SETH POLING'S STORY
SETH POLING'S STORY
ALS affects everyone differently, but often leads
to a complicated & drawn-out diagnosis. Seth's journey to an ALS diagnosis was no different.
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A family diagnosis ALS is a diagnosis impacting the whole family. It's not uncommon to catch Liam or Bayler directing Seth's wheelchair like an air strip controller, jumping In Seth's lap for a ride "to the moon" as Seth lifts Into the air, or jumping in to help their dad in other ways. Erika works a full time career as an APP at J.W. Ruby Memorial Hospital In rheumatology.
Seth and Erika's families have become flexible In many ways to support the family and contribute as care takers bridging gaps between the care team that they employ. People with ALS eventually require care twenty four hours a day, seven days a week - a cost that often comes out of the pocket of the family.
SETH POLING'S STORY
SETH POLING'S STORY
"I don’t know about you, but I don’t have much quit in me.
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.
Many people would have given up and waved the white flag but not Seth. He looked his diagnosis square in the eyes and saw an opportunity. So, he took action and founded The SETH Project.
Through his battle with ALS, Seth saw a need to educate and spread awareness about this devastating, debilitating, fatal disease. He has had so many experiences with every walk of life who are not sure what ALS is. Seth has experienced being spoken too loudly because people think he is deaf or mentally challenged. He has been told at least it is not cancer; Really? Cancer is horrible, but there are treatments. ALS is currently 100% deadly. No ifs, and, or buts about it. He has encountered healthcare workers with minimal experience or training working with ALS/MND patients.
Seth's Diagnosis
Seth's Diagnosis
Early Indicators
Early Indicators
It started in 2014 while on vacation; Seth noticed a small muscle twitch in his right shoulder. Chalking it up to an old football injury, he did not think much of it. Little did he know that a small twitch would lead to the diagnosis that would flip his world upside down.
It took six months of constant twitching and mild pain before he would see an Orthopedic Surgeon. The surgeon confirmed there was indeed an old injury and recommended surgery; but advised that he should see a Neurologist to have the twitching evaluated. In May 2015, he went to J.W. Ruby Memorial Hospital in Morgantown, WV to see a Neurologist.
Continued Symptoms and Diagnosis
Continued Symptoms and Diagnosis
The neurologist Seth was referred to showed general concern as the twitching had progressed to Seth’s tricep and tongue. Additional testing revealed there was a possibility that he was showing early signs and symptoms of ALS. Seth and his family were floored and left that appointment in disbelief. Since there is no single test to identify ALS positively, a positive diagnosis can be made through symptom diagnostics. Seth shared a few symptoms of ALS, but not enough to say definitively.
Seth lived the next 1.5 years in denial and carried on with his life as normal. Then, more symptoms crept in - muscle weakness, more twitching, and slurred speech when he was tired. Seeking a second option, Seth scheduled an appointment with a leading ALS specialist at Johns Hopkins. Following that appointment, in June of 2017, his worst fears came true; he was diagnosed with ALS.
Learn More About Seth
Learn More About Seth
Oh, one thing we forgot to mention, Seth is a funny guy – always laughing and cracking jokes. So, go check out his blog and read more about his struggles, daily life, and even movie reviews.
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