Can I Get Social Security Disability Benefits for Progressive Bulbar Palsy?

Progressive bulbar palsy (PBP) is a severe neurological condition that involves the brain stem, the part of the brain needed for swallowing, speaking, chewing, and other functions. PBP is part of a group of neurological disorders known as motor neuron diseases, in which the nerves of a part of the brain are destroyed. Some experts consider PBP to be a variant of the more commonly known condition of ALS (also known as amyotrophic lateral sclerosis or Lou Gehrig's Disease). In fact, some people with PBP will eventually develop the more widespread symptoms of ALS.

What Are the Symptoms of Progressive Bulbar Palsy?

Some of the common symptoms of progressive bulbar palsy include difficulty swallowing, a weakened gag reflex, weak jaw and facial muscles, progressive loss of speech, and weakening of the tongue. Additionally, some people with PBP have noticeable weakness in their arms and legs or outbursts of laughing and crying (called "emotional lability" or the "pseudobulbar affect"). Because PBP patients have such difficulty swallowing, they sometimes accidentally inhale food and saliva into the lungs, which can lead to choking or pneumonia.

Diagnosis. Progressive bulbar palsy is a difficult-to-diagnose condition, with no single test or procedure that can confirm the diagnosis. A doctor will make a diagnosis largely based on a person's symptoms and tests that show how well the nerves are working (such as an electromyography (EMG) or nerve conduction study (NCS)), after ruling out other causes for the symptoms. (Patients with myasthenia gravis, a history of stroke, or other neurological conditions can have similar symptoms, so doctors need to rule out those conditions before diagnosing PBP.) This is why neurologists who specialize in diagnosing and treating ALS are usually needed to diagnose PBP.

Prognosis. Sadly, as with ALS, there is no cure for PBP, and the symptoms often get worse with time. The goal of treatment is to make people more comfortable and help them cope with the symptoms. For instance, feeding tubes help with eating, devices help with talking, and medicines can treat muscle spasms, weakness, drooling, sleep problems, pain, and depression.

Does Progressive Bulbar Palsy Qualify Me for SSDI?

Despite the devastating nature and poor prognosis of this disease, the pathway to getting approved for Social Security disability insurance (SSDI) can be fairly straightforward for this condition. As with other severe medical conditions, the key factors are: what types of symptoms and limitations does the condition cause, and do those symptoms and limitations cause a person to be unable to work a full-time job on a consistent basis?

Certainly, a condition as severe and devastating as PBP seems like it would make a person disabled from working any type of full-time job, especially as the condition progresses and worsens. Unfortunately, getting disability benefits is never as simple as common sense might suggest. Generally, patients with PBP have two paths to establish disability from PBP.

Meeting a Disability Listing for Progressive Bulbar Palsy

After Social Security sees that you're not working and agrees you have an impairment (a loss of function) that is at least severe, Social Security will determine if the impairment meets or "equals" a "listing," or "listed impairment." Social Security has a list of impairments and conditions that are considered disabling by their very nature, based on the significant symptoms and limitations they produce.

A common misconception, however, is that if you have the same diagnosis as a listed impairment, then you automatically meet the listing and are therefore disabled. However, each listing has specific and rigid medical criteria that must be satisfied in order for you to be found disabled under the listing. PBP is no exception.

Progressive bulbar palsy falls into the "neurological disorders" category of the impairment listings. (But if PBP has caused breathing problems, Social Security might also evaluate the impairment under the relevant respiratory disorder listings.)

While there is no specific neurological listing for PBP by itself, Social Security will generally evaluate it under listing 11.22, for motor neuron disorders other than ALS, or under listing 11.17, for neurodegenerative disorders. In order for a motor neuron disorder such as PBP to meet or equal the listing for motor neuron disorders, your symptoms and limitations must fall into one of the following three sets of medical criteria:

• Weakness in the bulbar muscles (responsible for controlling the tongue, jaw, and throat) that results in breathing or swallowing impairments requiring either:
  • a ventilator for acute respiratory failure, or
  • supplemental nutrition, either via a gastric feeding tube or intravenously, via a central venous catheter.

