Parkinson’s disease: patients want to make their voices heard

Well known to the general public, Parkinson’s disease is not just about tremors. It is accompanied by more than sixty symptoms… On the occasion of the world day dedicated to this disease in full progression, the France Parkinson Association is launching a new campaign.

Parkinson’s disease isn’t just about tremors

Parkinson’s disease is a disease responsible for a large number of symptoms, both motor and non-motor. More than 60 symptoms have been identified. Among them, three types of disorders make it possible to make a diagnosis: slowness of movement, rigidity of the body, and tremor of the limbs at rest.

The causes of the disease are not yet subject to scientific consensus, but we know that it is characterized by the destruction of a specific population of neurons: the dopamine neurons of the substantia nigra of the brain. These neurons are particularly involved in the control of movements.

This complex disease does not benefit from any treatment to cure it or to slow its progression.

One in 50 people will be affected in their lifetime

In France, there are 270,000 Parkinson’s patients, a figure that is constantly increasing. According to France Parkinson, “2.5 times more cases have been recorded in 25 years and a 30% increase is estimated by 2030“. Besides, the disease of Parkinson represents “the 2nd cause of motor disability after stroke. It is probably also one of the first causes of invisible disability in the workplace for people of working age“.

Difficulty accessing care for patients

The objective of France Parkinson is to challenge the public authorities faced with the difficulty of access to care for the sick. “47% of people with Parkinson’s disease report difficulty in accessing a neurologist for a diagnosis” she recalls. A follow-up that deteriorates further when it comes to other specialists:

• 28% are not followed by a physiotherapist;
• more than 64% are not followed by a speech therapist while speech disorders are more than frequent symptoms (58% of patients have difficulty speaking);
• Only 4% of people who have been sick for more than 15 years benefit from occupational therapy, whereas the loss of autonomy generally goes hand in hand with the progression of the disease.

France Parkinson alert on “the need to better coordinate the course of care for people with Parkinson’s and to better support them in their life course. The association pleads in particular for them to benefit, in addition to the bi-annual follow-up on average by the neurologist, from follow-up by a nursing professional with a referral profile for Parkinson’s disease.“.

A pathology whose disability is difficult to recognize

France Parkinson also points to an incredible situation: “While Parkinson’s disease is the second cause of motor disability after stroke, nearly 70% of people with the disease for more than 10 years do not have a recognized disability. Only 6% of them have also obtained Recognition of the status of disabled worker“. A status whose obtaining depends on the Departmental Houses for the Disabled, which do not all have the same practices…

France Parkinson thus asks that “the MDPH refer to a common grid systematizing the consideration of Parkinson’s disease as a disabling disease. The association also points to the need to raise awareness and train occupational physicians in Parkinson’s so that they can provide real recourse for sick people in professional activity.“.

About fifty events organized throughout France

During the months of April and May, the France Parkinson association therefore organizes various events in order to “to inform, raise awareness, and support sick people, caregivers and loved ones”. Conferences, round tables, or practical workshops, these events will allow all these people to debate and exchange with their peers on their experiences. You can find the list of these meetings on the site of the France Parkinson association.