A Take on a Life Worth Knowing - Seth Poling

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...

  Random Facts About Me I am part of the 10% of people living with ALS who proceed with a tracheostomy. I can NOT smell due to no airflow through my nose with a trach unless during suction. I type and communicate with ONLY my eyes, in addition to driving my wheelchair. I am ambidextrous; I eat, write, and shoot basketball left-handed. I throw, kick, shoot a gun and bow, and swing right-handed. I can write, play basketball, and golf right and left-handed. Only 10% of the world is left-handed, and only >1% are ambidextrous.  I have blonde hair, blue eyes, and a red beard, 1% of the world's population has those traits. Thanks to the MC1R gene. I can still feel everything head to toe, despite being paralyzed. I sleep in the same spot ALL night long without moving. Despite being quadriplegic, some bodily functions work as the following: my brain, eyes, and the ability to use the bathroom. I have NOT used a phone in 3 years. I have NOT eaten or drunk by mouth in 2 years. I ONLY c...

 I read an article the other day about friendship. The article made me dig deep into my personal life. A lot can change in seven years, especially in the ALS world. It takes seven years to restore bad credit. Seven years to finally digest that piece of Double Bubble you swallowed and seven years to grow a new set of skin cells. (OK; thanks, Google, for this last one, because I had no idea that was even a thing). But would you believe me if I told you that every seven years, we go through a  profound change? Not only are you likely in a very different place in your life, but a study shows there is a good chance you have replaced half of your closest friends with new ones. Whoa, every seven years, you replace half of your BFFs!?!? No way this information can be correct, right?  After learning about this mythical seventh-year reaper of friendship, I analyzed my friends. Assuming my math is correct, I have cycled friends five times during my thirty-five years of life. That me...

  My days with ALS can be mundane. The days can become a gauntlet of boredom as I don’t have the luxury to escape my daily routine. My days consist of waking up between 5-6 am. I stay in bed until 10-11 am. I stay in bed in the morning because I get restless in my wheelchair after 8 hours. Getting out of bed later allows me to see my family for a couple of hours after work and school. Every Tuesday and Thursday, I have Physical Therapy between 9-10 am while in bed. Monday, Wednesday,y and Friday are shower days at 11 am. I usually spend the afternoons in my wheelchair in my living room the rest of the day. I get uncomfortable and lay down at 7 pm. I go to sleep at 10 pm. In my experience with ALS, I’ve found that a strict schedule helps me maintain my symptoms. Additionally, I’m obsessive-compulsive and a creature of habit. My routine leaves long periods for me to entertain myself. I spend that time on the internet and watching tons of TV. I sprinkle in advocating for ALS, social m...

Thank you, everyone, for their love and support since my recognition last Friday. I was truly honored to be back at BUHS. I saw a team of young boys look adversity in the eye and come out as a group of men. Good luck, Bucs. Beat PB. On a personal level, last week's festivities, and the weeks prior, came at a cost. Unfortunately, this is NOT easy to share, but this is what living with #ALS entails. I had a painful #trach change the day before the game. The surgeon had to try three times to get my trach in place. Due to granulations, the surgeon had to use all of her weight to get it placed. (Subconsciously I was saying every expletive known to mankind) I accidentally peed in my chair later that evening. Friday morning, Gameday, I had another accident, and I could not get up quickly enough to the bathroom. Feeling discouraged, I gathered myself just in time to leave for the game. The game was superb. I loved every minute of the night. Saturday morning, the Polings, headed to Mt. Sto...