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Butler couple battles PLS disease together

Tim Gold, who has primary lateral sclerosis, married Lisa Sept. 14. Tim has been a member of Lick Hill VFD for over 40 years.

BUTLER — Firefighting runs in Tim Gold Sr.'s family. He grew up at the Lick Hill fire station, according to his wife, Lisa, and was president for about 30 years.

“His grandfather actually helped build Lick Hill Fire Department,” Lisa said.

Tim was involved for a total of 42 years until primary lateral sclerosis, or PLS, confined him to home. Lisa said Tim went from walking and talking to not being able to do either in about a year.

“(PLS) is a variant of ALS,” said Dr. Sandeep Rana, director of the ALS Center at Allegheny Health Network. “It's just sort of stayed in the shadow of ALS.”

PLS, like ALS, is a variation of Lou Gehrig's disease.

PLS is a motor neuron disease that slowly breaks down nerves in the brain, according to the Mayo Clinic. This prevents motor neurons in the spinal cord from controlling muscles. The condition typically develops between 40 and 60 years of age.

Because it's not as common an illness as ALS — Rana said the ratio of PLS to ALS patients is about one to three — it's not always immediately identified.

Lisa said Tim was originally tested for Lyme disease. Then, doctors worked to rule out myasthenia gravis, a condition caused by the breakdown of communication channels between nerves and muscles.

Tim was diagnosed with PLS through Allegheny Health Network.

“There is no causation for PLS,” Lisa said.

Lisa is 5-foot-4-inches. When she met Tim, he was 6-foot-2-inches. Now, he's mostly confined to a wheelchair.

“You walk past somebody in a wheelchair and you don't even look at them,” Lisa said. “My life revolves around him.”

“There is no cure for PLS,” Rana said, adding that oral medications can make symptoms manageable. “(But) the progression of the illness is much slower.”

PLS patients typically take medicine used to treat ALS. Over time, they often need to use a walker or wheelchair.

Because the illness affects motor skills and muscle movements, environmental conditions such as cold weather can make symptoms worse.

“When it's cold out, you can't even bend his legs,” Lisa said. “(His) reflexes are extreme.”

Rana said the disease begins with several symptoms.

Patients become progressively weak in their arms and legs. They experience muscle spasms, slur their words and might have trouble swallowing. The Mayo Clinic adds that patients may also have trouble keeping their balance.

Most people need to be diagnosed by a specialist, according to Rana.

“They need to be evaluated by a neurologist,” he said.

The Golds have been together for more than 25 years. The number “14” is a re-occurring theme in their lives, according to Lisa. They met on Feb. 14 many years ago. Their house number is 114. They were married Sept. 14 this year.

Friends and family asked Lisa why she married Tim after he fell sick. Lisa said she couldn't just walk away.

“We were going to do this anyway,” Lisa said. “(And) there's always somebody worse (off) than you.”

Lisa's day officially starts at 5 a.m., when she gets Tim up for the day. Eating for Tim takes an hour to three hours, according to Lisa. The only thing he can eat by himself is sandwiches.

Because he can't move much on his own, Tim mostly watches television or listens to music during the day. Country and classic rock are his favorites, according to Lisa.

Lisa works full-time at an auto garage near the Golds' home. She checks on Tim during her lunch break. Tim's mom, Doris, sits with him during the day. Doris is 87 years old.

“There's a lot required of a caretaker,” Lisa said. “It's a long day.”

Rana said PLS can be fatal, but isn't normally. Many patients live with it for decades.

The Golds are trying to raise money for a NurOwn stem cell treatment, an investigational therapy developed through BrainStorm Cell Therapeutics. The treatment costs between $300,000 and $500,000, and is in Phase 3 of trials in the United States.

If the Golds wished to pursue this course of action, they'd likely need to go to Israel.

Although treatment potentially exists, the progression of PLS can be draining — for both caretaker and patient.

“It's disabling and there's a lot of work involved,” Lisa said. “I wouldn't want to wish this on anybody.”

Rana said scientists continue to study motor neuron diseases, including ALS. Although PLS is not as widely studied, Rana said the more scientists learn about ALS, the more they might be able to understand its shadowed cousin.

“We are hoping that there is a common thread between the two of them,” Rana said.

Donations to Tim's treatment can be made by mailing a check to Tim Gold Sr. PLS Benefit; c/o Lisa Gold; 114 McClellan Drive; Butler, PA 16001Lisa asks donors to make checks out to the Golds and put "PLS fund" on the memo line.

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