This story recounts the experience of one caregiver who has a family member receiving Medtronic DBS Therapy for Parkinson's disease. Please bear in mind that the experiences are specific to this particular person.
Living with Parkinson's Disease
"Psychologically and emotionally, it's healthier for me to think of myself as a partner instead of a caregiver," reflects Linda, whose husband, Kirk, has Parkinson's disease. "We've been married for 42 years and have handled lots of things as partners."
Before Kirk was diagnosed with Parkinson's disease, he had shared with Linda that he was experiencing some troubling symptoms like extreme fatigue, not being able to stay focused through a business meeting, heightened anxiety, and dizziness. A movement disorder specialist diagnosed Kirk with Parkinson's disease when he was 59 years old. Linda felt like she had been hit over the head. Her husband seemed too young.
Through Kirk's extensive internet research and participation in support groups, he learned about Medtronic DBS Therapy. Some years had passed since he was first diagnosed, and Kirk knew medications weren't working as well as they used to. Linda and Kirk were aware that there was a window of opportunity when DBS Therapy is most effective at controlling Parkinson's disease symptoms. "Kirk was very enthusiastic about DBS and wanted to go through with the procedure," recalls Linda. "I realized how important it was for him, and we both viewed it as an opportunity. It was helpful that as a couple we were in the same place mentally. We were both peaceful with the decision."
How DBS Helped Kirk
DBS Therapy uses a surgically implanted medical device much like a cardiac pacemaker to deliver electrical stimulation to precisely targeted areas within the brain. The stimulation is delivered through a thin wire called a lead, which is tunneled beneath the skin.
Stimulation of these areas blocks the signals that cause the disabling motor symptoms of Parkinson's disease. The electrical stimulation can be noninvasively adjusted to maximize treatment benefits.
Kirk's DBS Therapy implant procedure was done in three stages: first one side of the brain, then the other, then the battery implant in the upper left chest. It took about 4 weeks for the swelling to go down so the system could be activated and programmed. "Even at the first programming session, the results were awesome," states Linda. "Kirk could draw a straight line and sip water from a glass without sloshing. I had a glimmer of what life could be like." Kirk had additional programming sessions to fine-tune the stimulation and will continue to get adjustments as part of his ongoing treatment.
"On Easter Sunday many people witnessed the results of Kirk's surgery," reminisces Linda. "He sang in the choir and held his own music for the first time in years. Kirk no longer needs a music stand to keep the song sheets from rustling with his tremors. His fellow choir members were visibly touched."
When Kirk gives public talks about DBS and movement disorders, he often demonstrates the effectiveness of the therapy by turning off the stimulation with his hand-held programmer. The shaking starts instantly.
Kirk has also become a published author. He wrote an illustrated children's book called Carson and His Shaky Paws Grampa to help parents and grandparents talk comfortably with their children about Parkinson's disease. The book is about the relationship and love between a grandfather who has Parkinson's and his seven-year-old grandson.
"A Sense of Humor is Essential."
Now retired, Linda feels like her past career as a social worker prepared her for this journey with Kirk. She knows the importance of taking care of herself, and thinks of tennis as her therapy. Linda stresses that good communication is also critical. "Kirk has to let me know how or what he is feeling physically and emotionally because as we say, I can't get into his head or body," states Linda. "And similarly, I need to communicate my needs. Not all days are the same for him, so being flexible and more spontaneous is helpful. And a sense of humor is essential – it helps with stress."
Risks of the Procedure and Stimulation
Kirk has some tenderness at the site where his battery pack was implanted. He uses sheepskin padding on his seatbelt when he drives, and shifts his grandkids to the other side when necessary. DBS Therapy requires brain surgery. Risks of brain surgery 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.
"My goal is to not treat him like he's disabled."
Linda says that she no longer worries about Kirk's shaky hands in a buffet line or if he orders soup at a restaurant. "My goal is to not treat him like he's disabled," says Linda. "When I drive, I park far away from the door so we both get exercise."
Linda feels she also has benefitted from Kirk's surgery. "He put together a bookshelf the other day with no frustration, using a hammer, nails, and screwdriver. And he can keep up with our six grandkids, playing cards and games. Being a team has helped us get things done. We have different skills and talents and we each do what we're better at!"
Medtronic invited this individual to share her story candidly. Not everyone who receives Medtronic DBS Therapy will receive the same results as the patient 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.
Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information.