This dictionary was prepared in the USA, some terms and programs may not be applicable to other Countries. This is meant as a reference only and you should seek the advice of a Medical Professional for any information that you may require.
Activities of daily living. Routine activities carried out for personal hygiene and health (including bathing, dressing, feeding) and for operating a household
AFO
Ankle-Foot-Orthosis. A lower leg brace used to aid walking for PALS that have foot-drop or ankle weakness.
ALS
Amyotrophic Lateral Sclerosis. A chronic, progressive disease marked by gradual degeneration of the nerve cells in the central nervous system that control voluntary muscle movement. The disorder causes muscle weakness and atrophy; symptoms commonly appear in middle to late adulthood, with death in two to five years. The cause is unknown, and there is no known cure. Also called Lou Gehrig's Disease, and Motor Neuron Disease. A Without Myo Muscle Trophic Nourishment Lateral Side (of spinal cord) Sclerosis Hardening, disease, destruction
Adaptive/Assistive Equipment
A special device which assists in the performance of self-care, work or play/leisure activities or physical exercise
Albuterol Inhaler
Albuterol metered dose inhalers that delivers medicine into the lungs for easier breathing as needed. Prescribed by a physician.
Alpha-Tocopherol
Chemical name for biologically active form of Vitamin E.
Alzheimer's Disease
A form of degenerative brain disease resulting in progressive mental deterioration with disorientation, memory disturbance, and confusion and leading to progressive dementia often accompanied by dysphasia and/or dyspraxia. The condition may also give rise ultimately to spastic weakness and paralysis of the limbs, epilepsy, and other variable neurological signs.
Anesthesiologist
A physician trained in administering anesthetics and caring for people who are anesthetized. Anesthetics are drugs or agents used during surgery to prevent the sense of pain. Local anesthesia numbs a small area; general anesthesia produces unconsciousness.
Anterior Horn Cell
Motor neurons, the nerves which provide the initial signal controlling muscle activity
Antidepressants
Medication used to treat depression, a common complaint among PALS.
Aphasia
Loss of the ability to express oneself and/or to understand language. Caused by damage to brain cells rather than deficits in speech or hearing organs.
Apnea
temporary stop in breathing.
Asphyxia
unconsciousness or death produced by failure of the blood to become properly oxygenated in the lungs. This failure may be caused by the inability of air to reach the lungs, as in suffocation, or by paralysis of the nerve centers that control lungs because of inadequate oxygen or respiratory system failure.
Aspiration
When fluid or food enters the lungs through the wind pipe. Can cause a lung infection or pneumonia.
Antioxidant
A chemical compound or substance that inhibits oxidation.
Atrophy
The progressive loss of muscle mass, or wasting, caused by a reduction in the size or number of muscle cells through prolonged disuse. It is one of the later symptoms of ALS.
Attendant Care
Provision of assistance in activities of daily living for a person with disability. Daily number of hours of required assistance, either physical or supervisory.
Augmentative and Alternative Communication
Use of forms of communication other than speaking, such as: sign language, "yes, no" signals, gestures, picture board, and computerized speech systems to compensate (either temporarily or permanently) for severe expressive communication disorders.
Autonomic Nervous System
The branch of the nervous system that controls internal organs in the body, i.e., heart, lungs.
Axon
The usually long process of a nerve fiber that generally conducts impulses away from the body of the nerve cell.
Go to Top
B
Babinski response
A reflex where the big toe flexes toward the top of the foot and the other toes fan out when the sole of the foot is firmly stroked; normal in children but abnormal after about 2 years old. The Babinski's reflex is one of the infantile reflexes; it is normal in children under 2 years old but disappears as the child ages and the nervous system becomes more developed. In people more than 2 years old, the presence of a Babinski's reflex indicates damage to the nerve paths connecting the spinal cord and the brain (the corticospinal tract). Because this tract is right- and left-sided, a Babinski's reflex can occur on one side or on both sides.
BiPAP
A noninvasive respirator to assist with breathing. Often used on ALS patients before breathing problems are severe enough to require a ventilator. Operates at two different pressures, higher for inhaling, lower for exhaling. Affixes to the patient with a small mask, or with nasal "pillows." Often used at night when patient breathing problems are more severe.
