Last week, I had the honor of photographing the Poling Family, who just welcomed their new baby boy into the world. Not only are their children adorable, but their strength is unimaginable. If you’re interested in more information about the Poling family and Seth’s ALS diagnoses, please continue reading. I will also be attaching their Go Fund Me account at the end, so make sure to check that out as well!
“My name is Cory Seth Poling. My friends and family call me Seth. I’m 32 years old, born and raised in Buckhannon, WV. I moved to Morgantown, WV 8 years ago. I often say that moving to Morgantown was the best decision of my life, because it eventually led me to meeting the love of my life. I met my wife, Erika, 6 years ago through mutual friends. After numerous attempts to “court” Erika, she couldn’t resist my charming personality and dazzling looks and agreed to go on a date with me! But in all seriousness, Erika and I began dating at the beginning of 2014.
We were engaged after 15 months of dating and married on August 20, 2016. We have 2 sons, Liam Seth Poling and Bayler Michael Poling. Liam is 14 months old and Bayler is 1 month old. We have a family dog named Brier. We live the typical life of a younger 30s married couple with 2 children under 1.5 years old, despite the fact that I have a rare terminal illness. I have ALS, more commonly known as Lou Gehrig disease. I’ve had symptoms of ALS for 5 years and I was officially diagnosed with ALS in June 2017.
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. ALS typically strikes people between 40-70 years old. 90-95% of ALS cases are sporadic, while the remaining 5-10% of cases are familial or genetic. Around 16,000 Americans currently suffer from ALS. The average life expectancy is 2-5 years. Currently there is not a cure and only 2 FDA approved medications that can try extend life expectancy by a few short months.
ALS affects everyone different, so the diagnosis process is often a long drawn out. For me, I first noticed a small muscle twitch in my right shoulder while on a cruise in 2014. I brushed it off and chalked it up as a possible symptom of a old injury. After 6 months of continuous twitching and some pain in my shoulder, I decided to see a Orthopedic Surgeon. The orthopedic surgeon scheduled a MRI which showed a torn rotator cuff and labrium. The surgeon suggested surgery, but advised that I should see a Neurologist prior to surgery to have the twitching looked at further.
I went to my first Neurologist appointment at Ruby Memorial hospital in May 2015, without a care in the world. I had no idea that mine and my family’s lives were about to be changed forever. The Neurologist examined me and determined that I was now twitching in my left tricep, tongue and right shoulder. He showed a general concern, but didn’t elaborate. He suggested that I have a EMG preformed to better understand why I was twitching. Immediately after the EMG; the Neurologist said he could not say with 100% clarity, but he feared that I showed the early signs and symptoms of ALS. Erika and I were floored. I had only heard of Lou Gehrig the baseball player and the Ice Bucket Challenge from the year before.
We left the appointment in total disbelief and decided to seek a second opinion. I scheduled a appointment with a ALS specialist at Cleveland Clinic during November 2015. I had a horrible experience and left that appointment with more questions than answers. We received zero clarification as to if I truly had ALS or not. The only way to diagnose ALS is through symptom diagnostics, there is not a single test that says with 100% clarification yes or no. I shared a few symptoms of ALS, but not enough to say definitively. I basically refused to believe I had ALS and carried on with my life for the next 1.5 years.
Over the next 1.5 years, I started to notice that my speech would slur when I was tired. My family suggested that I seek another opinion. I scheduled a appointment with a leading ALS specialist at John’s Hopkins in June 2017. After being examined by a specialist, he confirmed our worst fears that I infact had ALS. He suggested that I begin taking a medication that was approved by the FDA in 1994 that slows the disease progression by a few months. At that time, it was the only medication on the market. Soon after my diagnosis, the FDA approved the first ALS medication in 23 years. After 6 months of fighting with my insurance company, I was finally approved to begin the IV infusion medication.
Unfortunately, both ALS medications only claim to add months onto your overall life expectancy. It’s like putting a bandaid on the Titanic and hoping for the best. In May 2018, I participated in a clinical drug trial through John’s Hopkins. I did not see any benefit from that drug trial. My overall health has declined at a slower rate than most ALS patients, but progression is inevitable. My balance is poor although my legs are still strong. The burden of ALS is not only physical/mental, but financial. I’ve battled to keep working, but it’s beginning to become overwhelming to use a standard computer and preform office work. I see a physical therapist, occupational therapist and speech therapist weekly to attempt to stay proactive as my disease progresses.
I refuse to give up or quit fighting. I try to stay upbeat and positive for myself and my family. Every day truly is a gift from God. I enjoy working, watching my boys grow, spending time with friends and family, sports, hunting, outdoors and my wife. My wife has been by my side through all of this and hasn’t skipped a beat. She is my hands, legs and voice. She works full time, raises 2 boys (some would say 3 boys counting me), takes care of our dog, is my nurse and does it day in day out with a smile on her beautiful face! We live a unconventional life, but it’s our life. We refuse to let ALS define our lives! “
If you find it in your heart to make any donation to the Poling family, please follow this link to do so. Any amount will make a difference.
