Melanie Ellis ALS Journey

Melanie’s Story

I am writing to share my personal story and journey with ALS (Amyotrophic lateral sclerosis), also known as Lou Gehrig's disease. While I have been a bit hesitant to share, I believe that by sharing my experiences, I can positively impact the lives of others facing this disease.

I have been married for nearly 25 years to my husband, Pete, and we are blessed with two wonderful sons, Trey and Christopher. In addition, we have had the joy of raising our grandson, Bradley, since he was just four months old. One of my prayers has always been to witness the growth and achievements of my children, as well as see Bradley graduate. Thankfully, my prayers were answered, and Bradley graduated in May 2023.

Shortly after his graduation, I began experiencing weakness and fatigue in my right hand, which eventually progressed to difficulty with daily tasks such as using a ladder to get in and out of our above-ground pool. I also noticed a shuffle in my right foot while walking. Concerned, I consulted my doctor, who ordered an MRI to investigate further. The test revealed spinal stenosis, but I was not convinced that was the sole cause of my symptoms. Consequently, the neurosurgeon recommended a consultation with a neurologist, which took some time to arrange as a new patient.

In late October 2023, during what I had anticipated to be a routine test, my entire world changed. The neurologist, with utmost compassion, expressed concern about a motor neuron disease, specifically ALS. He suggested seeing an ALS specialist for further testing, as an ALS diagnosis is typically reached by excluding other diseases.

Over the next few months, I faced challenges in securing appointments with various facilities. Eventually, I was seen by a compassionate team of doctors at UNC, who also suspected ALS. Around the same time, Duke reached out to schedule an appointment for March 2024. Additionally, I had the long-awaited call from the Wilmington ALS clinic, where I was officially diagnosed with ALS following a more intense EMG in early January.

ALS, or amyotrophic lateral sclerosis, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord. It results in a loss of muscle control and worsens over time. Often referred to as Lou Gehrig's disease, the exact cause of ALS remains unknown, although a small number of cases are inherited. Symptoms typically begin with muscle twitching and weakness, eventually affecting the ability to move, speak, eat, and breathe. Unfortunately, there is currently no cure for this fatal disease.

Despite the challenges I face, most days I remain in good spirits. Mentally, I find solace in the support of my loving family, friends, and my beloved pet Tucker. While the journey can be overwhelming at times, I strive to stay positive. Physically, I have had to adapt to changes such as the loss of legible handwriting and the need to eat with my non-dominant hand. I utilize a spinning knob in my car to continue driving, and on wobbly leg days, a rollator assists me with walking. Although I miss engaging in crafts and find cooking strenuous, I am determined to make the most of each day.

In light of my situation, I kindly request that you keep my family, especially my loved ones, in your prayers. While it is tough for me to go through this, I worry more about the impact it has on those who care for me. I encourage you to reach out to them, offering support and love during this challenging time. Please remember to be kind, as we never truly know what battles others may be facing internally. Do not hesitate to ask questions or visit, as I believe brief moments of sadness are natural but can be overcome. Life is too short to waste on negativity.

I choose to live each day to the fullest until the very end. I refuse to give up, and I hope to inspire others as God intended. My life has been enriched by the incredible friends and family I have been blessed with. Even if our paths crossed for just a minute, I firmly believe it was not by accident.

Thank you for taking the time to read my story. I hope that by sharing, I can provide insight and support within our professional community and remind each and everyone of you how important the work we do here is. Together, let us continue to uplift and inspire one another.