Blind double
A form of experiment in which the participants are, to some degree, kept ignorant of the nature and doses of materials administered as specific parts of the experiment. The purpose of the device is, obviously to prevent a prejudiced interpretation of the drug effects observed, and to prevent a presumed knowledge of effects to be expected from influencing the kinds of effects manifested by a subject. Blind experiments are not limited in use to experiments involving only human subjects. Needless to say, both experimenters and subjects may have general knowledge of the purpose, materials and design of the experiment; their ignorance is limited to the nature of individual drug administrations. In a "single-blind" experiment, one participant - usually the subject - is left uninformed. In a "double-blind" experiment two participants - usually the subject and observer - are uninformed.
Blood Brain Barrier
A system of astrocytes and capillaries in the brain that prevents the passage of specific substances. A protective barrier formed by the blood vessels and glia of the brain. It prevents some substances in the blood from entering brain tissue
Bowel Program
A plan for emptying your bowels at the same time every day (or every other day) so that you prevent bowel problems and maintain control over your bowel movements. With the progression of ALS, you may be unable to push down with your abdominal muscles, making it harder to empty your bowels. Use of laxatives, enemas, stool softeners, or suppositories may be prescribed.
Brisk Reflex
a condition that describes the deterioration of the upper motor nerve cells
Bulbar
Of, relating to, or characteristic of the medulla oblongata. Bulbar ALS is the type that affects facial muscles, speech, and swallowing.
Bulbar Muscles
the muscles that control the speech, chewing and swallowing.
Go to Top
C
CPAP (Continuous Positive Airway Pressure)
assisted ventilation that supports the person's own respiratory efforts.
CT or CAT scan
Computerized Axial Tomography. An x-ray device linked to a computer that produces an image of a predetermined cross-section of the brain. A special dye material may be injected into the patient's vein prior to the scan to help make any abnormal tissue more evident.
Cannula
the tube part of the tracheostomy tube.
Case Management
Facilitating the access of a patient to appropriate medical, rehabilitation and support programs, and coordination of the delivery of services. This role may involve liaison with various professionals and agencies, advocacy on behalf of the patient, and arranging for purchase of services where no appropriate programs are available.
Catheter
A flexible tube for withdrawing fluids from, or introducing fluids into, a cavity of the body. Frequently used to drain the urinary bladder.
Central Nervous System
The brain and spinal cord.
Cerebral-spinal Fluid (CSF)
Liquid which fills the ventricles of the brain and surrounds the brain and spinal cord.
Charcot, Jean M.
1825-93, (Fr.) neurologist known for work on hysteria, hypnotism, sclerosis. The first to identify ALS as a distinct disorder.
Chronic
Marked by long duration or frequent recurrence.
Clinical nurse specialist
A registered nurse with an advanced degree in a particular area of patient care; e.g., neurosurgery clinical nurse specialist.
Clonus
An abnormality in neuromuscular activity characterized by rapidly alternating muscular contraction and relaxation.
Condom catheter
A soft latex, self-adhesive male external (non-invasive) catheter that is connected to a urinary leg or overnight drainage bag.
Constipation
Diminished ability of intestinal muscles to move feces (stool), often resulting in very hard stool. A common problem in ALS.
Cranial Nerves
12 pairs of nerves that exit from the brain
Cuff
the inflatable balloon on some tracheostomy tubes.
Go to Top
D
DME
Durable Medical Equipment. Medical supplies that are durable, not disposable. Insurance companies use this term often. Examples of DME include walkers, wheelchairs, ventilators.
Dietician
An individual trained in diet and nutrition
Dendrite
Extensions from the neuron cell body that take information TO the cell body. A single nerve may possess many dendrites.
Diaphragm
the big muscle below the lungs that controls breathing.
Dopamine
A neurotransmitter found in many areas of the brain. Important for movement and other behavior.
Dorsiflexion
When applied to the ankle, the ability to bend at the ankle, moving the front of the foot upward.
Double Blind
Study in which neither investigators nor subjects know what drug the subject is receiving
Dysarthria
Difficulty in forming words or speaking them because of weakness of muscles used in speaking or because of disruption in the neuromotor stimulus patterns required for accuracy and velocity of speech.
