“No White Flags”: Part 2 of 4


‘No White Flags’: Team Gleason’s Battle with ALS Part 2

by Brian Belko on 01/30/2013 at 10:00 am

Steve Gleason’s symptoms first started showing up on a Labor Day trip to Alabama. He had been noticing an odd twitching in the muscles of his upper chest and arms. Steve didn’t think anything was really wrong so he just lived with the twitching. However, a more frightening event occurred during that Labor Day trip. While goofing off with his brother-in-laws, Steve struggled to complete several pull-ups on a tree branch.

For an ex-NFL football player that was certainly not something to take lightly. However, Steve had just participated in a 35 mile charity bike ride that morning and attributed his fatigue to that strenuous event. Unfortunately, the muscles twitches continued to worsen, finally driving Steve to seek a medical opinion on the problem.

Steve, with wife Michel constantly by his side, traveled across the country to undergo a battery of tests. As the tests slowly ruled out less serious possible causes of the twitching and the hallmark symptom of ALS, trouble lifting fingers and toes, showed up, Steve was faced with a harsh reality. He was facing a reality that he may have a disease that would eventually take his life well before he was ready for.

Finally, after months of tests and few answers, Steve had an appointment with Dr. Robert Miller in early January. Dr. Miller worked at the Forbes Norris ALS/MDA Research Center at the California Pacific Medical Center. During that appointment, Steve’s worst fear, and the worst fear of the many who loved him, he was diagnosed with ALS.

Lou Gehrig’s Disease – Effects of Lou Gehrig’s Disease – What Is ALS Video

What is ALS?

ALS, or amytrophic lateral sclerosis, is a cruel and ruthless nuero-muscular disease. It does not discriminate and does not relent. It is a disease that attacks the parts of the nervous system that control voluntary muscle movement.

As ALS progresses, the body’s motor neurons, the nerve cells that control muscles, are gradually lost. As that loss advances, the muscles that those neurons control continue to get weaker and eventually become nonfunctional.

ALS usually shows itself during the late middle ages of life, however, like many facets of the disease that is not set in stone. Steve’s diagnosis came when he was 34 years old and in great shape. Men are also slightly more likely to develop ALS.


The causes of ALS are still widely unknown by science. One prominent theory states that some people are genetically predisposed to the disease and that an environmental trigger sets it off at some point during that person’s life.

The majority of ALS cases are known as sporadic which means that no family history of the disease exists. About 5-10 percent of ALS cases are known to run within a family genetic line.

Those suffering from the disease experience an array of different symptoms. Muscles can become weak and soft or stiff, tight and spastic. Twitches and cramps begin to increase in frequency and duration as degenerating nerves become “irritable.” Every case of ALS has its own unique variation on the symptoms as well which is one of the reasons it is still so misunderstood.

The muscles used for speaking and swallowing begin to deteriorate as the disease starts to attack the bulbar motor neurons in the body. The symptoms continue to spread throughout the body as time goes by and most ALS patients are given between 3-5 years to live following diagnosis. However, that time frame is becoming less of a certainty as technology improves.

Living with ALS video

Clearing Up Misconceptions

While ALS patients do eventually lose the control and use of their voluntary muscles, they continue to maintain their involuntary muscle function. Those muscle groups include the ones that control heart function, gastrointestinal systems such as the bladder, as well as sexual functioning.

People with ALS also do not suffer any loss of the senses either. Their senses of touch, taste, vision, hearing, and smell all remain intact.

Technology to Replace a Cure

“Right now, there is no cure for ALS. But in the absence of a cure, technology can in some respects restore what ALS takes away. And that’s one of the cornerstones of Team Gleason’s mission. We want to keep pushing the envelope to create groundbreaking technologies that help patients living with this horrible disease,” said Scott Fujita, great friend of Steve and a board member of Team Gleason.

The fact that there is no cure for ALS means that the technology to improve the quality of life for those fighting the disease is extremely important.

“ALS is a disease that does not discriminate. It’s ruthless. And it’s affecting thousands and thousands of people who never played a down of contact football. There are still so many mysteries behind this disease, and it’s a disease that unfortunately has been under-funded and largely ignored for far too long. Team Gleason intends to do something about that. It’s time for everyone to start putting their heads together to find solutions,” says Scott.

Check back tomorrow for the third installment of this four part series about Team Gleason. Learn more about Scott Fujita, his close friendship with Steve, and his dedication to Team Gleason tomorrow.

Full story with all links and videos at: http://www.bonfireimpact.com/2013/01/30/no-white-flags-team-gleasons-battle-with-als-part-2/

Filed in: Press Room • Thursday, January 31st, 2013

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Scott Fujita

Scott Fujita was born in Ventura, California on April 28, 1979. He was a three-sport standout at Rio Mesa High School in Oxnard, CA before heading to the University of California, Berkeley, where he graduated with Honors in Political Science and earned a Masters degree in Education.

Fujita has played in the NFL for the Kansas City Chiefs, Dallas Cowboys, New Orleans Saints and Cleveland Browns. Read more