Not enough is being said about how much of a tragedy ALS is, not only on the one diagnosed but on the family as a whole. Below along with our thoughts, and links to support and donation opportunities, is the heartfelt word of someone affected by ALS. Dumping buckets of ice isn’t enough.
“…Today, I consider myself the luckiest man on the face of the earth… So I close in saying that I might have been given a bad break, but I’ve got an awful lot to live for.”
Two short years before he passed away, Lou Gehrig bid farewell to the world he had come to love and that had come to love him at Yankee Stadium.
Baseball’s original Iron-Man – aka “The Iron Horse” – was diagnosed with ALS in 1939, cutting short the career and life of one of America’s icons (and a man who came to be one of my childhood heroes).
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord; motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body – the progressive degeneration of the motor neurons in ALS eventually leads to their death. As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller) and limbs begin to look “thinner” as muscle tissue atrophies. As degeneration advances, patients in the later stages of the disease may become totally paralyzed and lose control of all voluntary body functions – with the majority of ALS patients eventually succumbing to pneumonia or repiratory failure. Almost 6,000 people are diagnosed with ALS every year in the US alone.
ALS/Lou Gehrig’s Disease is a killer, and it doesn’t discriminate. It doesn’t care about your race. It doesn’t care about your gender. It doesn’t care about your religion. It doesn’t care about your social status. It doesn’t even care about your sexual orientation. It. Just. Kills.
Some of the notable people through US history affected by it are:
- Lou Gehrig June 19 1903 – June 2 1941
- Stephen Hawking January 8 1942 – present
- Henry Wallace October 7 1888 – November 18 1965 33rd Vice President of the United States
- Jim “Catfish” Hunter april 8 1946 – September 9 1999 HOF New York Yankee
- Steve Gleason March 19 1977 – present – Washington State 1996-1999 WSU HOF 2014. www.teamgleason.com – No White Flags
Some of the more notable people are those we know and love… Our friend, Hannah, was greatly effected by ALS – here’s what she had to say:
My name is Hannah, my uncle Glenn Blair was diagnosed at the age of 30 and lived with ALS for 26 years. He is one of few who lived longer than the average. Once a person is diagnosed with Lou Gehrig’s disease they are given a time frame of roughly 2-5 years.
How can I even begin to express the horror and terror that ALS brings. I never knew my uncle as a healthy man, since the day that I was born he had been sick. But that never changed the love that I had for him or the fear of what was to come. Growing up, my extended family was a huge part of my life, in part because we all felt a sense of calling to be close and to support each other as this tragedy was unfolding. Uncle Glenn had been an architect for a number of years and even designed the house that I currently live in as well as my grandparents.
My wish is that through these ice bucket challenges people will start to understand better what ALS truly means and the terror of that diagnosis. (Here’s the secret about ALS though; there’s not a test for it! What I mean by that is that they rule out every other disease process and often the only other thing that can explain all the symptoms is ALS. There is no test).
My uncle chose to be placed on a ventilator for my cousin, Rebecca Rose, so that he could watch her grow up and to be even a small piece of her life. He ended up being the center of it.
What most people don’t see when they hear ALS is what it stands for; Amyotrophic lateral sclerosis, which is a disease of the nerve cells within the spinal cord and brain that control movement. Most people who are diagnosed and choose not to be on a ventilator will eventually die of suffocation if they don’t die of something else they may contract. My uncle chose the ventilator which forced him to breathe. Once he had a trach put in he would never speak, I don’t know what his voice sounds like to this day. I don’t know what a hug from him would feel like. I have memories of movie nights at his house since all he could really do was watch TV. For a while, when I was really young, he was in a wheel chair and they would bring the vent along so that he could come to our house for the holidays but eventually that wasn’t a possibility.
I could go on forever about the impact that this had on my life but in the end it won’t make a big difference because it’s my story and what I saw and dealt with probably isn’t anything you’ve ever seen. My mom and grandmother used to do passive range of motion on him to keep what little muscle he had left. With ALS the muscles being to atrophy (which means that they start to go away or die) and so eventually the person is no longer able to move or talk or even breathe on their own. They are essentially stuck within their minds. Of course, we had our own system of communication. We would often ask yes or no questions and if the answer was yes then he would raise his eyebrows.
There was only ever one perk to his illness…ok, maybe two….first, you could always count on him being around (aka at home in bed) and second, he was the BEST secret keeper I ever knew!
This doesn’t begin to do ALS justice and I hope that one day there is a treatment so that these people and their loved ones won’t have to face the reality and devastation that this disease causes.
It’s the hardest thing in the world to watch the person you love slowly wither away and to become trapped within their body knowing full well that they have complete mental capacity. To all the families still fighting ALS, never give up hope and know that you are not alone. The last thing I would like to say is thank you for supporting research that I hope will one day ease the pain that this disease has brought to so many families.
People everywhere are affected by this disease, but there are things you can do to help fight it.
You can GIVE. A lot of people have been participating in this “ALS ice bucket challenge”, and while that may be good and all for getting some word out – that’s no substitute for donating to the cause. We’ve been gifted with the ability to make great leaps in science and medicine, and we can find a cure. We here at the MoGT are donating to the cause and we challenge you to join us – every little bit helps. I’ve listed a couple of places below where you can donate. The celebrities participating in the current “challenge” make billions of dollars a year, but less than $40 million has been donated as of the writing of this article – we can do better!
You can SPREAD AWARENESS and get other people to donate. You don’t have to dump a bucket of ice water on yourself, and we shouldn’t have to to get people to educate themselves.
Today, I consider myself one of the luckiest men in the world: I have my faith, my family, my friends, and my health… And the opportunity to spread awareness about this killer that has taken far too many people from us before their time. I’ve got a lot to live for, and so do you – so let’s help more have that same opportunity.
Please join us as we’ve donated to the John Paul II Medical Research Institute and, in Hannah and Mr. Blair’s name, to The Gleason Initiative Foundation.
Our Pledge is to not stop here, we’ve already circled ALS events on our calendar to contribute to and hope you will do the same. Don’t let ALS fall to the wayside when the water stops splashing.
Places you can donate:
The John Paul II Medical Research Institute (my personal choice & for people with qualms about embryonic stem cell research)
The ALS Association– Alsa.org for more information and patient/family/caregiver support
Categories: Pull Your Head Out... A PSA