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Living with ALS: The Ventura County man who says not enough people know about the rare neurological disease

Kevin McMillan, from Ventura, was diagnosed with ALS three years ago
Caroline Feraday
/
KCLU
Kevin McMillan, from Ventura, was diagnosed with ALS three years ago

Star Trek actor Kenneth Mitchell died recently - aged just 49, after a 5 year long battle with ALS - he was one of about 30,000 cases of ALS in the United States.

Kevin McMillan is at home in Ventura. He runs an automobile customization business in Oxnard - but I don’t find him tinkering with a hot rod or a motorcycle…two of his passions….in fact, most of his work now is done from home, where I find him in a motorized wheelchair. Three years ago, Kevin was diagnosed with Amyotrophic lateral sclerosis, ALS.

"It was just the bomb being dropped. It's just the toughest, toughest thing to go through," he said.

McMillan says many people don’t even know what the progressive nervous system disease, which is also known as Lou Gehrig’s disease, even is. But he knows it’s a life sentence - an incurable, neurological disorder which causes the loss of muscle control.

"I know that I'm going to probably have a feeding tube. I know that I'm going to have an intubate or I guess, you know, so I can breathe. I know I'm not going to be able to eat or speak. When that is, I couldn't tell you," he said.

"I have an automotive restoration shop in Oxnard. That was my dream. I've always been a car guy working on motorcycles and fabricating things and that kind of thing. And it's just taking that away from me. It's taken that whole skill away. I can't use my hands like I did. I can't lift those things like I did. I know exactly what needs to be done, but it's a tough nut to swallow," said McMillan.

Kevin tries to enter his password on the computer but asks for help.

"You can see how I can struggle. I don't have the stability in my fingers," he explained.

He says asking for help has been one of the hardest things to get used to.

"Here I was, a guy into hot rods, and now I'm in a wheelchair, just cruising around town. The toughest thing about any of these type of diseases are learn to say thank you and not you're sorry because it's not your fault," he said.

But, says McMillan, he says he’s determined to focus on what he can do, not what he can’t.

"I'm not going to stop. You can't let this take you out. I drink my beer through a straw, and that's what I'm going to do to," he said.

"Your world gets smaller and smaller, but it doesn't mean that it has to get worse. Every morning I wake up. I do a little inventory on what still working, and every day that I can speak and eat and all those things, I'm very lucky," he said.

He says that he, and those like him in the same position – don’t have the time to wait for ALS drugs to be approved – but a medication he’s taking now has given him hope of slowing down the progression of the disease.

"All the things that you need to survive and live, it's detrimental to your bank account. And insurance companies just don't care," he said.

"Relyvrio is something that I've been taking for close to a year now since it's been released, and I honestly believe that it has slowed the progression. It's got a terrible taste to it. Even the people at Amylyx have gone, you know, 'We're sorry. We hear people just can't stand the taste'. But I'm kind of like, you know what? If it makes me live a couple days more, a month more or whatever - I really don't care," he said.

He may not have his hot rods, but he has hope - and determination - to customize a better life for others adapting to an ALS diagnosis.

Caroline joined KCLU in October 2020. She won LA Press Club's Audio Journalist of the Year Award in 2022 and 2023.

Since joining the station she's won 10 Golden Mike Awards, 5 Los Angeles Press Club Awards, 2 National Arts & Entertainment Awards and a Regional Edward R. Murrow Award for Excellence in Writing.

She started her broadcasting career in the UK, in both radio and television for BBC News, 95.8 Capital FM and Sky News and was awarded the Prince Philip Medal for her services to radio and journalism in 2007.

She has lived in California for eleven years and is both an American and British citizen - and a very proud mom to her daughter, Elsie.