Holding on to hope: Portsmouth woman works through bucket list as ALS progresses

OUTLET: The Virginian-Pilot

It’s been almost a year since Beth Williams-Prever jumped out of an airplane.

That skydiving trip in July was just the beginning for the 51-year-old Portsmouth woman who’s been checking items off her bucket list of lifetime desires. And experiencing the symptoms of a fatal disease as it marches relentlessly through her body.

Williams-Prever was diagnosed with amyotrophic lateral sclerosis, or ALS, in April 2016. The neuromuscular condition, also referred to as Lou Gehrig’s disease, methodically chips away at motor neurons, slowly stealing the ability to speak, eat, move and, eventually, breathe.

In less than a year, it’s taken her voice, forced her to order a power wheelchair, and tightened the muscles in her hands so much it’s difficult to type.

But all of that has not kept her from her bucket list.

She’s gone white water rafting in West Virginia. She saw “Hamilton” and “The Lion King” on Broadway. She traveled to England, France, Ireland and Scotland. She went to Montana last month to see buffalo and visit Yellowstone National Park.

She’s also adopted two Labrador retrievers: Hope, for herself, and Remi for her 22-year-old son, Landon. And she’s gotten her first tattoo: an anchor with the word “Hope.”

Holding on to hope is a formidable task in the face of ALS. For Williams-Prever, the disease began with a slur in her voice nine months before she was diagnosed. Her voice gradually faded to the point where she now talks by tapping letters on her cell phone, and pressing a button to have it “talk” for her.

She’s proud to say, or rather tap out on her phone, that she worked a full year after diagnosis at her job as senior vice president of marketing at TowneBank, where she worked for 11 years. In the years before her diagnosis, she’d rallied 1,000 TowneBank co-workers and others to raise $400,000 for the JT Walk & Beach Party, an annual fundraiser for ALS that was named for Josh Thompson of Virginia Beach, who was diagnosed in 2007 at the age of 33.

Little did she know that the disease was lurking inside her. Last year, a team called Beth’s Brigade raised money during the walk to help pay for her care, much of which is not covered by insurance – such as the around-the-clock care she now needs. (Donations can be sent to: Helen E. Prever Asset Protection Trust, care of Starr Oliver, TowneBank, 6009 Harbour View Blvd., Suffolk, VA 23435.)

Williams-Prever was also featured in a company video played at a TowneBank shareholders meeting in May. The video, dedicated to her, showcases Williams-Prever’s work raising money for ALS, calling her a hometown hero, before showing her in a wheelchair, using cards to express herself: “It means the world to me to be surrounded by people who cherish hometown values.”

In an email, Williams-Prever said a low point in the year came with a hospitalization in March because of respiratory problems. During a visit last week, her breathing was labored as she showed off her dogs.

Starr Oliver, Townebank senior executive vice president of marketing and human resources, is one of several friends who are helping her make medical and legal arrangements, such as crafting end-of-life wishes. She said Williams-Prever’s ability to communicate has waned, and she tires easily because of diminishing lung capacity.

Williams-Prever said via text message that she has decided not to be put on a ventilator when the disease obstructs her breathing.

A few seconds later, she forwards a video of her whitewater rafting trip, and notes that the next item on her list is a trip to Alaska, which she’s planning for August.

Asked what life lessons she’s learned during the past year, this is what she tapped out:

“Take everyday as it comes (high and lows), live life to the fullest, pray everyday, courage and strength.”

Elizabeth Simpson, 757-222-5003, elizabeth.simpson@pilotonline.com

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