In a survey unveiled by the France Parkinson association, adults suffering from this neurodegenerative pathology highlight their daily concerns and the difficulties they face in the management of their condition.
- In France, one in 250 adults is affected by Parkinson’s disease.
- This pathology is the second cause of motor disability after strokes.
We know that Parkinson’s disease has repercussions on the daily lives of patients but also on those of their loved ones. Because of this pathology, patients lose their autonomy. They may be unable to perform everyday activities, keep their balance and walk. People with this neurodegenerative condition also have difficulty writing, speaking or even concentrating.
“I had lost the automation of my movements. For example, when I was using a computer, I had to remember to move the mouse to be able to do it, because I no longer made this gesture automatically”, says Elisabeth, a woman who learned in 2014 that she had Parkinson’s disease.
The patient, present at the press conference of the France Parkinson association on March 24, also adds that the care pathway for patients is similar to “an obstacle course”. In a survey conducted by Opinionway, conducted among 3,579 adults affected by this neurodegenerative pathology (3,087 patients and 492 caregivers), patients point to three difficulties they encounter during the circuit to access care.
1 / Diagnostic wandering
For all the patients surveyed, an average of one year and two months elapses between the first consultation and the diagnosis. “The preclinical phase of the disease, before the appearance of the first symptoms, generally lasts several years. During this period, the brain compensates for the drop in dopamine through plasticity processes, allowing normal brain function. Patients remain asymptomatic until until 50 to 70% of the dopamine neurons are destroyed and the brain is no longer able to compensate”, explains Professor Christine Brefel-Courbon, neurologist and pharmacologist at CHU Toulouse.
According to France Parkinson, this diagnostic error can also be explained by the fact that 47% of patients are unable to access a neurologist. According to the results of the survey, 44% of them were not immediately referred to this specialist by their GP and 38% report very long delays in obtaining an appointment. “Neurologists are not always able to identify the pathology immediately, due to the absence of very characteristic symptoms of the disease”can we read in the results of the survey.
2 / The readjustment of salaries
The patients surveyed also indicate that the frequent reassessment of treatments, which is necessary for the drugs to continue to be effective, has a significant impact on their quality of life. Nearly 90% of them have been affected by this readjustment since their diagnosis was made. These drug changes occur nearly three times on average for a patient before five years of illness.
These changes in treatment bring new constraints for people suffering from Parkinson’s disease. And for good reason, 49% of them see their number of medications taken during the day increase. Patients are also taking more treatments. “Because of these reassessments, the times of the doses also change. Patients always have a clock in their head. They organize their day according to the times of the doses, because if they do not take the drugs on time, the motor symptoms will show up again”, says Professor Christine Brefel-Courbon. According to the association, these readjustments can generate anxiety.
3 / A lack of multidisciplinary care
According to the neurologist and pharmacologist, adults with Parkinson’s disease do not yet benefit enough from multidisciplinary care that integrates paramedical approaches, while it can improve the quality of life of patients.
The survey reveals that 28% of patients are not followed by a physiotherapist and 71% remain without speech therapy, while more than half of patients have difficulty speaking. “It was complicated to find a speech therapist. After contacting three, who were not available, I managed to get an appointment with a specialist”, remembers Elizabeth. France Parkinson specifies that this lack of multidisciplinary care is observed because neurologists do not yet seem to be sufficiently prescribers of these paramedical approaches.