Dysphagia
A swallowing disorder characterized by difficulty in oral preparation for the swallow, or in moving material from the mouth to the stomach. This also includes problems in positioning food in the mouth.
Dysphasia
Language disorder. Inability to speak words which one has in mind or to think of correct words; or inability to understand spoken or written words.
Go to Top
E
EEG
Electroencephalogram. A procedure that uses electrodes on the scalp to record electrical activity of the brain. Used for detection of epilepsy, coma, and brain death.
EMG
Electromyography. An insertion of needle electrodes into muscles to study the electrical activity of muscle and nerve fibers. It may be somewhat painful to the patient. Helps diagnose the extent and type of damage to motor neurons. The electrical potentials from muscle fibers are displayed both on a CRT screen and through a speaker. One of the definitive tests for ALS. More information about EMG can be found at the following website: http://www.medicinenet.com
Edema
Collection of fluid in the tissue causing swelling.
Emotional Lability
Exhibiting rapid and drastic changes in emotional state (laughing, crying, anger) inappropriately without apparent reason.
Endotracheal Tube
A tube that serves as an artificial airway and is inserted through the patient's mouth or nose. It passes through the throat and into the air passages to help breathing. To do this it must also pass through the patient's vocal cords. The patient will be unable to speak as long as the endotracheal tube is in place. It is this tube that connects the respirator to the patient.
Epidemiology
The study of the distribution of disease and its impact upon a population, using such measures as incidence, prevalence, or mortality.
Etiology
The study of the cause of a disease.
Extended Care Facility-Basic
Residential facility which supplies 24-hour nursing care and supervision and assistance with activities of daily life.
Extended Care Facility-Skilled
A residential facility for the patient who requires 24-hour nursing care (IV, intramuscular injections, special feeding tubes, skin care, oxygen) and rehabilitative therapy, such as physical therapy, occupational therapy, or speech therapy on a less intensive basis than as an inpatient in a comprehensive rehabilitation center. An extended care facility can be a short-term alternative (a few months) prior to placement at home (with outpatient therapy) or in a nursing home.
Extended nursing homehealth care
LPN's and RN's that are scheduled for extended hours to come into your home to take care of patient who requires skilled nursing care, as directed by a physician.
Extubation
The removal process from short term ventilation (intubation).
Go to Top
F
FDA
U.S. Food and Drug Administration, the branch of federal government which approves new drugs
FVC
Forced Vital Capacity
Familial
Approximately 5-10% of all cases of ALS are believed to be familial, occurring in clusters of families in which a large number of individuals are affected. The onset of familial MND tends to be earlier than in sporadic ALS.
Fasciculations
Small, involuntary, irregular, visible contractions of individual muscle fibers. Often seen in the legs, arms, and shoulders of PALS
Flaccid
Lacking normal muscle tone; limp.
Flexion
A bent, curved posture.
Foot Drop
Plantar flexion of the foot due to weakness or paralysis of the muscles of lower leg.
Free Radicals
Unstable molecules that transport oxygen. Can be destructive causing a loss of integrity of the membranes.
Go to Top
G
Gait
Pattern of walking
Gastrostomy
The introduction of a feeding tube directly into the stomach through a small opening, for persons who have difficulty, or are unable, to chew or swallow.
Gehrig, Lou
(1903-1941), American professional baseball player, also known as the Iron Horse because he established a record for the most consecutive games played by a professional baseball player, appearing in 2130 games from 1925 to 1939. The record was broken in 1995 by Cal Ripken, Jr., of the Baltimore Orioles. Gehrig was born in New York City. From 1923 until 1939 he played first base for the New York Yankees of the American League (AL). He led the AL five times in runs batted in and set a league record in 1931 of 184 runs batted in. Gehrig was twice voted the league's most valuable player (MVP). Stricken with the spinal disease amyotrophic lateral sclerosis (ALS), which later became known as Lou Gehrig's disease, he retired from baseball in 1939.
