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Steven's ALS Journey

$38,870 of $50,000 goal

Raised by 320 people in 12 months
Created May 3, 2018
After almost a year of dealing with symptoms, my brother, Steven, was diagnosed with ALS on April 30th, 2018. 

There is no cure for ALS and the average life expectancy after diagnosis is 3-5 years.  In a nutshell, ALS affects the muscle and nerve cells. He will lose the function in his arms and legs, the ability to eat or speak and eventually not be able to breathe on his own. He will go to the ALS clinic at University Health Science Center, Colorado in mid-June. Until then, he is not sleeping due to the painful muscle spasms at night 

Those of you that know Steven, have witnessed his selfless and generous spirit. He honestly has never done a bad thing in his life. Those of you that don't know Steven, have enjoyed the pictures of family and nature that he shares.  He gives 100% of himself to his family, his job, his friends and his church. No ever feels they are not first in his life.

And now it's time to give back to him.

He is a teacher for Douglas County Schools in Colorado and has worked hard to provide a life so Chisa could be at home with the kids while they are growing up. He won't be always able to work, and Chisa's next job will be helping to care for him.

We don't know have quickly his ALS will progress but do know that there are items he will definitely need to be safe at home for the short and long-term: ramps built to go into the house, safety bars in the bathroom, a wheelchair and most likely a handicap accessible vehicle. 

We will also eventually have a collection of his photographs put together to help raise money.

I set the money total kinda high...he might need more someday. Anything left after medical and safety expenses would go to Chisa, Liana, and Daniel.
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May is ALS AWARENESS MONTH
A lot of people assume that ALS stands for ALL LOVE STEVE. This is not true. It stands for Amyotrophic Lateral Sclerosis. But you could also say that it stands for ALWAYS LOSING SOMETHING. It is a progressive disease in which affected individuals gradually lose abilities, and that which is lost is rarely, if ever, regained. I have already lost the use of my arms, hands, and most of my legs. I am writing this by placing my phone on my leg (I can't hold it), and painstakingly swiping letters with my right thumb. As I lose more and more, I try to focus on and be thankful for what I can still do (such as speak a little bit, breathe okay, swallow food, and text with my thumb) and the things which I can never lose (faith, hope, love, and the peace of God). It's still very challenging. It's humbling to be helpless; to receive so much, without being able to give back.
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I brought my power wheelchair to church for the first time tonight. Instead of standing up, I used the elevator function to lift me up!
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May is ALS AWARENESS MONTH. Falling down is a common occurrence for many people with ALS. I have fallen eleven times in the past year. The latest was fifteen minutes ago. You see, I can still stand up with assistance, and even take a few steps holding a rollator/walker or Chisa's hands. So when I use the bathroom, Chisa helps me stand in front of the toilet, leaves the room to give me some privacy, and all is good... usually. Today I fell straight back, and landed propped up with my feet against the base of the toilet and my back against the opposite wall. The good news is that I didn't end up on the floor this time, and I was not injured. The bad news is that I busted the towel bar, and Chisa doesn't trust me in the bathroom anymore!
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May is ALS AWARENESS MONTH. ALS destroys motor neurons. This messes up your muscles in two ways. 1) Your muscles and your brain cannot communicate with each other. 2) When muscles can't get signals from the brain, they began to atrophy.
I can barely move my arms, hands, and legs. But they NEED to move. If they don't move, then the joints can "freeze", you will lose range of motion, and you get a lot more PAIN. This is where my wonderful wife, Chisa, my wonderful physical therapist, Stephanie come in. They stretch my arms and legs and do passive range of motion exercises. They move my arms, legs, hands, and feet FOR me.

Incidentally, as my muscles get weaker, Chisa's muscles are getting stronger. Have you lifted up somebody's leg recently? They are not light. If your spouse has ALS, you don't need to go to the gym to work out!
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$38,870 of $50,000 goal

Raised by 320 people in 12 months
Created May 3, 2018
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DH
$50
Deb Hutson
17 mins ago
SH
$20
Susanne Henry
14 days ago
BH
$100
Bill Hannan
17 days ago
KZ
$250
Kelly Zunker
18 days ago
CB
$20
Candace Barnes
19 days ago
LS
$50
Leslie Scott
1 month ago
$100
Anonymous
1 month ago
$100
Robert Hannan
1 month ago
$50
Christian Stair
1 month ago
AP
$500
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