clinical trial.⁠²⁵ A treatment plan also usually includes rehabilitation, tailored to the person: physical, occupational and speech therapy.⁠¹

Does care at a multidisciplinary ALS clinic help?

The AAN says referral to a specialized multidisciplinary clinic should be considered to improve health care delivery and prolong survival (Level B), and may be considered to improve quality of life (Level C); it reaffirmed this guidance on February 21, 2026.⁠^11,12 In the evidence behind it, one study in Ireland found survival 7.5 months longer for people attending such clinics, another found no difference, and clinic patients received more aids and appliances (93.1% against 81.3%) and had higher quality of life.⁠¹¹

The team usually includes a neurologist, physical, occupational and respiratory therapists, a nurse, a dietitian, a speech-language pathologist, a social worker and a mental health professional, all seen in a single visit.⁠^11,45 NICE and the European guideline both ask for coordinated care from a specialist multidisciplinary team.⁠^9,25

Which guidelines do ALS care teams follow?

The American Academy of Neurology’s 2009 practice parameter had two parts: part 1, on drugs, nutrition and breathing, was retired on February 21, 2026, and part 2, on multidisciplinary care, symptoms and thinking changes, was reaffirmed the same day.⁠^12,37 The European Academy of Neurology published its guideline in 2024.⁠²⁵ NICE’s guideline for England (NG42) was published in 2016 and updated in 2019.⁠⁹

What does speech and swallowing care look like at each stage of ALS?

Care runs through the ALS clinic. NICE suggests coordinated team assessments usually every 2 to 3 months, the European guideline every 3 to 6 months depending on progression, and both say to see the person sooner when symptoms change.⁠^9,25 At each review, the team checks speech and communication, saliva, weight, diet and swallowing, and tracks function over time on the ALS Functional Rating Scale-Revised (ALSFRS-R).⁠^9,25 The SLP’s part, stage by stage:

Low use of AAC often goes with minimal training or follow-up, so the training is part of the treatment.⁠⁵ Goals are framed around participation: in ASHA’s worked example of an adult with ALS, the goal is to use speech attempts and other means to take part in family activities and to talk about medical care with familiar and unfamiliar listeners, measured with tools assessed with tools such as the Frenchay Dysarthria Assessment and the Quality of Communication Life Scale.⁠⁴⁶ The ALS Association’s communication goals include being able to alert someone in another room in an emergency, to use a low-tech system, to produce voiced messages, and to reach people outside the home by email, text or phone.⁠³

Visits do not all have to be in person: VA patients can ask for some ALS care by telehealth, the European guideline supports remote care for people who cannot get to a center, and Medicare covers telehealth at home through December 31, 2027.⁠^18,25,47

How does outpatient speech therapy work on Medicare?

How can people with ALS stay safe as speech and swallowing change?

The two main risks are choking and aspiration, food, drink or saliva going into the lungs.⁠^4,15 The SLP’s strategies, such as eating slowly and thickening liquids, aim to make swallowing safer, and once a person can no longer eat even with help, a feeding tube can reduce the risk of choking and pneumonia.⁠^1,4

A plan for emergencies matters most when speech is weak. The ALS Association advises:

• Alerting: a way to call for help when you are home alone and to signal someone in another room; the SLP can help set one up.⁠³
• Registering with local emergency responders, and telling them about mobility needs, medical equipment and how you communicate.⁠⁵³
• An emergency kit with food, water, feeding-tube supplies and formula, communication tools and adaptive equipment, and a list of medicines, doses and medical contacts.⁠⁵³
• Power: asking the utility about priority restoration for people who use medical equipment.⁠⁵³
• A low-tech backup, such as a paper board, for when a device fails or is out of reach.⁠³

In the hospital, make sure staff know how you communicate: a banked or device message that your thinking and hearing are fine, and that they should speak directly to you, helps.⁠³ Any sudden change in speech is a reason to call 9-1-1: ALS changes gradually, and a stroke strikes suddenly.⁠^19,21

How can families and caregivers help someone with ALS communicate?

Families do much of the work: in one study, 96% of the people who set up and supported AAC for someone with ALS were family members, most without a technical background.⁠⁵ Learning new ways to communicate takes practice, and caregivers need time to learn too; NICE asks teams to train families and carers in the equipment and strategies, not only the person with ALS.⁠^9,33 What helps in conversation:

• Give full attention. Turn off background noise and watch the speaker’s face for nonverbal cues.⁠²⁰
• Check your own hearing, and use a hearing aid or amplifier if you need one.⁠²⁰
• Repeat back the part you understood, rather than saying “What?”, so the speaker can fill in the rest.⁠^3,20
• Be honest when you have not understood. Some listeners pretend to understand when they have not.⁠²⁰
• If thinking has changed, simplify: short phrases, yes and no questions and a slower pace, and double-check answers, because yes and no can become less reliable.⁠²⁶
• Learn the system: the aim is for the person and their partners to set up, customize and use every part of it independently.⁠³

At meals, a speech therapist, dietitian or respiratory therapist can show you how to make swallowing safer and breathing during meals easier, and NICE includes advice on seating and posture while eating.⁠^9,39 Caregivers need support too: the ALS Association offers support groups, care navigation, a free course for ALS caregivers and a twice-monthly webinar series, and Medicare’s telehealth coverage includes caregiver training services.⁠^47,54 It is important for caregivers to look after themselves and to seek support when they need it.⁠¹

What benefits and insurance cover ALS care?

Several federal programs have rules written for ALS.⁠^13,14

How do Social Security disability and Medicare work for ALS?

• No waiting period for benefits: since July 23, 2020, the usual 5-month waiting period for Social Security disability benefits is waived for people with ALS.⁠¹³
• Medicare with the first benefit: since July 1, 2001, the 24-month wait for Medicare is waived, and Medicare starts on the same date as the disability benefits.⁠¹³
• Fast decisions: ALS claims are priority cases under Social Security’s Quick Disability Determination and Compassionate Allowances processes.⁠¹³

Does Medicare cover speech therapy for ALS?

Yes. Medicare Part B covers medically necessary outpatient speech-language pathology, including swallowing therapy and therapy to maintain current function or slow decline, with no yearly limit on what it pays.⁠⁵¹ Improvement is not required. Medicare covers skilled therapy to maintain function or to prevent or slow decline, not only to restore it, provided the other coverage rules are met; coverage turns on the need for skilled care, not on the potential to improve.⁠⁵²

Medicare has no cap on outpatient therapy, but once physical therapy and speech-language pathology together pass $2,480 in a year (the 2026 amount), each claim must confirm that the therapy is medically necessary, and claims past $3,000 can be picked for review.⁠⁵⁶ Communication devices are covered separately, as durable medical equipment (see speech-generating devices).⁠⁷

Medicaid, Marketplace plans and the VA. For adults, speech, hearing and language services are an optional Medicaid benefit, so coverage depends on your state; home health is a mandatory benefit.⁠⁵⁷ Every Marketplace plan covers rehabilitative and habilitative services and devices, though the specific services vary with each state’s requirements.⁠⁵⁸ For veterans, audiology and speech pathology are standard medical benefits for every enrolled veteran.⁠⁵⁹ With any private plan, ask about visit limits, whether a referral is needed, and whether the SLP is in network.

At work, the Job Accommodation Network lists an AAC device, speech-generating devices with telephone access and voice amplification among the accommodations for speech impairments.⁠⁶⁰

What benefits do veterans with ALS get?

Under federal regulation, ALS that develops at any time after discharge is service-connected for a veteran with 90 days or more of continuous active service.⁠¹⁴ The VA describes ALS as a 100% service-connected condition for veterans who served more than 90 days and were honorably discharged, and every VA medical center has an ALS coordinator; ask to be connected.⁠¹⁸ Audiology and speech pathology are standard medical benefits for every enrolled veteran.⁠⁵⁹

What is the life expectancy with ALS?

It varies widely. The figures depend on where the count starts:

• From the first symptoms: most people with ALS die of respiratory failure, usually within 3 to 5 years, but about 1 in 10 survive 10 years or more (NINDS); the median is about 3 years from onset in the 2020 review and the European guideline.⁠^1,2,25
• From diagnosis: average survival is about 3 years; about 20% live 5 years or more, 10% live 10 years or more and 5% live 20 years or longer.⁠³⁰

NICE lists the factors present at diagnosis that are linked to shorter survival: speech and swallowing problems (a bulbar presentation), weight loss, poor breathing function, older age, a lower score on the ALS Functional Rating Scale and a shorter time from first symptoms to diagnosis; the 2020 review adds a fast decline in function.⁠^2,9 People with thinking or behavior changes live shorter lives on average, and people with FTD-ALS typically decline over two to three years.⁠^22,26 There is no single timeline, and many people have long periods with little change.⁠³⁰ Multidisciplinary clinic care and NIV are both linked to longer survival.⁠^11,38

Which conditions are related to ALS or can look like it?

