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Raising awareness for Dystonia, even in silence

Dogs4Dystonia event on Oct. 15 raises awareness for rare neurological disorder

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Sheila Williams can’t speak, but that doesn’t stop her from spreading awareness of Dystonia, the neurological movement disorder that stole her voice.

On Saturday, Oct. 15, Williams will lead Dogs4Dystonia Dog Walk, a fundraising event that supports dystonia research that will take place at Thomas Park in Marion from 9:30 a.m. to 1 p.m. The event will feature demonstrations of service dog training, dog costume contests, raffles, a silent auction, professional dog photos and more. The $20 entry fee also includes a T-shirt and goody bag filled with gifts from event sponsors.

According to the Dystonia Medical Research Foundation (DMRF), Dystonia affects fewer than 300,000 people in the United States, including men, women and children of all ages and backgrounds. It causes varying degrees of disability and pain that can affect one or more areas in the body, sometimes moving from part to part.

The pain can be persistent or intermittent and can cause abnormal, repetitive, involuntary and twisting muscle contractions that affect movement and posture.

Severity of symptoms often fluctuate day to day, but symptoms are worsened with voluntary movement, making daily life a challenge.

Because symptoms present themselves differently from person to person and there is no single test to confirm it, the disorder is infamously difficult to diagnose.

Most forms of dystonia do not shorten a person’s life span, but there currently is no cure. Customized treatment options can offer relief from muscle spasms, pain and awkward postures, according to the DMRF.

Specific causes remain unknown, but dystonia can occur as a result of trauma, certain medications and mutated genes, said the DMRF. There are forms of dystonia known to be genetically inherited and forms that may or may not have a genetic component, but at this time researchers cannot currently confirm or rule genetics out.

For Williams, symptoms started in her mid 20s. She was in an abusive relationship at the time and began to lose her voice. She thought maybe it was just a cold, or allergies, but as time went on, her voice would disappear for longer periods of time.

Weeks of silence turned into months. She could squeak out whispers, but not without severe pain. It wasn’t long before her voice had disappeared all together.

Williams divorced her abusive husband in 2004 and was trying to care for her daughter as a single mother. When she lost her voice, she also lost her job of 25 years as a veterinary technician.

“I was devastated when they said I couldn’t work for them,” Williams wrote on a notepad — one of few ways she’s able to communicate now, in addition to sign language, dry-erase boards and brief vocalizations to indicate yes or no.

Williams went to the Equal Employment Opportunity Commission for help, citing discrimination, but that didn’t work, she wrote. She applied for unemployment and disability but didn’t qualify. She didn’t have insurance and wasn’t receiving regular child support payments from her ex-husband, either.

“I had to go to food banks to get food for us,” she wrote. “It was very hard as finances were tight. ... I never had help with Medicaid expenses and always put my daughter first.”

At just 6-years old, her daughter Selena was translating for her mother and helping care for her.

“She had to grow up quite fast,” said Williams’ sister, Cheryl Killham.

“It was pretty scary,” Selena said. “I was really scared of death and I thought I was going to lose her. ... I’m still scared now.”

As Williams’ condition declined, she struggled to find a diagnosis. Doctor after doctor told her it was psychological — that it was just “in her head,” Killham said, adding that the disorder is “often misdiagnosed and misunderstood.”

It wasn’t until six years ago that she was finally diagnosed with three types of Dystonia: Generalized (affects the limbs and torso), Spasmodic (affects the vocal cords) and Cervical (affects the neck and shoulders).

Now 45, her symptoms have worsened. Last year, she lost the ability to swallow, making eating and drinking near impossible.

To eat, Williams purees all of her food and swallows only small amounts at a time. For water, she sucks on ice cubes.

Walking has become painful and cumbersome, as Dystonia caused her feet to turn in abnormal directions — her left turning so far inward that she’d walk on top of her foot if it weren’t for the leg braces she wears every day. Without the aid of the braces and a walker, William’s can barely walk, stumbling over her own limbs and wincing in pain with each step.

For treatment, she must choke down six different pills each day with limited amounts of water. Every few months, she receives five or more injections in her neck to minimize the pain.

Williams can no longer work and receives disability benefits, but she “refuses to let Dystonia take over,” she wrote.

In addition to caring for her daughter and their two cats, Williams spends her days painting, baking and tending to her garden, among other things.

She loves to help people, she wrote. Even though it causes her pain, she’ll often shovel sidewalks, rake leaves or mow her neighbors lawns, for example.

“She just keeps going,” Killham said. “Personally I don’t think I could do it, but she refuses to let it get the best of her.”

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