Living with Progressive bulbar palsy
A condition that slowly weakens the muscles used for speaking, chewing, and swallowing.
Understanding Progressive bulbar palsy
Motor neurons are nerve cells that control muscles. In this condition, the muscles of the face, tongue, mouth, and throat become weaker over time. In adults, weakness often starts in these muscles and may later involve motor neurons throughout the nervous system. A form called Fazio-Londe syndrome is inherited and occurs in children and young adults.
Signs & symptoms
Symptoms vary from person to person. GARD describes these features:
- Slurred or hard-to-understand speech (dysarthria)
- Trouble swallowing (dysphagia)
- Weak face muscles
- Weak tongue muscles
- Small muscle twitches in the tongue and face (fasciculations)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
ALS Association may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: ALS Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with ALS Association
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet. It notes that Fazio-Londe syndrome, a form seen in children and young adults, is inherited.
Also known as: bulbar palsy; bulbar paralysis; pbp - progressive bulbar palsy
Patient organizations
- ALS AssociationProgressive bulbar palsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Progressive bulbar palsy.
Explore research for Progressive bulbar palsy
Explore actively recruiting Progressive bulbar palsy studies with HealthSpark.
Find actively recruiting studies for Progressive bulbar palsy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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