Parkinson’s disease has a great impact on the physical and mental health that can lead to loss of autonomy and self-esteem, altered relationships, and social isolation (1). Furthermore, severely affected patients present a challenge to their families and health professionals. Two important current clinical treatments used to treat severe Parkinson’s disease are deep brain stimulation (DBS) and the Duodopa pump. Deep brain stimulation is a brain modulation technique that works like a pacemaker for the brain. It is a neurosurgical treatment because it requires the implant of electrodes deep inside the brain. These electrodes are connected by subcutaneous cables to a battery located in the chest. The battery sends electrical pulses to the electrodes, which can stimulate the brain and relieve the symptoms of Parkinson’s disease. The duodopa pump consists of a continuous intrajunal infusion of levodopa-carbidopa intestinal gel. The gel is contained in a plastic cassette that is connected to a pump, which is connected to a tube inserted into the intestine through a small incision in the intestinal wall.
The DIPEx module on experiences with Parkinson’s disease and deep brain stimulation or the duodopa pump tries to allow different people to share their experiences with the disease and these two treatments. We would like to interview both patients with Parkinson’s disease treated with either deep brain stimulation or the duodopa pump and their relatives. The interviews will take about 1 to 2 hours and can be conducted in German, French, Italian, English or Spanish. Through interview fragments in the form of texts, video or audio clips, it will be presented how the disease and therapy affect the daily lives of patients and relatives, how they deal with it, and how it affects their family and their personal relationships.
We believe that sharing these experiences can help other people make treatment decisions or find themselves in the same situation. If you would like to participate, do not hesitate contacting us.