A Take on a Life Worth Knowing - Seth Poling

Once upon a time, there were two brothers named Liam and Bayler. Their father, a successful businessman and advocate, was diagnosed with a terminal illness when they were young boys. Despite his illness, their father was determined to leave a legacy for his sons; he instilled in them a love of excellence and a drive to make a significant impact on the world. As the boys grew older, they both became successful in their own right. Liam became a renowned physicist and Nobel laureate, while Bayler became a successful humanitarian and human rights lawyer. Despite the limitations; their father's illness placed on their family, the brothers remain determined to make a difference in the world. Liam devoted his career to advancing scientific understanding and making groundbreaking discoveries in physics. Bayler used his legal expertise to advocate for the rights of marginalized communities and defend victims of injustice. Through their hard work and dedication, the brothers were able to ac...

  As I sit here, reflecting on my nearly decade-long journey living with ALS, I am overwhelmed by the hardship and unimaginable heartbreak accompanying this devastating disease. My family and I were thrown into uncharted territory after being diagnosed, forced to learn everything about ALS alone. We pushed every milestone to the limit, hoping to maintain some sense of normalcy and independence for as long as possible. Looking back, I realize in my desperate attempt to hold onto my old life. I may have pushed myself and those around me too far. I tried to drive for too long, refusing to acknowledge the limitations ALS was placing upon me. I tried to walk for too long, hoping my legs would remain strong. I tried to work for too long, determined to continue contributing to my family's financial stability. I tried to stay home without proper supervision for too long, reluctant to admit that I needed constant care. I tried to eat by mouth for too long, throwing caution to the wind and t...

Introduction: Today marks the sixth anniversary of my ALS diagnosis, a milestone that triggers a mixture of emotions within me. As I look back on these past years, it's hard to believe how much changed since that fateful day when my life took an unexpected turn. In this blog post, I want to share my journey- the challenges I faced and the lessons I've learned. A Cruising Start: It all began almost nine years ago during a cruise with my then-girlfriend, now wife of seven years, Erika. The symptoms of ALS manifested themselves, casting a shadow over what was supposed to be a carefree and joyful time. Little did I know then that this cruise would mark a life-altering battle that continues to the present. Living with ALS: Living with ALS has encompassed a significant portion of my existence. For a quarter of my life, I have faced the daily challenges and uncertainties brought about by this relentless disease. My wife, Erika, has been my unwavering caregiver, demonstrating love and...

  Living with ALS can be challenging, especially when finding ways to entertain oneself. With limited mobility, it can be hard to engage in physical activities, and with the absence of football and basketball, what can one watch to pass the time?   Fortunately, with the power of technology and the internet, there are endless possibilities for entertainment. A strict daily routine has helped me manage my symptoms and maintain my health. However, with periods of downtime, I have become an expert in finding ways to keep myself entertained. With Comcast TV and a web-based application that allows me to control every TV in the house with my eyes, I have become the TV master of the Poling household. So, what do I like to watch? My list of recommendations is a compilation of various streaming services and YouTube channels. Here are some of his favorites: Top Movies The Glass Castle Windfall The Rental Blood & Gold Extraction 2 Super Mario Bros The Movie  Top Shows Florida Ma...

In 1997, the West Virginia Young Writers competition saw a remarkable entry from a 3rd-grade student named Seth Poling. Seth's submission was a heartwarming piece about his beloved great-grandfather, Mox Anderegg, who he described as a kind, positive, and loving presence in his life; despite his great-grandfather's illness and the loss of his wife, Mary Anderegg, Seth's great-grandfather remained a source of strength and joy for the entire family. Let's look at Seth Poling's winning entry and celebrate the power of intergenerational love and support. "I would like to write about my grandpa. My grandpa is nice and lonly. He always has a positive adotud! I love him to. As a friend and someone that I can talk to about my problems. He loves it when I come to talk to him. He tries to help me study for tests at school. When I go to the store with my mom he says get me milk, beans, icecream, and icecream cones. When my mom and I come back. He say's to me that I ...

