Great forgotten neurodegenerative diseases, Parkinson’s disease receives no National Plan unlike Alzheimer’s disease in particular. This results in a lack of coordination in the management and research, to the detriment of patients and their families.
One year after the White Paper on Parkinson’s disease , which offered twenty measures to improve the management of patients at the time of diagnosis, help them cope with their disease and boost research, progress is stalled almost. The Association France Parkinson calls the government.
Parkinson, the great “forgotten” neurodegenerative diseases
On the eve of the World Parkinson’s Day, April 11, the Association Parkinson calls on the State to launch urgently a national Parkinson Plan, like those that exist for other diseases, particularly for the Alzheimer disease . If the association has decided to act, it is estimated that Parkinson’s disease , which in France each year 14,000 new victims, is “the most overlooked of neurodegenerative diseases . ” “Today, solutions and concrete paths exist in support, but lack of resources, they are not coordinated nationally. There is no coverage of the French territory known visible and dynamic,” laments the association.
In 2010, France Parkinson wrote a White Paper in which it advanced four major issues and proposes measures to address them. A year later, only three of the twenty proposed measures have been adopted.
Very alone PD patients
Among the measures requested, the issue of support from the diagnosis . In fact, know that you are suffering from this disease is a real “shock,” says the association, even larger than the number of neurologists are not trained to the announcement of such a diagnosis. “I sometimes feel that I am considered an object, which, from time to time, we give some information, but very little,” and reflects a patient. Not to mention the shock to the environment, including the care of the ad is usually left to the patient who is then very lonely …
After the trauma of the diagnosis, the patient will often have to fend for themselves: from the lack of training of medical and paramedical professionals (27 specializations are potentially called to intervene with a patient) in Parkinson’s disease, and especially the lack of coordination and contacts between these caregivers, patients live long in the medical wandering.
Lack of recognition and resources for Parkinson’s
Faced with the ignorance of the people about the disease, often reduced to the symptoms that are most visible tremor of the hands, patients rely primarily on their families. These caregivers , who often sacrifice their professional or social support for the patient, unfortunately, have no official recognition, not only from the government but also by caregivers with whom they wish to create a more dialogue and create a “therapeutic alliance.”
Finally, if Parkinson’s disease remains incurable for the time of treatment options exist to help patients live better with. These advances and those to come are only possible thanks to a better understanding of the causes and mechanisms involved researchers exploring various avenues of research, both to enable earlier diagnosis of the disease and develop treatments to slow or even halt its progress. But again, it is essential to coordinate the work of researchers, to develop translational research in order to reduce the time of application of fundamental discoveries, and to conduct studies with patients.