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In 1984 when Luitgard was 40 she was diagnosed with Parkinson’s. She began to experience akinesia of her left arm and rigidity of her neck and could not write correctly. She became rapidly dependent on the assistance of her husband Friedrich for daily activities such as standing and dressing. The increasing difficulty with walking and daily freezing periods led her to retire as a music teacher.
Luitgard and Friedrich had always been an active couple, but over time they had to give up many social opportunities and travel became impossible. “I stopped going to the supermarket as I was unable to take the money out of my purse. But the worst thing was that I had to abandon my favourite activities such as playing the piano and going to concerts”. She particularly remembers the looks she received from people in the street. Life with medication was not easy. As her disease progressed to an advanced stage, she suffered from levodopa related dyskinesias. “I couldn’t control the movement of my right leg; it would jerk completely out of control”.
When her relatives told her about TV programs that showed the results of deep brain stimulation (DBS) on Parkinson's patients, Luitgard decided to visit several specialist centres. Her research led her to a movement disorder specialist who told her that she was a good candidate for DBS. Friedrich recalls, “We did not know what the outcome would be, but we were feeling optimistic that this would work”.
“I had great confidence in the surgical team”, she remembers. “I did not have any pain, and I did not feel that the procedure was lengthy. The assistance of the physiotherapist in the OR was very helpful.” The only uncomfortable moment was on the previous day when her antiparkinsonian medication was withdrawn. When the DBS system was turned on, Luitgard saw the symptom relief almost immediately and the improvement became maximal four weeks after the surgery. As happens for many patients, she went back twice during the first few months for fine adjustments of the neurostimulator to get the best benefit with minimal side effects.
“I have so much to catch up with. Friedrich and I now enjoy playing music, going to concerts and long cycling tours. I really appreciate being able to do simple thing such as cracking a nut,” says Luitgard. “And deep brain stimulation is perfectly compatible with a normal life and I visit my doctor once a year to check the neurostimulator which takes about one hour.” Although she continues to take her antiparkinsonian medications, the dosage has been reduced by half.
Luitgard and Friedrich still recall the time when their life was difficult. “The benefits of deep brain stimulation are amazing”, she says. ”And more importantly, I have recovered my dignity”.
The views expressed in this story are those of the interviewees and do not necessarily reflect views held by Medtronic or the EPDA.
