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Karen and Jim’s Story

This story recounts the experience of two individuals who are receiving Medtronic Deep Brain Stimulation Therapy to reduce symptoms of Parkinson’s disease. Please bear in mind that the experiences are specific to these particular people.

Living with Parkinson’s Disease

Chatting during an online support group for people with young-onset Parkinson’s disease, Karen and Jim realized they had a lot in common. Parkinson’s disease had taken its toll on both their marriages, and both were frustrated with not being able to do the simplest tasks despite an endless combination of medications, timing changes, and dosage levels.

“One day I could needlework; the next day I couldn’t,” recalls Karen. “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 in Customer Relations because computer keyboarding became too difficult and she rarely took the walks she loved for fear of tripping and falling. Eventually Karen relied on a wheel chair and crutch to get around.

Jim’s symptoms also gradually worsened despite taking 15 pills a day for his Parkinson's disease. “Routine tasks like brushing my teeth, grabbing something out of a pocket, and signing my name became impossible,” Jim says. “And the medication made me lose my sense of thought and feel confused.”

How DBS Therapy Helped Karen and Jim

After supporting and understanding each other online, Karen and Jim met in person, fell in love, and got married. It was after this that they started investigating DBS Therapy. Karen and Jim did some online research and watched the educational CD and both admitted reluctance. “It’ll be a cold day in you know where before I sign up for that kind of surgery,” Jim recalls saying to Karen, who at that time thought the procedure was for desperate people.

However, when Jim experienced “freezing” and was unable to enjoy his hobbies of handyman work, golf, and gardening, he had a change of heart. It was time to give DBS Therapy a try. “My surgery went extremely well,” says Jim. “I’m down to 3 pills a day and have my mobility and energy back to do the things I was missing. When I woke up I said to Karen, ‘You’re next!’” Jim remembers feeling pain where the leads were implanted and in his chest where the neurostimulator was placed.

Karen finally realized she wasn’t going to be cured. Her medications were at the max and the side effects were becoming unbearable. Karen knew the surgery was covered by her insurance, and that it was not an experimental procedure. Once she witnessed the dramatic improvement in Jim, she was determined to receive DBS Therapy, too. The doctor implanted the lead and neurostimulator on Karen’s right side first then asked her how she felt. Because she sensed extreme exhaustion and her blood pressure started to rise, Karen and her doctor opted to wait for 2 months before implanting the second side.

“I could dress and bathe myself, and I felt stronger and had more control,” Karen recalls, “but I still had some unsteadiness and occasional freezing.” After her first surgery on a Monday, Karen went home on Wednesday, and walked into church on Sunday without her wheelchair or crutch. She’s now back to gardening and crocheting.

Risks of the Procedure and Stimulation

Neither Karen nor Jim experienced complications, but they can occur. 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. Stimulation parameters may be adjusted to minimize side effects and attain maximum symptom control. In patients receiving Medtronic DBS Therapy, depression, suicidal thoughts, and suicide have been reported. Occurrence of “fall” has also been reported in patients with Parkinson’s disease.

“I Should Have Done This Earlier”

Although Karen experienced very positive results from the surgeries, she still requires frequent adjustments after 5 months. “Because I have back trouble, unrelated to the Parkinson’s disease, it can mask what the DBS is doing and affect the programming adjustments,” says Karen. “They said it could take up to a year to get the adjustments right, especially if there’s other medical issues going on.”

Karen says two things are important throughout the programming adjustment period after DBS surgery: patience and trust in the programming clinician. “Getting the right settings requires a lot of trial and error. It takes patience even though I know I’m so much better than before the surgery,” says Karen. “And you have to trust your programming clinician. If you don’t have a good relationship with that person, I suggest switching to someone else. You spend a lot of time with them.”

“I definitely would have had DBS Therapy earlier, and enjoyed the benefits longer,” Karen says, looking back. “Now my friend’s husband has Parkinson’s disease but he’s still in denial. He doesn’t know how bad it’s going to get.”

Both Karen and Jim now talk to people who are looking into DBS Therapy as a treatment option. They participate in a support group at their local clinic for people with young-onset Parkinson’s disease, and are willing to talk individually with anyone who is thinking about DBS Therapy.

“It helps to talk to someone who has actually been through the process and see that there is life after DBS,” says Jim. Karen adds that they want to give back by telling their stories of receiving DBS Therapy. She feels that because Jim and she had very different results, sharing them will help give others the human element to the procedure.

Karen and Jim are traveling again and spending bright days outdoors. “We cry together, talk together, laugh together,” says Karen. “We are so grateful for each other and we’re grateful for the new lease on life DBS Therapy gave us,” adds Jim. “Love is bliss!”

Not everyone who receives Medtronic DBS Therapy will receive the same results as the individual in this story; some people may experience significant symptom relief from DBS Therapy, and others may experience minimal symptom relief. Talk to your doctor to determine if Medtronic DBS Therapy is right for you.

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