Screen Shot 2020-01-07 at 9.01.17 AM

Disability Wiki.

Can I Receive Long Term Disability Benefits for Amyotrophic Lateral Sclerosis (ALS)?

Illnesses llnesses - Amyotrophic Lateral Sclerosis (ALS)


Although ALS is a progressive and fatal disease, to receive long term disability benefits your claim must still be supported by sufficient medical evidence and proof of appropriate treatment. It is also important to provide a detailed explanation of how your symptoms prevent you from performing your job duties.  Don’t simply assume the insurance carrier will see the connection.  You must explain it in detail.

What is Amyotrophic Lateral Sclerosis (ALS)?

Amyotrophic Lateral Sclerosis, often called “ALS” or “Lou Gehrig’s disease,” is a devastating neurodegenerative disorder that attacks nerve cells іn your spinal cord and lower brain.  Specifically, it attacks the nerve cells responsible for transmitting messages from your brain to the voluntary muscles throughout your body.  This causes a progressive inability to move your muscles, speak, eat, and breathe.  Man with Amуоtrорhіс Lаtеrаl Sсlеrоѕіѕ ALSALS also causes an array of cognitive and emotional difficulties.  There is no cure for the condition, which ultimately leads to death.

Despite the seriousness of ALS, it is still important to adequately document your claim.  Knowing how to substantiate your long term disability claim (e.g., through medical evidence, proof of treatment, etc.) will help increase your chances of approval.  Here’s what you need to know before filing your long term disability claim for ALS.

Disabling Signs and Symptoms for ALS

The initial symptoms of ALS and the progression of the disease can vary from person to person.  Symptoms often begin in one of the extremities and spread to other parts of your body.  ALS symptoms may start with something seemingly benign like muscle twitching or mild weakness in a limb.  However, as the disease progresses, more and more muscles and activities become affected. 

Common Early Symptoms of ALS include: 

  • Difficulty carrying out daily activities, including walking
  • Increased clumsiness
  • Weakness іn your feet, hands, legs, and ankles;
  • Difficulty holding items in your hands
  • Muscle cramping, twitching, and stiffness in your arms, shoulders, or tongue
  • Difficulty maintaining good posture and holding your head up
  • Uncontrolled outbursts of laughing or crying, known as emotional lability
  • Cognitive changes
  • Slurring of speech and difficulty with voice projection
  • Pain
  • Abnormal limb fatigue  
  • General fatigue
  • Difficulty chewing or swallowing

These symptoms have varying effects on your body and functional abilities.  For example, if the initial symptoms affect the hands or arms, you may have difficulty buttoning a shirt, writing, typing on a computer, or turning a key in a lock.  Alternatively, if the initial symptoms affect the legs, you may experience awkwardness while walking, tripping, or stumbling.  

Common Advanced Symptoms of ALS include:

  • More severe muscle weakness
  • Less muscle mass
  • More serious chewing and swallowing problems
  • Difficulty speaking
  • Trouble breathing

As ALS progresses, it begins to affect almost all of the muscles you control.  For example, ALS results in severe weakness in your legs, leaving you wheelchair bound.  ALS can paralyze the muscles you use to breathe forcing you to use a CPAP-like machine to help you breathe at night.  ALS also can result in problems speaking and eating, leading to the use of communication technologies and a feeding tube, respectively.  Amyotrophic Lateral Sclerosis can also lead to dementia.

Types of ALS

There are two main types of ALS dependent on their signs and symptoms and whether or not there is a clear genetic association.  ALS can either be Sporadic or Familial.

Sporadic ALS

This is the most common form of ALS, affecting upwards of 90-95% of the people suffering from the disease.  It is called “Sporadic” because there is no clear cause or reason why you developed the disease.  

Familial ALS

This type of ALS іѕ inherited and caused by a change to a gene.  It affects around 5 to 10% оf ALS cases.  In this type of ALS, the faulty gene is passed from the parent to the child.  So, if one parent has the gene for ALS, the child will have a 50 percent chance оf developing the condition.

How is Amyotrophic Lateral Sclerosis (ALS) Diagnosed?

Your long term disability insurance company will require proof of your ALS diagnosis for your long term disability claim.  Unfortunately, ALS is difficult to diagnose early because іt may appear similar to other more common neurological diseases.  It is also difficult to diagnose because no one test can provide a definitive diagnosis.

The first step in obtaining an ALS diagnosis is to visit your doctor.  An ALS diagnosis can be based primarily on the signs and symptoms observed by your doctor.  If ALS is suspected, your physician will conduct a thorough evaluation.  Your physician will obtain your full medical history and conduct detailed neurological examinations over time to determine if your symptoms of muscle weakness, atrophy, and hyperreflexia (and other symptoms) are getting progressively worse. 

Dіagnostic tеѕtѕ fоr ALS

In addition to the physical examinations and the symptoms observed by your physician, the following diagnostic tests may be performed to help rule out other causes of your complaints:

Electromyography (EMG)

Electromyography measures the tiny electrical discharges produced іn muscles. A thin-needle electrode is inserted into the muscles your doctor wants to study. An instrument records the electrical activity in the muscle as it rests and contracts.  Abnormalities in your muscles can help your doctor diagnose ALS and/or rule out other disorders.

Nerve conduction study (NCS)

As part of an electromyography study, two electrodes are taped to the skin above a nerve or muscle to be studied. A small shock is passed through the nerve to measure the size and speed of nerve signals. This test can determine if you suffer from nerve damage associated with ALS.


Your doctor may suggest magnetic resonance imaging (MRI) or a computerized tomography (CT) scan of the brain and/or spinal cord. These tests can help your doctor determine if something other than ALS may be causing the signs and symptoms. 

