Raspy Voice Kids Podcast with Seth Poling

Raspy Voice Kids: How were you diagnosed with ALS? How did you react?


SETH: ALS affects everyone differently, so the diagnosis process is often long drawn out. 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 before 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 my 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 at Cleveland Clinic in November 2015. I 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 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 at Johns Hopkins in June 2017. After being examined by a specialist, he confirmed our worst fears that I had ALS.


Raspy Voice Kids: Please explain the thoughts that went through your head and how you decided to handle them.


SETH: For the first couple of years, I was in denial. I refused to believe that I had a terminal illness. I was grasping for any diagnosis that wasn’t ALS. As time progressed, so did my symptoms. At some point, I realized through symptoms and research into ALS, that I unfortunately had every symptom. That was during a break from any doctors because honestly, what could they do? Upon receiving my official diagnosis, I went into ultra health-saving mode. I cut all unhealthy habits and tried to stretch and exercise. More than anything, that was the beginning of this mental and emotional journey that I am still on.


Raspy Voice Kids: When did you realize something was wrong? How did you process that?


SETH: The entire process leading up to my early symptoms was such a whirlwind. I believed everything I was experiencing was directly related to my torn rotator cuff. I was still in denial when I started to twitch in my left arm. I went to see an orthopedic surgeon for a cortisone shot for my right shoulder, the initial symptom onset starting point. I asked the doctor to examine my left shoulder. It seemed to show a partially torn rotator cuff. I thought, oh lucky me. I have two messed-up shoulders.


Over the next six to eight months my twitching spread down my arms and into my upper back. I would have occasional cramps in my forearms. The first red flag for me was that I started to notice twitching in my tongue. The most alarming part was that I would get severe cramps in my throat and tongue. It would be so severe that I would throw up trying to clear my throat. I knew something was wrong. This wasn’t normal. Now the panic and realization that the far-flung idea of ALS was a real possibility.


By this point, I was twitching everywhere except for my left leg. I had considerable weakness in my right hand and arm. My left hand was starting to cramp. My tongue was clumsy. My voice was hoarse. I had to use a device that looked like a large Swiss Army Knife. Except this device was a lifesaver. It was a button and zipper assist. It opened up to reveal different hooks and an open-ended grasp. Without this device, I couldn’t button or more importantly, unbutton my pants. Try being alone in public or at work and you have to ask another adult to help you unbutton and zip your pants. Humiliating, demoralizing, painful. That weighs on a person. Suddenly, your independence takes a quick punch to the gut.




Raspy Voice Kids: Do you ever feel sorry for your situation? Do you ever feel like why me, why do I have to go through this?


SETH: I can’t say that I haven’t thought, why me? But, generally, it’s a fleeting thought. I’m a firm believer that everything happens for a reason. Good or bad. My thought process is that bad things happen to those who can handle such adversity. Unfortunately, but fortunately, God blessed me with an extremely bullheaded and mentally tough deposition. I think growing up playing sports year-round, instilled a don’t quit attitude in me. You’re going to lose, get hurt, get mad, get embarrassed, but never quit.


I took those life lessons to heart. In addition to sports molding my character, my parents and faith had a large impact on my attitude. My parents didn’t allow me to feel sorry for myself. My mother always told me that life’s a bitch, then you die. That was the unfiltered version of, life isn’t fair, get over it. I struggled with this lesson growing up. I had a horrible temper. But, thankfully it stuck with me and I learned to use my temper to my advantage.


Those are the reasons that I don’t say why me. As unfair as it may be, I feel like I can handle this situation and shed a light on a horrific disease.



Raspy Voice Kids: What are your biggest struggles right now? How do you handle those times?


SETH: Great question. This is the hardest part of having ALS, in my opinion. The struggles. Everything is a struggle. Some of the most mundane tasks for you have been internal meltdowns for me. I’ll share a few examples.


I remember when I first felt my independence slipping from the grasp of my weak trembling hands. I was experiencing severe muscle cramps in my legs. I decided to try an Epsom salt bath. I ran a nice hot bath and eased my twitching body into the warm soothing water. Side note, I hadn’t taken a bath in years.


As the water cooled, I decided to get out. I placed my hands on the sides of the bathtub, as I attempted to stand, I realized that I didn’t have the strength to get to my feet. I tried again, but the result stayed the same. I gave myself a pep talk and tried another way. I rolled onto my stomach and I tried to get to my knees. After several attempts, I reached the perfect position. I muster the energy to escape this porcelain prison. Okay, 1, 2, 3… I didn’t go anywhere.


Thankfully Erika was home. I yelled for her to come to help me, but there was one big issue. My wife Erika, was eight months pregnant. She should not be trying to lift her naked husband out of a bathtub. After some laughing and a few heated exchanges, we found that I was too slick and heavy. Insert my Cardiac Care nurse wife. She used a folded sheet under my armpits to stand me up. We overcame adversity, but at the cost of my independence.


