May is ALS Awareness Month and while most of us have heard of ALS Disease, often referred to as Lou Gehrig's disease, there is little we actually know.
ALS is an acronym for amyotrophic lateral sclerosis which is a form of motor neuron disease caused by the degeneration of the upper and lower neurons. The disease manifests itself through progressive weakness, muscle atrophy and twitching as well as motor speech difficulty and a compromised respiratory system. It is still a fatal disease although research is being conducted daily to find a cure. Ninety-five (95) percent of people who contract the disease have no known history of it in their families. ALS is rare. Each year in the United States and most of the world, only 1 to 2 people out of 100,000 get ALS. Men get ALS slightly more often than women do. ALS can occur at any age, but it most often starts in middle-aged and older adults.
Researchers speculate that repeated concussions in veterans and athletes may cause a chronic traumatic encephalopathy (CTE) that often mimics ALS. They believe this might explain why there is a higher rate of ALS diagnoses in these populations.
The disease affected my life and some of my closest friends when our dear friend, Keith, was diagnosed with the disease. Keith was a great guy always quick to share his beautiful smile and more often causing others to laugh uncontrollably with his antics. He married the love of his life, Amy, and had two beautiful children before he was diagnosed with this disease named after the famed baseball player Lou Gehrig, in his mid-thirties. Keith would say he was blessed to have a third child born before he passed away. My friend dealt with his illness courageously and directly, seeking medical advice and treatments as well as relying heavily on his Catholic faith.
As those of you who have known folks with this disease already know, there are no long term survivors. The disease progresses as it ravages the body until death comes. My friend Keith passed away in 1997; he was 37 years 'young' but had lived an amazing life. Right until his death, Keith continued to give back by writing letters to his friends telling them what they meant to him. To this day I cherish the letter I received from him. I often rediscover it looking through my box of "treasures". When I re-read it I find myself committing to living each day to the fullest and hoping in my lifetime a cure is found.
Today, there is a National ALS Registry available through the Center for Disease Control (CDC). The Registry has been established to collect, manage, and analyze data about people with ALS by gathering data about who has the disease and where they are located. The Registry data may then be used by researchers to identify common risk factors in ALS patients and to help detect disease pattern changes over time. Patients and their support network may use the Registry for updated links for patient resources such as ALS clinical trials.
People living with ALS may add their information to the National Registry by visiting the website.
As always, I like to share ideas and a call to action. Here are five (5) recommendations and tips on things you can do that will Make A Difference (M.A.D.):
1. Learn about ALS by going to the National Institute of Neurologic Disorders website
2. Watch the film, So Much, So Fast then talk about it to others
3. Do not let what an ailment does end what you love to do; work daily to find a way to do what you love!
4. Make a donation to nonprofit organization working in the area neurological disorders; a simple search the Internet will start you in the right direction including the Muscular Dystrophy Association - ALS division.
5. Volunteer your time to help those affected by a neurological disorder or in support of their caregivers.
Bonus Tip: You may also support the ALS Association by participating in a Walk to Defeat ALS.
Remember, each day is a gift! Live it to the fullest. Follow the example of my friend Keith who taught us how to live with a terminal disease and continue to make a difference!
Follow Lisa M. Dietlin on Twitter: www.twitter.com/lisadietlin