Spinal tap (lumbar puncture)

This test analyzes the cerebrospinal fluid surrounding the brain and spinal cord. A needle is inserted into the spinal canal to collect fluid. Tests of this fluid indicate the number and type of white blood cells, the level of sugar, and the levels and type of proteins. Additional tests on this fluid can indicate evidence of bleeding, infection, and abnormal cells.

Blood and urine tests

Analyzing samples of blood and urine in the laboratory may help your doctor eliminate other possible causes of your signs and symptoms. 

Muscle biopsy

If your doctor detects muscle disease rather than ALS, your doctor might recommend a muscle biopsy. In this procedure, a small portion of tissue is removed and sent to a lab for analysis to rule our other neuromuscular diseases.

Appropriate Treatment for Amyotrophic Lateral Sclerosis

When evaluating a long term disability claim caused by ALS, the insurance company will want to confirm you’re receiving appropriate treatment.  The insurance company can easily use non-compliance and lack of appropriate care as a reason to deny your ALS long term disability claim. 

Because there is no cure for ALS, treatment aims to alleviate symptoms, prevent unnecessary complications, and slow the rate of progression of the disease.  ALS can cause a range of physical, mental, and social changes.  Therefore, you will likely need a team of specialists to help manage your symptoms and care, improve your quality of life, and prolong your survival.  Some common treatment methods include:


Medications such as Riluzole (Rilutek) and Edaravone (Radicava) are known to slow the progression of ALS.  Your doctor may also prescribe medication to help you deal with your symptoms of muscle cramps/spasms, constipation, fatigue, excessive salivation and phlegm, pain, depression, sleep problems, and uncontrollable outbursts of laughing or crying.

Breathing Care/Therapy

This typically consists of mechanical ventilation devices to help you breathe at night.  If your breathing problems are severe, your doctor may suggest a tube be inserted into your windpipe and connected to a respirator.

Physical Therapy

Physical therapy may help you manage pain and address mobility issues. A physical therapist may help you with low-impact exercises to enhance cardiovascular fitness and overall well-being. They can also help you adjust to mobility aids such as walkers and wheelchairs, and they may suggest devices to make life easier, such as a ramp for your house.

Occupational Therapy  

This treatment is aimed at helping you maintain independence.  For example, occupational therapy can assist in choosing adaptive equipment and assistive technologies to help keep up your daily routines (e.g., with grooming, bathing, eating, dressing, etc.).  An occupational therapist can also help you compensate for hand and arm weakness, for example.

 Speech Therapy

Speech therapy іѕ useful when ALS begins to make it harder to talk. Speech therapists can help by teaching adaptive techniques. They can also teach you other methods оf communication, such as writing and the use of computer-based communications equipment.

Nutritional Support

As ALS progresses, you may have difficulty swallowing food and drinks.  This can make it difficult to get the proper amount of nutrients.  Nutritionists can advise on preparing nutritious meals that are easier to swallow. Unfortunately, suction devices and feeding tubes may be required as your symptoms progress to the later stages of ALS.

Psychological Support

ALS can also take a toll on you mentally and emotionally.  Therefore, it is often helpful to seek psychological treatment for emotional support and to help you adjust.

Disability and Inability to Work Due to ALS

ALS is an extremely disabling and frightening illness which likely will lead to long term disability.   While it may seem obvious why you are unable to work as a result of ALS, your insurance company may not understand the true significance of your symptoms or the impact on your job – especially as your symptoms first begin to develop.  To increase your chances of approval, you can explain how and why each of your symptoms prevents you from performing your job duties.

For example, the weakness, muscle cramping, and twitching in your hands may cause a problem with your fine manipulation and dexterity making it difficult to type on a computer or take notes at a meeting.  The weakness in your legs and feet may cause difficulty walking, stumbling, and increased clumsiness making it difficult or impossible to travel to an important business meeting or arrive on time.  Alternatively, your pain and fatigue may result in problems with attention, concentration, and focus preventing you from following along during a presentation.  Your pain and fatigue may also prevent you from physically completing a full workday.

The slurring of your speech and difficulty projecting your voice can make it difficult for you to give an important lecture, or debate a topic with a colleague.  Worse yet, your uncontrollable outbursts of either laughing or crying can disrupt a business meeting or seminar.  Also, your difficulty eating and drinking may prevent you from entertaining clients and attending luncheons. 

As such, it is often beneficial to explain exactly how your individual symptoms prevent you from performing your job duties by preparing a detailed, written narrative for the insurance company. Make sure your narrative addresses each of your symptoms by listing them separately. 

In addition to your narrative description, when determining whether your ALS is disabling the insurance company will likely want the opinions of your treating doctor(s).  The insurance company may weigh its decision very heavily on your doctor’s opinion – so your doctor’s support is key.

Your doctor’s reports should focus on the frequency and severity of your symptoms, their direct observations of you during your office visits, any objective physical examination findings, and your specific restrictions and limitations that prevent you from work. 

Your narrative and your doctor’s support will go a long way in helping to prove your disability due to Amyotrophic Lateral Sclerosis.


Knowing how to substantiate your ALS claim will significantly increase your chances of approval.  Although ALS is a progressive and fatal disease, your claim must still be supported by sufficient medical evidence and proof of appropriate treatment. It is also important to provide a detailed explanation of how your symptoms prevent you from performing your job duties.  Don’t simply assume the insurance carrier will see the connection.  You must explain it in detail.

Helpful Links and Resources

Northeast ALS Consortіum (NEALS)

National ALS Registry

ALS Association (ALSA)

ALS Charitable Foundation

Compassionate Care ALS

Ready to Talk?

Wiki Topics:

Disability Claim Toolkit & Planner
leave work protected nyc long term disability attorney

Receive Latest Posts

Popular Posts