ALS .. Those 3 letters changed my life 15 years ago. Our son Bryan was diagnosed with this body destroying and fatal disease at the age of 33. He was told by a heartless specialist to get a feeding tube, fill out a DNR and prepare to die. His life expectancy was 18 months.
He had just returned to Wichita, after spending 5 years teaching in Prague and had begun his first year teaching at Wichita State.
Our hearts were full of despair and hopelessness. An intervention from an ALS angel, Jean Hayley, brought HOPE into our lives. She put Bryan on a huge regiment of vitamins and told him to eat to keep weight on his body. He went to the ALS clinic at KU Med and was told that he had a very slow progressing form of the disease and that his life span was like everyone else undetermined.
From that point on we celebrate life. We appreciate each extra day that we have been given.
However, that is not the norm for this beast of a disease. Every 90 minutes, someone is diagnosed with ALS and ever 90 minutes, someone takes their last breath.
There are no survivors to celebrate at the ALS Walks. There are no treatments that bring any long term relief. Every patient is different but the out -come is always the same.
Because our family has been given a gift, I feel it is my duty and privilege to do what I can to help spread the awareness and offer support to those patients and their caregivers while we await a treatment of any kind.
You will be hearing from me again as we prepare for fundraising walk in September.
WHAT IS ALS? The name amyotrophic lateral sclerosis is Greek in origin. “A” means “no” or “negative,” “myo” translates to “muscle”, and “trophic” refers to “nourishment”. So, amyotrophic means “no muscle nourishment”. “Lateral” refers to the places in a person’s spinal cord where portions of nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (“sclerosis”) in the region.In the United States and many other countries, Amyotrophic Lateral Sclerosis (ALS) is commonly known as Lou Gehrig’s disease, named after the legendary Yankees baseball player who died from ALS in 1941. In the United Kingdom and other parts of the world, ALS is often called Motor Neurone Disease (MND). In many Spanish speaking countries it is called Esclerosis Lateral Amiotrófica (ELA).This disease weakens and kills nerve cells that control voluntary muscle movement. Individuals are robbed of their ability to move, speak, eat and breathe, but it often leaves the mind intact. Death can occur within 2-5 years of diagnosis, but some individuals have survived for 10 or more years. Some symptoms can be managed and certain treatments can help extend life. However, there is currently no known cure or fully effective treatment for the underlying causes of ALS.
ALS is not contagious and doesn’t discriminate. This disease can strike anyone, regardless of age, gender, race, ethnicity, or socioeconomic status. Every 90 minutes ALS claims another life. Every time someone dies, another person is diagnosed with ALS.