KAREN AND JIM’S STORY DBS Therapy for Parkinson’s Disease
Medtronic invited these patients to share their story candidly. Not everyone who receives Medtronic DBS Therapy will receive the same results as these individuals. Some people may experience significant symptom relief from DBS Therapy, and others may experience minimal symptom relief. DBS Therapy is not for everyone, so it's important to talk with your doctor about the benefits and risks.
Karen and Jim were each diagnosed with Parkinson's before they met. Both were frustrated that they couldn't do the simplest things despite endless changes in medication.
"One day I could do needlework — the next day I couldn't," Karen said." At one point I was taking the maximum amount of drugs and feeling groggy and nauseous all the time."
Karen had to quit her job. She stopped taking the long walks she loved because she was afraid she'd fall. Eventually, she started using a crutch and wheelchair.
Jim's symptoms were also getting worse, despite taking 15 pills a day. "Brushing my teeth, grabbing something out of a pocket, signing my name became impossible."
Karen and Jim both joined an online support group for people with young onset Parkinson's disease. They decided to meet in person, and found they had a lot in common.
They fell in love, grew even closer, and got married!
Together, they started looking into deep brain stimulation. At first, both were reluctant to try it. Karen thought DBS was for people who were desperate.
But after Jim's symptoms got worse and he had to give up gardening and working around the house, he decided it was time for DBS.
"My surgery went extremely well," said Jim. "When I woke up I said to Karen — you're next!" After surgery, Jim remembers feeling sore where the leads were implanted and in his chest where the neurostimulator was placed.
For Karen, the side effects from her medications were becoming unbearable. Once she saw how much Jim had improved, she knew it was time for her to try DBS too.
Karen's doctor placed the lead and neurostimulator on her right side first. Because she was exhausted and her blood pressure started to rise, Karen and her doctor decided to wait two months before implanting the second side.
After surgery, Karen was able to go to church without a wheelchair or crutch, and she's back to gardening and crocheting. "I could dress and bathe myself, and I felt stronger and had more control. But I still had some unsteadiness and occasional freezing."
Karen has needed frequent setting adjustments. "It takes patience even though I know I'm so much better than before the surgery."
If she had to do it all again, "I definitely would have considered DBS sooner."
Implanting DBS Therapy carries the same risks associated with any other brain surgery. This may include serious complications such as coma, bleeding inside the brain, seizures, and infection. Some of these may be fatal. Once implanted, the system may become infected, parts may wear through your skin, and the lead or lead/extension connector may move. Medtronic DBS Therapy could stop suddenly because of mechanical or electrical problems. Any of these situations may require additional surgery or cause your symptoms to return.
Medtronic DBS Therapy may cause worsening of some motor symptoms associated with your movement disorder, and may cause speech and language impairments. The stimulation may be adjusted to minimize side effects and achieve maximum control of your symptoms. In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts, and suicide have been reported. Occurrence of falls has also been reported in patients with Parkinson’s disease.
Both Karen and Jim now share their stories with people who are thinking about deep brain stimulation, through Medtronic Support Link®. "It helps to talk to someone who has actually been through the process and see that there is life after DBS," Jim said. Karen added that because she and Jim had different results from the therapy, they could give others an idea of how DBS may work for different people.
Karen and Jim travel together and spend a lot of time outdoors. "We cry together, talk together, laugh together," Karen said.
"We are so grateful for each other and the new lease on life DBS Therapy gave us," Jim said. "Love is bliss."