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Glossary
Some of the words used when talking about ALS are hard to pronounce and some have meanings that are not commonly known. If there are other words that you don’t understand, ask any member of the ALS team.

Amyotrophic Lateral Sclerosis (ALS): A-my-oh-tro-fik · LAT-ter-ul · SKLER-oh-sis. A neurodegenerative condition that causes damage to the central nervous system (brain and spinal cord) as well as the peripheral nervous system (nerves that go out from the spinal cord into the body.) Also known as Lou Gehrig’s disease.

Ankle-Foot Orthosis (AFO): Ank-kel · Foot · Or-THO-sis. A brace designed to compensate for weak muscles that hold the foot up. Can prevent tripping and falling.

Anarthria: An-ar-THREE-ah. Loss of speech.

Aphasia: A-fay-ja. Loss of the ability to express and understand language.

Aspiration: Ass-per-A-shun. The entry of mucus, food or liquids into the wind pipe or lungs.

Atrophy: AT-tro-fee. Decrease in size or wasting away.

Augmentative communication: Aug-men-ta-tive · ka-mune-a-kay-shun. Alternative and Augmentative Communication (ACC) involves alternate methods of communicating wants, needs, feelings, and ideas through the use of electronic devices and non-electronic tools. ACC provides a means for expressive and receptive communication for persons with speech software and hardware, head wants, light pointers, mouth sticks, signal systems, telephony equipment, etc.

BiPap: BYE-pap. Also known as bi-level non-invasive positive pressure ventilation. A device that assists breathing by way of a mask that can be taken on and off. It is designed to help get more air into the lungs with each breath.

Denervation: DE-ner-vay-shun. Loss of nerve supply.

Diaphragm: DYE-a-fram. A shelf of muscle under the rib cage that separates the chest from the abdomen. When this muscle contracts, air is pulled into the lungs.

Dysarthria: dis-ARE-three-a. speech that is slow, slurred and difficult to understand that is caused by weakness of the muscles of the mouth and tongue or changes in breathing.

Dysphagia: Dis-FAY-ja. Difficulty swallowing.

Electromyogram (EMG): E-leck-tro-my-oh-gram. Diagnostic test to evaluate how muscles are working. Done with a second diagnostic test, Nerve Conduction Study, which evaluates how nerves are working.

Fasciculations: Fa-SIC-you-lay-shuns. A small involuntary muscle contraction, or twitch, that is visible under the skin.

Fibrillations: Fib-ra-LAY-shuns. (help needed)

Foot Drop: Drop Foot and Foot Drop are interchangeable terms that describe the ability to raise the foot at the ankle. It also causes inability to point the toes toward the body (dorsiflexion) or move the foot at the ankle inward or outward. It is caused by weakness or paralysis of the muscles over the shin bone that are involved in raising the foot.

Hospice: HOS-pis. A philosophy of care that seeks to enable patients to continue an alert, pain-free life and to manage other symptoms as the illness progresses with the goal of dignity and quality at the end of life. Hospice affirms life and does not hasten or postpone death. Hospice care treats the person rather than the disease; it highlights quality rather than length of life.

Intelligibility: In-TELL-la-ja-bill-a-tee. The degree to which speech can be understood.

Lower Motor Neuron Signs. Weakness, atrophy and fasciculations due to nerves dying and failing to supply muscles with messages.

Motor Neuron Disease (MND): a group of progressive neurological disorders that destroy motor neurons, the cells that control voluntary muscle activity such as speaking, walking, breathing, and swallowing. Some MNDs are ALS, Primary Lateral Sclerosis, Progressive muscular atrophy, progressive bulbar palsy, spinal muscular atrophy and Kennedyís disease.

Mulitfocal Motor Neuropathy (MMN): MUL-tee-FOE-cul · MOE-ter · Ner-OP-a-thee. A progressive muscle disorder characterized by muscle weakness, wasting, cramping, and involuntary contractions or twitching of muscles. The disorder can be mistaken for amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) but unlike ALS, it is treatable. It is caused by loss of the insulation that covers nerves in the limbs and is diagnosed by nerve conduction studies that show that this insulation is lost in places.

Percutanious Endoscope Gastrostomy (PEG): Per-que-TANE-ee-us · EN-doe-scop-ik · Gas-TROS-toe-me. A tube that is placed in the stomach to provide a way for nutrition, fluids and medications to enter the body when swallowing is not working properly.

Primary Lateral Sclerosis (PLS): PRI-mary · LAT-ter-al · SKLER-oh-sis. A disorder related to ALS but causing stiffness and slowness of movement only. It is a very rare condition and many times will become ALS after a few years.

Progressive Bulbar Palsy (PBP): Pro-GRESS-iv · BUL-bar · POL-zee. A disorder related to ALS but causing weakness of the muscles used for speech and swallowing only. Eventually the muscles of the limbs become weak as well and ALS develops.

Progressive Muscular Atrophy (PMA): Pro-GRESS-iv · MUSS-que-ler · AT-roe-fee. A disorder related to ALS but causing weakness and wasting only. It follows the same course as ALS and often is lumped into the name ALS.

Respirator: RES-per-ray-ter. A device that protects the wearer from breathing in harmful air. Sometimes confused with “ventilator.”

Rilutek: RIL-you-teck. Brand name of a medication that was approved by the Food and Drug Administration for the treatment of ALS. In studies, the people who took Rilutek lived longer then people who didnít. Rilutek does not reverse any symptoms of ALS.

Riluzole: RIL-you-zole. The generic name of Rilutek.

Sialorrhea: Sye-al-oh-RHEE-ah. An excessive accumulation of saliva in the mouth that can result in drooling.

Spasticity: Spas-TISS-a-tee. Stiffness and slowness of movement resulting from upper motor neuron (UMN) disease.

Speech generating device: Speech · GEN-ner-ray-ting · dee-vice. An electronic device used by an individual to enable him or her to communicate more effectively with others. This device assists an individual in communicating through text, speech or voice output, pictures, or any combination of these.

Superoxide Dismutase (SOD): SU-per-OX-ide · DIS-mu-tase. Mutations in the SOD gene have been shown to cause ALS in some failies. Fmilial ALS (fALS) accounts for only about 10% of all cases of ALS, and SOD gene mutations occur in only about 20% of these families. Thus, SOD gene mutation account for only about 2% of all cases of ALS in people.

Tracheostomy: Tr-ache-ee-OS-toe-me. An opening into the windpipe through the neck created by surgery.

Tube feedings: When an individual is unable to meet their nutritional needs by using their mouth for eating, tube feedings refer to a liquid mixture of nutrients that provide nourishment.

Upper Motor Neuron Signs (UMN): UMNs carry motor information from the brain down the spinal cord and connects with the LMN to cause movement. When UMNís are damaged, it causes stiffness and abnormally fast reflexes, along with other abnormalities that can be seen on the neurologic examination.

Ventilator: Ven-till-LAY-tor. A machine that forces air into the lungs. Ventilation can be invasive, through a tracheostomy tube surgically placed in the throat, or non-invasive, by way of a mask. This is called BiPap when there are different pressures of air when breathing in and out and CPap when the pressure of air is continuous.