ALS / MND / Lou Gehrig's Disease

As promised this article is about ALS. I am going to give you the facts. Not my views or feelings on the subjet nor will there be any personnal info in this one.

It may be a hard read for some, but I feel you need to know what the illness is to be able to understand how we live our lives.

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.

As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.
Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease.
While there is not a cure or treatment today that halts or reverses ALS, there is one FDA approved drug, riluzole, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.
Importantly, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences.  There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate. 

Credits : http://www.alsa.org/about-als/
 

If you do not understand all these scientific terms, basically it is a disease that kills the muscles. It paralyses the body and the respiratory organs. It prevents any movement. In some cases the illness prevents you from breathing so you end up connected to machines 24/7. When you need a tracheotomy your vocal cords are affected. What makes speech impossible. So not only do you not have control of your body, but you have no control of your voice ...

The disease is not usually hereditary, if someone in your family with ALS that does not mean you will get it. There are rare cases where several members of the same family are affected but it could just be a coincidence.

To date there is no cure for the disease, it's not like cancer where you have a chance at survival. Drugs can slow the process down a few months but that's all. You can not recover from ALS, you die from it.

Now that you have read that and hopefully understand the illness a bit better we will end this article here.

Have a lovely afternoon.

XOXO