ALS patient paying it forward by mentoring others

The Story

HUNTSVILLE, Ala. – We first introduced you to Bryan Stone two years ago.  Sitting in his Guntersville home, he told me, “October 25th of 16. We were diagnosed at Vanderbilt.” He’ll never forget the day he and his wife Debby got the news.

“I was having problems lifting with my right arm,” Bryan recalls. He had Amyotrophic Lateral Sclerosis. Looking at his wife, he said, “Doctor Internet and I had already been working on it and I knew that there was a very good possibility that that`s what I had.”

They just knew it was Lou Gehrig’s disease. “When the diagnosis, we finally got it, it was a relief to finally know for sure,” he said. They faced tough decisions. “Do we just sit down and let it take us or do we continue to live life?” they asked themselves.

On the way home, “We said that today is the best day, the rest of our life and we’re going to make the most of it,” Bryan told me, “And we’ve tried to pack a lot into the last two years.” Debby laughed and said, “Oh, we sure have.”

They hit the road. “We did a car trip, Niagara Falls and all the way across New York State, Vermont, New Hampshire, all the way to Kennebunkport, Maine,” Debby recalled, “Back down through Massachusetts, Connecticut and all the way back down the east coast.” They packed as much as they could in those days, knowing what was coming.

Fast forward to today. “I can’t walk at all now.” Bryan said during a zoom call, “I’m confined to a wheelchair. And totally dependent on Debby to get me in and out of my wheelchair.”

But they’re still logging miles. “We’ve been to Alaska on a cruise, the Panama Canal,” Bryan said happily, “We’ve been to Florida many times, Gatlinburg. We’re not letting it slow us down.” When I remarked, “You’re living life, aren’t you? With no hesitation, he said, “You have to. While we can, we’re going to go, and we’re going to see and do.”

Bryan and Debby continue to meet with other patients and their caregivers to give guidance on the journey. “When you first get this disease, you’re so overwhelmed with questions and information that you need somebody to walk with you that can help you sort through your issues,” Bryan said, adding, “And I think that’s an important part.”

He and Debby are doing that. “Yes,” he said, adding, “an awful good friend and yours Rick Isaacs, he helped me when I was first diagnosed with ALS. He was my mentor.” He’s paying it forward. “Yes, as much as we can,” he said.

Bryan and Debby, and Rick Isaacs’s wife Cindy, are featured on new public service announcements that are airing on News 19 and across Alabama. While COVID-19 has cancelled several fundraisers, ALS families still need our help to continue research and programs.

Right now, there are only two drugs available to ALS patients. “They don’t cure the disease,” Bryan said, “They only give us a short extension to our life span.” That’s usually two to five years.

Bryan and his family are living each day the best they can. “Today’s the best day of the rest of our life and we’re going to make the most of it,” he said with a smile. That’s some advice for all of us. “That’s sort of our mantra,” he added, “and that’s the way we’re going to live our life.”

To learn more about ALS Alabama Chapter or to donate, click on the link.

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