Several other motor neuron diseases, and some treatable conditions, can look like ALS, which is one reason diagnosis takes time.⁠^15,19

When ALS starts with weakness in the arms, spinal muscular atrophy, Kennedy’s disease, multifocal motor neuropathy and monomelic amyotrophy also have to be told apart from it.⁠² About 15% of people who first present with frontotemporal dementia later develop motor neuron degeneration.⁠¹¹

Other speech, language and swallowing problems in adults have their own causes and treatment: aphasia after a stroke, cognitive-communication disorders, voice disorders, stuttering in adults, and the changes in speech and swallowing that come with Parkinson’s disease and MS.

What are common myths about ALS?

• Myth: ALS never affects the mind. Doctors used to think so. Up to half of people with ALS have some change in thinking or behavior, and 10% to 15% develop frontotemporal dementia; many others remain mentally sharp throughout.⁠^2,19,26
• Myth: a communication device means giving up on speech. AAC adds to speech while it lasts and replaces it only when speech is no longer functional; it is a tool for days when the voice is tired, too.⁠^31,33
• Myth: exercises can strengthen the speech muscles. Not in ALS: strengthening exercises have not been shown to improve ALS speech, and rest helps more.⁠³
• Myth: a feeding tube means no more eating. Unless the swallow is unsafe, people keep eating for enjoyment and use the tube to top up.⁠¹⁰
• Myth: sudden crying means depression. Often it is pseudobulbar affect, a reflex problem, which does not necessarily mean sadness and can be treated.⁠^26,27
• Myth: nothing can be done. There is no cure, but treatments can slow the disease, improve quality of life and extend survival, and clinic care, breathing support and nutrition are linked to longer survival.⁠^1,11,38

How do you find an ALS clinic or a speech therapist for ALS?

Start with an ALS clinic, where the SLP works alongside the rest of the team:

• The ALS Association lists its Certified Treatment Centers of Excellence and Recognized Treatment Centers, with a locator map that also shows nationwide telemedicine providers.⁠⁴⁵
• The VA: every VA medical center has an ALS coordinator; ask to be connected.⁠¹⁸
• CDC’s National ALS Registry links to an interactive map of ALS clinics, and people with ALS can add their information to the registry and sign up to receive more information.⁠^1,17

For communication devices, look for an SLP with expertise in AAC; the ALS Association calls them communication specialists.⁠³³ ASHA offers board certification in AAC and in swallowing disorders, though specialty certification is not required to practice.⁠⁶¹ Every SLP needs a state license. ASHA’s Certificate of Clinical Competence (CCC-SLP) is a national credential whose holders have met standards that typically go beyond state licensure, and anyone can check an SLP’s certification on ASHA’s site.⁠^62,63

The DrSensory speech therapy directory lists practices by state and city. On a city page, set Care for to Adults and Specialty to AAC / communication devices. A specialty tag comes from the practice’s own description of its services, not from a credential, so ask whether the SLP sees people with ALS and evaluates for speech-generating devices when you call.

Between clinic visits, therapy can also happen by telehealth, which Medicare covers at home through December 31, 2027, or at home through Medicare home health for people who are homebound.⁠^47,55 In-home therapy explains how home visits work.

