Upon preparing for my 270 Mile Bike Ride, I wanted to learn more about the cause I was going to be riding for, which is ALS. Sure, I knew it was a disease, but I was naive to everything that came along with the disease. The more and more I learn about ALS and read different stories of those that have either been affected directly or indirectly by this disease, the more I am beginning to understand the importance of this bike ride.
I had all these questions about ALS, and then last week, I saw a shared Facebook post on an article that Steve Gleason wrote. Throughout this 3 page article, Steve Gleason takes you on a journey and shares his first hand insights on this disease.
He explains ALS, speaks of how he wishes to help others with ALS live inspired lives through Team Gleason, and he does so with such an appealing sense of joy that you can not help but be inspired by his words and positive actions.
He too himself was unaware of the challenges that were ahead of him. He too himself may have been a little naive to what actually came along with ALS. But the most incredible thing, which is very easy to take from this article, is Gleason’s positive attitude as he fights to raise awareness for ALS.
Over and over again throughout the article, Steve Gleason chooses to look at the positive side, rather than dwell on the negative.
It’s the fact that he has embraced the struggle that is in front of him each day, identified where he is at and where he wants to go in life, and just because he has ALS does not mean his goals have to be overshadowed. He is living proof that life can be as fulfilling as you choose, no matter how big or small the obstacle that stands in front you may be. He is an inspiration to everyone, both with and without ALS, on how to live.
With that said, I want to simply share a little bit of what I have learned about ALS through his article, in hopes that it will motivate all of us to continue to come together as a team to support those with this disease, and hopefully help find a cure.
1) ALS stands for Amyotrophic Lateral Sclerosis. A-myo-trophic comes from the Greek language. “A” means no or negative. “Myo” refers to muscle, and “Trophic” means nourishment–”No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening (“sclerosis”) in the region. (Source: alsa.org)
2) Mainly, the most important thing to realize about ALS is there is no known cure, and no known understanding for how this disease even develops in the first place. One of Steve’s goals is to raise awareness of ALS in hopes that it will lead to finding a cure. In the article, he said,
I think we will find a cure only when the world clearly understands what ALS does and how to help. This real life example may help you understand ALS.
I encourage you to take the time to read his article to further understand ALS and the goals of Steve Gleason and Team Gleason.
3) The Team Gleason House of Innovative Living is currently working to develop technology which will help those with ALS live more independently. As a result of their efforts, Steve can talk in a synthetic voice through typing words on a screen in which he controls with his eyes. He can open doors, turn on the TV, turn on lights, open blinds, etc. All of this is done with his eyes. Incredible? Absolutely.
4) ALS prevents your brain from talking with your muscles, and as a result, muscles dies, which then leads to death. As of now, ALS is a terminal disease with a life span of 2-5 years. It is estimated that approximately 30,000 Americans suffer from this disease at any given time. Some people, however, do actually live well beyond the 5 year constraint, and Gleason realized three things about these people.
“I realized these patients had three crucial elements to help them: the right support, the right technology, and purpose.” He goes on to say, “After my diagnosis, I was determined to gather the right support, the right technology and continue living a purposeful life. For decades, despite the progression of the disease.”
5) Lastly, Steve Gleason can serve as a leader to all of us. We sometimes need to take a step out of our own shoes, and look at life through the perspective of others. The story of Steve Gleason, and the steps he is taking to make people aware of ALS, is a great place for all of us to start. As Gleason says,
We all face adversity and tragedy, and need inspiration and motivation to keep rolling.
Today, use Steve Gleason as motivation and look for the positives in life. Don’t take it from me; rather take it from a person like Steve Gleason and be sure to recognize that life is going to be difficult, but life can also be very rewarding with the right mindset.
I’ll leave you with one more quote from Gleason, and please take the time to read his article and do your best to adopt his way of viewing things on the positive side. I hope you were able to take something from this, and thank you for taking the time to read this. (Click on the quote to read his article.)
Think Positive. Life is Awesome.
Think Positive. Live Positive.