(Jan. 22, 2015) – First it was the ALS ice bucket challenge–now the disease is getting even more recognition on FOX’s hit show “Empire.” The lead character, Lucious Lyon was diagnosed with the disease.
“This leads to a loss of muscle and muscle control and the cause for it is largely unknown. Its a slow progressive condition. It doesn’t start with a big bang its a very gradual thing it kind of sneaks up on you,” said Dr. Bob Pascuzzi, the medical director of the ALS clinic at the IU Health Neuroscience Center.
He’s glad ALS is being mentioned on prime time television but says his patients are battling this deadly disease in real life, not Hollywood.
“So here in the clinics it’s a major production a big drama and everyone that works here is totally blown away by what these people go through and how they deal with it and I think they teach us a lot,” said Pascuzzi.
Patient Rich Zoellner is no character. The husband and father has been living with ALS for two years. But just like Lucious Lyon he’s also a music lover. He’s a drummer and hasn’t let his diagnosis get stop him.
“I think by me continuing to play I think it’s really helped me…I really do,” said Zoellner.
Rich’s symptoms started with loss of nerves in his thumb. He created a gadget to help his thumb grip his drum sticks. His wife Stacey says his fight has been inspiring–but they’re hesitant to watch television characters with ALS.
“I don’t know how it’s going to be portrayed and if the progression is farther than where he is because it kind of puts our mind–I don’t want to be there. So sometimes we get do we want to watch it because is it going to help us or hinder us,” said Stacey.
The family has been extremely active in the ALS Association of Indiana. Their group raised more than $90,000 for research to find a cure for the disease.