Device helps ALS patient breathe easier

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Grateful in Griffith: Carol Lasaro, of Griffith, gets plenty of support from her family as she battles ALS. | Supplied photo

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After undergoing numerous tests, Carol Lasaro was diagnosed with ALS, also known as Lou Gehrig’s disease, in November.

Her symptoms grew worse with the degenerative disease that affects nerve cells in the brain and the spinal cord. Her legs became weaker and weaker, requiring her to first use a cane, then a walker and now a wheelchair. She would also lose her breath after walking or talking just a few minutes.

She said there is nothing doctors can do about her mobility issues, but they have helped improve her ability to breathe.

On Dec. 18, Lasaro, of Griffith, became the first ALS patient at University of Chicago Medicine to have the NeuRx Diaphragm Pacing System implanted. She was one of two ALS patients to have the procedure done that day.

Humanitarian device

With the DPS system, doctors surgically implant electrodes in the diaphragm, supplementing the patient’s breathing efforts.

“I’ve only had the system a few months and it’s made a big difference in my breathing,” Lasaro, 66, said.

Dr. Kourosh Rezania, an assistant professor of neurology at the University of Chicago Medicine and a neuromuscular-disease specialist who diagnosed Lasaro with ALS, said the DPS system doesn’t cure ALS, which is always fatal, but it does improve the patient’s quality of life and hopefully will prolong their life. It has been approved by the U.S. Food and Drug Administration as a humanitarian device for those with ALS.

Respiratory problems are among the most serious medical complications in ALS and a major cause of death for those with the disease (Rezania said life expectancy is generally three to five years after diagnosis.)

How it works

Rezania said the DPS system consists of four wires inserted into the diaphragm through an incision made in the abdomen. He said patients are given general anesthesia during the nearly two-hour procedure.

A portable external battery-powered pulse generator, which Lasaro said is called a pacer, controls the diaphragm movement. Lasaro said she turns on the pacer for one hour in the morning and for two more half-hour sessions each day.

Rezania said Lasaro needs to return to the medical center every few weeks at first, then every couple of months, to have the device adjusted to her needs.

Not everyone with ALS can get the device. Rezania said those who are in the early stages of the disease are better candidates.

Lasaro said she was told she was still strong enough to be a good candidate for the operation to insert the device.

While fairly new to ALS patients, Rezania said the device has been around since the 1980s, originally used for patients with spinal cord injuries.

“It’s still experimental with ALS, but I don’t consider it experimental because it’s been approved by the FDA,” said Rezania, who has been with University of Chicago Medicine’s Department of Neurology for 13 years.

Rezania is hopeful future studies will show it can improve an ALS patient’s quality of life.

He said the device was approved for use in ALS patients in 2008 and only a few medical centers are doing the procedure for this purpose.

Supportive family

Lasaro recommends both the device and the doctors at University of Chicago Medicine to anyone with ALS.

“I love my doctors staff at the university. They’re wonderful,” she said.

As she battles the disease, Lasaro remains upbeat, thanks in large part to the support she receives from her husband of 46 years, Nick Lasaro, her two daughters, Lenore and Andrea, and her sisters, who drive from their homes in Chicago to visit and, as Lasaro said, “to break the monotony.”

“They give ALS patients three to five years. I’m hoping to last five years, as long as I can sit up and enjoy my family,” she said.