Gene
unit of inheritance, a piece of the genetic material that determines the inheritance of a particular characteristic or group of characteristics. Genes are carried by chromosomes in the cell nucleus and are arranged in a line along each chromosome. The genetic material is deoxyribonucleic acid (DNA), a molecule that forms the chromosome's backbone. Because the DNA in each chromosome is a single, long, thin, continuous molecule, the genes must be parts of that molecule; and because DNA is a chain of subunits known as nucleotide bases, each gene includes many bases. Four different kinds of bases— adenine, guanine, cytosine, and thymine— exist in the chain, and their sequence in a gene determines its properties.
GI Tube
A tube inserted through a surgical opening into the stomach. It is used to introduce liquids, food, or medication into the stomach when the patient is unable to take these substances by mouth.
Glutamate
Glutamate is one of the most common amino acids found in nature. It is the main component of many proteins and peptides, and is present in most tissues. Glutamate is also produced in the body and plays an essential role in human metabolism. As the primary excitatory neurotransmitter in the mammalian CNS, L-glutamate is present at a majority of synapses. Overstimulation of these same receptors is thought to underlie the neuronal damage associated with a wide variety of neurological insults and diseases, including amyotrophic lateral sclerosis, lathyrisms, and Alzheimer's disease.
Glutamine
A nonessential amino acid, C5H10N2O3, occurring widely in plant and animal tissue and produced commercially for use in medicine and biochemical research.
Growth factor
A naturally occurring protein chemical that stimulates cell division and proliferation. It is produced by normal cells during embryonic development, tissue growth, and wound healing.
Guam
An island nation in the Pacific in which a high-incidence focus of ALS and Parkinsonism has been extensively researched. A number of prominent causative hypotheses have been inconclusively studied, including cycad poisoning and mineral deficiency
Guillain-Barr Syndrome
A syndrome of acute onset and often a rapid progression giving rise to muscular weakness beginning often in the proximal limb muscles of both the upper limbs, but sometimes producing ascending weakness. Sensory symptoms are common but objective sensory loss, though sometimes severe, is more often slight or even absent.
Go to Top
H
Hawking, Stephen William
(1942- ), British theoretical physicist, born in London. He is known for attempting to unite general relativity theory with quantum mechanics and for contributions to cosmology. Hawking's research indicates that general relativity supports the big bang theory of the creation of the universe. He has also done much work on the black hole concept and written A Brief History of Time (1988). Hawking has amyotrophic lateral sclerosis.
Heavy Metals
Lead, Mercury. If present in sufficient quantities in a person's body, can cause symptoms of weakness, wasting, increased reflexes, and muscle twitching, signifying involvement of both upper and lower motor neurons
Health maintenance organization (HMO)
A risk-bearing organization with management responsibility for providing comprehensive health services, with an emphasis on preventive care, on a prepayment or capitated basis to voluntarily enrolled people in a designated population. Services are provided at an HMO-owned facility. HMOs operate as staff model programs.
Hospice
Hospice is a multidisciplinary team approach to the care of terminally ill patients. Nurses, Social Workers, Pharmacists, specially trained Home Health Aides and "Sitters" work together to provide comfort and relief to terminally ill patients and their families during the last months of life.
Hypertonicity
a condition characterized by a decrease or loss of normal muscle tone due to the deterioration of the lower motor nerve cells. See muscle tone.
Hyporeflexia
weak or absent muscle response when a normal stimulus is applied.
Hypoxia
Insufficient oxygen reaching the tissues of the body.
Go to Top
I
Incidence
The occurrence of new cases of a condition. The incidence rate describes the frequency with which cases are identified. Incidence is commonly measured in new cases per 1,000 (or 100,000) of population at risk, per year. The incidence of ALS typically varies between 1 and 4 new diagnoses per 100,000 of population per year in Western nations and is much lower in developing nations.
Informed consent
The right to have information explained to you so that you fully understand and agree to the nature of the proposed treatment.
Intramuscular
Into a muscle.
Intrathecal
Injection into the sub-arachnoid space of the meninges. Usually done by lumbar puncture.
Intubation
The temporary process of a tube connected to a ventilator inserted into a patient's airway through the mouth. Used for short term (emergency) ventilation needs.
Irradiation
Treatment by ionizing radiation, such as x-rays, or radioactive sources such as radioactive iodine seeds.
Go to Top
L
Lability
State of having notable shifts in emotional state (e.g., uncontrolled laughing or crying).
