ALS Survivor Kent Dickerson Promotes Awareness About the Disease
Eyebrows began to raise in August 2010 when clients called Kent Dickerson’s office and found that he was slurring his speech. They wondered if he had been drinking early in the mornings, which didn’t make sense as that was uncharacteristic. Once the slurred speech was brought to his attention, Dickerson, 47 at the time, was also concerned. He’d had a friend pass away from ALS (Amyotrophic Lateral Sclerosis) ten years earlier and in the back of his mind, he wondered if he was suffering from the same condition. He prayed he was wrong because ALS has no cure. Moreover, statistics are grim; 80% of ALS patients typically live just two to five years.
ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS causes stiffness of muscles, muscle twitching and muscle weakness, which results in difficulty speaking, swallowing and eventually breathing. In the majority of cases, ALS diagnosis starts with weakness in arms or legs but in 20% of cases, it starts with slurred speech and breathing issues. Over a two-year period, Dickerson endured a battery of tests.
“We prayed I had MS (multiple sclerosis) because while still being a terrible disease, it wasn’t a death sentence,” says Dickerson, a Hendricks County resident.
He didn’t receive the official ALS diagnosis until 2013. Though he had braced himself for the worst, the news was nonetheless difficult to digest. For starters, Dickerson, an adventurer who enjoyed hunting, fishing, racing, white water rafting, softball, and golfing, knew that his life was going to drastically change. He spent the first year following his diagnosis railing against the inevitable.
“I was mad,” he says. “I was on top of the world, strong as an ox, physically fit and—bam—[struck] with ALS.”
One day someone told him that it wasn’t about “diagnosis” but “prognosis” and his attitude changed.
“This was the cards dealt to me, and I was going to make the best of it,” he says.
He didn’t know how quickly his body would deteriorate as it’s different for everyone. Over time, he went from walking on his own to using walking sticks. He then progressed to a walker and then a power chair. Last year he quit driving so now he must rely on his friends and family for transportation. He’s on a noninvasive ventilator when he sleeps, which he does in a lift chair. Most ALS patients pass from breathing problems because their chest muscles weaken and they can’t get that last breath.
“We all choke real easy, on nothing to water,” Dickerson says. “I can’t count the number of times I thought, ‘I’m not going to get that last breath and it would be over.’”
Dickerson feels blessed that he’s not had to use a feeding tube.
“I can still eat foods though I’m on a strict diet,” says Dickerson, who has had a bad gall bladder for two years. It can’t be removed, however, because he might not wake up breathing on his own following anesthesia.
He has lost 95% of his speech, but he can still use his arms and hands to a certain extent and can shower by himself. He needs assistance getting dressed and doing most other tasks.
“The hardest thing to come to grips with is asking others for help,” he says. “It’s very difficult when you have done everything in life on your own.”
Still, he recognizes that he’s one of the lucky ones. After all, a lot of ALS patients have become completely paralyzed from the neck down in a matter of a couple years. Few people live a somewhat normal life for two or three years, and only 10% of people live past the decade mark. August marks 12 years since Dickerson experienced his first symptoms. That means he’s in the top 10% of people in Indiana who has lived the longest with ALS.
Despite his limitations, Dickerson still works as the president of Global Constructors Co. Inc., an excavation utility contractor. He helps with the bids, contractor meetings and disposal & buying of equipment. In his free time, he goes deep sea fishing and hunting.
Dickerson maintains that the most important aspect of living with ALS is staying positive, and he does that through faith, family and friends. He and his wife Sandy have been married for 34 years. He calls her the “glue of the family.” The couple have two daughters and six grandchildren.
“The four oldest grandchildren have basically grown up their whole life with me having ALS,” Dickerson says.
Each year his grandkids attend an ALS camp that is run at the YMCA called “Hope Loves Company.” Run by a husband and wife who both lost spouses to ALS, Hope Loves Company is the only non-profit in the U.S. with the mission of providing educational and emotional support to children and young adults who had or have a loved one battling ALS.
“My grandchildren all love the camp and cancel any plans so they can attend that week in summer,” Dickerson says. “They talk about ALS and get their feelings and thoughts out with kids going through the same thing. The oldest will be a camp counselor this year. He’s 18.”
Dickerson feels fortunate to have the means to live with the disease since living with ALS can cost $200K per year. With the help of others, Dickerson started “Kent Dickerson Ring of Honor” to benefit others without means to get resources they might need to be as comfortable as they can while living with ALS. For example, something as simple as a grabber [can be helpful] all the way to a power chairs. Google “Kent’s Ring of Honor” to learn more.
Every September the ALS has a walk where participants solicit donations for a cure. Dickerson’s team name is “Kent’s Faith” and usually has between 60 and 100 people on it. Last year, Dickerson got to cut the starting ribbon for the event. This year marks their tenth year.
“We’re fortunate to have an ALS chapter in Indianapolis, which is top notch,” he says. There’s also an ALS clinic in Indianapolis, so Dickerson recommends that patients reach out to them if you or someone in your family suspects they have ALS.
“Most hospitals know very little about ALS, trust me,” Dickerson says. “I’ve experienced it first-hand more than once.”
ALS, in general, seems to be one of the “forgotten” ailments. He was thrilled in 2014 when the ALS Ice Bucket Challenge circulated around the Internet, raising both awareness and funding for the disease. According to the ALS Association, more than 17 million people participated in the challenge worldwide, raising $220M.
“It was great! That’s all people talked about in person and on Facebook,” Dickerson says. “It raised the most money ever for research.”
His family and friends participated as well, holding an event where they used five tons of ice! Unfortunately, once the challenge was over, it seemed most of the population forgot all about ALS again.
“It’s like a lot of people don’t even know what the disease is anymore,” Dickerson says. “We need something like that again to raise the attention to ALS as that did around the world. We have to find a cure.”
To learn more about ALS, to make a donation, or to join the Kent’s Faith walk team, visit als.org.