Dear Erika, Where should I begin? Words cannot justify the immense love and gratitude I feel for you. You have been my rock and pillar of strength, my unwavering support through the most challenging journey of my life. Thank you from the bottom of my heart for everything you have done for me over the past nine years of living with ALS. From the moment we heard the diagnosis, I knew that I had you by my side. Your tears and despair mirrored mine, but you never let that stop you from being there for me in every way possible. You took on the responsibility of caring for me with such love and devotion that it still leaves me in awe. You gave so much of yourself daily, never complaining or asking for anything. You have been an incredible mother to our boys, Liam and Bayler. Even though you had to take on the role of both parents, you never let them feel anything less than loved and cared for. You worked tirelessly to provide for the boys; while being there for me every step of the way. You...

Traveling is an exciting way to explore the world and experience new things. As someone who has had the privilege to visit many destinations, I can attest to the enriching experiences of traveling. Unfortunately, my travels became more challenging after I received an ALS diagnosis in 2017. Nonetheless, I am grateful for the memories I have created through my travels, and I hope to squeeze in a few more trips with the time I have left. In this blog post, I will share the top travel destinations I've been to and destinations I would like to visit. Top Travel Destinations I've Been To : Oranjestad, Aruba - Visit Oranjestad to enjoy the beautiful beaches, colorful architecture, and delicious local cuisine. Playa Del Carmen, Cancun - Playa Del Carmen is a perfect destination for beach lovers who want to explore ancient Mayan ruins and enjoy the vibrant nightlife. I highly recommend an all-inclusive resort. Murrells Inlet, South Carolina - This peaceful destination offers excellent s...

This story is about my sons, Liam and Bayler; their remarkable story showcases the love and compassion of a child toward their father living with ALS. Even at the age of 20 months, Liam would wake up in the morning, check on his father, and ask what he needed. He would cover him with a blanket, put his glasses on, suction out his mouth, and hug and kiss him. As he grew older, Liam learned how to help with suction and cough assistance, feed his father, reposition his hands and feet, turn lights on and off, open and close doors, and even drive his wheelchair. Liam's love and dedication toward his father are undeniable. Bayler is a special boy, but he is not as gentle-handed, so he used to read to his father. He would sing, tell stories, and reassure his dad when needed most. Bayler inherited his father's hot and cold personality, similar to a sour patch candy, sour but sweet. Unfortunately, Liam and Baylers stories are not unique. In the United States, approximately 1.3 million ...

Living with ALS can be challenging, especially when finding ways to entertain oneself. With limited mobility, it can be hard to engage in physical activities, and with the absence of football and basketball, what can one watch to pass the time? Fortunately, with the power of technology and the internet, there are endless possibilities for entertainment. A strict daily routine has helped me manage my symptoms and maintain my health. However, with periods of downtime, I have become an expert in finding ways to keep myself entertained. With Comcast TV and a web-based application that allows me to control every TV in the house with my eyes, I have become the TV master of the Poling household. So, what do I like to watch? My list of recommendations is a compilation of various streaming services and YouTube channels. Here are some of his favorites: Top Movies The Bold The Champion 1922 The Upside All Quiet on the Western Front Mosul Hostiles The Mountain Between UThe Vanishing Prisoners Hol...

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects the nerve cells responsible for controlling voluntary muscle movement. It's a debilitating condition that can deprive a person of their physical abilities and, in some cases, their mental capacities. For many people with ALS, the disease's progression can feel like a loss of control over their bodies and lives. It's not uncommon for individuals with ALS to experience changes in their personality or behavior, such as becoming more irritable, impulsive, or aggressive. Frontotemporal degeneration or frontotemporal dementia (FTD) is a group of disorders that causes progressive damage to the temporal and frontal lobes of the brain associated with personality, behavior, and language. Loss of function in this part of the brain can lead to impulsive behavior and speech difficulties. Usually, FTD does not affect the parts of the nervous system that co...

