Dane, who portrays Cal Jacobs on Euphoria, announced his ALS diagnosis in April.
In his first major interview since then, Dane, 52, said on Good Morning America (GMA) that while he’s still able to walk, his mobility has taken a hit.
On a recent boat trip with one of his daughters, for example, he said he jumped into the water only to realize he didn’t have enough strength to swim back.
His daughter had to jump in after him, he said. “She dragged me back to the boat. I was just — I was like, heartbroken.”
“I’m fighting as much as I can,” he told GMA’s Diane Sawyer. “There’s so much about it that’s out of my control.”
What Is ALS?
Amyotrophic lateral sclerosis (ALS) is a rare degenerative brain disease that leads to the death of nerve cells that control voluntary muscle movements.
ALS is a progressive condition, meaning symptoms worsen over time. People with ALS gradually lose their ability to walk, use their hands, speak, chew, and swallow.
Treatments for ALS can delay disease progression, slow the onset of symptoms, prevent complications, and reduce pain. One goal of treatment is to help the person with ALS maintain independence for as long as possible.
Dane said he is taking medications to improve his symptoms, and is participating in a research study on ALS.
“I will fly to Germany and eat the head off a rattlesnake if [doctors] told me that would help,” Dane said.
Dane’s Doctor Is Excited About Advances in ALS Research
Dr. Cudkowicz said the viral “Ice Bucket Challenge” launched in 2014 has raised millions of dollars for ALS research, and she’s hopeful those funds will translate to discoveries that can be put into action.
“Between artificial intelligence and other imaging technology, that’s what gets me excited,” about ALS research, she said. “And that’s all coming in the next, I think, you know, one to two years, if not faster.”
Dane said he remains hopeful. “I don’t think this is the end of my story,” he said. “I’m pretty resilient.”
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