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
Bablnski - Babinski reflex: An important neurologic test based, believe it or not, upon what the big toe does when the sole of the foot is stimulated. If the big toe goes up, that may mean trouble.
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
CIDP - Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system. The disorder is sometimes called chronic relapsing polyneuropathy. CIDP is closely related to Guillain-Barré syndrome and it is considered the chronic counterpart of that acute disease. Its symptoms are also similar to progressive inflammatory neuropathy. An asymmetrical variant of CIDP is known as Lewis-Sumner syndrome.
Clonus - from Greek for "violent, confused motion" - a series of involuntary muscular contractions due to sudden stretching of the muscle.
COPD - Chronic Obstructive Pulmonary Disease. It's a chronic lung condition that gets worse over time. COPD includes chronic bronchitis, emphysema, or both. Most COPD patients have both.
EMG - An electromyogram (EMG) is a test that is used to record the electrical activity of muscles.
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.
GBS - Guillain–Barré syndrome (GBS) is an acute inflammatory demyelinating polyneuropathy (AIDP), an autoimmune disorder affecting the peripheral nervous system, usually triggered by an acute infectious process.
Hoffman’s Disease - Spinal Muscular Atrophy (Werdnig-Hoffman Disease, Kugelberg-Welander Disease) What is Spinal Muscular Atrophy?
Spinal muscular atrophy (SMA) is a genetic, motor neuron disease caused by progressive degeneration of motor neurons in the spinal cord. The disorder causes weakness and wasting of the voluntary muscles. Weakness is often more severe in the legs than in the arms.
Laryngectomy - Total laryngectomy: Stages III and IV laryngeal and hypopharyngeal cancers usually require removal of the entire voice box. With the removal of the voice box, the windpipe is then brought up to the skin of the neck as a stoma (or hole) which the patient will breathe through. This is also becoming a preferred procedure for ALS patients to prevent choking on saliva, phlegm, mucus and/or food. (More)
Lupus - If you have lupus, you probably have many questions. Lupus isn't a simple disease with an easy answer. You can't take a pill and make it go away. The people you live with and work with may have trouble understanding that you're sick. Lupus doesn't have a clear set of signs that people can see. You may know that something's wrong, even though it may take a while to be diagnosed.
Lupus has many shades. It can affect people of different races, ethnicities, and ages, both men and women. It can look like different diseases. It's different for every person who has it.
The good news is that you can get help and fight lupus. Learning about it is the first step. Ask questions. Talk to your doctor, family, and friends. (More)
Lyme - What is Lyme disease? What causes Lyme disease?
Lyme disease is a bacterial illness caused by a bacterium called a "spirochete." In the United States, the actual name of the bacterium is Borrelia burgdorferi. In Europe, another bacterium, Borrelia afzelii, also causes Lyme disease. Certain ticks found on deer harbor the bacterium in their stomachs. Lyme disease is spread by these ticks when they bite the skin, which permits the bacterium to infect the body. Lyme disease is not contagious from an affected person to someone else. Lyme disease can cause abnormalities in the skin, joints, heart, and nervous system. (More)
Myasthenia Gravis
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 with 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.
NCV - A nerve conduction velocity (NCV) test is often done at the same time as an EMG.
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 is a disorder of the upper motor neurons. The degeneration of these upper motor neurons in the brain and spinal cord, which control voluntary movements, cause disabling spasticity and weakness. As the muscles are not directly affected, there is no wasting or fasciculation’s (rippling effect under the skin), with this condition. There are also lower motor neurons in the body, but these are unaffected by primary lateral sclerosis. (More)
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.
Stridor - Stridor is a term used to describe noisy breathing in general, and to refer specifically to a high-pitched crowing sound associated with croup, respiratory infection, and airway obstruction.
Thrush - Thrush is an infection of the mouth caused by the candida fungus, also known as yeast. Candida infection is not limited to the mouth; it can occur in other parts of the body as well, causing diaper rash in infants or vaginal yeast infections in women.
Thrush can affect anyone, though it occurs most often in babies and toddlers, older adults, and people with weakened immune systems.
Tinnitus - Tinnitus is a buzzing or ringing noise in the ears. This is a very serious condition where left untreated can interrupt your sleep and becomes very very frustrating.
Tinnitus is not a disease, but a symptom resulting from a range of underlying causes that can include: ear infections, foreign objects or wax in the ear, nose allergies that prevent (or induce) fluid drain, and wax build-up. Withdrawal from a benzodiazepine addiction may cause Tinnitus as well.
Tinnitus can also be caused by natural hearing impairment (as in aging), as a side effect of some medications, and as a side effect of genetic (congenital) hearing loss. However, the most common cause for tinnitus is noise-induced hearing loss.
As tinnitus is usually a subjective phenomenon, it is difficult to measure using objective tests, such as by comparison with noise of known frequency and intensity, as in an audiometric test. The condition is often rated clinically on a simple scale from "slight" to "catastrophic" according to the practical difficulties it imposes, such as interference with sleep, quiet activities, and normal daily activities.
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.
Updated: Nov 28, 2010
