I am Justin Upchurch
living with ALS
While ALS may determine how or why I die, I will not allow it to determine how I live my life.
My name is Justin Upchurch. I’ve been married to my amazingly talented and beautiful wife for 20 years and we have three wonderful children. I’ve always been a fairly healthy individual, rarely getting sick or needing to go to the doctor, and aside from a fractured collar bone, I never had a serious injury from playing sports throughout my childhood and teenage years. As an adult I remained active by playing pick-up basketball games with friends, men’s softball, and regularly exercising by either going to the gym or jogging. In all honesty, while I valued my health, it was something I never felt like I needed to be all that concerned about.
That all started to change for me in May 2019. It was then when I first began to notice my biceps twitching for no apparent reason. I was in my 2nd to last semester of grad school, so I attributed the twitching to nearly two years of additional stress (I still had responsibilities at home and work) and poor sleep habits. However, after graduating a few months later, the twitching persisted and became incessant. So, I made an appointment with a neurologist in November 2019. After conducting a neuro exam, a strength assessment, and an EMG, the neurologist diagnosed me with benign fasciculation syndrome and essentially told me there wasn’t much for me to worry about.
Fast-forward eight or nine months later — the twitching had progressed to my legs, my chest, and, sometimes, my back. In addition, I started noticing changes with my hand dexterity, while at the gym I felt like I was getting weaker rather than stronger, and while jogging it felt like my endurance was decreasing rather than increasing. I made another appointment with different neurologist hoping for better answers, but nowhere in my mind was I thinking ALS.
But, sure enough, after another EMG and an MRI this time around, I was diagnosed with ALS in December 2020 at the age of 39. It felt like the world had stopped for a few seconds after hearing the news. My brain was trying to process what I’d just heard but couldn’t quite keep up. Once it did, my first response was to talk about next steps and getting a second opinion. It wasn’t until I left the doctor’s office that I broke down and cried in the car with my wife.
On January 29, 2021, my diagnosis was confirmed in Atlanta, GA.
Although there are still so many unknowns that come with living with ALS, I have decided the following:
1. While ALS may determine how or why I die, I will not allow it to determine how I live my life.
2. I will fight this disease. I will fight for a cure. I will fight for my wife and kids. I will fight for those who have lost their battle with ALS. And I will fight for and with those who are living with ALS.
3. I will hope. Despite the circumstance I am able to hope because God is good. I am able to hope because of the love and support from my family and friends. I am able to hope because Love Always Hopes.
May those who happen to hear my story know that no matter what life throws your way, there is hope and you are loved, valued, and enough.