Leg Bag
A small, thick plastic bag that can be tied to the leg and collects urine. It is connected by tubing to a catheter inserted into the urinary bladder.
Lesion
Injury caused by destruction of tissue.
Limb-onset
Refers to the type of ALS where initial symptoms appear in the limbs. The most common form of ALS, the other type being bulbar-onset
Lower Motor Neuron
nerve cells starting at the spinal cord or brain stem and ending at the muscle fibers. The loss of lower motor neurons leads to weakness, twitching of muscles (fasciculations), and loss of muscle bulk (atrophy).
Go to Top
M
MND
Motor Neuron Disease, or Motor Neurone Disease. Generally refer to amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's Disease. MND can also refer to other anterior horn cell diseases including Werdnig-Hoffman disease (or infantile spinal muscular atrophy), spinal muscular atrophy (juvenile Kugelberg Welander and adult forms)
MRI
Magnetic resonance imaging. A medical diagnostic technique that creates images of the body using nuclear magnetic resonance. A versatile, powerful, and sensitive tool, MRI can generate thin-section images of any part of the body from any angle, without surgical invasion and in a relatively short period of time. MRI gives biomedical and anatomical information that may allow early diagnosis of many diseases. While undergoing MRI, a patient is placed in a cylindrical magnet that surrounds the body with a magnetic field. MRI next stimulates the body with radio waves and then "listens" to the body's electromagnetic transmissions. The transmitted signal is used to construct internal images of the body. In current medical practice, MRI is preferred for diagnosing most diseases of the brain and central nervous system. MRI scanners also provide imaging supplementary to X-ray images because MRI can distinguish soft tissue in both normal and diseased states.
Managed care
Provision of health care in which access, cost, and quality are controlled by direct intervention before or during service. Programs rely on primary care physicians to manage patient care and control costs; they encourage the use of case managers to plan and accelerate high-cost care when it is necessary; and they promote arrangements between payer and providers to minimize health care costs whenever possible. Management information systems are available to track data. Quality management programs and fiscal solvency are required. The goal is a comprehensive system where patients get medically necessary care in the most cost-effective manner while maintaining quality and member satisfaction.
Median survival
Median means the middle value. An equal number of people live longer as die earlier than the median.
Medulla
Part of the brain stem important for breathing, respiration and other behaviors.
Motor Neuron
A neuron that conveys impulses from the central nervous system to a muscle, gland, or other effector tissue.
Muscle
Tissue of the animal body with the ability to contract, usually in response to a stimulus from the nervous system. The basic unit of all muscle is the myofibril, a tiny, threadlike structure made of proteins. Muscle tissue is classified as smooth, skeletal, or cardiac. Smooth muscles are involuntary muscles found in the skin, internal organs, reproductive system, major blood vessels, and excretory system. Stimuli for the contractions of smooth muscles are controlled by the autonomic nervous system. After prolonged disuse, muscles may atrophy (diminish in size) and become weaker. In conditions such as paralysis, the muscles may become reduced to a fraction of their normal size.
Muscle Atrophy
loss of muscle fiber volume characterized by a visible decrease in muscle size. This occurs because muscles no longer receive impulses, or "messages," from nerve cells
Muscle Tone
Used in clinical practice to describe the resistance of a muscle to being stretched. When the peripheral nerve to a muscle is severed, the muscle becomes flaccid (limp). When nerve fibers in the brain or spinal cord are damaged, the balance between facilitation and inhibition of muscle tone is disturbed. The tone of some muscles may become increased and they resist being stretched--a condition called hypertonicity or spasticity.
Multiple Sclerosis
A chronic degenerative disease of the central nervous system in which gradual destruction of myelin occurs in patches throughout the brain or spinal cord or both, interfering with the nerve pathways and causing muscular weakness, loss of coordination, and speech and visual disturbances. It occurs chiefly in young adults and is thought to be caused by a defect in the immune system that may be of genetic or viral origin.
Muscular Dystrophy
Any of a group of genetically determined, primary degenerative myopathies of unknown medical causes, characterized by various patterns of selective atrophy and weakness of the voluntary muscles, leading as a rule to progressive disability.