Sources

1. National Institute of Neurological Disorders and Stroke. Amyotrophic Lateral Sclerosis (ALS) (last reviewed March 13, 2026). ALS, “formerly known as Lou Gehrig’s disease, is a neurological disorder that affects motor neurons”; “Motor neurons are the nerve cells in the brain and spinal cord that control voluntary muscle movement and breathing”. Early symptoms include “Slurred and nasal speech” and “Difficulty chewing or swallowing”; later problems include “Drooling (sialorrhea)”, “Speaking or forming words (dysarthria)” and “Unintended crying, laughing, or other emotional displays (pseudobulbar symptoms)”; “Because they usually remain able to reason, remember, and understand, they are aware of their progressive loss of function”, though “Some also develop a form of dementia known as FTD-ALS”. Most die of respiratory failure, “usually within three to five years of symptoms first appearing. But about 1 in 10 people survive for 10 years or more”. Symptoms “most commonly develop between the ages of 55 and 75”; veterans are “about one and a half to two times more likely to develop ALS”; “About 10% of all ALS cases are familial”, C9orf72 causing “about 25% to 40% of all familial cases” and SOD1 “another 12% to 20% of familial cases”. “There is no single test that can definitely diagnose ALS”: the workup is a physical and neurologic exam plus tests that rule out other disorders (EMG with nerve conduction studies, MRI, blood and urine tests, a spinal tap, a muscle biopsy). Riluzole “may extend survival by a few months”; edaravone “has been shown to slow functional decline in some people with ALS”; for tofersen, “While the benefits of this drug are still under study”; “the manufacturer of Relyvrio removed the drug from the market in 2024”. “Speech therapists can help people with ALS learn strategies to speak louder and more clearly”; “People with ALS sometimes use voice banking, a process that stores their own voice for future use in computer-based speech synthesizers”; on brain–computer interfaces, “Researchers are developing more efficient, mobile BCIs for people with severe paralysis or visual impairments”. A feeding tube “can reduce the person’s risk of choking and pneumonia”; “At first, NIV may only be necessary at night, but people may eventually need it full time”. Checked October 8, 2026.
2. Masrori P, Van Damme P. Amyotrophic lateral sclerosis: a clinical review. European Journal of Neurology. 2020;27(10):1918–1929. doi:10.1111/ene.14393 (PMID 32526057). Clinical review: “In about 25%–30% of cases there is a bulbar onset of the disease, presenting with dysarthria, dysphagia, dysphonia, or more rarely with masseter weakness”; onset is in the limbs (“spinal ALS, roughly in two-thirds of patients”) or “in bulbar muscles (bulbar ALS, in about one-third of patients)”. “Bulbar UMN dysfunction results in spastic dysarthria, which is characterized by slow, laboured and distorted speech”; “Bulbar LMN dysfunction is characterized by tongue wasting and fasciculation, accompanied by flaccid dysarthria and dysphagia”; “Whilst only approximately 30% of patients present with bulbar symptoms, the majority of ALS cases eventually suffer from speech and swallowing difficulties”. Bulbar ALS has “a median survival of 2 years from disease onset”, ALS overall “a median survival of about 3 years after symptom onset”. “In 10%–15% of cases, an additional diagnosis of frontotemporal dementia (FTD) can be made”, “whilst 35%–40% of patients will have mild behavioural and/or cognitive changes”. Mean age at onset is “58–63 years for sALS and 40–60 years for familial ALS (fALS)”; C9orf72 is “responsible for 30%–50% of fALS and for 7%–10% of sALS”; the diagnostic delay “is unfortunately still often up to a year after disease onset”; “PLS represents 3%–5% of all motor neuron diseases”; “Muscle-specific tyrosine kinase (MuSK) myasthenia can be accompanied by tongue weakness and atrophy and be mistaken for bulbar ALS”.
3. The ALS Association. FYI: Suggestions and information about speech changes & augmentative alternative communication (AAC) (fact sheet, June 10, 2020). “This causes dysarthria – the term used to describe slow, effortful, slurred speech, and breathy or hoarse voice.” “Speaking may make you tired, especially later in the day.” “Therapeutic oral exercises designed to strengthen muscles for people with other forms of dysarthria have not been demonstrated to improve speech for people with ALS”; “Oral motor exercises are not recommended for speech changes resulting from ALS”. Advice includes to “begin Message and Voice Banking so that your own voice can be used in a speech generating device (SGD) or text-to-speech (TTS) app if ever required”; to teach partners “to repeat back any part of a sentence that they DID understand”; “Alert your partner if you are shifting topics and name the new topic.” “a removable, palatal lift appliance” for a nasal quality; “For those with very weak or no arm movement, alternative access equipment can enable a person to operate an SGD or tablet with head, foot or eye movement.” “Low-tech communication systems, like paper communication boards, are an essential backup to your high-tech speech generating device.” “A speech therapist will have other strategies to help with challenges like phone communication, emergency alerting systems for times when you are home alone, and tools for signaling to others within the home if you have a need.” Checked October 7, 2026.
4. The ALS Association. 10 Things to Know: Swallowing Changes with ALS (PDF, June 27, 2023). “A safe swallow requires 26 pairs of muscles to work properly”; “A Speech Language Pathologist (SLP) is the specialist who conducts the assessments”; “Your SLP can determine if strategies such as eating slowly, thickening your liquids, or tucking your chin to your chest might improve your ability to swallow”; “Thicker liquids move more slowly when you swallow, giving your muscles more time to close the airway”. Red flags: “If you experience coughing while eating or drinking, have trouble chewing or swallowing, or have trouble keeping food and liquid in your mouth, report this to your ALS care team”. Risks: “Weakening bulbar muscles can make chewing and swallowing more tiring, increasing your risk for weight loss”, and food or drink in the airway can cause “lung infections such as aspiration pneumonia”; a feeding tube can be placed to add to nutrition and hydration by mouth. Checked October 8, 2026.
5. Beukelman D, Fager S, Nordness A. Communication support for people with ALS. Neurology Research International. 2011;2011:714693. doi:10.1155/2011/714693 (PMID 21603029). Review of AAC research in ALS, much of it from the Nebraska ALS Database: “At some point, 80 to 95% of people with ALS are unable to meet their daily communication needs using natural speech”; “once intelligibility begins to decrease, speech performance often deteriorates so rapidly that there is little time to implement an appropriate augmentative and alternative communication (AAC) intervention”; early changes “may be limited to a reduction in speaking rate, a change in phonatory (voice) quality, or imprecise articulation”. Researchers who followed 158 people every 3 months “recommend that ALS patients be referred for AAC assessment when their speaking rates reach 125 words per minute on the Speech Intelligibility Test (Sentence Subtest)” (adults without disability average 190). “96% of people with ALS for whom speaking rate was monitored and AAC assessment was recommended in a timely manner accepted and used AAC”; AAC was used for “an average of 24.9 months for those with bulbar ALS and 31.1 months for those with spinal ALS”; “eye-tracking is often the least fatiguing movement for AAC access”; “Ninety-six percent of the AAC facilitators were family members, most with nontechnical backgrounds”.
6. The ALS Association. FYI: Voice Preservation (fact sheet, April 30, 2025). “Voice Banking creates a custom synthesized voice for you based on samples of your speech”; “Message Banking is the process of recording meaningful phrases and expressions” that can be played back in the person’s own voice; “Voice Cloning is an AI technology that creates a highly accurate digital replica of a person’s voice”. “We recommend starting voice and message banking as soon as possible, while your voice is the strongest”. Team Gleason “will cover the cost of the voice banking software chosen”, and “Anyone living in the USA that has been officially diagnosed with ALS will be eligible for Team Gleason funding”; through Bridging Voice, “ALS and MND patients will be able to apply for a free voice cloning license”; on an iPhone, “Personal Voice is a free feature that creates a synthesized voice that sounds like you”. “This information was current as of March 2026”. Checked October 8, 2026.
7. Centers for Medicare & Medicaid Services. National coverage determination: speech generating devices (50.1). “Speech generating devices are considered to fall within the durable medical equipment (DME) benefit category”; “They are covered for patients who suffer from a severe speech impairment and have a medical condition that warrants the use of a device”; covered forms include “software that allows a computer or other electronic device to generate audible/verbal speech”; “Computers and tablets are generally not considered DME because they are useful in the absence of an illness or injury”; “Internet or phone services or any modification to a patient’s home to allow use of the speech generating device are not covered by Medicare.” Checked October 7, 2026.
8. Centers for Medicare & Medicaid Services. Local coverage determination: Speech Generating Devices (SGD) (L33739) (Medicare Coverage Database; DME MAC policy, revision effective for services on or after October 1, 2024). A device is covered only when seven criteria are met, the first being: “Prior to the delivery of the SGD, the beneficiary has had a formal evaluation of their cognitive and communication abilities by a speech-language pathologist (SLP)”, covering among other things the “anticipated course of the impairment” and “Demonstration that the beneficiary possesses a treatment plan that includes a training schedule for the selected device”; also “The beneficiary’s speaking needs cannot be met using natural communication methods” and “The SLP performing the beneficiary evaluation may not be an employee of or have a financial relationship with the supplier of the SGD”. Accessories: “Alternative input devices are covered when a beneficiary is unable to use standard input devices”; “Eye tracking, gaze interaction and electromyographic sensor accessories for speech generating devices are covered when furnished to individuals with a demonstrated medical need for such accessories” (the revision history records “Added: Gleason Act language for eye gaze accessories”). Checked October 8, 2026.
