Living with Frontotemporal dementia with motor neuron disease
A type of frontotemporal dementia with symptoms of motor neuron disease, such as muscle wasting, starting in adulthood.
Understanding Frontotemporal dementia with motor neuron disease
It starts gradually, between ages 38 and 78, with personality changes, uninhibited behavior, irritability, memory difficulties, and emotional changes. Speech problems can lead to loss of speech. It also includes muscle wasting like that seen in amyotrophic lateral sclerosis (ALS). The disease is progressive.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Personality and behavior changes
- Memory and thinking problems
- Hallucinations or depression
- Slurred speech (dysarthria)
- Muscle wasting
- Trouble swallowing (dysphagia)
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 and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Association for Frontotemporal Degeneration may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Association for Frontotemporal Degeneration
- 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 The Association for Frontotemporal Degeneration
- 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
Changes in genes cause it. It is autosomal dominant, which means one changed copy of a gene is enough. GARD doesn't name the gene.
Also known as: amyotrophic lateral sclerosis with frontotemporal dementia; frontotemporal dementia with als; frontotemporal dementia with amyotrophic lateral sclerosis; ftd-als; ftd-mnd; ftdals
Patient organizations
- The Association for Frontotemporal DegenerationFrontotemporal dementia with motor neuron disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Frontotemporal dementia with motor neuron disease.
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