Millau. France Parkinson Aveyron: Anne-Marie Desaire fights so that in the south of the department “it becomes the way it was before”

While the France Parkinson Aveyron association is experiencing good times in the north of the department, the situation is more difficult in the south, and has been for several years. Friendly meals, regular outings… France Parkinson Aveyron experienced great momentum from the start, in Millau and its surroundings. But after numerous deaths within the association, the energy went down.

“People with Parkinson’s who live in South Aveyron tend to isolate themselves. We need to roll up our sleeves and make sure that changes.”testifies the departmental delegate Anne-Marie Desaire, filled with hope. “We need to organize ourselves so that the south and the north work together, while ensuring that everyone takes care of their own sector”she continues.

“It’s a shock”

Anne-Marie Desaire also suffers from Parkinson’s disease. She was diagnosed 16 years ago. “When you are told that you have the condition, it’s a shock”, she confides. After a period of denial for three long years, she finally joined the association. “For me, it wasn’t possible to stay in my corner when I was really lost. In this association, I found a family, it’s important to surround yourself with people like us.” The delegate is then determined to overcome the difficulties currently encountered by the association in South Aveyron, and intends to do everything possible so that “it’s going back to the way it was before”. The challenge she sets for herself: relaunch the association’s presence in the south and schedule an event, “with a few dynamic people”by the end of the year.

April 24: the first World Parkinson’s Day in Aveyron

“LThe micrograph was the first sign I had. I was writing smaller and smaller, but I put it down to computers and losing the writing habit. The tremors are the symptoms that alerted me.” Évelyne Balichard was diagnosed with Parkinson’s disease three years ago. Following this announcement, she became a member of France Parkinson Aveyron. Then, deputy delegate of the local branch of the association last October.

How do you define Parkinson’s disease?

April 11 is World Parkinson’s Day because James Parkinson, an English doctor and the first to write about the disease, was born on this date. A disease he called “agitating paralysis”. I find that it corresponds well to Parkinson’s. Gradually, we lose the ability to move. The best known symptoms of the disease are tremors at rest. But you should know that 30% of affected people do not tremble.

There are motor symptoms: tremors, stiffness, difficulty moving, pain, slowness… But there are also non-motor symptoms: the loss of facial expressions which can be difficult to live with, the micrographia, depression, apathy, slurred speech, loss of taste and/or smell, intestinal problems, incontinence, etc.

It’s one of the things that we rarely discuss. And this will also be the subject of the conference by neurologist Dr Rioboo de Larriva during World Parkinson’s Day organized on April 24 in Olemps. What we must remember is that there are as many patients as there are symptoms and ways of experiencing the illness.

How did you cope with your diagnosis?

The diagnosis of Parkinson’s disease is a significant change in your life. You say to yourself: why me? How will my life evolve? My role as a volunteer with France Parkinson Aveyron helped me understand what was happening to me, taught me to adapt to the disease and know how to preserve my abilities. Many people, upon learning of the illness, stop all physical activity. While moving helps slow down your progress. This is why we chose the themes of movement and the benefits of physical activity and physiotherapy for the world day organized in Olemps.

How does Parkinson’s disease impact your daily life?

It impacts sleep. When you have to get up several times a night because of pain and stiffness, you don’t get a good rest. We lose the automatism of gestures, we have to make additional efforts to move forward…

It’s also difficult to talk about it to those around you and at work. It is taboo because it affects the brain, and we can associate this with a loss of identity and autonomy. The main thing is not to isolate yourself.

What are the prejudices about this disease?

When we talk about it, we imagine an old man, aged, bent, trembling, who advances slowly, leaning on his cane. But the disease affects both men and women. Among the hundred members of the Aveyron branch of the association, there is parity. The disease also affects working people, therefore not necessarily elderly people. France Parkinson has also put an action in place for affected people who are under 62 years old.

Why did you choose to become deputy delegate of France Parkinson Aveyron?

I wanted to give back the benefit I found in this association when I became a member. When I took training for volunteers, I wanted to give my time to this cause.

How does the local Aveyron branch work?

In Aveyron, there are between 15 and 20 active volunteers and around a hundred members. They are either affected by the disease or are caregivers. It is not easy for loved ones because we need to understand what is happening and how to help the patient, while allowing them their autonomy.

What are the developments of the Aveyron branch?

The local branch was created in 2019. Three years ago, there were only two volunteers. It evolved well, especially because we proposed things and set up meetings.

Concerning the actions carried out…

Among the actions we carry out are meals for members and thematic meetings to address subjects based on demand. We also have an office open every second Thursday of the month at the Maison des associations de Rodez to receive the general public. An office in Millau and Saint-Affrique is also available by appointment.

Since last September, we have been offering one session per week of adapted physical activity classes with the Siel bleu association. Work on balance, flexibility, muscle strengthening… It’s a moment of conviviality, accessible to everyone. Since last month, we have set up a drawing and painting workshop twice a month. A time to work on your precision, but also to be able to express yourself and find well-being.

What are the next dates to remember?

On May 25, we will be present at the Spring of Solidarity at the stud farm in Rodez. A day of information for the general public. The idea is that we are identified.

We are also planning recreational outings and walks for the spring. Volunteers will show us places near them or places they like to visit. On June 7, we are organizing an information day for caregivers in Villeneuve, in partnership with Soleil du Causse.

At the start of the school year in September, we also want to offer a discussion group for caregivers supervised by a psychologist. The disease does not only affect the sick. We are also considering a partnership with the Rodez hospital center. We could advise health professionals. We see that the training course on Parkinson’s disease is a small part of the professional program.

A few words about World Parkinson’s Day scheduled for April 24 in Olemps?

World Parkinson’s Day, organized on April 24 in Olemps, is a way of talking about the disease, of making the message we want to convey audible and readable to the general public.

This year, there are more than 60 world days organized by the 82 committees in France. It’s progressing. In Aveyron, we would like to repeat this day next year.