Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
ALS - Amytrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease, is
a progressive and fatal neuromuscular disease marked by gradual
degeneration of the nerve cells in the central nervous system that
control voluntary muscle movement.
* Symptoms commonly appear in middle to late adulthood.
* The cause of ALS is unknown
* There is no known cure
BFS - Benign fasciculation syndrome (BFS) is a neurological disorder characterized by fasciculation (twitching) of various voluntary muscles in the body. The twitching can occur in any voluntary muscle group but is most common in the eyelids, arms, legs, and feet. Even the tongue may be affected. The twitching may be occasional or may go on nearly continuously. Any intentional movement of the involved muscle causes the fasciculations to cease immediately, but they may return once the muscle is at rest again. (BFS Forum)
BIPAP - Known as Non-Invasive Ventilation.
* BiPAP or VPAP (Bilevel/Variable Positive Airway Pressure) provides
two levels of pressure: Inspiratory Positive Airway Pressure (IPAP) and
a lower Expiratory Positive Airway Pressure (EPAP) for easier
exhalation.
Bulbar ALS - Bulbar ALS is a type of ALS where onset symptoms are in the
facial muscles, affecting speech and swallowing.
CALS - Caregiver for a person with ALS
Clonus - from Greek for "violent, confused motion" - a series of involuntary muscular contractions due to sudden stretching of the muscle.
Familial ALS - A progressive neurological disease that affects more than one
member of the same family.
* This type of ALS accounts for a very small number
of people with ALS (5 to 10 percent).
Fasciculation - Small, involuntary, irregular, visible contractions of individual
muscle fibers. Often seen in the legs, arms and shoulders of PALS.
This is often described by people with ALS as "persistent rolling
beneath the skin."
FVC - Forced Vital Capacity. A means of measurement of a persons lung
(breathing) capacity. The numbers are a percentage based on gender, age, weight, height and whether a person is a smoker or not. So if you get a result of 80%, for example, it means that you are able to exhale and inhale 80% of the volume that you should be able to based on those factors listed above.
Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means "grave muscle weakness." With current therapies, however, most cases of myasthenia gravis are not as "grave" as the name implies. In fact, for the majority of individuals with myasthenia gravis, life expectancy is not lessened by the disorder.
The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Certain muscles such as those that control eye and eyelid movement, facial expression, chewing, talking, and swallowing are often, but not always, involved in the disorder. The muscles that control breathing and neck and limb movements may also be affected.
MMN - Multifocal motor neuropathy (MMN) is a progressive muscle disorder that displays
itself withy muscle weakness in the hands (and usually the hands only), showing differences
from one side of the body to the other and only includes specific muscles.
MMN affects
men more than women. Symptoms of MMN include muscle cramping, muscle wasting, and
involuntary contractions or twitching of the leg muscles.
The disorder is often mistaken
for amyotrophic laterial sclerosis (ALS, or Lou Gehrig's disease) by medical practioners,
but unlike ALS, MMN is treatable.
Early diagnosis allows of MMN allows patients to
make a quick recovery.
MMN Treatment
Multifocal motor neuropathy treatment can vary.
Some patients experience mild, modest symptoms and require no treatment. Others require
intravenous immunoglobulin (IVIg) or immunosuppressive therapy with cyclophosphamide.
PALS - Person with ALS
PEG - Percutaneous endoscopic gastrostomy tube - a tube placed directly into
the stomach through the abdominal wall to provide another way to
receive nourishment and liquids.
PBP - Progressive Bulbar Palsy - A condition that begins with difficulties in
speaking, chewing and swallowing due to lower motor nerve cell
(neuron) deterioration.
PLS - Primary Lateral Sclerosis
PMA - Progressive Muscular Atrophy - PMA affects only the lower motor
neurons, causing atrophy and fasciculations.
PSP - Progressive Supranuclear Palsy is a neurodegenerative brain disease that has
no known cause, treatment or cure. It affects nerve cells that control walking, balance,
mobility, vision, speech, and swallowing. Five to six people per 100,000 will develop
PSP.
Symptoms begin, on average, when an individual is in the early 60's, but may
start as early as in the 40's. PSP is slightly more common in men than women, but
PSP has no known geographical, occupational or racial preference. (more.....)
Tracheostomy (Trache) - a surgically created opening in the neck leading
directly to the trachea (the breathing tube). It is maintained open
with a hollow tube called a tracheostomy tube.
