Diagnosed with ALS: Frequently Asked Questions

It is good to know that society is far more aware of people with disabilities today. It is also releasing fact that the laws entitle you to equal employment opportunities and access to public places. We should all understand that when person gets diagnosis with amyotrophic lateral sclerosis, the world is changing. They are suddenly faced a serious disease that would affect every aspect of their life. Therefore, it is clear these patients need help, especially those who get diagnosis with ASL lately. For the start, it is good to answer some frequently asked questions they have.

What is amyotrophic lateral sclerosis?

Amyotrophic lateral sclerosis, ALS or Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease. ALS get name of Lou Gehrig's disease after the Yankees baseball player who died of it in 1941. In Britain and elsewhere in the world, ALS refers to a motor neuron disease, in reference to the cells that are lost in this disorder. The word amyotrophic means without muscle nourishment. It refers to the loss of signals the nerves normally send to the muscles. Lateral means to the side, and refers to the location of the damage in the spinal cord. Sclerosis means hardened and refers to the hardened nature of the spinal cord in advanced ALS.ALS attacks the nerve cells or neurons, responsible for controlling voluntary muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die. Off course, once this happen, neurons are ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch as common ALS symptom. Eventually, the ability of the brain to start and control voluntary movement is lost as well. Individuals with ALS lose their strength and the ability to move their arms, legs, and body, which is scary. When muscles in the diaphragm and chest wall fail, individuals lose the ability to breathe without some support.

Who gets ALS?

ALS usually strikes in late middle age; the late 50s is average or later in person’s life. Although, there have been cases of ALS in young adults and even in children. It was also happening as well as in very elderly people. Some genetic forms of ALS have their onset in youth as well. The truth is that men are somewhat more likely to develop ALS than are women. Studies suggest an overall ratio of about 1.2 men to every woman who develops the disorder of ALS. Genetic factors are part of the picture in ALS, and the disease can run in families. For years, experts have tried to find factors common to people who develop ALS. They were searching some factors as environmental toxins, occupational hazards, places of work or residence, and so forth. So far, the evidence for such risk factors and triggers has been frustratingly unclear. Although, a recent finding of an association between developing ALS has indicated one of the strongest of these proposed risk factors.

Does ALS run in families?

ALS runs in families, because it shows a family history about 10 percent of the time. Several genes associated with ALS identify or at least mapped to a specific region of a chromosome.

What happens to someone who gets ALS diagnosis?

In ALS, nerve cells that control muscle cells are gradually lost as you might already learn. In most cases, the cause for such a problem is unknown. As these motor neurons are lost, the muscles they control become weak. As logical consequence, they became nonfunctional after a while. Eventually, the person with ALS might paralyze. Death, usually from respiratory complications, typically comes between three and five years after diagnosis. Some studies say after doctors note the symptoms, so the timing is unclear. However, about 10 percent of those with the disease live more than 10 years, and some survive for decades. Modern technology has allowed people with ALS to compensate for almost every loss of function to some degree. It is making it possible even for those with almost no muscle function to continue to breathe, communicate, move about and use a computer. Longevity statistics may be somewhat out of date because of changes in supportive care and technology that are lately developed. It is important to note that ALS does not directly affect the involuntary muscles. The most important involuntary muscles are those that control the heartbeat, gastrointestinal tract and bowel function, bladder and sexual functions. However, prolonged inability to move and other effects of ALS can have some indirect impact. Pain is not a major component of the disorder, although moderate pain can certainly occur. It is result of immobility and its various complications. Hearing, vision, touch and intellectual ability generally remain quite normal in patients diagnosed with ALS. Some experts believe that certain emotional changes may attributes directly to the disease process. However, in such a devastating disorder as ALS, it can be difficult to distinguish feelings due to the underlying disorder from those that result from the person’s situation.

What happens to nervous system in ALS?

We could divide the muscle-controlling nerve cells, or motor neurons into two types. The upper motor neurons are located in the upper part of the brain and exert some control over the lower motor neurons. Those are in the brainstem and the spinal cord. The lower motor neurons attaches to muscles through wires called axons. Bundles of these axons leave the spinal cord and extend out to the muscles all over the body. Those are bundles, which doctors are referring to when they talk about the nerves. The function of lower motor neurons is straightforward; they send go signals to muscles. When these cells gradually die, as in ALS happening, muscles become progressively weaker and eventually unable to move. This problem is paralyzing patients. The lower motor neurons that control most of the body are in the spinal cord, that control the muscles of speaking, swallowing and facial expression are in the brainstem. The other name is bulbar motor neurons, because the part of the brainstem that houses them has a bulblike shape. The term bulbar involvement means that the muscles of the face, mouth and throat are involved in the disease of ALS. The upper motor neurons have functions that are more complex. It is harder to study them, and not as much, we understand about them. Although I have to say, some new techniques are changing that. These cells seem to exert complex control over the lower motor neurons that allow movements to be smooth. When upper motor neurons are lost and lower motor neurons remain, movements are still possible. However, these movements can become tight where doctors use the word spastic for this. Beside this symptom, affected muscles became less precise. In ALS, a combination of these effects is usually there because both upper and lower motor neurons are dying. People with ALS can have weak and wasted muscles with tightness. Muscle twitches and cramps are common, and they occur because degenerating axons of the nerves become irritable.

Is there any treatment for ALS patients?

There is not yet worth cure found for ALS. However, the FDA has approved the first drug treatment for the disease, and that is Riluzole.  Riluzole reduces damage to motor neurons and prolongs survival by several months.

What is the prognosis for newly diagnosed with ALS?

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body. This is common problem as the disease progresses. Individuals with ALS have increasing problems with moving, swallowing, and speaking or forming words. Eventually, people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms, and in later stages of the disease, individuals have difficulty breathing. It happens as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of this disease. Unfortunately, most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years, so death is not your only option.

What new researches found?

The National Institute of Neurological Disorders and Stroke conducts research in its laboratories at the National Institutes of Health. They also support additional research through grants to major medical institutions across the country.  The goals of this research are to find the cause or causes of ALS. The goal is to understand the mechanisms involved in the progression of the disease, and develop effective treatments. You might have vital weapon in Muscular Dystrophy Association, which offers the best doctors and health care professionals.