OR

• The inability to control the movement of at least two extremities (either an arm and a leg or two arms or two legs). This difficulty must result in an extreme limitation in the ability to:
  • stand up from a seated position
  • balance while standing or walking, or
  • use the arms.

OR

• A "marked" limitation in physical functioning and a "marked" limitation in mental functioning.
• Having a marked limitation in physical functioning means being seriously limited in the ability to independently start, sustain, or finish any work-related activities. (Marked means worse than moderate, but less than extreme.) Work-related activities include the ability to use your arms and hands and the ability to balance, stand, and walk.
• Having a marked limitation in mental functioning means being seriously limited in one or more of the following areas:
  • understanding, remembering, or applying information (the ability to understand instructions, remember procedures, learn new things, identify and fix problems, and use judgment in making decisions)
  • interacting with others (the ability to use socially appropriate behaviors, ask for help when needed, and respond to criticism without irritability or argumentativeness)
  • concentrating, persisting at tasks, or maintaining pace in performing tasks (the ability to complete tasks in a timely manner, avoid distractions while working, and sustain regular attendance), and/or
  • adapting or managing oneself (being able to respond to demands, adapt to changes, distinguish between acceptable and unacceptable work performance, and maintain personal hygiene).

The only way to prove that your condition meets the above requirements is by providing substantial medical records from your treating doctor(s) that show you meet these physical and/or mental criteria. That's why it's important to make regular appointments with your doctor (preferably a neurologist) and to tell your doctor about all of your limitations. In some instances, you might have to ask your doctor to provide a supplemental form, report, or letter that describes aspects of your diagnosis and impairment that might not be noted in detail in the medical records themselves.

Can I Get My Claim Expedited If I Meet the Listing?

If your progressive bulbar palsy does meet the above requirements of listing 11.17 or 11.17, chances are you will also qualify to receive your benefits much sooner under the Compassionate Allowance Program. Social Security uses its Compassionate Allowances List to quickly identify the most serious illnesses or conditions that will qualify an individual for disability (such as PBP, ALS, other types of brain conditions, and advanced cancers).

The Compassionate Allowance Program allows benefits to be awarded and paid quickly, to ensure that disabled claimants are able to start receiving monetary payments before their conditions progressively worsen. When you file your claim, if you alert Social Security that you think you have a condition that qualifies as a Compassionate Allowance, this will flag the claim for a special type of review, with an expedited determination of disability and payment of the disability award.

Can I Get Disability Benefits for PBP Without Meeting the Listing?

On the off chance that a person diagnosed with PBP doesn't meet or equal the listing, the other path to being found disabled is to prove, through medical evidence as well as testimony and other statements, that you are suffering from such serious and significant symptoms and limitations that you can't consistently perform any type of full-time work. This path requires you to show that you don't have the physical capacity (ability) for any level of work or that you don't have the mental capacity to work even a simple, unskilled job.

For example, you won't meet the above listing if you don't need a feeding tube or ventilator, you don't have problems using your arms or legs, and you don't have both a severe mental limitation and a severe physical limitation. But, you might still find you can no longer work because you have trouble speaking and you cry or laugh at inappropriate times, particularly when you're under stress.

In theory, because of the progressive and deteriorating nature of PBP, simply having a diagnosis will eventually make someone disabled, but because Social Security's requirements for proving disability are part of a multi-step process that can be quite stringent at times, you need to submit well-documented medical records and other evidence showing that your symptoms are already keeping you from being able to keep a job—in other words, that you are already disabled. For more information, see our article on getting disability benefits based on a medical-vocational allowance.

How Can I Apply for Disability Benefits Based on PBP?

If you're applying for Social Security disability insurance (SSDI), you can file your whole claim online on Social Security's website. Most individuals filing for SSI only can't file the entire application online, but they can get started on Social Security's website. If you're not comfortable online, you can call Social Security at 800-772-1213 to start your claim. You can also contact your local field office by using the Social Security field office locator and entering your zip code to find your local field office. For more information on applying for either SSDI or SSI, see our article on applying for Social Security disability benefits.

If you'd like help with your application, think about working with an SSDI expert. Most disability lawyers and advocates will give you a free phone consultation to evaluate if your PBP qualifies for benefits.

_{Updated January 10, 2022}