I am Cory Seth Poling

living with ALS

West Virginia

I'm not sure what the future holds, but with the recently signed bill ACT for ALS, I have more hope and promise than ever before.

My name is Cory Seth Poling. My friends and family call me Seth. I’m 35 years old, born and raised in Buckhannon, WV. I moved to Morgantown, WV 10 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, 10 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 3.5 years old and Bayler is 2.5 years old. We have a family dog named Brier. We live the typical life of a younger 30s married couple with 2 children under 4 years old, despite the fact that I have a terminal illness. I have ALS, more commonly known as Lou Gehrig’s disease. I’ve had symptoms of ALS for 7.5 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 to extend life expectancy by a few short months.

ALS affects everyone differently, so the diagnosis process is often 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 an old injury. After 6 months of continuous twitching and some pain in my shoulder, I decided to see an Orthopedic Surgeon. The orthopedic surgeon scheduled an MRI which showed a torn rotator cuff and labrum. 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 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 an EMG performed 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 an appointment with an ALS specialist 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 an appointment with a leading ALS specialist in June 2017. After being examined by a specialist, he confirmed our worst fears that I in fact 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. 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 worsened and I took several bad falls. One fall resulted in a broken wrist. The other fall resulted in two ambulance rides to two separate hospitals because of a possible brain bleed. I was forced to choose safety over mobility and started to use my power wheelchair.

At the same time I had to stop working. I hadn’t driven by myself for a year plus. My voice was only audible to my wife. My breathing got weaker and I started to use a Bipap during the night while I slept. I used a Bipap for a year and a half. During that time I started to get choked frequently as I couldn’t cough and expel my secretions. I tried to use a Cough Assist machine, but it was too foreign to me and I couldn’t relax enough to benefit from using it.

I was struggling with coughing and my two boys were bringing home the typical daycare germs. A slight cold for my family, meant several weeks of coughing and choking episodes that always resulted in panic attacks. As if things couldn’t get worse, COVID-19 reared its ugly head and everything changed overnight. I already lived an isolated life, but we went into complete isolation for the next 4 months. No caregivers. No friends or family visits. The world was pure pandemonium. This was the new normal for the foreseeable future.

As the pandemic began to ease in the Spring of 2021, my wife and I had a major life decision to make. Would I take the next step in my ALS journey, in many ways the final decision of this journey, and choose to extend my life by having a tracheotomy. Only 10% of PALS (people with ALS) choose to have this procedure. This decision comes with many challenges. A PALS with a trachea requires 24/7 care, which can be extremely expensive and can’t be easily reversed. My wife and I decided that my current status of choking, panic attacks and a global pandemic wasn’t sustainable. I was one bad choking episode away from disaster.

On August 19, 2021, I had a tracheotomy. I spent 1 day in the hospital and then I was released into my wife’s care. Thank God that my wife was a CCU nurse in addition to being a Nurse Practitioner. The next 8-10 weeks were a living hell. I was struggling to adjust to the trachea. My secretions were out of control. My wife was exhausted trying to care for me and my boys, all while working full time. I was a physical and emotional mess. I was 100% reliant on my eye gaze communication device. I could no longer smell. I had to learn even more patience than I ever thought possible.

ALS is so evil. It steals everything from the PALS and their families. Every day is a struggle, but I am so thankful that my family and I made this life extending decision. I’m not sure what the future holds, but with the recently signed bill ACT for ALS, I have more hope and promise than ever before. The burden of ALS is not only physical/mental, but financial. I see a physical 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 enjoyed 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 and day out with a smile on her beautiful face! We live an unconventional life, but it’s our life. We refuse to let ALS define our lives.

Thank you.

Seth Poling

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