"The RNS is supposed to say 'he's having a seizure,' and go off, but that's not working yet," Landry said. "And every time I go to the doctor they program it and try to get it better."
Just this week, the FDA approved the first marijuana-based prescription drug that will treat epilepsy. Donaldsonville native Jon Landry has suffered from epilepsy since childhood, and awaits this form of treatment, expected to become available in Louisiana January 2019.
CBD, as it has become known, does not get users high, like the psychoactive counterpart found in marijuana, known as THC. The CBD-derived drug recently approved is called Epidiolex. The drug was studied in more than 500 patients with hard-to-treat seizures, overcoming numerous legal hurdles to conducting research with cannabis, according to Time Magazine.
FDA officials said the drug reduced seizures when combined with older epilepsy drugs. The FDA has also stated that the public should be warned that claims of marijuana as a cancer-cure, pain reliever or anti-anxiety medication are yet unproven.
However, the CBD-pure medication that has been approved is shown to reduce seizures and even return a few children to near-normal function, according to an NBC report.
But make no mistake, any alternative medicine that may help someone with severe epilepsy is in demand.
Jon Landry's life has been altered severely due to epilepsy. He keeps track of how many seizures he has each month on a paper calendar. The average number of seizures he currently experiences in a month totals 30.
"Right now around, I would say 30 a month," he said. "I'll go like let's say today I might have three or four, and tomorrow none. Then tomorrow, one or two. It varies through the whole month like that."
He said his seizures are not always "bad" seizures, known as grand mal seizures.
"I don't know how to spell it," he laughs. "I used to have grand mal seizures. I guess it's kind of like grand-maw. And that's what I started with."
Landry lives with his mother, a retired teacher, and father, also retired from CF. He's 38. He has been out of work for at least five years because no one wants to insure him. Prior to that realization, he worked construction with a relative.
His father, John Landry said that his parents began noticing his seizures when Jon was six or seven years old.
"We don't know exactly when he had the first one because he was having them nocturnally," his father said. "At that time he was upstairs, so we never witnessed it. He didn't realize what was happening to himself because he was young."
"Now the ones I have are called petit mal seizures," Landry said.
He goes on to explain about the VNS (Vagus nerve stimulation) device that was implanted into the left side of his chest. It sits dormant. The device is supposed to work in conjunction with a bracelet that could be swiped across his chest to stop a seizure, but Landry explains that a seizure comes on like a light switch. That means he cannot make the motion to swipe the VNS in time.
"If I feel a seizure coming on I could wear a--it's just basically a magnet on a little wristband--and swipe it and it would stop the seizure," he said. "It sends an electric shockwave to my brain, but I can't feel them coming on, so no point in wearing the magnet on your hand."
Landry said that the device was implanted five years ago, but his father said he has lost track of the time.
"You've got to understand, we've been doing this this for years and years, and we lose track of dates," his father said.
Then sometime afterwards, Landry had an RNS (Responsive neurostimulation) implanted on his brain.
"The RNS is supposed to say 'he's having a seizure,' and go off, but that's not working yet," Landry said. "And every time I go to the doctor they program it and try to get it better. And at night I send a--basically like a cell phone--I put it and it connects to a laptop, and it sends all the information, how many seizures I had during the day, and stuff like that, and then it goes to the hospital."
Moreover, Landry gets treated at LSU in New Orleans. But the RNS implant was done in Alabama, he said.
Piotr Olejniczac, MD, visits him every three months from LSU. But he sees four or five doctors at one time.
"I think I was the third person to get the RNS," Landry said.
"He's basically a guinea pig right now because none of the patients in the country suffer the same types of seizures that he does. They're picking up history as he gets older," his father said.
Jon has all sorts of physical evidence of injury due to seizures. For instance, his teeth have suffered from falling down. He recently snapped his ankle in a fall. A scar wraps around his head from a fall outside church that met with a sharp object. He has a scarred hand from squeezing a soda can so hard during a seizure that it shredded, cutting him. He also has a burn scar on his arm from having a seizure when pulling chicken from the oven and falling into the pan.
"He doesn't know when they're coming on, and he doesn't realize when he's having them," his father said. "The hardest part about seizures with my wife and I is that it takes him awhile to come out of his seizures. And so sometime he loses his feet. Sometimes he just can't talk. Other times his mind is spinning so fast he touches everything."
In a typical seizure, Landry said he begins dazing off. Then, he said, momentarily he might tell himself to not fall or pick up the phone, but he cannot. Then he blacks out.
He discussed that some people who have seizures keep it hidden as much as they can to protect their jobs and other things.
"You can't swallow you're tongue," he said. "It's connected to your mouth."
"You'd have to bite it off," his father said.
Landry does not drive a car, of course, but surprisingly he does work often in a woodworking shop he has built in the garage. He works with saws. He is stubborn about cutting the grass. In his 20s he even got into skydiving, until it freaked out his mother. He also has a teenage daughter, who he spends time with regularly.
"No point in being scared," he said.
Lastly, Landry said he has gone through every medicine they have so far.
"Whenever they come out with a new one, my doctor starts me on it."
"We're just hoping that when the marijuana c--- gets all approved and starts getting in writing--his neurologist has already told him he would give him a prescription to try it," his father said. "But people are misinformed about it. It's not for everybody. They think you're going to get a high off of it, and that's not true. We don't know that if he takes it, it's going to help him. It's not guaranteed for everybody."
"I've tried just about everything they have so far, and nothing's worked."