Virginia Woman Who Raised Nearly $1 Million for ALS Research Receives Startling Diagnosis: 'I Hope My Story Will Inspire'

"I'm choosing to live my life with ALS and not consider it a death sentence," Beth Prever tells PEOPLE

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Photo: Courtesy Beth Prever

Every year since 2009, Beth Prever has rallied her coworkers to participate in the JT walk to raise funds for ALS research.

Through this work, the Portsmouth, Virginia, mom helped to raise $800,000 for research and was moved by the many ALS patients she met.

“I saw people suffering and felt a tug on my heart that said, ‘You can help!’ ” Prever, 50, tells PEOPLE via email. “I felt like having ALS would be a worst-case scenario diagnosis, it’s like living in a glass coffin – your mind is intact, but your body is failing.”

Then, in April 2016, seven months after she participated in her 7th ALS walk, Prever was diagnosed with ALS herself.

“It is horrific news to hear,” she says. “I cried for days. I can’t begin to describe the emotions that were running wild in my head.”

The diagnosis of ALS, short for Amyotrophic Lateral Sclerosis (ALS) a neurodegenerative disease that affects nerve cells in the brain and spinal cord – meant that Prever had to prepare for the eventual paralysis of all voluntary muscles.

“I still cry and I’m still coming to terms with it,” Prever says. “I’m terrified of what the future holds for my son, Landon, and me, but I’m choosing to live my life with ALS and not consider it a death sentence.”

The lifespan for ALS patients after diagnosis has long been thought to be between three and five years on average, according to the Muscular Dystrophy Association. However, some patients can live decades. Prever says she’s keeping these patients in mind as she looks towards her own future.

“My doctor told me about a patient that comes to see him every three months that was diagnosed in 1976,” she says. “I’ll have what he has!”

The First Signs

The first symptoms of Prever’s ALS began appearing in 2015, just when she was feeling the healthiest she had ever felt in her life. After a 2011 hip replacement led to significant weight gain, Prever became determined to get active in October 2013.

“The first day in the gym, I couldn t even do the stretches. I left in tears,” she says. “But every accomplishment starts with the decision to try and I was determined to make it happen.”

By January 2014, Prever had lost 60 pounds and by that October, she had lots 105 pounds through a healthy diet and a dedicated exercise regimen.

“It was a grueling and agonizing process, but I have muscles now that I never knew existed,” she says.

In March of 2015, Prevers ran her first half marathon, one of 26 races she participated in that year. Then, in August, she started to notice she was slurring her speech.

Her doctor thought the issue was resulting from a spinal cord injury, but after neck surgery, there was no improvement. So, she was then referred to a neurologist and finally a specialist who diagnosed her with ALS in April 2016.

A Familiar Heartbreak

Because of her years of advocacy – which including fundraising and managing volunteer efforts through her work as Senior VP of Marketing & PR for TowneBank – Prever knew the toll ALS took on patients and families all too well.

So, she called her son, Landon, then a senior at Virginia Tech, and told him the devastating news.

“We cried together that night,” she says. “I just wanted to hug him and never let go, but it would be three weeks before I got to see him in person. Those were the longest three weeks of my life.”

Now, Prever’s speech has become nearly unintelligible, and she’s experiencing difficulty swallowing and changes in her breathing. “But other than that, I feel good,” she says.

Despite all of this, she’s dedicated herself to living life to the fullest every day. She’s working her way through a bucket list that includes skydiving and visiting England, Ireland and Scotland with her son, and seeing her “boyfriend” Bon Jovi in concert. “Although he doesn t know he’s my boyfriend,” she jokes.

When she’s not out adventuring with Landon, Prever says she gets strength from her friends and family, her faith and the ALS community she worked for years to support before her own diagnosis. “People from all walks in my life have rallied around me,” she says. “I feel so loved.”

This October, she’ll participate in her 8th ALS walk, but this time, 37 teams made up of 131 people will be walking to raise funds for Prever’s own healthcare expenses.

After the walk, Prever doesn’t know what her future will hold; but she’ll work for as long as she can to have a positive effect on the world and inspire others to do the same.

“I hope that my story will inspire others to use their time and talent to help other people,” she says. “That will be my legacy, that I lived a life of service to others.”

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