Living with Amyotrophic lateral sclerosis-parkinsonism-dementia complex
A rare nerve-cell disease with stiffness, tremor, slowed movement, and dementia, found mainly on the Pacific island of Guam.
Understanding Amyotrophic lateral sclerosis-parkinsonism-dementia complex
It typically begins in a person's fifties or sixties. Movement symptoms include rigidity, tremor, and slowed movement, along with dementia. Eye movement signs, loss of smell, and problems with automatic body functions may also occur. GARD says the disease is endemic to the Pacific island of Guam.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Dementia
- Muscle weakness
- Muscle spasms
- Paralysis
- Shrinking of parts of the brain (cerebral atrophy)
- Trouble speaking and swallowing (bulbar palsy)
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
Specialists who may be involved include brain and nervous system specialists.
- 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
- Brain and nervous system specialists (neurologists)
- 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 lists autosomal dominant inheritance, so a changed copy of a gene from one parent can be enough. It doesn't name a gene.
Also known as: amyotrophic lateral sclerosis-parkinsonism-dementia of guam syndrome; amyotrophic lateral sclerosis-parkinsonism/dementia complex 1; amyotrophic lateral sclerosis-parkinsonism/dementia complex type 1; amyotrophic lateral sclerosis, parkinsonism, dementia complex; amyotrophic lateral sclerosis, parkinsonism, dementia of guam syndrome; g-pdc
Patient organizations
- ALS AssociationAmyotrophic lateral sclerosis-parkinsonism-dementia complex · United States
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Perspectives from people navigating life with Amyotrophic lateral sclerosis-parkinsonism-dementia complex.
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