150,000 people affected, only 20% of newly diagnosed patients, associations have launched States General to fight indifference.
“One morning, I painfully go down the floors of a hotel to have breakfast,” says Dominique Le Guidec, 58, diagnosed with Parkinson’s for 8 years. No luck, I miss a step… A couple pretends to come to my aid, but the woman says to her husband, you are not going to raise a drunkard! Dominique got up on his own. And he didn’t dare explain the symptoms of Parkinson’s to this lady. “The disease is unrecognized by society, denounces the patient. And Dominique’s story is not unique. In France, 150,000 people are affected by this neurodegenerative pathology of unknown origin. And 10% of them are under 40 years old. The disease also strikes people on the rise. “Often, we are offered sidings, bogus stations to make us believe that we are useful,” says Bernard, former crop manager in a cereal farm. It is a pity, because if fatigue or tremors handicap us, our mental faculties remain intact. “
A white paper for 2010
To break the silence, the association France Parkinson this month launched the Estates General. In collaboration with other associations of people with Parkinson’s disease, meetings were organized in 11 cities in France. Objective: collect the complaints of patients and families. The drafting of a white paper is scheduled for April 2010. With the hope that the government will take measures like the Alzheimer’s plan … For the moment, the time is “for rants”, explains Bruno Favier, the president of France Parkinson. Tours, Bordeaux, Lorient… Each time, patients and caregivers have recounted the injustices of which they feel they are victims. First of all, the eyes of others, even from health professionals. “I had a lot of trouble making an appointment with a physiotherapist,” says Annick Tournier, 61, who has been affected for 8 years. After several failures, I told myself that this was not their cup of tea. »Jean-Pierre Bleton, physiotherapist at Sainte-Anne hospital in Paris, recognizes this. “Among speech therapists or physiotherapists, there is a fear of neurological rehabilitation, because automatic motor skills must be treated. We are insufficiently trained, underlines the head of the functional rehabilitation service. However, we can provide many solutions to the daily difficulties of the patient. For example, to write, learn to use the shoulder rather than the hand. “
A status for caregivers The disease weighs on the body, but also on the finances. Depending on the severity, the average annual costs vary between 2,700 and 10,360 euros, according to a study published in 2004. Health insurance covers medical costs. But the social cost remains. And the patients get lost in the administrative intricacies. “I do not understand what the criteria are for obtaining the disabled adult allowance, wonders Catherine Leservoisier, 58 years old. It has been 4 years since I have been told that I am at 70% disability rate, but to have the card you have to be at 80%, I have the impression that the social services are doing it on purpose. For spouses, it is also difficult. They may be forced to give up a professional activity to accompany their husband or wife. “I ceased my activity ten years ago to help my sick husband,” explains Marianne Kuhn. That makes so many retreat points less. We must create a real status for the caregiver. “
Another complaint is the organization of care. Parkinson’s disease is one of the rare neurodegenerative pathologies to benefit from treatment. France is even a pioneer in this area. Deep brain stimulation was initiated in 1993 by Professors Alim-Louis Benabid and Pierre Pollak. Since then, nearly 3000 patients have benefited from this technique. But, “Parkinson’s is the Poulidor of neurodegenerative diseases, the care networks have not been set up, the expert centers have still not been labeled, we have no funding to create networks, to develop existing units, regrets. Prof. Pierre Pollak, neurologist, head of the movement disorders unit at Grenoble University Hospital. As a result, each year of the 10,000 new cases of Parkinson’s, only less than 20% are diagnosed. “These States General will have to advance the projects of creation of specific reception establishments, the projects of identification of particular caring gestures, hopes Professor Pierre Cesaro, head of the neurology department at the Henri Mondor hospital (Créteil) and chairman of the scientific committee of the France Parkinson association. While waiting for these concretizations, the ball is in the camp of the sick, in particular those who desert the associations. “Their word must be heard, their grievances must go up to the highest level, specifies Yves Waché, president of the Federation of Parkinsonian groups. The associations provide patients who cannot be present at the meetings of the States General with forms to collect their votes.
Questions to Prof. Pierre Cesaro, head of the neurology department at Henri-Mondor hospital (Créteil)
“We are taking small steps”
What are the advances in drug treatments?
Prof. Pierre Cesaro. First, Levo-dopa and agonists are still the gold standard treatments for correcting dopaminergic deficiency. This restores motor skills to the patient, a little motivation and fun. But, pay attention to the dosage, there is a risk of dyskinesias and secondary psychic effects, hallucinations, addictive behavior to gambling, buying fevers. I draw the attention of general practitioners, who are on the front line to identify these side effects, because there have been trials and there may be others. When it comes to new products, we are taking small steps. The preferred avenues revolve around anti-inflammatory drugs and neuro-protectors. For example, rasagiline, a monoamine oxidase inhibitor, appears to slow the destructive effects by 10%. The drug is on sale but no agreement has been reached for its reimbursement. Still to slow the disease, promising trials are underway with an agonist, pramipexol.
And on the surgical level? Pr PC Stimulation of the subthalamic nuclei has beneficial effects on specific subjects responding well to dopathotherapy. It reduces nearly 80% of tremors. But, there are still difficulties when starting to walk. We are doing stimulation tests on other shallower parts of the brain such as the pedunculopontin nucleus. The results are interesting but still preliminary. Regarding the mouse spinal cord stimulation test published by Science, one must be very careful.
Is Genetic Therapy Promising? Pr PC Research is active. There are currently between 13 and 15 known mutations that result in Parkinson’s disease. This form of the disease affects between 5 and 10% of patients. Several genes are now being analyzed that predispose to Parkinson’s or modify the response to treatment. Drug gene injection trials are underway. Tolerance is good but the efficacy is still modest with the doses used.
