BUCKHANNON — On Tuesday, September 20, the Rotary Club of Buckhannon-Upshur welcomed Mary Alice Poling to speak about ALS (Amyotrophic Lateral Sclerosis). Poling is mother to a Buckhannon-Upshur High School graduate Seth Poling, whom was diagnosed with the disease in 2017. Poling discussed the disease, how Seth and the family manage it, her self-published book and more.
Poling presented those in attendance with a fact sheet on ALS with a brief bio of Seth on the front. Poling referred to many of the facts on the sheet during her presentation, including the types of ALS. Poling explained that ALS can be either genetic or sporadic. She shared that prior to Seth’s diagnosis, she was unaware ALS could be sporadic and thought it was a disease passed down by genetic or familial association. Poling said, “Sporadic is the most common form of ALS and it makes up between 90% and 95% of all cases. These are random and we have no idea why these people have it. Familial ALS is the type that is passed down from generation to generation. Seth has the sporadic kind so we don’t know what caused it.”
“ALS affects people differently so the diagnosis process is often long and drawn out. It took us from 2014 to 2017 to get a diagnosis for Seth. That took us from Ruby to Cleveland Clinic and then to John Hopkins,” said Poling. Poling explained Seth’s first symptom was a twitch in his shoulder and it was initially thought that this was a symptom of a football injury and would “be an easy fix.” Poling summarized the years of doctor’s visits that finally led to the devasting diagnosis.
Poling then began to discuss how the disease progressed and how the kindness of many people has been a tremendous help. Poling shared that as the disease worsened Seth would have to learn new ways of doing things but was always adamant to keep fighting. Poling mentioned a special individual “the UPS man” who frequently checked on Seth to make sure he hadn’t fallen at home, as frequent falls were part of the initial progression of the disease for him. Poling shared that to this day, the UPS man still stops by just to make sure that Seth is okay.
Seth Poling is a father to two young boys. Poling shared, “The boys haven’t known any different.” She stated that the youngest boy “thinks his daddy’s muscles are going to grow back,” which would allow Seth to play games with them. However, Seth has found other ways to play of which Poling shared, “He will let them sit on his lap and drive his chair and I’ve told him he is pretty brave to let a 3-year-old be operating his chair.” Poling also noted the boys are very helpful and have even learned to assist their father in cough assist/suctioning techniques.
As a way to help Seth’s boys and other children, Poling wrote a book titled “My Daddy has ALS”. The book is a great resource for families that have or have had ALS in their lives. It is also an educational resource with information to learn more about ALS.
Poling shared some facts about ALS, which were also confirmed on uofmhealth.org.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, involves degeneration of motor neurons that control muscles, causing muscle wasting and loss of voluntary muscle control. ALS eventually leads to an inability to breathe and ultimately death. ALS occurs in approximately one to four per 100,000 individuals and it is estimated that over 30,000 Americans are living with ALS. Each year 6,400 people are diagnosed in the U.S.
• There is no cure for ALS and the disease is fatal.
• The average ALS survival is two to four years after diagnosis.
• There are two types of ALS: Around 90% of ALS cases are not inherited, termed sporadic ALS, while 10% are inherited, called familial ALS.
• Gene mutations linked to ALS have been identified in 70% of patients with familial ALS.
• The cause and mechanism of ALS remain unknown in most cases.
• The rate of ALS is higher in the midwest than in other parts of the country.
The onset of ALS may be so subtle that the symptoms are overlooked. However, each individual may experience symptoms differently, depending on which muscles in the body are affected. The symptoms may include:
• Weakness in muscles of the hands, arms or legs
• Slurred speech or difficulty chewing or swallowing
• Tight and stiff muscles
• Difficulties with memory or decision-making
• Inappropriate crying or laughing
In later stages of the disease, individuals may have trouble breathing and face an increased risk of pneumonia.
Diagnosing (ALS) can be difficult because there is no single test or procedure to confirm the disease. Moreover, since many neurologic diseases cause similar symptoms, appropriate tests must be conducted to exclude the possibility of other conditions first.
There are three treatments available that lengthen life:
• Medication taken twice a day
• Non-invasive ventilation: A therapy involving wearing a mask over the nose to take deep breaths with less effort, using a portable machine. Can be used intermittently
• Diet and nutritional therapy, to prevent weight loss and in some cases, increase weight
ALS by the numbers
• Every 90 minutes someone is diagnosed and passes from ALS
• 90% of cases occur without a family history
• Onset is usually between the ages 40 and 70 years
• By 2040, ALS incidence is predicted to increase worldwide by 70%.
After hearing Poling’s story and understanding the facts, one can see why diagnosis often takes years. As noted above there is not a diagnostic test to confirm ALS but rather it is a diagnosis that is reached by excluding many others by process of elimination. Poling also shared there are some medications that can help those with ALS but it can be very difficult to get approved. Poling and her family went as far as contacting President Trump. Finally, after reaching the right insurance person, and after six months of working hard to get approval for this specific medication, it was approved.
Poling shared that there are some clinical trials and Seth and his family are being proactive to participate in this research and promote awareness of the disease. Poling noted that Seth’s case of ALS is very advanced and he only has movement in his eyes to which he uses a computer system for communication. Seth has reached out to engineers at WVU in hopes to create a call button that will notify caregivers of need for assistance by utilizing eye movement.
Seth is active on social media platforms and podcasts. Seth is also the founder of The SETH project, which can be followed on Facebook. It has links to Seth’s blogs, upcoming ALS awareness events and more.