9. National Institute for Health and Care Excellence. Motor neurone disease: assessment and management (NG42): Recommendations. “Published: 24 February 2016”, “Last updated: 23 July 2019”; the overview says NICE last reviewed it on November 27, 2024 and found no new evidence that affects the recommendations. Bulbar presentation is “speech or swallowing problems, or tongue fasciculations (this is known as bulbar presentation)”, and “Speech and swallowing problems (bulbar presentation)” are listed among factors associated with shorter survival. The multidisciplinary team should “carry out regular, coordinated assessments at the multidisciplinary team clinic (usually every 2 to 3 months) to assess people’s symptoms and needs”, and the core team includes a “Speech and language therapist”. Communication: “Ensure that the assessment and review is carried out by a speech and language therapist without delay”; “Provide AAC equipment that meets the needs of the person without delay to maximise participation in activities of daily living and maintain quality of life”, using “both low-level technologies, for example, alphabet, word or picture boards and high-level technologies, for example, PC or tablet-based voice output communication aids”; refer to a specialized AAC hub “if complex high technology AAC equipment (for example, eye gaze access) is needed or is likely to be needed”; “Provide ongoing support and training for the person with MND, and their family members and/or carers (as appropriate), in using AAC equipment and other communication strategies”. Swallowing and nutrition: “Arrange for a clinical swallowing assessment if swallowing problems are suspected”; “Discuss gastrostomy at an early stage, and at regular intervals as MND progresses, taking into account the person’s preferences and issues, such as ability to swallow, weight loss, respiratory function, effort of feeding and drinking and risk of choking”; “Explain the benefits of early placement of a gastrostomy, and the possible risks of a late gastrostomy”. Saliva: “Consider a trial of an antimuscarinic medicine as a first-line treatment for sialorrhoea in people with MND”. Breathing: “Offer non-invasive ventilation as treatment for people with respiratory impairment”, which “can improve symptoms associated with respiratory impairment and can be life prolonging, but does not stop progression of the underlying disease”; check the person “understands possible problems with compatibility with other equipment, for example, eye gaze access systems”. NG42 makes no recommendation on voice or message banking. Checked October 8, 2026.
10. The ALS Association. 10 Things to Know: Exploring the Option of a Feeding Tube (PDF, April 6, 2023). “You don’t have to wait for your care team to bring up feeding tubes. You can start the conversation any time”; “Weight loss and breathing ability will impact the best timing to have a feeding tube placed”; “The procedure is typically done out-patient, and anesthesia is required”; “A feeding tube can make taking medications and additional fluids easier”; “Unless you have been advised that your swallow is unsafe, you can continue to eat foods for enjoyment”, using the feeding tube to add to your nutrition; “A feeding tube should not interfere with the activities you enjoy”. Checked October 8, 2026.
11. Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73(15):1227–1233. doi:10.1212/WNL.0b013e3181bc01a4 (PMID 19822873). Reaffirmed by the AAN on February 21, 2026. “Specialized multidisciplinary clinic referral should be considered for patients with ALS to optimize health care delivery (Level B) and prolong survival (Level B), and may be considered to enhance quality of life (Level C)”; “In patients with ALS who have medically refractory sialorrhea, BTxB should be considered (Level B) and low-dose radiation therapy to the salivary glands may be considered (Level C)”; “If approved by the FDA, and if side effects are acceptable, DM/Q should be considered for symptoms of pseudobulbar affect in patients with ALS (Level B)”; “Screening for cognitive and behavioral impairment should be considered in patients with ALS (Level B)”. On communication, “No controlled studies examined communication in ALS”, so “There are insufficient data to support or refute treatment to optimize communication in ALS (Level U)”. Pseudobulbar affect “affects 20%–50% of patients with ALS”; estimates of cognitive impairment ran from 10% to 75%, and “A population-based sample produced an estimate of 28% (Class II)”; dementia from 15% to 41%.
12. American Academy of Neurology. Guidelines: Neuromuscular. Lists “Update: The Care of the Patient with Amyotrophic Lateral Sclerosis: Multidisciplinary Care, Symptom Management, and Cognitive/Behavioral Impairment Published October 2009” (Miller 2009, part 2) as current: “Reaffirmed on February 21, 2026”; “Endorsed by the American Association of Neuromuscular and Electrodiagnostic Medicine”. Checked October 8, 2026.
13. Social Security Administration. POMS DI 11036.001: Amyotrophic Lateral Sclerosis – 5-Month and 24-Month Waiting Periods Waived – Field Office (Program Operations Manual System, effective May 4, 2022). “Since July 1, 2001, the 24-month waiting period for Medicare coverage is waived for disabled claimants with ALS”; “For an individual diagnosed with ALS, the date of Medicare entitlement is the date of entitlement to disability insurance benefits (DIB)”; “Since July 23, 2020, the 5-month DIB entitlement waiting periods is waived for disabled claimants with ALS”. “An allegation or diagnosis of ALS meets the TERI case criteria” (terminal illness), and “ALS cases are also priority cases under the Quick Disability Determination (QDD) and Compassionate Allowances (CAL) processes”; “This policy does not apply to claims involving non-ALS anterior horn cell diseases”. Checked October 8, 2026.
14. Code of Federal Regulations, 38 CFR §3.318, Presumptive service connection for amyotrophic lateral sclerosis. Under it, “the development of amyotrophic lateral sclerosis manifested at any time after discharge or release from active military, naval, air, or space service is sufficient to establish service connection for that disease”; among the exceptions, it does not apply “If the veteran did not have active, continuous service of 90 days or more”. Text as published in the eCFR (title 38 up to date as of October 6, 2026). Checked October 8, 2026.
15. National Institute of Neurological Disorders and Stroke. Motor Neuron Diseases (last reviewed March 13, 2026). “Messages or signals from nerve cells in the brain (upper motor neurons) are typically transmitted to nerve cells in the brain stem and spinal cord (lower motor neurons) and then to muscles throughout the body”; ALS “can affect the upper and/or lower motor neurons”. Progressive bulbar palsy: “PBP symptoms worsen over time and include trouble chewing, speaking, and swallowing”; “Some symptoms of stroke and myasthenia gravis are similar to those of progressive bulbar palsy (e.g. slurring of the speech and choking) and must be ruled out prior to diagnosis”; “Many ALS experts consider PBP to be a form of ALS”. Primary lateral sclerosis “affects only the upper motor neurons” and “progresses slowly over years or even decades”. “Kennedy’s disease is an inherited lower motor neuron disorder that affects men”, also “known as spinal and bulbar muscular atrophy (SBMA)”. Progressive muscular atrophy “is an uncommon subtype of ALS marked by slow but progressive damage to the lower motor neurons”. “MRI (magnetic resonance imaging) in MND is typically normal” but helps exclude look-alikes; “there are genetic tests for SMA, Kennedy’s disease, and some genetic causes of ALS”. “Excessive saliva also can be treated with medications such as amitriptyline, glycopyrrolate, and atropine”; “Some individuals may benefit from speech therapy to improve speech, chewing, and swallowing”. Checked October 8, 2026.
16. Mehta P, Raymond J, Nair T, Han M, Punjani R, Larson T, et al. Incidence of ALS in all 50 states in the United States, data from the National ALS Registry, 2012-2019. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2025;26(7-8):758–766. doi:10.1080/21678421.2025.2506448 (PMID 40450587). National ALS Registry analysis by the Agency for Toxic Substances and Disease Registry: “ALS is not a notifiable disease in the United States”, so cases come from Medicare and VA databases and a web portal; “State-level age-adjusted overall incidence rates for 2012 to 2019 ranged from 0.65 per 100,000 persons (Alaska) to 2.25 per 100,000 persons (Vermont), with an overall incidence of 1.44 per 100,000 persons in the United States”; “New England and the upper Midwest regions had higher incidence rates than national rates”.
17. Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention. National ALS Registry Dashboard (last reviewed June 25, 2026). “Projected living persons/cases (≥18 years) with ALS in the United States in 2026”: “Total 34,720”. Estimated new adult cases were 5,695 in 2014, 6,045 in 2015 and 4,861 in 2016. “By the Numbers”: “New U.S. Prevalence (CY 2025) 10.1 persons per 100,000 U.S. population”; “U.S. Incidence (CY 2019) 1.44 persons per 100,000 U.S. population”. The footnotes say “Calendar year 2018 is the most current prevalence data available at this time” and “Calendar years 2014 – 2016 are the most current incidence data available at this time”, and the page adds “Statistics current as of 9/1/2023”, so the 2025 and 2026 figures are projections. Checked October 8, 2026.
18. U.S. Department of Veterans Affairs, Veterans Health Administration. VA ALS System of Care (last updated August 14, 2026). “About 30,000 people in the U.S. live with ALS. About 5,000-6,000 people are diagnosed each year”; “We now know ALS can affect other functions like thinking, behavior, or bowel or bladder function too”. “Studies have shown that U.S. Veterans are about 1.5 times more likely to get ALS compared to people who were never in the service”; “ALS became a 100% service-connected condition for any Veteran with ALS who served longer than 90 days, received an honorable discharge, and was later diagnosed with ALS”. “Every VA medical center has an ALS Coordinator”; “Getting connected to an ALS clinic has been shown to improve life expectancy and quality of life”; the VA care team covers swallowing, drooling, breathing and “Speech and communication”; “Let your ALS coordinator know if you would prefer to receive some of your ALS care by telehealth”. Checked October 8, 2026.
19. The ALS Association. Symptoms and Diagnosis. “Some people may notice difficulty holding a pen or lifting a cup. Others may first experience changes in their voice or speech”; symptoms can begin in the hands or arms, the legs or feet, or “The muscles that control speech or swallowing”. Early symptoms include “Slurred or slowed speech” and “Episodes of uncontrollable laughing or crying”; “Sight, touch, hearing, taste, and smell are not affected”; “Eye muscles and bladder control are usually not affected”. “There is no single test that confirms ALS”; “Because many treatable conditions can mimic ALS, diagnosis often takes time”; tests may include “Electrodiagnostic tests (EMG and nerve conduction studies)”, MRI and a “Myelogram of the cervical spine”. The association “strongly recommends that anyone diagnosed with ALS seek a second opinion from an ALS specialist”, because “In about 10–15% of cases, people are initially told they have ALS but later learn they have a different condition”. Checked October 8, 2026.