Myasthenia Gravis
A neuromuscular disorder of autoimmune origin in which weakness occurs in certain muscle groups or less often, throughout the skeletal musculature and this is greatly increased by exertion of repeated contraction of the affected muscles. In some cases the disease is limited to the external ocular muscles, resulting in an inability to control the position of the eye, but more often the weakness is evident in the muscles of limbs and trunk.
Myelin Sheath
A complex fatlike substance forming a sheath around the axons of certain nerves. Composed of lipids and protein. Allows nerves to conduct rapidly and efficiently.
Myotrophin
An experimental drug used to treat ALS. Mixed research results have delayed Myotrophin's approval by the FDA.
Go to Top
N
NCV
(nerve conduction velocity) Electrodiagnostic tests measurements determine the time required for an impulse (evoked by electrical stimulation) to traverse a known length of nerve. In ALS, this speed is usually normal, but occasionally may be slightly slowed. Significant slowing indicates damage to peripheral nerves, and suggests a cause other than ALS.
Nebulizer
a machine that puts moisture (fine particles) and/or medicine directly into the lungs.
Nerves
Bundles of axons in the peripheral nervous system enclosed in a sheath of connective tissue.
Nervous System
The system of cells, tissues, and organs that regulates the body's responses to internal and external stimuli. In vertebrates it consists of the brain, spinal cord, nerves, ganglia, and parts of the receptor and effector organs.
Neurologist
A physician who specializes in the nervous system and its disorders.
Neurology
The medical science that deals with the nervous system and disorders affecting it.
Neuromuscular
Of, relating to, or affecting both nerves and muscles.
Neuromuscular junction
A synapse between a nerve cell and a muscle
Neuron
Neurons are the nerve cells which make up the central nervous system of which the brain is the major part. The consist of a nucleus, a single axon which conveys electrical signals to other neurons and a host of dendrites which deliver incoming signals.
Neuropathologist
A pathologist who establishes the diagnosis in diseases of the nervous system by careful microscopic examination of the tissue
Neurotransmitter:
A complex molecule which acts as a chemical messenger for conveying electrical signals between neurons at synaptic points. Chemicals that transmit information across the synapse to communicate from one neuron to another.
Non-ambulatory
Not able to walk.
Nucleus
The center of the cell containing the genetic information (genes and chromosomes, DNA, etc).
Nurse practitioner
A registered nurse with advanced training in a particular area of health care, e.g., pediatric nurse practitioners have additional education in the care of children.
Nursing visits
A nurse from a homehealth care agency, that comes into your home for short visits to do vitals and assessments or other specialized cares for a patient, as directed by a physician.
Go to Top
O
Occupational Therapy
Occupational Therapy, rehabilitative therapy that uses the activities of everyday living to help people with physical or mental disabilities function independently at home and in the workplace . It differs from physical therapy, which deals chiefly with restoration of strength, endurance, coordination, and range of motion through exercise, heat or cold therapy, and massage. Occupational therapy focuses on helping people find ways to master everyday activities. It includes teaching someone with swallowing difficulty how to eat and drink; showing someone how to use special tools to put on shoes and socks, close zippers, and button shirts and blouses; and showing someone in a wheelchair how to do cooking and housekeeping from a seated position.
Onset
The time of appearance of the first symptoms of a condition, prior to seeking diagnosis.
Orthosis
Splint or brace designed to improve function or provide stability.
Orthotics
The science that deals with the use of specialized mechanical devices to support or supplement weakened or abnormal joints or limbs.
Go to Top
P
PALS
Person with ALS
PBP
Progressive Bulbar Palsy. A form of MND resulting in difficulty in speech and swallowing
Palliative care
Caring for a patient by maintaining the best quality of remaining life. Also offering support and guidance to the patient and family.
Paralysis
Loss of voluntary movement in a part of the body, caused by disease or injury anywhere along the motor-nerve path from the brain to the muscle fiber (see Nervous System). Paralysis may result from injury, poisoning, infection, hemorrhage, blocked blood vessels, or tumors. Permanent paralysis results from extensive damage to nerve cells or to a nerve trunk; severely damaged nerve cells cannot regenerate. People with permanent paralyses may be helped by physical therapy and rehabilitation procedures. Among well-known paralytic conditions are ALS, poliomyelitis (previously known as infantile paralysis), cerebral palsy, and multiple sclerosis.
