Amyotrophic Lateral Sclerosis, (ALS) otherwise known as Lou Gehrig’s disease is a terminal illness that takes over a person’s body because of the lack of messages being sent from the brain to the muscles. ALS is terminal; eventually the individual will die from suffocation or from the body simply giving up and shutting down or complications from the illness. The disease affects 5 out of every 100,000 people. ALS This degenerative disease literally changes the lives of families all over the world every time there is a diagnosis.
ALS Diagram showing the key body parts affected by the disease. Photo Courtesy of Jefferson University Hospital.
The most puzzling part of ALS is that there is no known cause. There have been hundreds of putative causes that have been disproven, refuted, or denied. According to Hiroshi Mitsumoto, MD, who wrote ALS A Guide for Patient and Families, most theories cannot be proven in every case and over the last several decades’ doctors and researchers haven’t made any more significant findings about why an individual acquires this terminal illness. The only known fact about ALS is that the motor neurons that control the spinal cord and muscles in the body die prematurely for unknown reasons, which then leads to the paralysis in those suffering from the disease. Essentially there is no signal from the brain to the spinal cord to tell the body which muscles to move and over time it worsens to the point of total paralysis.
A motorized wheelchair that with even limited mobility a person can move around in to some extent.
One can see the obvious physical difficulty an individual goes through when a physician diagnoses this disease but many forget the emotional struggle that ALS can also bring. Depression is most times a common side effect when one learns the struggles that they will eventually have to go through and die from. Raising awareness about such a fatal disease is important. Families are destroyed by an ALS diagnoses and lives change instantly. Simple tasks such as walking, talking, and being able to feed yourself are things that we all as human beings with little or no problems take for granted.
Chris as he waits to get into the shower. This is part of his daily routine.
Christopher Rushton, born and raised in the Midlands of England, came to the United States for work and a new life. He met his wife of 45 years in Michigan and work eventually led them to Rome, NY where they have resided for over 30 years. Now, at the age of 68, Chris has suffered from ALS for about 3 and half years. Before the disease, Chris was a businessman, an engineer who traveled all over the world for the Bartel Corporation. In July of 2009, after many months of not knowing what was wrong with him and internal battles of feeling weak all the time, Chris was diagnosed with ALS. When Chris was able to truly understand what ALS entailed he and his wife has many restless and tearful nights trying to absorb what changes were to come in their lives. Chris has overcome not being able to open wine bottles, to then not being able to run, to then not being able to secure his grip on anything, to not being able to walk, and now Chris is “effectively paralyzed from the neck down.” He relies on others to do everything for him. Things that people take for granted everyday like showering, taking pills, getting a cup of coffee, etc., Chris is unable to do.
ALS. from E Roman on Vimeo.
Lou Gehrig’s disease usually does not surface until later in life for most individuals. The age range of those diagnosed is between 40 years old and 70 years old. The average age at the time of diagnoses for those with ALS is 55 years old. Although, as of now, ALS is more prevalent in women than in men by 20% as time goes on the numbers seem to be evening out making it more equal. In the United States alone only 5,600 people are diagnosed each year, which is minimal, compared to the leading killers in the country. Many suggest this is why ALS has so few answers as to causes of the disease and lack of research done thus far.
A wall of picture’s from his children to his grandchildren. This is something Chris’s wife Rosanne says helps to calm his anxieties of the illness.
According to the ALS Association, “Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.” Chris was 65 when he was diagnosed which fits right in the range of typical ages of diagnoses.
A lift used to get many physically incapable people out of bed when they have no control over their own body.
Symptoms of the disease are similar in most individuals suffering from it although they affect each person differently and with different strengths. Symptoms include:
- Fatigue/Shortness of Breath
- Cramps/Muscle Spasms
- Swelling of Hands and Feet
- Jaw Quivering
- Weakness in Hands and Feet
- Inability to do household tasks suddenly
- Difficulty Speaking or Swallowing
- Shortness of Breath
- Trouble Sleeping
It is important to remember that at the primary stages of the disease these symptoms are much less. Inevitably, the symptoms and stages of the disease progress and worsen considerably until the individual dies from complications from the ALS.
A portion of the kitchen counter that Chris’ wife has now made a station for her husband’s medicines and nebulizer treatments.
Lou Gehrig is a vital part of the ALS Awareness project because of his stardom with the New York Yankees. In 1938, Gehrig noticed that he was feeling weak and his batting average was lower than it had been since 1925 and he knew something was not right. After several tests and misdiagnoses Gehrig was finally diagnosed with Amyotrophic Lateral Sclerosis. The degenerative disease meant that he would never play baseball again. Instead of using that as a reason to sink into depression Gehrig used it as a chance to make ALS known. They nicknamed it Lou Gehrig’s disease and because of Gehrig ALS received more awareness and research simply because of his fame. Gehrig lost his life 3 years after diagnoses.
Ultimately, ALS is the type of illness that an individual has to be one step ahead of. One has to be prepared for the worst and keep expectations at a minimum to escape disappointment. Chris lives with his disease everyday but has said that he cannot let it consume him or it will take over.