20. The ALS Association. Managing Speech and Swallowing Changes. The mouth and throat muscles “are known as "bulbar muscles," and some of the "bulbar symptoms" of ALS include difficulty speaking or swallowing”. For the speaker: “Give speaking your full attention. Don’t try to eat or drink at the same time”; “Taking a breath every few words will allow you to speak louder, making it easier to hear”; “Some listeners may pretend to understand what you’ve said, even when they haven’t”. Tools “range from low-tech alphabet boards to high-tech devices with speech-generating software”; “Most people living with ALS with bulbar symptoms will go through a variety of communication aids as their needs and abilities change”. For listeners: “Get rid of any unnecessary background noise and focus your eyes on the speaker so you can see any nonverbal cues”; “Check your hearing. If you have hearing loss, use a hearing aid or amplifier”; “It may help for you to repeat what you did hear, so they can fill in the blanks”. Swallowing: “Take smaller bites of food and smaller sips of liquids”; “Swallow two or three times with each mouthful to make sure all food is cleared from your throat”; a chin-down or head-back position helps some people, and “Speech pathologists can recommend the best head position for you”; choose foods “with a single consistency, like oatmeal or thick cream soups”; “thicker liquids are easier to control and swallow than thin liquids”; “Suction machines can also be used to dispose of excess saliva, so it doesn’t have to be swallowed”. Checked October 8, 2026.
21. Centers for Disease Control and Prevention. Signs and symptoms of stroke (May 19, 2026). Signs include “Sudden confusion, trouble speaking, or difficulty understanding speech”; “Call 9-1-1 right away if you or someone else has any of these symptoms”; in the B.E. F.A.S.T. test for speech, “Ask the person to repeat a simple phrase. Is the speech slurred or strange?”; “The stroke treatments that work best are available only if the stroke is recognized and diagnosed within 3 hours of the first symptoms”; “Note the time when any symptoms first appear”; “Do not drive to the hospital or let someone else drive you”; a TIA “is a sign of a serious condition that will not go away without medical help”, so “tell a health care team about the symptoms right away.” Checked October 7, 2026.
22. National Institute of Neurological Disorders and Stroke. Frontotemporal Dementia and Other Frontotemporal Disorders (last reviewed March 13, 2026). FTD-ALS, “also called FTD with motor neuron disease, is a combination of bvFTD and ALS”; “Symptoms of either disease may appear first, with other symptoms developing over time”. Of the C9ORF72 gene: “An unusual change in this gene appears to be the most common genetic abnormality in familial frontotemporal disorders and familial ALS”; “This variant can cause a frontotemporal disorder, ALS, or both conditions”. “People with FTD-ALS typically decline quickly over two to three years”; “Speech therapy may help a person speak more clearly at first. Later on, other ways of communicating, such as a speech synthesizer, can be used”. Checked October 8, 2026.
23. U.S. Food and Drug Administration. FDA approves treatment of amyotrophic lateral sclerosis associated with a mutation in the SOD1 gene (April 25, 2023). “FDA approved Qalsody (tofersen) to treat patients with amyotrophic lateral sclerosis (ALS) associated with a mutation in the superoxide dismutase 1 (SOD1) gene (SOD1-ALS)”; “The approval was based on a reduction in plasma neurofilament light (NfL), a blood-based biomarker of axonal (nerve) injury and neurodegeneration”; “Qalsody is approved under the accelerated approval pathway”, and a confirmatory trial “is ongoing in individuals who are carriers of the SOD1 genetic mutation who do not yet have symptoms”. Given by spinal injection, “Patients receive three initial doses administered at 14-day intervals, followed by a maintenance dose every 28 days”. “According to the Centers for Disease Control and Prevention, between 16,000 and 32,000 Americans are currently living with ALS”; “Approximately 2% of ALS cases are associated with mutations in the SOD1 gene; therefore, the agency estimates there are fewer than 500 patients with SOD1-ALS in the United States”. Checked October 8, 2026.
24. James E, Ellis C, Brassington R, Sathasivam S, Young CA. Treatment for sialorrhea (excessive saliva) in people with motor neuron disease/amyotrophic lateral sclerosis. Cochrane Database of Systematic Reviews. 2022;(5):CD006981. doi:10.1002/14651858.CD006981.pub3 (PMID 35593746). “This is an update of a review first published in 2011”. Drooling arises because “loss of salivary clearance due to dysphagia leads to salivary pooling and sialorrhea”. “We identified four RCTs involving 110 participants with MND”; “There is some low-certainty or moderate-certainty evidence for the use of botulinum toxin B injections to salivary glands and moderate-certainty evidence for the use of oral dextromethorphan with quinidine (DMQ) for the treatment of sialorrhea in MND”; “Evidence on radiotherapy versus botulinum toxin A injections, and scopolamine patches is too uncertain for any conclusions to be drawn”.
25. Van Damme P, Al-Chalabi A, Andersen PM, Chiò A, Couratier P, De Carvalho M, et al. European Academy of Neurology (EAN) guideline on the management of amyotrophic lateral sclerosis in collaboration with European Reference Network for Neuromuscular Diseases (ERN EURO-NMD). European Journal of Neurology. 2024;31(6):e16264. doi:10.1111/ene.16264 (PMID 38470068). GRADE-based European guideline; strong recommendations say “Offer”, weak ones “Consider”. “Offer lifelong riluzole to all people with ALS at diagnosis”; “Based on the available evidence, the panel currently does not recommend the use of intravenous or oral edaravone outside the context of a clinical trial”; the same for AMX0035 (sodium phenylbutyrate and taurursodiol); for progressive ALS caused by SOD1 mutations, “offer tofersen as first-line treatment”. Multidisciplinary reviews “usually every 3–6 months depending on disease progression”; refer to “a specialised AAC hub if complex high technology AAC equipment (for example, message and voice banking, eye gaze access) is needed or is likely to be needed”; “If there is respiratory insufficiency, perform the gastrostomy with the patient established on NIV”; “NIV should be offered to all patients with ALS with either symptoms, signs, or laboratory investigations supportive of respiratory insufficiency”, and “Every effort must be made to allow the use of NIV, independently of bulbar function”; “Consider dextromethorphan/quinidine (DMQ), particularly in people with emotional lability/pseudobulbar affect”; “Consider speech therapy in people with ALS who experience hoarse voice”.
26. The ALS Association. FYI: Cognitive and Behavioral Changes in ALS: A Guide for People with ALS and their Families (fact sheet, revised October 2014). It says “up to 50% of people with ALS will never develop significant changes in thinking or behavior”, while “up to 50% of people with ALS will experience some degree of change in thinking or behavior, with approximately 25% of those people with ALS developing a full blown dementia”. Signs include a person who “Says "no" when means "yes," or becomes less reliable with yes/no responses”, “Thinks of the word he/she wants to use but cannot get it out in conversation” or “Cannot follow instructions to complete physical therapy/occupational therapy/speech therapy exercises, stretches, or guidelines such as swallowing precautions”; other causes to check include “insufficient breathing mechanics (too little oxygen or too much carbon dioxide), medication side effects, depression or anxiety, sleep disturbance”. “Pseudobulbar affect is common in ALS and is the result of a brain reflex that is no longer working correctly”; “It does not necessarily mean that a person is feeling anxious, sad, depressed, or emotionally distraught”. For families: “Simplify communication with the affected person. Break sentences up into short phrases. Ask yes/no questions. Slow down when speaking”. Checked October 8, 2026.
27. The ALS Association. Medications for Treating ALS. “Currently, there are four ALS drugs that may be prescribed to people living with the disease”: Qalsody (tofersen), Radicava (edaravone), riluzole (listed as Rilutek, Tiglutik and Exservan) and Nuedexta. Qalsody was “approved by the Food and Drug Administration (FDA) in 2023 to treat ALS associated with a mutation in the superoxide dismutase 1” gene, and “Because Qalsody is so specifically targeted, it is not likely to help people who do not have a SOD1 mutation”; “The FDA approved Radicava as an IV treatment for ALS in 2017 followed by an oral suspension in 2022”, which “can be administered by mouth or via feeding tube”; “Rilutek (now generic) was the first FDA-approved drug to treat ALS”; “Nuedexta is prescribed to help treat pseudobulbar affect”, and “Recent evidence suggests Nuedexta may also help improve bulbar function in people living with ALS whether they experience pseudobulbar affect or not”. The page still lists Exservan, whose FDA approval was withdrawn as of February 14, 2025. Checked October 8, 2026.
28. Clark HM, Duffy JR, Strand EA, Hanley H, Solomon NP. Orofacial muscle strength across the dysarthrias. Brain Sciences. 2022;12(3):365. doi:10.3390/brainsci12030365 (PMID 35326321). Mayo Clinic study of 79 speakers with dysarthria: “Flaccid (bulbar) and spastic (pseudobulbar) dysarthrias share the feature of neuromuscular weakness”, while weakness “is not apparent in hypokinetic (parkinsonian), ataxic (cerebellar), or hyperkinetic (dystonia, chorea) dysarthrias”; “speakers with PD…would be predicted to exhibit hypokinetic dysarthria”; “the predicted dysarthria type associated with ALS would be expected to be mixed spastic–flaccid.” “The results generally support predictions that orofacial weakness accompanies flaccid and/or spastic dysarthria but not ataxic dysarthria.”
