(Photo by Michael Kinney)
OKLAHOMA CITY –The changes in his body can already be seen. A couple of months ago, friends and family would have had to look closely at Adam Helms to notice anything was wrong with the Putnam City track coach.
But now, with his arms and hands thinning as his muscle mass disappears, it has become evident that Helms has found himself in the middle of a battle with an opponent that is undefeated.
In March Helms was diagnosed with ALS (amyotrophic lateral sclerosis), a disease in which muscles waste away due to the death of the nerve cells that control them.
“I started feeling stuff in January. In my hand. My index finger wouldn’t straighten,” the 38-year old Helms said. “I finally decided to go to the doctor I would say mid to late January and it took a while to get into a neurologist so it was March before I got in. And I actually got diagnosed the same day as our track meet. So March 30th, I left my doctor’s appointment and went and ran a track meet. I was devastated originally.”
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. According to the ALS Association, the disease usually strikes people between the ages of 40 and 70, and it is estimated there are more than 20,000 Americans who have the disease at any given time.
Once ALS starts, it progresses and takes away the ability to walk, dress, write, speak, swallow and breathe. It eventually leads to death. The life expectancy for someone with the disease is three to five years and there is no cure.
“The future’s kind of an unknown. There’s not a formula. There’s not a blueprint for them to follow. It’s different with everybody,” Helms said. “And in some ways I got lucky because there are two types of it. There’s one that starts in your arms and legs, it’s called limb onset. And there’s another one that starts more in your throat and in your mouth and tongue which means you don’t swallow. You need help breathing. You can’t drink by yourself. Feeding tubes have to go in a lot quicker. So it’s just kind of one of those diseases that there’s no timetable. There’s no rationale or blueprint on what the future’s going look like.”
Helms is currently under the care of Oklahoma City neurologist Dr. Brent Beson. He gave Helms an unfiltered breakdown of exactly what his situation is.
“My first doctor, he was just trying to not drop the bomb on me,” Helms said. “But my current doctor (Beson) is more the band-aid approach guy. Just rip it off and we’ll just deal with it. I feel pretty confident in him. I don’t think he’s your typical doctor. He’s pretty open to a lot of things. If I want to try something he’s not going fire me as a patient. I’m going to have to fire him as a doctor before he’ll give up on me. Which is great.”
Yet, in the three months since Helms has found out he has ALS, he admits there have been some hard days. From informing his parents and sister to telling the members of his track team.
“I was more worried about the kids that I teach and coach because you don’t know what they are going through in their lives half the time,” Helms said. “I don’t think it’s fair to them until it’s absolutely needed.”
But there was nothing that could prepare Helms for sitting down and trying to explain to his three kids, who attend school in Yukon, what is wrong with him.
“That was rough. That was rough. My oldest son had a lot of questions. My daughter was a little numb. And my youngest son just didn’t really understand it at first,” Helms said. “So I ended up having to have a little bit deeper of a conversation with him. They still don’t know the name of it. Because I don’t want them Googling it. But other than that, they’re at a full understanding of what’s gonna happen, and how it’s gonna work. They know that my hands start getting a little bit worse, my arms start to get a little worse, my legs start coming into it. They’ve learned it eventually works its way into my lung area. The muscles around the lungs, that’s when you die.
“So they get that. They understand that it could be two years from now or 20 years from now,” They know. Stephen Hawking lived with it for 51 years.”
Overall, 2018 has not been a great year for the Helms and his family. His grandfather died in January. Three days before that, his friend of 22 years and fellow Putnam City coach Gary Wright passed away.
“It’s been a rough kind of year,” Helms said. “Whoever says it happens in threes is a liar. This happens in fives and sixes.”
For now, Helms is taking it day by day, trying not to let ALS control him. But he knows changes will have to be made. He will no longer coach basketball due to the schedule. However, he still plans to be leading his cross country and track teams for as long as his body allows.
“Biggest differences I see is the strength in my arms and hands. And then the second aspect is I get tired a lot,” Helms said. “I used to be able to work 15, 16 hour days and three or four in a row. Now if I work one day like that it takes me three or four days to recover. My doctor told me that I kind of live in that area after you’ve had a hard workout, you know, really hard workout and you know later on that night, your arms don’t want to move? Or your legs don’t want to move? Because that’s kind of where you live now. And when you do too much you live in that spot and then it takes you a couple days to get back to where you were before you did that other stuff.”
While Helms is preparing for the worst-case scenario, that doesn’t mean he isn’t planning to fight the disease in any way he can. He’s been in contact with former Jenks football coach Allan Trimble, who was diagnosed with ALS in 2016.
Helms is also enrolling in a new clinical study using stem cell research to combat the effects of ALS.
“There’s like six places that are trying it in the United States. It’s an Israeli-based company with a satellite office in New Jersey but I put in for it at the Mayo Clinic in Minnesota,” Helms said. “I’ve gotten them all my medical records. They think everything looks good but I’m just waiting on approval from the doctor and apparently, that could take a month or two for a spot to open up and stuff like that.”
However, in order to be in the clinical study, he can’t take any of the normally prescribed medication (Radicava, riluzole) for ALS patients that have shown to slow progression of the disease slightly.
Before Helms even knew about the clinical study, one of the coaches at Putnam City started a GoFundMe page to help with the expenses that were sure to come. More than $6,500 has been raised.
Helms will use the money to pay for the 14 trips he will need to take to either Boston, Los Angeles or Minnesota for the stem cell study.
Despite how grateful Helms was, it was difficult for him to accept the help. Since word got out about the ALS, he has noticed a change in people.
“At times people have treated me like I was a kid in a bubble. And to be honest with you, that makes me feel a little bit worse than anything else, than even what my body feels,” Helms said. “Because they’re treating me different. And I don’t want to be treated differently, just let’s keep going. I’m sick but I’m still gonna be the same person till the day I die, whenever that is. Two years, 10 years, 30 years. Who knows when it is so I’m going to force myself to be happy.”
Yet, even with Helm’s determination to keep a positive mindset, dark times do hit. He said when he is home alone, it has given him time to reflect on his life.
“It’s made me realize that I have a lot of regrets. That life, personally, professionally, stuff, and it’s never good to live in the past to live with those regrets,” Helms said. “Because all that regrets do is stifle you for the future. Put them aside. Say the things you need to say to people that you need to say things. Quit living in fear. Because it’s not going help you, all it’s going to do is handcuff you. It limits you more than it does anything else.”
Helms knows at some point ALS will win. His body will break down, he will lose total control of his arms, legs and breathing. Then the tough decisions will have to be made because he doesn’t want to live on a feeding tube or respirator.
Helms one goal is to be around for at least seven more years to see all of his kids graduate high school. He said after that everything is gravy and they can “pull the plug”.
“Fortunately for me I know, my family will be taken care of, my kids will be taken care of,” Helms said. “They’ve got a good mom. They’ve got a good stepdad. They’ve got my parents. Their other grandparents, you know, my sister. Lots of good people in their life that’s not going to let them go without or need something. Within the Yukon schools I know the parents family, I don’t have to worry about it. You know, so there’s a lot of comfort in that.”