Not many people know about, or even understand what ALS (Amyotrophic Lateral Sclerosis) is, what it does, or how people
get it in the first place. Some people often equate it with multiple sclerosis. Although at first some of the symptoms may
appear similar, let me assure you that they are not. While both are neurological (nerve) disorders, what is happening with
those nerves is very different.
Multiple sclerosis generally appears in people between the ages of 20-40, and women are more likely than men to have the
disease. It also can go into remission for prolonged periods of time. ALS, also known as Lou Gehrig’s Disease, is a
motor neuron disease. Basically speaking, the brain communicates to the muscles through a pathway. That pathway is the motor
neuron pathway. The communication sent through that pathway stimulates our muscles to move. In ALS, these motor nerves progressively
deteriorate. This disease does not go into remission and it is always progressive. Nerves do not regenerate so there is no
turning back, no regaining of abilities that are lost. It begins with a weakness, especially in the hands and forearms, less
frequently in the feet and slurred speech. Muscles become tight and you begin having difficulty with grasping things and using
your hands and/or legs. It impairs speech, chewing, swallowing, and breathing. There are a few abilities that remain intact
in this disease, which are your mental status, hearing, feeling and smell. So while your body deteriorates and you become
"frozen" in a shell you are completely and acutely aware of every change.
ALS occurs in 2-7 of every 100,000 people. It affects men four times more often than women. More than that, it typically
occurs between the ages of 40-70, and its incidence is usually higher among persons whose occupations require strenuous physical
labor. As you can see Leslie does not fit into any of these statistics - so why Les? No one can answer that. The cause is
generally unknown. In about 10% of the time an inherited tendency appears to be involved. In other cases there are only potential
links - a maybe - or in other words, a guess.
There is no effective treatment for those with this condition. Management is aimed at controlling the symptoms. About 50%
of people with this disease die within 3 years of the first symptoms and only 10% live 10 years. This disease thoroughly challenges
a person’s ability, and their loved ones’ ability to cope. It sinks in and roots itself to the very core of you.
It is scientifically and medically always fatal. In those terms there is no hope. So what about Leslie?? Well, that’s
another story!
*Written by Lisa Steinberg, who is a R.N. and personal friend to Leslie