29. American Speech-Language-Hearing Association. Dysarthria in adults (Practice Portal). Dysarthria is “a group of neurogenic speech disorders characterized by” “abnormalities in the strength, speed, range, steadiness, tone, or accuracy of movements required for breathing, phonatory, resonatory, articulatory, or prosodic aspects of speech production”; “Dysarthria can adversely affect intelligibility of speech and/or naturalness of speech”; “Dysarthria can result from congenital conditions, or it can be acquired at any age as the result of a neurologic injury, disease, or disorder”; “The severity of the disorder does not necessarily determine the degree of disability”; it “may also co-occur with other neurogenic language, cognitive, and swallowing disorders”; “Aphasia affects language comprehension and expression; dysarthria affects only speech production.” Prevalence: “78%–93% of people with Huntington’s disease have dysarthria”; “Between 40% and 51% of individuals with multiple sclerosis are diagnosed with dysarthria at some point during the course of their disease”; “Approximately 26%–62% of individuals with neuromuscular disease experience dysarthria during the course of their disease”; “dysarthria affects approximately 44%–88% of individuals with Parkinson’s disease”; “22%–58% of individuals with acute stroke present with dysarthria”; “Approximately 30%–86% of individuals with acute to subacute traumatic brain injury experience dysarthria”. Causes include “stroke (hemorrhagic or nonhemorrhagic)”; “traumatic brain injury, chronic traumatic encephalopathy”; “amyotrophic lateral sclerosis, Parkinson’s disease, progressive supranuclear palsy, cerebellar degeneration, corticobasal degeneration, multiple system atrophy, Friedreich’s ataxia, Huntington’s disease”; “multiple sclerosis, encephalitis, Guillain-Barré and associated autoimmune syndromes”; “Neuromuscular disease (e.g., myasthenia gravis, amyotrophic lateral sclerosis, muscular dystrophy)”; “cerebral palsy, Chiari malformation, congenital suprabulbar palsy”; “central and peripheral nervous system tumors; cerebral, cerebellar, or brainstem tumors”; “neurosurgical/postoperative trauma”; “COVID-19, acquired immune deficiency syndrome (AIDS), Creutzfeldt-Jakob disease”; “botulism, carbon monoxide poisoning”; heavy metal toxicity and “lithium toxicity”. Types by site of damage: flaccid, “associated with disorders affecting the lower motor neuron pathways and motor units”; spastic, “associated with bilateral disorders of the upper motor neuron system”; ataxic, “associated with disorders of the cerebellar control circuit”; hypokinetic and hyperkinetic, “associated with disorders of the basal ganglia control circuit”; unilateral upper motor neuron, “associated with unilateral disorders of the upper motor neuron system”; mixed, “various combinations of dysarthria types”; “it may be difficult to determine dysarthria type”. Assessment: SLPs “play a central role in the screening, assessment, diagnosis, and treatment of persons with dysarthria”; the history covers “medications and potential side effects/symptoms” and “variation in effort for speaking in different contexts (e.g., when fatigued, at different times of day, relative to medication schedule)”; “completion of a cranial nerve exam to assess facial, oral, velopharyngeal, and laryngeal function and symmetry”; “assessment of sustained vowel prolongation” and of syllable rates “to judge speed and regularity of jaw, lip, and tongue movement”; “2 to 4 minutes of reading or speaking aloud to assess deterioration over time”; “Intelligibility and comprehensibility are typically reported as a percentage of words correctly identified by a listener”, or as “the number of intelligible or comprehensible words per minute”; the SLP will “assess receptive and expressive language skills in oral and written modalities to help distinguish between dysarthria and aphasia” and assess swallowing; referral to “a neurologist for diagnosis of an underlying etiology” and “a prosthodontist for palatal lift candidacy”; “Muscle weakness or spasticity is present in several dysarthria types; AOS does not present with muscle weakness or spasticity unless there is a concomitant dysarthria”; “dysarthric speech may present with more consistent error patterns”; its differential diagnosis table marks muscle weakness and consistent error patterns as features of dysarthria and not of apraxia of speech or aphasia, articulatory and prosodic deficits as features of dysarthria and apraxia of speech, groping for articulatory postures as a feature of apraxia of speech only, and language processing deficits as a feature of aphasia only. Treatment: “Not all individuals with dysarthria are candidates for treatment”; “Restorative interventions maximize intelligibility by addressing the function of the speech production subsystems”; “Compensatory interventions maximize a person’s participation in activities by addressing functional communication”, by “increasing the speaker’s use of communication strategies”, “improving listener skills and capacity” and “altering the communication environment”; “Sometimes the goal of treatment is to preserve or maintain function or to slow further decline, such as when an individual has a progressive disease”. Techniques include “Postural adjustments (e.g., sitting upright to improve breath support for speech)”, “optimal phrase length based on respiratory support and syntactic boundaries”, “Expiratory muscle strength training using a pressure threshold device”, LSVT LOUD (“an intensive program that targets high phonatory effort to improve loudness”), Pitch Limiting Voice Treatment (“a program for increasing vocal loudness without increasing pitch”), SPEAK OUT! (which “combines individual therapy with weekly speech and singing groups, daily home practice, and education for patients and their care partners”), “pacing strategies, including hand tapping or use of a pacing board or metronome”, “delayed auditory feedback”, “Exaggerated articulation (overarticulation) to emphasize phonetic placement and increase precision” and “palatal lift prosthesis and nasal obturator to occlude nasal airflow”; by referral, “pharyngeal augmentation, pharyngeal flap, or palatal flap to treat velopharyngeal incompetency and improve resonance” and “pharmacological management to relieve symptoms of the underlying neurologic condition”. AAC: “AAC involves supplementing or replacing natural speech and/or writing”; “Speech supplementation, a form of AAC, uses additional cues to enhance the speaker’s spoken message”, as when “The speaker indicates the first letter of a word on a letter board”, “The speaker indicates the topic of the spoken message using a communication display” or “The speaker uses an easily understood gesture with the spoken word or phrase”; “Other augmentative supports include voice amplifiers, artificial phonation devices (e.g., electrolarynx devices and intraoral devices), and oral prosthetics”; in neurodegenerative disease, “initiating AAC systems and voice banking as early as possible following a diagnosis”, and “The goal of treatment is to maximize communication at each stage of the disease, not to reverse decline”. Dose and format: people “may benefit from frequent and intense practice consistent with the principles of motor learning to enhance retention of speech skills”; “blocked, constant practice is associated with skill acquisition, whereas random, variable practice is associated with retention and transfer”; “Dosage may vary depending on the individual’s type and severity of disease, energy level, motivation, and degree of community support”; “care partners and other communication partners can be trained by the SLP to provide opportunities for practice, encourage the use of strategies such as AAC, and give feedback about performance in functional settings”; “Individual treatment may be most appropriate for learning new techniques and strategies. Group treatment provides opportunities to practice techniques and strategies in a naturalistic setting”; “Early initiation of treatment may be beneficial for learning or relearning motor patterns; however, improvements in comprehensibility using communication strategies are possible at any point”; “Telepractice may be appropriate for some individuals with dysarthria”. Partner strategies include “preparing the communication partner by gaining their attention and introducing the topic of conversation before speaking”, “asking for clarification by asking specific questions”, “providing feedback and encouragement”, “optimizing the ability to hear the speaker and to see their visual communication cues (e.g., by wearing prescribed hearing aids and glasses during conversations)”, “reducing background noise (e.g., choose a quiet setting for conversations; turn off TV, radio, and fans)”, “reducing the distance between the speaker and their communication partner” and “using face-to-face seating for conversations”. “Atypical vocal quality (e.g., breathy, harsh, strained) and difficulty changing loudness and pitch can indicate neuromotor damage to the phonatory system.” Checked October 7, 2026.
30. The ALS Association. Stages of ALS. “There is no single timeline for ALS”; “While the average survival time after diagnosis is about three years”, “many people live longer”: “About 20% live five years or more”, “About 10% live ten years or more” and “About 5% live twenty years or longer”; “Many people experience periods lasting weeks or months with little or no noticeable change in function”. Checked October 8, 2026.
31. The ALS Association. Augmentative and Alternative Communication. “Working with a speech-language pathologist (SLP) early in the disease process can help individuals maintain effective communication and plan for future needs”; AAC can add to existing speech (augmentative communication) or “serve as an alternative when speech is no longer functional (alternative communication)”. Types include writing or typing, speech-generating devices, “Alphabet and communication boards”, apps, gestures and signs; “No single communication method works for everyone”. “An AAC evaluation by a qualified SLP helps determine which device and access method best meets an individual’s needs”; access can be by direct touch, switch scanning, head tracking or eye gaze, and “Eye-gaze technology allows individuals to control a communication device using eye movement”; “it can be considered at any stage when alternative access methods are needed”. “AAC planning is most successful when started early”, and the SLP will “Discuss voice preservation when appropriate”. “Medicare and some insurance policies may cover the majority of the cost associated with purchasing an eye-gaze system”. Checked October 8, 2026.
32. American Speech-Language-Hearing Association. Augmentative and alternative communication (Practice Portal). Unaided forms “do not require an external tool” (gestures, signs, facial expressions); aided forms “require some form of external tool, either electronic or nonelectronic”; “Examples of acquired disabilities that may benefit from AAC include cerebrovascular accidents (i.e., stroke); traumatic or acquired brain injuries; neurodegenerative diseases, such as ALS, supranuclear palsy, primary progressive aphasia, and apraxia; disability following surgeries (e.g., glossectomy, laryngectomy)”; “There are no prerequisites for AAC intervention”; “AAC use may help improve natural speech when used in a multimodal approach”; “selections can be made via eye gaze, head pointing, or scanning methods”, and direct selection can use a joystick, eye gaze, a head mouse or “brain–computer interface technology”; with voice banking “an individual can record a large inventory of speech, which is then used to create a synthetic voice that approximates their natural voice”, and “Voice banking should be completed when a communicator’s energy and skills are sufficient to generate clear speech”; with message banking “an individual can use their own voice or a proxy voice to digitally record and store messages, which may include words, phrases, sentences, and sounds using natural voice, inflection, and intonation”; “Medicare may not cover AAC devices in all settings (e.g., skilled nursing facilities, hospice).” Checked October 7, 2026.
