Progressive bulbar palsy

Progressive bulbar palsy involves the brain stem. The brain stem is the part of the brain needed for swallowing, speaking, chewing, and other functions. Signs and symptoms of progressive bulbar palsy include difficulty swallowing, weak jaw and facial muscles, progressive loss of speech, and weakening of the tongue. Additional symptoms include less prominent weakness in the arms and legs, and outbursts of laughing or crying (called emotional lability).^[1]

Progressive bulbar palsy is considered a variant form of amyotrophic lateral sclerosis (ALS).^[1][2] Many people with progressive bulbar palsy later develop ALS. While there is no cure for progressive bulbar palsy or for ALS, doctors can treat symptoms.

Progressive bulbar palsy is a difficult to diagnose condition. No one test or procedure offers a definitive diagnosis. Diagnosis is largely based upon the person's symptoms, tests that show how well their nerves are working (e.g., an EMG or electromyography), and ruling out other causes for the symptoms. Particularly, stroke and a condition called myasthenia gravis, may have certain symptoms that are similar to those of progressive bulbar palsy and must be ruled out prior to diagnosing this disorder.^[1][3] Testing for acetylcholine receptor-binding antibodies may be helpful in ruling out myasthenia gravis.^[2]

Because of the lack of definitive tests, you may find it helpful to consult with a doctor who is experienced in diagnosing ALS. The ALS Association lists experts and specialty centers through their Web site at: http://www.alsa.org/community/centers-clinics/

Treatments aim to help people cope with the symptoms of progressive bulbar palsy, such as feeding tubes, devices to help with talking, and medicines to treat muscle spasms, weakness, drooling, sleep problems, pain, and depression.^[1][3][2]

The Robert Packard Center for ALS Research at John Hopkins offers further general information on treatment: http://www.alscenter.org/what-is-als/treatment/index.html 

The Mayo Clinic provides information on treatment of ALS in general, which may be helpful: http://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/diagnosis-treatment/treatment/txc-20247219

If you are interested in learning about clinical trials, we recommend that you call the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH) at 1-800-411-1222.

Organizations, such as the ALS Association and Muscular Dystrophy Association are great sources for information on clinical trial opportunities and research.

You can find information about participating in a clinical trial as well as learn about resources for travel and lodging assistance, through the Get Involved in Research section of our Web site.

The following organizations offer information, support, and services to people with progressive bulbar palsy and their loved ones:

Amyotrophic Lateral Sclerosis Association (ALSA)
27001 Agoura Road
Suite 250
Calabasas Hills, CA 91301-5104
Telephone: 800-782-4747 (patient hotline)
Fax: 818-880-9006
E-mail: alsinfo@alsa-national.org
Website: http://www.alsa.org

Les Turner ALS Foundation
5550 West Touhy Avenue
Suite 302
Skokie, IL 60077-3254
Telephone: 888-ALS-1107 (888-257-1107)
Fax: 847-679-9109
E-mail: info@lesturnerals.org
Website: http://www.lesturnerals.org

Muscular Dystrophy Association - ALS Division
3300 East Sunrise Drive
Amyotrophic Lateral Sclerosis
Tucson, AZ 85718-3208
Telephone: 800-572-1717 or 800-344-4863
Fax: 520-529-5300
E-mail: mda@mdausa.org
Web site: http://www.mda.org/disease/amyotrophic-lateral-sclerosis