As a person with ALS, medical marijuana has been a game-changer. It has provided relief for various symptoms that I experience daily. Medical marijuana has been essential in helping me manage my pain, anxiety, excessive secretions, insomnia, and loss of appetite. One of the most significant benefits of medical marijuana is its ability to relieve anxiety. Living with a terminal illness can be incredibly stressful and can often lead to feelings of anxiety and depression. Medical marijuana is effective in reducing anxiety levels and promoting relaxation, which has been essential in helping me cope with my illness. In addition to anxiety relief, medical marijuana has been essential in managing my pain levels. The pain I experience can be unbearable, and prescription drugs often have unfavorable side effects. Medical marijuana has been a safe and effective alternative to traditional pain medications. It has provided me with much-needed relief. Another benefit of medical marijuana is its ab...

As someone living with ALS for nearly nine years, I know the challenges of living with this disease are all too real. From the progressive weakening of your muscles to the loss of independence and control over your body, it's a difficult journey. The most commonly asked question I receive is if I would recommend a tracheostomy to someone living with ALS. But, my desire to spend more time with my family and loved ones is stronger than ever and obfuscates my sentiment. ALS is a journey few are willing to prolong since only 10% of people living with ALS will proceed with a tracheostomy. I'm the type of person who doesn't give up easily and is willing to try anything once, and the idea of a tracheostomy to extend my life is something that I knew I would consider from day one of my ALS journey. So, the thought of living with a tracheostomy was daunting. It's not just about extending my life. It's also about the quality of life I'll have. The thought of my dependence...

Meet Benny Mac, the UPS man, he's got a story to tell Lost a finger on the random, but it didn't break his spell He's got a positive attitude, and never brings him down. He'll still get your package to you, with or without that crown Ben, Ben, he's the man. Missing a finger, but still doing all he can He's got the skills, he's got the drive He'll get your package to you, rain or shine. He's not your average delivery man, he's got a unique style He may be missing a finger, but he's got a heart of a mile He's got a smile on his face, and a spring in his step He'll get your package to you, with a smile and a rep. Ben, Ben, he's the man Missing a finger, but still doing all he can He's got the skills, he's got the drive He'll get your package to you, rain or shine. Don't underestimate Ben, he's got more than meets the eye He's got a determination that'll make you wanna cry He's got a positive attitud...

Do you ever feel like you have a split personality? One moment you are content with life, and the next minute you are completely discombobulated, and the world's imploding. The same for the story of one, Dr. Henry Jekyll, nicknamed in some copies of the story as Harry Jekyll, and his alternative personality, Mr. Edward Hyde, is the central character of Robert Louis Stevenson's 1886 novella Strange Case of Dr. Jekyll and Mr. Hyde, in the story, he is a good friend of the main protagonist Gabriel John Utterson, Dr. Jekyll is a kind, respected English doctor who has repressed evil urges inside of him, he attempts to hide this; but develops a type of serum that Jekyll believes will effectively compartmentalize his dark side, but he transforms into Edward Hyde, the physical and mental manifestation of his evil personality, but this process happens more regularly until Jekyll cannot control when the transformations (Dr. Jekyll and Mr. Hyde) I can relate to Mr. Jekyll because I have ...

  Erika, My Love , My Everything  Erika, my love, my shining star,  You light up my life, from near and far. With your bright eyes and your gentle smile,  You make my heart race, all the while. Your laugh, like music, fills my ears,  And chases away all my fears. With you, I feel complete and whole, Together, we'll weather any storm,  we'll take on any role. Through the highs and lows, you're by my side,  With you, my love, I'll forever abide. With every day, my love for you will grow,  Erika, my love, my heart, I'll never let go. You are my everything, my reason to live,  With you, my love, my heart will forever give. Forever and always, my love for you will stay,  Erika, my love, with you, forever I'll stay. Seth      