That brings me to my biggest struggles right now. The loss of independence is still disrupting my life. Instead of physical disabilities, now it’s communication independence that is a hindrance. I communicate via my eyes with the assistance of an eye gaze communication device. The eye gaze bar tracks my retinas, as I scan the screen, the eye tracker follows my eyes. Once I pause my eye movement, the dwell clicks on whatever I am looking at.


This is where things get difficult. Every night, Erika helps me lay down in bed. I have to be physically stood up, and transferred to bed. That process stimulates my cough reflex. As I begin to cough, my eyes start to water. The list of things that need to be done, doesn’t care that I am coughing, or that Erika has to navigate tubes, alarms, and our children. When I am stressed, my eyes squint and try to shed my tears.


Erika is trying to rush to get me in a comfortable position without clear communication. I am trying to see through tears, and blinding lights, and communicate minor positional tweaks, so the eye tracker can do its job. This is a recipe for disaster.


Ask any successful marriage, what is the key to a successful marriage?


The overwhelming majority will say, communication.


This is the most difficult thing in my life right now. As Creedence Clearwater Revival said, Communication breakdown, it's always the same. Having a nervous breakdown, a-drive me insane.



That is a small glimpse into life with ALS. It is the most frustrating, life-altering, experience that I have ever encountered. I cry every day, not from pain, but from frustration. Mind-bending, body shaking, teeth grinding frustration.



Raspy Voice Kids: What do you want your children to learn from this?


SETH: I want my children to learn SO much from this journey. I want them to learn three main things. Humility, gratitude, and perseverance. The hardest lesson that I’ve had to learn is humility. I foremost had to forget dignity. I had to put my dignity to the side. Nothing is more humbling than having another adult wipe your butt. That’s a tough pill to swallow regardless of your age.


I’ve been so blessed throughout this journey with others' love, support, and generosity. People have been amazing in supporting me and my family. It’s unlikely that my quality of life would be anywhere comparable to what it is currently without others' support. I’m grateful to have friends and family who support me and my family.


Life is full of peaks and valleys, it’s not a matter of if you will experience hardships, but when you will experience hardship. Maybe you will fall at school. Maybe you ask your first crush out, but they say no. Maybe you don’t make the cut for your sports team. Maybe you got fired from work. Maybe you receive the dreaded call from your doctor saying you only have 6 months to live.


What do you do?


Do you give up and quit?


I don’t know about you, but I don’t have much quit in me. Hardship and adversity shall not define us. Adapt and overcome. Prevail in the face of adversity. The fact that I was dealt a tough hand, doesn’t mean that I can’t love and enjoy my life. I refuse to let this disease define me. Through humility, gratitude, and perseverance all things are possible. I hope that my children learn those key points along with many others.


Love, laugh, and be kind to others.


Raspy Voice Kids: Why did you start the SETH Project? What’s your goal? Who are you trying to impact?


SETH: I started the SETH Project because I saw the need to spread awareness about a devastating debilitating disease. I’ve had so many experiences with every walk of life, who don’t have a clue what ALS is. I’ve been spoken too loudly because people think that I’m deaf or mentally challenged. I’ve had people tell me that at least it isn’t cancer. Really? Cancer’s horrible, but they’re treatments. ALS is 100% deadly. No ifs, and, or buts about it. I wanted to change that through education and advocacy.


My goal is to raise awareness for ALS and motor neuron disease through education and advocacy. I hope that the scholarship fund at my Alma Mater, Buckhannon-Upshur High School, will have a direct effect on the future of ALS. The recipient is required to go into a (STEM) based field. (STEM) stands for Science, Technology, Engineering, and Mathematics. Secondly, the SETH Project will support the research and development of life-saving treatments through donations to leading ALS advocacy groups and research facilities. Such as I am ALS, the ALS Association, and (ALSTDI). Thirdly, we plan to set up a volunteer program with local colleges and tech schools, to have (STEM) degree students volunteer to work directly with (MND) patients. That exposure is beneficial for the student and patient.


I’m trying to impact as many people as possible. The adage, out of sight, out of mind, is a prime example of ALS. No one knows anything about ALS until it happens to them. The more exposure people get to ALS, the closer we become to a cure. Together we can help end ALS.


Raspy Voice Kids: What is your connection to football?


SETH: My connection to football started at the age of 7 with Pop Warner football. I was so small that I had to weigh in, in full pads. I continued playing football for Buckhannon-Upshur middle, and high school. I switched from running back to quarterback in my seventh-grade year. I was the starting quarterback for the rest of my career.


My Senior year was a particularly outstanding season. We ripped off 9 straight wins after losing to Morgantown High School 40 to nothing. We finished the regular season 9 and 1. We hosted the first home playoff game in 25 years. Unfortunately, we lost to Jefferson County in the first round of the 2004 triple A Playoffs 20 to 10.


I was lucky enough to receive a scholarship to continue playing football at Fairmont State College as a Quarterback. Unfortunately, I dislocated my shoulder and tore my rotator cuff. Oddly enough, the orthopedic surgeon suggested that I end my playing career if I wanted to play catch with my children. How coincidental that my ALS symptoms started in the same shoulder.