33. The ALS Association. 10 Things to Know: Maintaining Good Communication (PDF, May 2, 2023). “Meet with a communication specialist early”; “Communication specialists are Speech Language Pathologists (SLPs) who have expertise in augmentative and alternative communication (AAC)”; “Caregivers need time to learn, too”. When the voice is tired, “Voice amplifiers, LCD boards, and pen and paper are some options”; “Text to speech apps on smartphones and tablets are helpful for early speech changes”; “Communication devices can be operated through a touch screen, a switch or button, or eye gaze technology”; “Non-technical communication options are beneficial for quick communication when technology isn’t readily available”. “Most insurance plans will cover one speech generating device every 5 years. Prior approval and an AAC assessment are usually required”. Checked October 8, 2026.
34. Card NS, Wairagkar M, Iacobacci C, Hou X, Singer-Clark T, Willett FR, et al. An accurate and rapidly calibrating speech neuroprosthesis. The New England Journal of Medicine. 2024;391(7):609–618. doi:10.1056/NEJMoa2314132 (PMID 39141853). BrainGate2 report of one participant: “A 45-year-old man with amyotrophic lateral sclerosis (ALS) with tetraparesis and severe dysarthria underwent surgical implantation of four microelectrode arrays into his left precentral gyrus”; decoded words were spoken by “text-to-speech software designed to sound like his pre-ALS voice”. On the first day “the neuroprosthesis achieved 99.6% accuracy with a 50-word vocabulary”, on the second “the neuroprosthesis achieved 90.2% accuracy using a 125,000-word vocabulary”, and it “sustained 97.5% accuracy for self-paced conversations for over 248 cumulative hours over 8.4 months after surgical implantation”, at a “self-paced speaking rate of 31.6 words per minute” against his head-mouse typing, which “has been 6.3 ± 1.3 correct words per minute”. A single-participant investigational device study, not an available treatment.
35. Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73(15):1218–1226. doi:10.1212/WNL.0b013e3181bc0141 (PMID 19822872). Retired by the AAN on February 21, 2026 (AAN list of retired guidelines). As published: “Riluzole should be offered to slow disease progression in patients with ALS (Level A)”, with “prolonged survival of 2–3 months” in 4 Class I trials; “In patients with ALS with impaired oral food intake, enteral nutrition via PEG should be considered to stabilize body weight (Level B)”; “PEG should be considered for prolonging survival in patients with ALS (Level B)”; “There are insufficient data to support or refute specific timing of PEG insertion in patients with ALS (Level U)”, although “patients with dysphagia will possibly be exposed to less risk if PEG is placed when FVC is above 50% of predicted (1 Class III study)”; “PEG does not eliminate oral feeding”; “NIV should be considered to treat respiratory insufficiency in ALS, both to lengthen survival and to slow the rate of FVC decline (Level B)”; “NIV may be considered to enhance QOL in patients with ALS who have respiratory insufficiency (Level C)”; “NIV may be considered at the earliest sign of nocturnal hypoventilation or respiratory insufficiency in order to improve compliance with NIV in patients with ALS (Level C)”.
36. Sulistyo A, Abrahao A, Freitas ME, Ritsma B, Zinman L. Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews. 2023;(8):CD004030. doi:10.1002/14651858.CD004030.pub4 (PMID 37579081). The current version, replacing Katzberg and Benatar 2011 (CD004030.pub3). “We found no RCTs or quasi-RCTs comparing the effectiveness of enteral tube feeding versus oral feeds without enteral tube feeding”, and “Such RCTs are very unlikely to be performed for ethical reasons”. Of “23 non-randomized studies”, “Two prospective and five retrospective studies reported a longer survival in people with ALS after PEG compared to those without PEG, even when controlling for possible confounders in multivariate analysis”, while “Four prospective, 10 retrospective, and two post hoc analysis studies did not report a survival advantage with PEG”; “Due to the nature of non-randomized studies, the certainty of the evidence is poor”. There is no trial evidence “on the optimal timing and safety of enteral tube feeding tube insertion, or on radiologically-guided versus standard insertion”.
37. American Academy of Neurology. Retired/Replaced Guidelines. Lists “Update: The Care of the Patient with Amyotrophic Lateral Sclerosis: Drug, Nutritional, and Respiratory Therapies Published October 2009 Retired by the AAN Guidelines Subcommittee on February 21, 2026” (Miller 2009, part 1). Checked October 8, 2026.
38. Radunovic A, Annane D, Rafiq MK, Brassington R, Mustfa N. Mechanical ventilation for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database of Systematic Reviews. 2017;10:CD004427. doi:10.1002/14651858.CD004427.pub4 (PMID 28982219). The conclusions rest on “a single study of 41 participants comparing NIV with standard care”: “The median survival in the NIV group was 48 days longer (219 days compared to 171 days for the standard care group”; “Survival and quality of life were significantly improved in the subgroup of people with better bulbar function, but not in those with severe bulbar impairment”; further trials are unlikely because “not offering NIV to the control group is no longer ethically justifiable”.
39. The ALS Association. 10 Things to Know: Breathing Easier with ALS (PDF, September 13, 2023). “Feeling short of breath during activity, having trouble breathing when lying down, vivid dreams, morning headaches, or daytime drowsiness may be signs of weakening breathing muscles”; “A pulmonologist and respiratory therapist (RT) are key members of your ALS team”; “NIV supports inadequate breathing with use of a mask or mouthpiece. It may be recommended for use initially during nighttime hours, with increased use during the day as needed”; “Oxygen should only be prescribed by a provider knowledgeable in pulmonary disease and ALS, and ventilation support should be readily available”; “Invasive ventilation supports breathing through a tube placed in a surgically created opening into the trachea, called a tracheostomy”; “A speech therapist, dietitian, or respiratory therapist can offer tips for safer swallowing and making breathing during meals easier”. Checked October 8, 2026.
40. Miller RG, Mitchell JD, Moore DH. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database of Systematic Reviews. 2012;(3):CD001447. doi:10.1002/14651858.CD001447.pub3 (PMID 22419278). “The four trials examining tracheostomy-free survival included a total of 974 riluzole-treated patients and 503 placebo-treated patients”; “Riluzole 100 mg daily is reasonably safe and probably prolongs median survival by about two to three months in patients with amyotrophic lateral sclerosis”.
41. U.S. Food and Drug Administration. Drugs@FDA: NDA 209176 (Radicava, edaravone, intravenous). First approval “05/05/2017 ORIG-1 Approval”; both intravenous strengths are now listed as discontinued: “RADICAVA EDARAVONE 30MG/100ML (0.3MG/ML) SOLUTION;INTRAVENOUS Discontinued” and “RADICAVA EDARAVONE 60MG/100ML (0.6MG/ML) SOLUTION;INTRAVENOUS Discontinued”. This is a marketing status (no Federal Register notice withdrawing approval was found); the oral suspension, Radicava ORS, is a separate application (NDA 215446) and is not covered by this page. Checked October 8, 2026.
42. Miller TM, Cudkowicz ME, Genge A, Shaw PJ, Sobue G, Bucelli RC, et al. Trial of antisense oligonucleotide tofersen for SOD1 ALS. The New England Journal of Medicine. 2022;387(12):1099–1110. doi:10.1056/NEJMoa2204705 (PMID 36129998). VALOR, phase 3: adults with SOD1 ALS were randomized 2:1 to “eight doses of tofersen (100 mg) or placebo over a period of 24 weeks”; “A total of 72 participants received tofersen (39 predicted to have faster progression), and 36 received placebo (21 predicted to have faster progression)”. “In persons with SOD1 ALS, tofersen reduced concentrations of SOD1 in CSF and of neurofilament light chains in plasma over 28 weeks but did not improve clinical end points and was associated with adverse events”; “Neurologic serious adverse events occurred in 7% of tofersen recipients”. In the open-label extension, an earlier start favored function at 52 weeks (“difference, 3.5 points; 95% CI, 0.4 to 6.7”), without adjustment for multiplicity. Funded by Biogen.
43. U.S. Food and Drug Administration, notice in the Federal Register. Amylyx Pharmaceuticals, Inc.; Withdrawal of Approval of New Drug Application for RELYVRIO (Sodium Phenylbutyrate and Taurursodiol) for Suspension, 3 Gram/Packet and 1 Gram/Packet. 90 FR 42251, August 29, 2025. “On September 29, 2022, FDA approved NDA 216660 for RELYVRIO (sodium phenylbutyrate and taurursodiol) for suspension, 3 g/packet and 1 g/packet, for the treatment of amyotrophic lateral sclerosis (ALS) in adults”; the phase 3 PHOENIX trial “did not meet its prespecified primary and secondary endpoints”; “On September 30, 2024, Amylyx notified the Agency they planned to discontinue marketing of RELYVRIO as of October 31, 2024”; “Amylyx has voluntarily requested that FDA withdraw approval of this application and has waived its opportunity for a hearing”; “Approval is withdrawn as of August 29, 2025”. Checked October 8, 2026.
44. U.S. Food and Drug Administration, notice in the Federal Register. Teva Branded Pharmaceutical Products R&D, Inc., et al.; Withdrawal of Approval of 12 New Drug Applications. 90 FR 3877, January 15, 2025. The 12 include “NDA 212640”, “Exservan (riluzole) Oral Film, 50 mg”; “The applicants notified the Agency in writing that the drug products were no longer marketed and requested that the approval of the applications be withdrawn”; “Approval is withdrawn as of February 14, 2025”. Rilutek and Tiglutik are not among the 12. Checked October 8, 2026.
45. The ALS Association. ALS Certified Centers & Clinics. Certified Treatment Centers of Excellence and Recognized Treatment Centers use a multidisciplinary model “allowing them to receive care from each discipline during a single visit”; “The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association liaison”. The locator also lists an “Affiliated Clinic” type, VA clinics and a “Nationwide Telemedicine Provider” type. Checked October 8, 2026.