What does my ALS support system mean to me? My ALS journey has been difficult, but I am grateful for the incredible support system by my side every step of the way. The love and support of my family and friends, both in real life and on social media platforms like Facebook and Twitter, have been invaluable in helping me to stay strong and keep fighting.   When I first received my diagnosis, I felt overwhelmed and alone. But my loved ones were there for me, offering encouragement and a listening ear when I needed it most. They helped me to see that I was not in this fight alone and that there were people who cared deeply about me and wanted to help me in any way they could. While on social media, I found a community of people going through similar struggles. They shared their stories, offered advice, and provided a sense of camaraderie that I found incredibly uplifting. I connected with people from all over the world who understood what I was going through, and it helped me to feel ...

  My dear boys, my heart and pride,  With you, my world feels so alive. From the moment I held you in my arms,  I knew that my love for you would never harm. Watching you grow, learn and play,  Fills my heart with so much joy each day. I'm proud of the men you're becoming,  And the kind hearts you've been drumming. I promise to guide you through life,  And be there through joy and strife. I'll teach you to be strong and true,  And to always follow through. I'll be your shoulder to cry on,  And your hand to hold when things are gone. I'll be your guide, your mentor, your friend,  Until the very end. I love you more than words can say,  My dear boys, my heart and pride, you'll always be. Forever and always,  Dad (Seth)      

Job Description: Caregiver for a XX-year-old client , living with AMYOTROPHIC LATERAL SCLEROSIS (ALS, Lou Gehrig disease). The client has a tracheostomy and requires mechanical ventilation 24/7. The client has minimal movement and communicates via an eye-gaze communication device. The client splits time between his bed and his power wheelchair. Location: Caregiver Schedule Availability Monday - Friday 6pm-8pm ## Saturday Sunday 4 Hour Shifts, typically 10am-2pm ## Monday Wednesday Friday 8am-12am *** Tuesday Thursday 8am-11:30am *** Monday Wednesday Friday 11am-4pm *** Tuesday Thursday 11:30am-5pm *** ## = Immediate Availability *** = PRN (Per Request Needed) RESPONSIBILITIES: Follow the written client service plan, which may include the following services: Companion Services - Limited assistance and lite hands-on care. Provide companionship, safety, and supervision for the client. Homemaker Services - Assist with daily activities (lite hands-on care). Includes Companion Care. Tasks m...

First, there was Black Friday... Then Cyber Monday… By now, you’ve probably heard of #GivingTuesday – the global day of giving back! And while it’s a great day to raise money for ALS, #GivingTuesday is trending on all social networks, making it the best time to share your ALS story. Please share your stories on social channels in the hopes of inspiring others to join us in the fight against ALS. Remember to include the hashtags #GivingTuesday and #EndALS, and tag in your Facebook post or Tweet. In honor of #GivingTuesday, I have compiled a list of my favorite ALS organizations and friends living with ALS. I implore everyone to consider helping me #EndALS. ALL donations are tax-deductible.   If you would rather show your support in another way, sign the  petition to encourage FDA to hold an AdComm for NurOwn ALS Organizations The SETH Project IamALS Team Gleason ALSTDI - Sandra Marlowe The ALS Association Hope Loves Company Brigance Brigade Live Like Lou Hop On a Cure Projec...

  Does ALS hurt, is one of the most commonly asked questions I receive. So, lets find out. ALS damages and then kills the nerves that send messages to our muscles. For most people, that means a gradual weakening of the muscles and loss of strength.   Direct pain in ALS is not common. In other words, it does not hurt as the nerves begin to die. But it is important to be aware that pain can be caused by issues associated with the disease, such as lack of joint mobility and muscle cramping.   When looking at pain and ALS, it is important to understand that loss of functioning in the muscles and other body parts can have numerous effects.   Common issues experienced by ALS patients include:   Joint pain because of lack of movement. Whilst ALS does not cause pain itself, lack of movement over a long period can have an impact on joint mobility and lead to discomfort. Muscle spasticity, cramping, twitching, and muscle contractions are not unusual in ALS, and this can a...