Living with Duchenne muscular dystrophy (DMD) has reshaped my life, taking away abilities I once cherished. Simple acts like brushing my teeth, getting dressed, drawing, snacking, writing neatly, painting, and playing video games are now challenges. I also deeply miss horseback riding and swimming with my brother Isaac, who also had DMD and passed away three years ago due to heart complications. His loss was devastating, but memories of our bond bring comfort. We found strength in knowing we weren’t alone, as two uncles also had DMD. Today, as the disease progresses, I rely on caregivers, a ventilator, and a powered wheelchair.
Despite these physical hurdles and the risk of serious complications, I don’t see DMD as a life-ending sentence. It’s a part of who I am. My limitations do not define me; I strive to overcome them daily with support and strength. For anyone seeking Backup Child Care Advice Diagnosis Or Treatment related to complex medical conditions, understanding diverse experiences is crucial, though this story focuses on personal resilience rather than direct medical guidance.
My Morning Routine
My day starts with a call to Glenda, my caregiver since 2006, who is like family. She helps me begin my day, starting with cleaning my face, adjusting my breathing masks, and recording my vital signs, as advised by my cardiologist and doctor father. Using a patient lift, Glenda and another assistant help me move from my bed to my wheelchair. Once seated, she helps me brush my teeth and checks my vitals again, as they change when I sit up. I then use a cough assist machine to clear my throat of mucus, reducing the risk of chest infections.
I also take a peppermint tablet (Colpermin) to ease stomach discomfort from overnight ventilator use. I take it without the capsule because swallowing is difficult.
Medication Regimens
My medication routine is consistent every day. Because of weak throat muscles, I dissolve all tablets in water as I cannot swallow them whole.
In the morning, I take three heart medications to support heart function and slow the progression of cardiomyopathy, a heart condition caused by Duchenne.
Besides heart medication, I am gradually reducing deflazacort (Emflaza in the U.S., Calcort in the U.K.), a corticosteroid for Duchenne, usually for younger patients. A DMD specialist in the U.S. explained that since I now fully rely on a BiPAP ventilator, the benefits of steroids for my lung health have plateaued. I began full-time BiPAP ventilator use in December 2019, after Isaac’s passing.
For bone health, I receive zoledronic acid infusions (Reclast, Zometa, Aclasta) every six months. This IV therapy at the hospital helps maintain bone density and treat osteoporosis, both affected by limited mobility from DMD and long-term deflazacort use.
The Rest of My Day
After moving to my home office, I check soccer news and have coffee before starting work with K9Assistance. I find businesses willing to welcome assistance dogs.
To relax after work, I watch favorite TV shows and listen to music, from classics like Marvin Gaye to modern pop like Lady Gaga.
Before bed, I talk with my parents or chat with my partner via Zoom or phone.
My bedtime routine is the reverse of my morning one. My caregiver brushes my teeth, uses the patient lift to move me to bed, and adjusts my breathing masks for sleep.
Expecting the Unexpected
As my condition has progressed, and I depend fully on a ventilator, life has become more unpredictable and frightening. I hold onto hope, believing in support from God and loved ones through every crisis.
Sometimes, during transfers, my ventilator disconnects from the battery, or the breathing tube wears out. Maintaining the ventilator system, having backups, and preparing for equipment failure are essential for safety.
In July 2022, I unexpectedly got dengue fever. It was the worst experience, even compared to surviving pneumonia years before. On hospital admission day, I felt breathless even with the ventilator due to a high fever and lung weakness. Then, during a bed transfer, my equipment failed!
I thought it was the end. After struggling to breathe, I passed out. Luckily, the hospital staff in the high-dependency ward acted quickly and rescued me. I woke up in bed, connected to a hospital ventilator with monitoring. Crisis averted! This taught Glenda and me to always have a backup plan.
Psychosocial Challenges
Traumatic near-death experiences are almost daily for a DMD survivor, taking a toll on my emotional, mental, and social well-being. Three months after my near-death experience, I was diagnosed with ADHD by a psychologist. (ADHD and other neurological conditions are not uncommon in DMD patients.)
I had long felt different, even before using a wheelchair. My grades dropped, and my mental health declined after Isaac’s death, leading to depression and suicidal thoughts.
Antidepressants worsened my state. I am now reducing them, along with deflazacort, which helped my lungs but caused chronic anxiety, depression, and insomnia.
Regarding relationships, DMD doesn’t stop me from forming healthy bonds. Besides my family, I am close to Glenda, who has cared for me since I was 10. Our relationship has become strong through health ups and downs. I wouldn’t be here without her.
Hope, Against All Odds
Despite DMD’s challenges, it’s a significant part of my identity. It’s made me a resilient rare disease survivor. Despite difficulties, living with DMD is rewarding. Like in “The Shawshank Redemption,” hope is essential, and “no good thing ever dies.” I hope my story offers you encouragement and joy.
Muscular Dystrophy News Today is a news and information website about the disease and does not offer medical advice. Always consult with healthcare professionals for medical advice and treatment.
