Guest Voice: Despite losses from Duchenne MD, I persevere
I've endured many setbacks, but at 37, I'm alive and thriving
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I was born in March 1988 with the umbilical cord wrapped around my ankles three times. My heart rate dropped to zero, and the doctors had to do an emergency cesarean section to save me. I still reached all my milestones like a normal baby.
When I was 6 years old, my teacher noticed I was having a hard time keeping up with other students on the playground. She suggested I see a neurologist. The neurologist performed a biopsy that led to a diagnosis of Duchenne muscular dystrophy (DMD). My mom was upset, as any parent would be.
At 8 years old, I started falling down and getting skinned knees. I got “Power Ranger” knee pads to help.
At 9, I was walking to the kitchen when 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 into my bed because it was very high.
The next day I walked some, but never again after that. I just accepted it and got a wheelchair. When I was home, I crawled everywhere until I couldn’t. I had heel cord surgery, but it didn’t help me walk as the doctors had hoped.
A series of surgeries
When I was 14, I had spinal fusion surgery. A straighter spine was supposed to help with my breathing later on, which it has.
I almost died during the surgery because of a complication with anesthesia. Mom said my blood pressure went crazy, but by the grace of God, I pulled through.
That surgery caused some of the worst pain I’ve experienced. I didn’t sleep well for three months. I also lost the ability to feed myself and lift my arms. I got a device that helped me feed myself for a while, until I lost arm movement. Then I just let people feed me.
My doctor recommended getting a tracheostomy before I had an emergency, so I had that surgery when I was 20.
I only used the ventilator with my trach at night until I started having more problems breathing at age 26. I was breathing heavily and suffering from staying off the ventilator, but I didn’t want to go on it full time. I was in denial, but I finally told myself to just suck it up at 27. Using the ventilator full time gave me more energy, but looking back, I could have waited a couple more years.
It took time to get used to using a ventilator at night. It gave me extreme anxiety. Now, I sleep with earplugs so the ventilator noise won’t wake me.
The day of the trach surgery, my medical team said I should get a feeding tube, too, because it can be hard to eat with a tracheostomy, and I was losing weight. That was a good decision. That surgery was painless, but the feeding tube left me sore for a week.
Losing the ability to talk
When I started using the ventilator full time, I lost the ability to talk. From ages 27 to 32, I typed on the computer, or people read my lips. This was the most frustrating thing that ever happened to me because I love to talk.
I saw a story on ESPN about Steve Gleason, a former football player who’s now living with ALS. When I learned he uses a computer to speak for him, I immediately told Mom that I needed one. After doing some research, I got one.
The computer uses eye-gaze technology, which types for you by tracking your eye movements. It can also speak the typed message out loud. This has allowed me to use a computer again, and the ability to communicate definitely helped my mental health.
At 36, I was in a terrible wreck. I broke my pelvis, right femur, and right knee. I also had mini-strokes. I was in a coma for six days and in the hospital for 18 days. I only remember waking up and a few details.
I was in terrible pain for six months. My pain is better now, but I still have some.
During my coma, I believe I saw Jesus, and when I went to take his hand, I woke up. It was like he was saying, “You’re not done yet.” When I woke up, “Toy Story” was on TV, and one of the characters was saying, “To infinity and beyond,” which seemed fitting.
Now, at 37, I’m here, alive and thriving, and I thank God for that. I am also taking Amondys 45 (casimersen) for DMD and have noticed some slight improvements. I’ve always said my life is in God’s hands.
Never give up. Keep fighting.
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Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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