Insights into life with Parkinson's

The diagnosis of a disease like Parkinson’s fundamentally changes life, both physically and mentally. For many affected individuals, this journey often begins subtly, with slight changes in the body that gradually influence daily life. This was also the case for the patient whose story we briefly summarize here, in order to provide insight into this illness for those who have no direct experience with Parkinson’s.

The diagnosis of Parkinson’s disease came after several doctors and tests yielded no clear results. It was a long process before he finally found the right specialist who could help him. This specialist noticed something was wrong the moment the patient entered the consultation room, based on an unusual gait. Various tests eventually led to a Dopamine Transporter Scan (DaTSCAN). A DaTSCAN is a special imaging procedure used to diagnose neurological diseases such as Parkinson’s. In this procedure, the patient is given a small amount of a radioactive substance that binds to dopamine transporters in the basal ganglia of the brain, which are involved in controlling movement. In people with Parkinson’s, dopamine production is reduced, which is visible in the scan. In this case, the scan showed reduced dopamine production in the left hemisphere of the patient’s brain, confirming both the cause of his symptoms and the diagnosis of Parkinson’s disease.

As is often the case with chronic diseases, there were subtle signs that were not clearly identifiable at first. The patient noticed changes in his fine motor skills: fastening a shirt or signing his name suddenly became difficult. This gradual decline in motor abilities was a clear indication that something in his body was no longer functioning as it had before. In 2016, he had an accident in which he fell, experiencing limitations in mobility, speech, swallowing, and concentration. His friends suspected this marked the beginning of a noticeable decline, which he himself was not yet fully aware of at the time.

One of the greatest challenges for people with Parkinson’s is Freezing of Gait (FOG), a sudden blockage of movement (Blogpost Freezing of Gait). Although he cannot pinpoint the exact moment when FOG started, he vividly describes his first experience with it. It began with a simple hesitation before obstacles, but over time, this symptom worsened into complete blockades: "I stood as if rooted to the ground and began tapping with my right foot without being able to lift it off the ground […], as if you were nailed to a spot in front of the obstacle and, even after several attempts, couldn’t get the nail out of your foot to move forward." FOG particularly occurs for him when sudden obstacles appear — whether it’s his dog lying in front of his feet, objects crossing his path, or a closely arranged group of chairs. He feels his reactions slow down when he is tired, which also makes it much harder to avoid obstacles. He reports a similar experience with stress, where he often only notices moving obstacles at the last moment and then freezes. The duration of these FOG episodes varies greatly, and sometimes he is left feeling dizzy and desperately searching for other possible triggers that might cause FOG. He has not yet developed any specific strategies for dealing with FOG, but he tries to cope with these situations mainly through humor and the ability to laugh at himself. His medication was recently successfully adjusted at a clinic, which has significantly improved his mobility. His gait has become smoother, and he feels more confident when navigating obstacles. In his close circle, he speaks openly about his illness and explains to his friends that it’s not a problem if he suddenly freezes, as long as it doesn’t happen near the edge of a staircase.