46. American Speech-Language-Hearing Association. Person-Centered Focus on Function: Augmentative and Alternative Communication for Adult with Amyotrophic Lateral Sclerosis (ALS) (PDF, linked from the AAC Practice Portal). A worked example that ASHA calls “consensus based and provided as a resource for members”: a 58-year-old man with “Hypernasality, dysarthria and dysphagia”, “Speech intelligibility poor (FDA-2)” and “increased frustration and signs of depression as speech declines”. Long-term goal: he “will use speech attempts as well as multimodal communication (aided and unaided) to participate in activities with family and friends and to communicate about medical care with familiar and unfamiliar listeners”; short-term goals include using “rate enhancement features (word and phrase prediction, pre-stored messages)” and “his speech-generating device (SGD) to access external devices (e.g., phone, computer)”. Measures named: the “Frenchay Dysarthria Assessment: Second Edition (FDA-2)”, the “Functional Assessment of Communication Skills for Adults (ASHA FACS)” and the “Quality of Communication Life Scale (ASHA QCL)”. Checked October 8, 2026.
47. Centers for Medicare & Medicaid Services. Telehealth (Medicare.gov). “Through December 31, 2027, Medicare covers telehealth services that you can get from anywhere in the U.S., including your home”; the examples listed include speech therapy, cognitive assessments and “Caregiver training services”; after the Part B deductible you pay 20% of the Medicare-approved amount, and “For most telehealth services, you’ll pay the same amount that you would if you got the services in person”; Medicare Advantage plans “may offer more telehealth benefits than the basic coverage in Original Medicare.” Checked October 7, 2026.
48. Code of Federal Regulations, 42 CFR §410.61, Plan of treatment requirements for outpatient rehabilitation services. “The plan is established before treatment is begun by one of the following”, among them “A speech-language pathologist who furnishes the speech-language pathology services”; “The plan prescribes the type, amount, frequency, and duration of the physical therapy, occupational therapy, or speech-language pathology services to be furnished to the individual, and indicates the diagnosis and anticipated goals.” Text as published in the eCFR. Checked October 7, 2026.
49. Code of Federal Regulations, 42 CFR §424.24(c), Outpatient physical therapy, occupational therapy, and speech-language pathology services. When an SLP establishes the plan, “the certification must be signed by a physician or by a nurse practitioner, clinical nurse specialist, or physician assistant who has knowledge of the case”; “Recertification is required at least every 90 days”; “No references to an order or referral in this subsection shall be construed to require an order or referral for outpatient physical therapy, occupational therapy, or speech-language pathology services.” Text as published in the eCFR. Checked October 7, 2026.
50. Centers for Medicare & Medicaid Services. Medicare Benefit Policy Manual, Chapter 15: Covered medical and other health services (Rev. 13889, issued July 30, 2026), section 220.3. “The progress report provides justification for the medical necessity of treatment”; “The minimum progress report period shall be at least once every 10 treatment days.” Checked October 7, 2026.
51. Centers for Medicare & Medicaid Services. Speech-language pathology services (Medicare.gov). Part B covers “medically necessary outpatient speech-language pathology services”, which “provide evaluation and treatment to regain and strengthen speech and language skills. This includes cognitive and swallowing skills, or therapy to improve or maintain current function or slow decline”; “Your doctor or other health care provider (including a nurse practitioner, clinical nurse specialist, or physician assistant) must certify you need this care”; after the Part B deductible you pay 20% of the Medicare-approved amount; “There’s no limit on how much Medicare pays for your medically necessary outpatient speech-language pathology services in one calendar year.” Checked October 7, 2026.
52. Centers for Medicare & Medicaid Services. Jimmo settlement. The Jimmo Settlement Agreement (January 2013) “clarified that the Medicare program covers skilled nursing care and skilled therapy services under Medicare’s skilled nursing facility, home health, and outpatient therapy benefits when a beneficiary needs skilled care in order to maintain function or to prevent or slow decline or deterioration (provided all other coverage criteria are met)”; coverage “does not turn on the presence or absence of a beneficiary’s potential for improvement, but rather on the beneficiary’s need for skilled care.” Checked October 7, 2026.
53. The ALS Association. 10 Things to Know: Preparing for an Emergency (PDF, July 24, 2025). “Register with local emergency responders” and “Inform them what special requirements you may need in an emergency (i.e., mobility needs, medical equipment, and communication methods)”; ask the electric provider about “priority restoration for medical equipment users”; a go bag should “Include essentials like food, water, supplies & formula for feeding tube, communication tools, and adaptive equipment”; “Keep a list of medications, dosages, and medical contacts”; a support network should “Include family, friends, and neighbors who can assist in emergencies”. Checked October 8, 2026.
54. The ALS Association. Support for ALS Caregivers. “In addition to being on call 24/7, you may have additional responsibilities”; “Supporting your loved one with ALS starts with taking care of you”. The association offers support groups, care navigation, a “Free educational course for ALS caregivers” and a “Twice-monthly webinar series designed to meet the real needs of individuals living with ALS, their families, and caregivers”. Checked October 8, 2026.
55. Centers for Medicare & Medicaid Services. Home health services (Medicare.gov). Home health care helps you “maintain your current condition or level of function, or slow your rate of decline”; covered services include “speech-language pathology services (if you meet certain conditions)”; you must need part-time or intermittent skilled services and be homebound: “Leaving your home isn’t recommended because of your condition or you have trouble leaving your home without help” and “You’re normally unable to leave your home and leaving takes a lot of effort”; “You can still get home health care if you attend adult day care”; a provider “must see you in person and confirm you need home health care”; “You pay nothing for covered home health services.” Checked October 7, 2026.
56. Centers for Medicare & Medicaid Services. Therapy services. The Bipartisan Budget Act of 2018 repealed the outpatient therapy caps and “preserves the former therapy cap amounts as thresholds above which claims must include the KX modifier as a confirmation that services are medically necessary as justified by appropriate documentation in the medical record”; “For CY 2026 this KX modifier threshold amount is: $2,480 for PT and SLP services combined”; “the MR threshold is $3,000 for PT and SLP services”, and “not all claims exceeding the MR threshold amount are subject to review.” Checked October 7, 2026.
57. Medicaid.gov (Centers for Medicare & Medicaid Services). Mandatory & optional Medicaid benefits. “States are required to provide all mandatory benefits under federal law. States may provide optional benefits if they choose to add them through the state plan process”; mandatory benefits include home health services and nursing facility services; optional benefits include “Speech, hearing and language disorder services.” Checked October 7, 2026.
58. HealthCare.gov (Centers for Medicare & Medicaid Services). What Marketplace health insurance plans cover. “All plans offered in the Marketplace cover these 10 essential health benefits”, among them “Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)”; “Specific services covered in each broad benefit category can vary based on your state’s requirements.” Checked October 7, 2026.
59. Veterans Health Administration. VHA Directive 1170.02(1): VHA audiology and speech pathology services (December 9, 2020; amended July 19, 2022). The directive covers “disorders of hearing, tinnitus, balance, speech, language, voice, fluency, cognitive and swallowing”; “Audiology and speech pathology services are standard medical benefits available to all enrolled Veterans.” Checked October 7, 2026.
60. Job Accommodation Network (US Department of Labor, Office of Disability Employment Policy). Speech-language impairment. “The ADA does not contain a definitive list of medical conditions that constitute disabilities”; a person with a disability “has a physical or mental impairment that substantially limits one or more” major life activities, has a record of one, or is regarded as having one. Accommodation ideas: for no speech or unintelligible speech, an “Augmentative and Alternative Communication (AAC) Device”, “Communicate Another Way” and “Speech Generating Communication Devices with Telephone Access”, with job restructuring for unintelligible speech; for weak speech, a flexible schedule, job restructuring, voice amplification and “Outgoing Voice Amplification - Telephone”. Checked October 7, 2026.
61. American Speech-Language-Hearing Association. ASHA clinical specialty certification. A Board Certified Specialist (BCS) has demonstrated advanced knowledge and skills in an area; “Specialty certification is not required to practice in any area within the Audiology or Speech-Language Pathology Scopes of Practice”; “Specialty certification is currently available through” five boards: the “American Audiology Board of Intraoperative Monitoring”, the “American Board of Augmentative and Alternative Communication”, the “American Board of Child Language and Language Disorders”, the “American Board of Fluency and Fluency Disorders” and the “American Board of Swallowing and Swallowing Disorders.” Checked October 7, 2026.
62. American Speech-Language-Hearing Association. Information about ASHA certification. The CCC is “a nationally recognized professional credential that represents a level of excellence in the field”; holders “have voluntarily met rigorous academic and professional standards, typically going beyond the minimum requirements for state licensure.” Checked October 7, 2026.
63. American Speech-Language-Hearing Association. Audiology and speech-language pathology certification. ASHA’s public tool lets anyone “Verify the status of an individual’s Certificate of Clinical Competence in Audiology (CCC-A) or Speech-Language Pathology (CCC-SLP).” Checked October 7, 2026.

Medical disclaimer. This page is for general educational purposes and does not constitute medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider about your individual situation.