Lisa LeGrand recently became the first person in California to receive an advanced Deep Brain Stimulation system newly designed for people like her who have Parkinson’s disease or other movement disorders.
But the “first” that most impressed Lisa was this: For the first time in years, she walked through her house without having to touch her walls or furniture for support.
“It’s like magic,” she said. “I have a path through the house, and when I walk, I had to hold on to chairs and things to catch my balance. Yesterday, I was walking without having to touch anything that was a major improvement. It’s been a long time since I could do that. It’s been years.”
Lisa was diagnosed in 2005, at the age of 50 – the same age her father was when he was diagnosed with Parkinson’s disease. Her father died of complications from the disease at age 66, the same age she is now. It is difficult not to keep these ages in the back of her mind: Yet, she said her neurologist Sandeep Thakkar, D.O. – a specialist in the Parkinson’s and Movement Disorders program of Hoag’s Pickup Family Neurosciences Institute, often reminds her that her father did not have access to the same expertise or advances in medical technology.
“He’s right,” Lisa said, of Dr. Thakkar. “I have nothing but glowing things to say. The technology is important, but it alone can’t account for my treatment. I get such good treatment. If I have a problem, I know I can send Dr. Thakkar or his PA Cheryl Kyinn an email and they respond almost immediately. He and Dr. Duma provide excellent care. I am just blessed to have the doctors that I have.”
Christopher Duma, M.D, medical director of the Brain Tumor Program at Hoag’s Pickup Family Neurosciences Institute, implanted the Percept PC neurostimulator with BrainSense™ technology into Lisa’s brain on July 13. It is a small pacemaker-like device that detects her brain signals and uses the information to instantly target tailored radio-wave impulses to specific areas in her brain.
Lisa went home the same day, and immediately noticed a change. She is no longer experiencing “freezing,” the sudden, temporary inability to move that is common with Parkinson’s disease. Her balance is better, and she is feeling more confident.
“The doctor sets the device so that if I have a problem with one of my sides, he can adjust certain pulses to work on that specific area, to get rid of the abnormal electrical messages that I’m getting,” she said.
Lisa received her first generation DBS system in 2010, 13 years after Hoag became one of the first hospitals in the country to provide this innovative therapy for Parkinson’s disease. Since then, Dr. Duma has replaced the battery in Lisa’s DBS device three times. But she decided to delay a fourth battery change while waiting for the Percept to receive FDA approval.
The wait, though not long, was more difficult than Lisa had expected.
“When my battery went out, I needed assistance to go the restroom, I had a hard time walking. I’d walk into walls,” she said. “I didn’t realize how much I was dependent on it.”
One of the innovations with the new DBS system is the ability to alternate between three different algorithms. Each uniquely alters the electrical pulses she receives, as based on the real time feedback loop from the brain’s activity detected by the device sensor. Lisa has the ability to test each one to determine which work best for her.
“It’s a wonderful experience,” she said. “Based on how I feel, I get to choose the setting I want.”
This ability to tailor her therapy is why Lisa is finally able to walk through her house without worrying about her balance. Outdoors, she still uses a walker, but she has been impressed by the improvements she has seen to her quality of life.
“The thing that scares me the most is being dependent on other people. That is why I got the DBS, because I don’t want to be a burden to people,” she said. “With what they provided me with at Hoag I feel confident that I am delaying the inevitable for as long as I can.”
Undergoing a procedure during the COVID-19 pandemic was frightening, but Lisa said the safety protocols and professionalism of the hospital staff gave her confidence.
“Everyone was so reassuring. Once I saw how careful they were, I wasn’t worried,” she said.
Lisa said her experience is typical of what she has come to expect at Hoag’s Pickup Family Neurosciences Institute – compassionate care, clinical excellence and creative intelligence
“Everyone there, when I go in, they go the extra mile,” she said. “I see Dr. Thakkar every three months, and he is very caring. When I need something, he takes care of it. I never worry about not being able to get a hold of him. I know that with him, I’ve got it covered.”