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Parkinson's Patient Gets Off the Pills and On the Pump

March 25, 2019

Duopa infusion pump gives Sue Gudde better symptom control and quality of life

Sue Gudde worked 19 years as a cook at a senior living community in Lee's Summit, Missouri. She relied on her hands to chop, flip, scoop and serve. At age 50, she began to experience tremors on her left side, making job-related tasks more dangerous. Then she lost her sense of smell.

That's when Sue was diagnosed with Parkinson's disease. One year later, she found neurologist Rajesh Pahwa, MD, director of the Parkinson's disease and movement disorder center, a Parkinson's Foundation Center of Excellence, at The University of Kansas Health System in Kansas City.

"He's the second doctor I went to about Parkinson's and I've stuck with him for 14 years," says Sue, now 65. "That's how much I like him and the way he works. He's one of the top in the world."

Treatment roller coaster

Every case of Parkinson's disease is different. Symptoms include tremor, slowed movement, rigid muscles, and problems with walking and balance.

"A medicine called levodopa can help control these symptoms in the beginning," explains Dr. Pahwa, "but as the disease progresses, treatment becomes more complicated."

At first, one pill gave Sue several symptom-free hours. This effective control of symptoms is referred to as "on" time. But when the medication wore off before the time for her next dose, Sue's symptoms returned, and she experienced what is referred to as "off" time. Every day was a roller coaster. She was up and down, on and off.

As the years passed, Sue needed more frequent doses of levodopa to manage her symptoms. She began to experience a medication side effect called dyskinesia – wiggling, dance-like movements that can't be controlled. By 2017, Sue needed a pill every hour. And even that was not enough.

"In her 'off' state, walking was dangerous," explains Dr. Pahwa. "Yet increasing her medicine caused dyskinesia or significant uncontrollable movements."

Falls are a significant risk for those with Parkinson's disease. A couple years prior, Sue had broken her upper arm and bruised her face in a bad fall. She spent 100 days in a rehabilitation center.

"My situation was extremely bad," says Sue. "I was off more than I was on."

Parkinson's Foundation Center of Excellence

At The University of Kansas Health System, our movement disorder specialists offer expert advice and state-of-the-art therapies for Parkinson's disease and other movement disorders.

Dr. Pahwa told Sue about an FDA-approved levodopa delivery system called the Duopa infusion pump. Levodopa is the gold standard for the treatment of Parkinson's disease, but the oral form often leads to fluctuations between good (on) and poor (off) control of symptoms. Duopa allows for continuous infusion of levodopa with the goal of increasing on time and reducing off time.

During an outpatient surgery, a small opening is made in the stomach wall and a tube is inserted into the small intestine. An electronic device, worn outside the body, pumps levodopa directly into the small intestine.

In May 2017, Sue decided to take the leap. "At first, it sounded kind of scary," she says. "But once I had the pump, I wished I had done it as soon as they came out with it."

Rather than taking a pill every hour, Sue now pops in a cassette filled with gel medicine twice a day. It provides a steady, continuous flow of levodopa day and night.

Before the Duopa pump, Sue worried she might have to move to an assisted living facility. "My family works, so they can't take care of me all day long," she explains.

But now, Sue can take care of herself. She can get out of bed on her own. She can do her own laundry. She can get around safely inside her home without a walker or cane.

"My family says I'm totally different," raves Sue. "I'm back!"

Dr. Pahwa agrees. "Using Duopa, we were able to reduce Sue's time off and dyskinesia. Now she can function better and perform her normal daily activities without assistance. That means a better quality of life and a lower risk for falls."

Sharing with others

Sue has been a regular at a support group in the senior living community she once worked at for years. She doesn't need to tell her fellow participants about the benefits of the Duopa infusion pump. They can see how much she has changed.

"More people with Parkinson's ought to try it," says Sue.

Dr. Pahwa is equally pleased. "Sue is glad she no longer has to take oral medications for her Parkinson's disease," he explains. "She is doing much better with this therapy."

Now that Sue knows how to use the Duopa pump, she doesn't make as many trips to The University of Kansas Health System. But every time she sees Dr. Pahwa, she teases him about her precious device. "You can't have it back!" she says, "I don't ever want to go back."

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