Luc Evers

Gains
Home visits provide useful information. The patient’s partner can provide useful information. Home visits provide useful information to prepare for my neurologist’s appointment. Making notes can provide useful information. A clinical balance assessment sometimes provides insights in different causes of falling. Based on the anamnesis we can sometimes capture complex patients for advanced therapies. My partner/friends help to tell my care providers how I’m doing. Some patients can adequately describe why they fall. Some patients can adequately tell about their response fluctuations. Thanks to the Parkinson well-being map, my neurologist already knows what is going on. Sometimes the on-off diary provides insights about the role of medication. It is helpful if the patient prepares for consultations. My care providers listen to my story. Filming the patient can increase self-awareness of their walking pattern. Home visits provide useful information to know how I am doing. My physical therapist walks together with me. I tell my care providers what I would like to discuss. My neurologist is happy with the information I collect. I have a pleasant relationship with my Parkinson nurse. The guidance of my physiotherapist is very helpful. My care providers communicate with each other.

Pains
Falls are complex in patients with PD. Indication for advanced therapies is difficult. It is difficult for patients to describe the daily patterns of symptoms. The Parkinson well-being map is subjective. It is difficult to find the cause of fall incidents. Finding the right medication schedule is difficult. Some patients underestimate the duration of sleep. Filling out diaries takes a lot of time. There is a discrepancy between how patients perform in-clinic and at home. On-off diaries are unreliable. On-off diaries are unreliable. Keeping track of falls is difficult. Consultations are only a snapshot. Patients often express general complaints or find it difficult to distinguish complaints. Filling out diaries is burdensome for patients. I sometimes forget things when I talk to my neurologist. Some patients downplay the severity of fall incidents. It is difficult to derive the pattern of response fluctuations from the patient’s story. Filling out diaries can become an obsession for some patients. My neurologist only sees how I am doing during the appointment. On-off diaries are unreliable. There is a discrepancy between how patients perform in-clinic and at home. Some patients find it difficult to accept the diagnosis. My neurologist does not see the value of the Parkinson well-being map. It is difficult to assess why cognitive strategies are not always working. Sometimes there is a discrepancy between the story of the patient and the partner. It is difficult to evaluate patients with cognitive problems and without a partner. My neurologist has little time. Applying learnt strategies at home is challenging for cognitive impaired patients. Consultations are only a snapshot. The UPDRS is not suitable to track long-term changes. My general practitioner knows little about PD. Patients need to take an extra dose in time when they are off. More information about PD is confronting. Not many patients take the lead in what they want to talk about. I do not know which PD app is good. Finding the right medication schedule takes a long time. There is no pattern in my PD symptoms. It is difficult to anticipate. It is difficult to distinguish between PD and general complaints. It took a long time before the diagnosis became clear.