Kevin Powell was diagnosed with ALS when he was just 31 years old. He was newly married, with three small children and twins on the way. While the news certainly took him by surprise, he’s proving that mindset makes an incredible difference.
What is ALS?
“ALS stands for amyotrophic lateral sclerosis,” Christopher Vachon, MD, PPG – Neurology, explained. “It basically comes down to a lack of nourishment to the muscle. Motor nerves in the body plug into muscles and provide them the ability to remain strong, and when they degenerate, it leads to weakness in the body. This could be in the arms and legs, as well as in the breathing muscles, and those used for chewing, swallowing and speech.
“Approximately 4 for every 100,000 people have ALS, and it typically presents between ages 55 and 75. But with any condition, there will be outliers, and there is a subset called juvenile onset ALS, which appears as early as the teens and 20s.”
Help along the journey
There is no cure for ALS, however there are treatments Kevin’s care team can administer to help slow down the progression of the disease.
“Even in darkness color can be found,” Kevin said. “There’s a bright side to everything. I have to stay positive. I have five beautiful kids and an awesome wife. There’s a lot still going for me. It’s not over yet.“
Kevin’s wife, Samantha, has been a tremendous partner from the moment he was diagnosed. “You don’t know how strong you can be until you have to be,” she said. “There’s been trial and error figuring out what works for us. A lot of days are so busy I don’t have time to think about it. And Kevin always knows what to say and when to do it.” Kevin admits that it was an adjustment asking for help, but it’s become a normal part of his life now.
“The mainstay is to know what we’re dealing with so we can get the most targeted treatment, and the sooner, the better,” Dr. Vachon said. Thankfully, Parkview can offer patients, like Kevin, support through the comprehensive ALS Clinic. “The clinic is a one-stop shop to get patients resources. In half a day, they get all of the disciplines they need.”
This will include a neurologist, who will prescribe medications to manage symptoms and disease-modifying treatments to try to slow the progression of the disease. They will also see physical therapy and occupational therapy to help them optimize their functional mobility, and speech therapists, who will focus on swallowing, nutritional needs and communication. Each ALS patient also sees an ALS representative and a social worker to bring all of the resources together.
“I’ve been seeing Kevin intermittently over the past six months,” Dr. Vachon said. “There’s been progression as expected, but we have been able to initiative treatments that are likely slowing it down. We’ve put things in place, like equipment, to improve the safety and quality of his life and overall well-being.”
One example of this is the ability to share one of his favorite hobbies with his loved ones. “Parkview helped make me braces to hold the video game controllers,” Kevin said. “So, I can play with my oldest daughter and friends.” It’s a small thing to many, but it’s a source of connection for Kevin, and just another piece of his testimony for his care team. “It was overwhelming at first, but they are all there to help you. I’m very grateful to every one of them.”
Keeping what matters top of mind
Nothing is certain, but the Powells are taking each day as it comes and doing the best they can with the circumstances. “I have admired Kevin’s strength,” Dr. Vachon shared. “When people get this diagnosis, it can lead to fear and unknowns, and I want Kevin–and all of our patients–to know that our team in the ALS Clinic isn’t just there to prescribe medication and give medical care. We’re also there for emotional support.”
It's a path Kevin is walking with the help of so many amazing caregivers, friends and family members. And it’s the latter that motivates him the most. “I want to be able to see my kids grow up and be there as long as I can,” he said. “Make your memories. Enjoy every moment with the people around you. Stay positive.”
