ALS Parkinsonism Dementia Complex (ALS/PDC) is a neurodegenerative, invariably fatal, disorder known to occur primarily on the island of Guam, the Kii peninsula of Japan, and the coastal plain of West New Guinea. A few cases have been documented elsewhere. The Chamorros of Guam call the disease ‘lytico-bodig.’ Lytico-bodig disease presents itself in two ways:
- Lytico is a progressive paralysis that resembles ALS (amyotrophic lateral sclerosis), and
- Bodig is a condition resembling parkinsonism with occasional dementia.
The combination of ALS and Parkinson’s symptoms is very rare and known to occur in this condition only.
The typical age of onset of (ALS/PDC) is in the 40’s. As the sickness progresses, those afflicted with the disease experience increasing cognitive deficits, spasticity, muscle atrophy, and weakness. These symptoms progressively worsen to a vegetative state with death occurring within 4 -6 years after diagnosis.
There are no definitive characteristics that clearly distinguish ALS/PDC from other degenerative neurological disorders and no specific tests or procedures to diagnose ALS/PDC. Diagnosis is made based on a variety of tests including EMG, nerve conductivity velocity studies, x-rays, spinal taps, urine and blood tests, nerve biopsies, and medical history. Electrophysiological and neuroimaging tests are used to rule out other impairments that may cause similar signs and symptoms.
There is no cure for ALS/PDS. Treatment involves the management of symptoms.
Social Security Administration POMS: DI 23022.660 ALS Parkinsonism Dementia Complex
ALS/PDC meets Social Security Administration (SSA) Medical Listings 11.06, 11.10, 12.02-A and B, and 12.02-A and C.
If you are alleging disability based on ALS/PDC, but are not from the Western Pacific region, you should make sure your diagnosis is solid. Medical proof you present to the SSA for ALS/PDC should include clinical information from the treating primary physician, neurologist, or psychiatrist documenting progressive physical and neurological findings of Parkinson’s Disease and ALS. Dementia also is critical and required for disability evaluation of ALS/PDC. An ‘Activities of Daily Living Report’ or a similar report completed by relative or caregiver may be required.
ALS/PDC is listed under the SSA’s Compassionate Allowance Program, which was launched in 2008 to expedite certain disability claims. Applying for disability benefits under the Compassionate Allowance Program requires the same procedure every applicant must follow when applying for SSA disability benefits; however, you will be notified if your condition is being considered as a compassionate allowance.
Your representative may be able to expedite your disability claim if you have a diagnosis of ALS/PDC.