Football will be my favorite pastime. You can’t beat a cool crisp Fall morning in Morgantown for a W V U football game.


Raspy Voice Kids: Please explain the correlation between playing NFL football and developing ALS. Are there others in high-risk careers?


SETH: In a recent study, NFL players are four times more likely to develop ALS.


Researchers examined all 19,423 NFL players who took the field for at least one game from 1960 to 2019 in what the scientists said was the most comprehensive study of ALS risk in professional football players. Previously, smaller studies have also found links between league play and the disease.


The latest study found that 38 players had received an ALS diagnosis during the study period, and 28 had died, a four-fold increase over the rates for the overall U.S. male population adjusted for age and race.


ALS has a well-known face in the NFL Super Bowl champion, New Orleans Saint, Steve Gleason. Steve and his nonprofit the Gleason Foundation have been a pillar in the ALS community for a decade. Other notable NFL players with ALS are Phil Green, Dwight Clark, Derrick Jensen, Tim Shaw, and Werner Smith.


Exercise may trigger the onset of the deadly nerve disease amyotrophic lateral sclerosis (ALS), a new study finds.


The research showed that people who exercised vigorously, and who also carried genes tied to ALS, developed the disease at younger ages than those who were sedentary. The findings suggest that exercise could exacerbate a genetic predisposition to the devastating disease.

"We are used to thinking exercise is good. In this unusual case, intense exercise is bad for you," said study co-author Michael Snyder, chair of the Department of Genetics at Stanford University.

The role of exercise in the development of ALS was controversial. The disease affects anaerobic fast-twitch muscle fibers, but systematic reviews of past research failed to show a connection between exercise and ALS. Because the disease typically presents later in life, it is often referred to as a "two-hit" disease, meaning that a person may have the genes for the disease (the “first hit”), but a second switch must be flipped for that person to get sick. The new study suggests that for ALS, frequent and prolonged exercise may be a "second hit" that turns such genes on or off, thereby leading to neuronal death.


As noted, studies have strongly linked brain injury from concussions and repetitive head injuries. This latest study suggests some cases of ALS may also be caused by brain trauma.


Lou Gehrig reportedly had multiple concussions throughout his sports career. Regardless of whether he had Lou Gehrig’s disease or CTE with features of ALS, this new research raises the possibility that his demise might have been due to traumatic brain injury. And that should serve as a reminder that even as we cheer on those with inspiring athletic talent and win-at-all-cost determination, protecting the health of sports participants should be even more important.


Some studies have suggested that service in the military is associated with the development of ALS – even being as much as twice as likely to develop ALS as those who have not had military service. Despite extensive research into this, scientists still have not yet been able to uncover a link between military service and the development of ALS.


According to the ALS Association, a person’s risk of developing the disease is increased, regardless of the branch of the military they served in, whether they served during war or peace, or where they were posted.


Raspy Voice Kids: I hear that you’re a big WVU fan. Please tell me about your WVU sports fandom. What are your predictions for this season?


SETH: Yes, I am a huge W V U fan. I remember listening to Tony Caridi on the radio as a child. My first W V U memory was watching Marc Bulger beat Boston College at night at home. I went to the game with my dad and my grandpa. It was love at first sight.


Beginning in 1998, I started to get season tickets with my dad, and his buddies. We would travel around the state every Friday night to watch the best local High School game. Then we would go watch the Mountaineers on Saturdays. I was fortunate enough to get season tickets with my dad from 1998 until 2018. During those 20 years, I only missed a handful of games. As my love for West Virginia football grew, so did the success of the teams.


I witnessed arguably the greatest span of W V U football ever. Memories of a lifetime. Unbelievable moments such as Virginia Tech win when everyone rushed the field, the overtime spectacular Louisville game, and of course, watching the best backfield in college football history. Pat White, Steve Slayton, and Owen Schmitt. I will forever cherish those moments.



Can’t forget every Pitt shellacking. I watch and cheer, waiting to hear Country Roads Take Me Home.


As for a prediction for this season, I am your typical Mountaineer fan. I swing for the fence and bet with my heart. I think with the addition of some offensive firepower, the Mountaineers will be reminiscent of Mike Leech and Graham Harrell's Texas Tech air raid offense. Add in the best defense in the Big 12, and I think that we will be 7 and 5. I hope for an even better season.


Raspy Voice Kids: How can people find you and follow your journey?


SETH: People can follow my journey on every major social media platform such as the following: Facebook, Instagram, Twitter, and YouTube. You can find me by searching for Seth Poling or sethpoling10. I recently found a great platform called Beacons. As the name suggests, it shines a light on all of my accounts on one simple-to-use website. You can find my social media accounts. My new blog is on there. I plan to write 2 or 3 blogs per month about my life. You can also find a few publications with links to stories about me. I also have a few links to ways that my followers can donate to help me with any medical or care expenses that I encounter. The cost of living with ALS is extremely expensive. I have a heavy online presence as I try to educate and advocate for ALS. Please consider following my journey and helping me end ALS.


Seth Poling



Raspy Voice Kids Podcast