Life with ALS

Every 90 minutes someone in the United States is diagnosed with ALS and every 90 minutes another life is lost to the devastating disease. News 25’s Katarina Luketich sits down with one Coast man as he shares his story of life with ALS and his journey to promote awareness of the disease while he still can.
“This isn’t supposed to happen to me. This is supposed to happen to someone else, I’m supposed to be there to support someone else. Well, this time it’s me so we’re going to make the best of it.”Wayne Tiblier’s life was turned upside down back in April when doctors told him he had ALS, a disease that attacks cells in the brain and spine and ultimately leads to the inability to move any part of the body or to speak. The end result of this disease is respiratory failure.
Life expectancy for those with ALS is between two to five years. Doctors told Tiblier he had been living with the disease for two years before he was diagnosed. “They say when it starts out progressing slowly, it continues to progress slowly. So, they told my wife I’d be around to aggravate her for several more years,” said Tiblier.
His wife, Becki, is his biggest supporter and each day her heart breaks watching the man she loves struggle to do everyday things. Tiblier’s motor skills are already starting to deteriorate. A butcher by trade, he’s no longer able to cut meat. “It’s hard for me because he becomes frustrated because he can no longer do stuff that he loves to do, cut meat or drink his cup of coffee in the morning. He has to do it left-handed and he’s right-handed,” said Becki.
Despite the life challenge put in front of him, Tiblier continues to remain positive by focusing on what he still can do rather than what he cannot. Since being diagnosed, he’s decided to use the rest of his life to bring awareness to this currently incurable disease. "So many of the people with ALS now on the Coast and all over, they can’t speak for themselves. I want to be the voice behind it to bring awareness," said Tiblier.
Ironically, when the ALS ‘ice bucket challenge’ went viral last summer, Tiblier and his wife didn’t know what it was for, even though he was unknowingly living with the disease himself.
Now, he’s putting himself out there as well, a face and a name and a true life testament to this deadly disease. He continues to live his life with his head held high, full of hope that maybe his story will bring awareness to ALS and inspire others to help raise money so that one day doctors can find a cure for this devastating disease.
Tomorrow, the ALS Association is hosting their biggest fundraiser at MGM Park. Proceeds will help provide support to those living with the disease, as well as their families. You can donate online at walktodefeatals.org.

Categories: Local News, News

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