Paraplegia
Flaccid or spastic paralysis of the lower limbs. If caused by a spinal cord lesion there is also associated paralysis of the lower trunk and sphincters.
Parkinson's Disease
The condition occurs in two principle forms. One is the idiopathic (without a specific medical cause) form or paralysis agitans (involuntary movements), which usually develops in middle or late life with static tremor of the limbs, increasing plastic rigidity of the limbs and trunk, and akinesia (loss of initial responsiveness of the muscles) or bradykinesia (slow movements). The face is often masklike, there is a progressive stoop, the voice becomes slow and monotonous, the gait slow and shuffling, and there may be associated autonomic disturbances. The other form is similar but also dementia occurs.
Persistent Vegetative State (PVS)
A long-standing condition in which the patient utters no words and does not follow commands or make any response that is meaningful.
Physical Therapy
Scientific physical procedures used in the treatment of patients with a disability, disease, or injury, to achieve and maintain functional rehabilitation and to prevent malfunction or deformity. Treatments are designed to minimize physical disability, to hasten recovery, and to contribute to the patient's comfort and well-being. Physical therapy is prescribed for patients with varied orthopedic, neurological, vascular, and respiratory conditions. The physical therapist evaluates components of movement, including: muscle strength, muscle tone, posture, coordination, endurance, and general mobility. The physical therapist also evaluates the potential for functional movement, such as ability to move in the bed, transfers and walking and then proceeds to establish an individualized treatment program to help the patient achieve functional independence.
Placebo
An inactive substance given as a substitute for an active drug, usually as a treatment for a control group in an experiment. Also called a 'dummy' or 'sugar pill' (Latin: I will satisfy).
Placebo effect
Symptom or change of condition seen when a placebo is given; not attributable to an active drug agent
Preferred provider organization (PPO)
A term applied to a variety of direct contractual relationships between hospitals, physicians, insurers, employers, or third-party administrators for a network in which providers negotiate with group purchasers to provide health services for a defined population at a negotiated rate. The preferred providers are often subject to other stipulations regarding the monitoring of utilization and quality of care.
Primary care
Health services, including preventive care, provided by a family practitioner, pediatrician, internist, or obstetrician/gynecologist in an ambulatory setting.
Primary Lateral Sclerosis (PLS)
a progressive neurological disease in which the upper motor nerve cells deteriorate. If the lower motor neurons are not affected two years, the disease usually remains a pure upper motor neuron disease.
Prognosis
The outlook, or considered probable course, for a patient
Progressive Bulbar Palsy (PBP)
also known as "Bulbar ALS"; a progressive neurological condition that starts with difficulties speaking, chewing and swallowing due to lower motor nerve cell deterioration. This disorder affects about 25% of all people with ALS.
Progressive Muscular Atrophy (PMA)
a progressive neurological disease in which the lower motor nerve cells (neurons) deteriorate. If the upper motor neurons are not affected within two years, the disease usually remains a pure lower motor neuron disease.
Pseudobulbar Palsy
a condition that is characterized by difficulties with speech, chewing and swallowing. These symptoms resemble those of bulbar palsy, but this condition is also characterized by spontaneous or unmotivated crying and laughing.
Pulmonary
An adjective meaning ‘to do with the lungs'.
Pulse Oximeter
machine that monitors the oxygen saturation of the blood using an infrared detector placed across a capillary bed such as a digit or ear.
Go to Top
Q
Quality of life
Refers to the level of comfort, enjoyment, ability to pursue daily activities. Often used in discussions of treatment options.
R
Range of Motion (ROM)
Refers to movement of a joint (important to prevent contractures).
Reflex
Automatic response to a stimulus.
Registered nurse (RN)
A trained medical professional who assists people in health care under the direction of a physician.
Resident
A medical doctor who has completed medical school and internship, and is receiving training in a specialized area. Completion of a residency program is required for board certification in a medical or surgical specialty
Respiration
Breathing. To inhale and exhale
Respirator
Mechanical device for artificial respiration include the portable resuscitator and the heart-lung machine used to maintain oxygen level in the blood during heart surgery. Continued severe breathing difficulties may require help from a mechanical ventilator, which forces air into the lungs through a tube inserted into the nose, the mouth, or a slit in the trachea.
