A Tough Road, but I’m Still Here


Matthew Busch is 34 years old with Duchenne Muscular Dystrophy. He uses a powerchair full-time, has had spinal fusion surgery, has a g-tube for feeding and a trach for breathing. He communicates just by moving his eyes. You can find Matthew streaming on his Facebook page, KGWA MattyIce.

My Diagnosis of
Duchenne Muscular Dystrophy

Hi, I’m Matthew.

I reached all my milestones like a normal baby.

But, when I was 6 years old, the teacher at school noticed that I was having a hard time keeping up with the other students when we were on the playground. So, she told my mom she thought I should see a neurologist. The neurologist did a biopsy and I had Duchenne Muscular Dystrophy. Like any normal parent, my mom was upset.

It’s been a tough road, but I’m still here.


Losing the Ability to Walk

At 8 years old, I was starting to fall down some while walking and getting skinned knees. So, I got some Power Ranger knee pads to help.

At 9 and a half, I was walking to the kitchen and I fell and twisted my ankle. I couldn’t walk when I tried to get up, so I crawled. That night, Mom had to help me get in the bed because at the time, I had a very high bed.

The next day I walked and after that I never walked again. I just accepted it and got a wheelchair.

They tried heel cord surgery. It didn’t help me walk like they hoped it would. When I was home, I crawled everywhere till I couldn’t anymore.



Spinal Fusion

When I was 14, I had spinal fusion surgery to straighten my spine.  A straighter spine was also supposed to help with breathing later on by keeping me up straight and preventing slumping.

I almost died during surgery because they gave me too much anesthesia. My mom said my blood pressure and everything was going crazy. By the grace of God I pulled through.

That was some of the worst pain I’ve been in. I didn’t sleep well for 3 months.

After that surgery, I lost the ability to feed myself. I believe it was because I didn’t feed for awhile after surgery. So then I got a thing to help me feed myself for a while, until I lost arm movement. Then I just let people feed me.


My Trach and Feeding Tube

I got my trach when I was 20 years old. The doctor said to get a trach before I had an emergency, so I did. Looking back, I could have waited a couple more years.

The day of surgery, they said I should get a feeding tube, too, because it can be hard to eat with a trach and I was losing weight. Looking back, it was a good decision to get a feeding tube. That surgery was painless, but the feeding tube was sore for a week.



Ventilator

From 20 years old to 26 years old, I breathed with the trach and just used the ventilator at night.

At 25, I started struggling to breathe. At 26, I decided to go on the ventilator because I was tired of struggling to breathe. I felt like I had more energy again when I went on the ventilator full-time.


Losing the Ability to Talk

When I started on the ventilator full time, I lost the ability to talk.

From age 26 to 30, I would type on the computer or people would have to read my lips for me to communicate. This was the most frustrating thing to ever happen in my life, because I love to talk.


Regaining a Way to Communicate Again

I saw a story on ESPN about Steve Gleason, a football player with ALS. I saw him using a computer that talked for him.

I immediately told Mom that I needed one of those. So I did my research and got one.

The computer uses something called Eyegaze, which can read your eye movements to type. It can also say out loud whatever you’ve typed. It has also allowed me to use a computer again.

Having the ability to communicate again definitely helped me mentally.



My Final Thoughts

We must always keep going and never give up the fight.

I thank God for giving me a great mom because without her, I wouldn’t still be here.

– Matthew


Follow Matthew’s Facebook Page!

Matthew also streams video games on Facebook, and he has a couple goals he’s working on.

  • One is to show the world that disabled people can game and win. Matthew said once that able-bodied people are often shocked when he beats them. People with disabilities can do so much more than most able-bodied people think. And the world needs to know that.
  • Another goal is to make a little money with his online streaming. He needs to reach 250 followers on his Facebook page KGWA Mattyice to do that. Once he hits that number, he plans to do a giveaway.

You can help Matthew reach those goals simply by following his Facebook page, KGWA Mattyice.



5 Replies to “A Tough Road, but I’m Still Here”

  1. Great Story Matthew, we definitely have a ton in common about our lives. I hope to challenge you in a game before to much longer!!

  2. Keep telling your story. Reminds me so much of my son Jason who went through many similar challenges. He sadly passed away in Dec 2020 suddenly and unexpectedly from trache complications. His wish was for others like him to also keep fighting for disability rights. He too could no longer speak more than a whisper but his actions and presence for the last 8 years of his life spoke much louder than any words ever could. He too was an avid gamer and found several adaptive devices when his hands became too weak. May God continue to enpower and bless you.

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