I am Madeline Kennedy, and I am a person with ALS (pALS.) This website is to serve as a resource for people new to ALS, those who are newly diagnosed, those who love someone with ALS, or simply other caring individuals. It is not a definitive resource, but a collection of thoughts, experiences and referrals to other sites that I have found useful. I welcome comments or questions. Through increased awareness, we can build advocacy and make progress towards a cure.
I invite you to share my story….
What is ALS?
Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, is a fatal neurodegenerative disease with no known cause, no cure and no effective treatment. It is a rare disease, striking 2 out of 100,000 people. There is no distinction among race, nationality or ethnicity.
In people with ALS, the motor neurons deteriorate for reasons yet unkown. As nerves die, the muscles become useless. Eventually, all voluntary muscles become paralyzed. The victim loses the ability to walk, speak, use hands, eat, and finally, he loses the ability to breathe. Death usually comes within 2-5 years. Though the body fails, the individual's mind remains intact and fully alert. He is trapped inside an unresponsive body.
There are 5600 Americans diagnosed with ALS each year. An equal number of us die each year. There are about 30,000 people with ALS the US at any time. The incidence is about the same as MS, but the prognosis is much poorer.
ALS was first identified in 1865, and was known as Charcot's disease. In 1942 it became known as Lou Gherig's disease when the Yankees great was diagnosed and died just two years later. In other parts of the world it is called motor neuron disease (MND.)
ALS is a very
isolating disease. Each individual has a different experience and a
different presentation of the disease. For some, it begins in the limbs, for others in speech. This makes predicting the course of the disease very difficult.
People in the military are twice a likely to get ALS as the general population.This is not affected by when or where the individual served. No one knows why.