Respiratory System
The respiratory system supplies oxygen to cells and releases carbon dioxide. In the lungs, oxygen enters tiny capillaries, where it combines with hemoglobin in red blood cells that carry it to the tissues. Simultaneously, carbon dioxide passes through capillaries into the air contained in the lungs. Inhaling draws air that is higher in oxygen and lower in carbon dioxide into the lungs; exhaling forces out air that is high in carbon dioxide and low in oxygen.
Respiratory Therapy
Respiratory therapists are licensed health professionals who use sophisticated diagnostic, therapeutic, and life support equipment. They provide ventilatory life support, administer medical gases and CPR, measure flowrates, pressures, electrocardiograms and arterial blood gases, and develop respiratory care plans.
Rilutek
The only FDA-approved drug available to treat ALS.
Riluzole
The generic name of the only FDA-approved drug available to treat ALS.
Go to Top
S
SOD
See superoxide dismutase
Sanofi
A French pharmaceutical company which is in the process of the third phase of study on a drug to slow the effects of ALS.
Sclerosis
a. A thickening or hardening of a body part, as of a nerve, especially from excessive formation of fibrous interstitial tissue. b. A disease characterized by this thickening or hardening.
Side Effect
A drug's effect that is different from the beneficial effect for which the drug is being taken.
Social worker
An individual, usually with a university degree in social work, who provides counsel and aid to individuals with emotional and family problems.
Spasticity
An involuntary increase in muscle tone (tension) that occurs following injury to the brain or spinal cord, causing the muscles to resist being moved. Characteristics may include increase in deep tendon reflexes, resistance to passive stretch, clasp knife phenomenon, and clonus
Speech therapist
An individual trained to assist patients in restoring or maintaining speech and communication functions
Spinal Cord
Part of the central nervous system extending from the base of the skull through the vertebrae of the spinal column. It is continuous with the brain stem, and like the brain it is encased in a triple sheath of membranes. Thirty-one pairs of spinal nerves arise from the sides of the spinal cord. The spinal cord carries information from the body's nerves to the brain and signals from the brain to the body.
Spinal Muscular Atrophy (SMA)
neurological disease in which only the lower motor nerve cells are affected.
Spirometer
An instrument to measure the amount of air taken into and exhaled from the lungs
Spondylosis
Cervical spine disease. May sometimes be confused with AlS. due to pressure on the spinal cord and the nerve roots, this condition may give signs of weakness, wasting, and muscle twitching of the arms, along with increased stiffness in the legs.
Sporadic
Having no known cause. Approximately 80-95% of all cases of ALS are sporadic, occurring in individuals with no familial history of the condition.
Suctioning
vacuuming up mucus in the tracheostomy tube.
Superoxide Dismutase
(SOD) Superoxide dismutase is an enzyme that inactivates free radicals, protecting cells from damaging chemical reactions. The gene identified in familial ALS codes for this enzyme.
Synapse
The junction of an axon of one neuron and a dendrite of another. The passing of a signal across this gap is mediated by neurotransmitter chemicals.
Go to Top
T
Toxin
A poisonous substance.
Trach
short for tracheostomy tube.
Trachea
The section of the mammalian respiratory tract located in the neck. Commonly called the windpipe, the trachea is formed of numerous half-rings of cartilage, one above another, connected by muscular and fibrous tissue. It is lined internally with mucous membrane.
Tracheostomy
A surgical opening at the front of the throat providing access to the trachea or windpipe to assist in breathing.
U
Upper Motor Neuron
nerve cells originating in the brain's motor cortex and running through the spinal cord. The loss of upper motor neurons causes stiffness, cramping, and weakness.
V
Ventilator
respirator machine that breathes for patients who have lost breathing muscle function, as in later term ALS. A ventilator forces air into the lungs through a tube inserted into the nose, the mouth, or a slit in the trachea.
Vital Capacity
The amount of air that can be forcibly expelled from the lungs after breathing in as deeply as possible.
Go to Top
