It was in 2012 that Daniel Schmitt learned of the pathology causing his walking problems. Today, his daily life with Parkinson’s is very complicated but he can count on the precious help of his wife, Béa. Exclusive testimony.
Nearly 300,000 people live with Parkinson’s disease in France. This figure is expected to triple by 2050. Daniel Schmitt, aged 67, is one of them. This disease, whose World Day takes place on April 11, is characterized by the progressive disappearance of dopaminergic neurons. These brain cells produce dopamine, a chemical messenger essential for transmitting information between nerve cells controlling certain functions in the body. Parkinson’s disease is characterized by three motor symptoms: akinesia (difficulty performing certain movements), slowness of movement and tremor. It was walking difficulties that led Daniel to consult. He was 54 years old. “I often stuck with my left foot on the cobblestones and was hunched over. I met my GP’s replacement who quickly thought of Parkinson’s disease, a pathology about which I knew almost nothing at the time. The only symptoms I knew were the tremors.” he shares with us. Daniel undergoes various tests, based on exercises assessing finger dexterity, walking, speaking and writing, which confirm the diagnosis.
“He was speaking more and more poorly, speaking too quickly and very quietly”
At first, its symptoms are mild. “Apart from walking problems, I had no other problems and I could go about my business as before. My wife and I said to ourselves that if this was Parkinson’s disease, it was manageable.” notes Daniel who then begins to take medication aimed at compensating for the dopamine deficiency. “They allow you to be in better shape for a few hours but they do not slow down the disease or reduce the symptoms,” confides Béa, his wife. Little by little, they actually got worse. “Daniel began to have speech problems: he became more and more slurred, spoke too quickly and very quietly. He also wrote with difficulty and became smaller and smaller”explains Béa, who specifies that the medications gradually stopped having their effects.
Dismissed for physical incapacity in May 2016, Daniel saw a glimmer of hope in 2019 when he was offered neurostimulation. Invented by a French team in Grenoble a little over thirty years ago, this method consists of implanting electrodes in certain deep structures of the brain. Connected to an electrical box located under the skin, these electrodes send electrical impulses which partially restore the functioning of dopamine-dependent neural networks and limit motor fluctuations (tremors, stiffness, disabling slowness, etc.) and difficulties when performing certain movements. “During the first months, I experienced a real rebirth. The operation completely changed my life. I greatly reduced my medication consumption and I started walking almost normally again”explains Daniel, who recounts his daily life and the challenges he faces in the book “Parkinson, 13 years already” (Ed. du Panthéon).
Unfortunately this improvement only lasted two years. Gradually, this father of two adult daughters had to take the same amount of medication as before. “My condition has deteriorated again, slowly and surely. I have returned to the same level as before the placement of the electrodes. The blocking of walking and freezing (a symptom which manifests itself by the impression of having one’s feet glued to the ground) has returned. Fortunately, for the moment, I do not have too many dyskinesias (involuntary and often jerky movements which appear after prolonged use of certain medications).” Today, it is especially communication problems that are very annoying. “I speak less and less well and my wife often tells me: ‘Articulate, breathe, take your time’. As the day goes on, fatigue becomes more and more present, as do speech difficulties. The stuttering intensifies and each word becomes an obstacle to overcome. No longer audible or understandable most of the time, I call my wife for help.”
“I feel like an hourglass emptying itself of sand, but not turning back”
Daniel is also faced with the judgment of the people he meets. “Due to speech difficulties that intensify throughout the day and words that stumble, people look away and misunderstandings accumulate”he regrets. “Especially as over time, I encounter more and more difficulty doing fun activities or driving and the constraints of treatment as well as emergencies (sudden, urgent and irrepressible needs to urinate) are more and more difficult to live with.” However, Daniel spared no effort to improve his daily life and to benefit other patients. So, he tested the LSVT Loud method (a method that facilitates communication by helping to speak with a higher voice level). He also did four spa treatments including a specific module for people with Parkinson’s disease. “This module includes adapted gymnastics activities, speech therapy, musicology, balance and memory work and art therapy. The cures last three weeks and provide real benefit at least for a few weeks,” notes Daniel who also mentions the Haka, the famous ritual dance practiced by the Maoris and which New Zealand rugby players have gotten into the habit of performing before each match.
“Luckily my wife is here”
“The choreography of the Haka was adapted for Parkinson’s patients by Béa, a former school teacher, who for a time became the choreographer of the show that we offered with other members of the Parkin’théâtre troupe, a theater workshop set up for people with Parkinson’s disease by the 67 France Parkinson committee. On April 13, 2024, we performed on the occasion of World Parkinson’s Day. We performed sketches, dancing and singing, and it was a success and a happiness”, enthuses Daniel, who recognizes that his daily life is now very complicated. “Sometimes I feel like an hourglass that is slowly emptying its sand, but never turning around. I don’t wish this illness on anyone. It’s your whole personality that changes a little every day with the appearance of new symptoms that you have to integrate into your daily life each time.”emphasizes Daniel.
His view has also changed on certain radical choices such as assisted suicide. “Yves Auberson and Vincent Cousein, who were respectively a golf teacher and a computer scientist, chose to resort to assisted suicide so as not to suffer further from the illness. At the beginning, I did not agree with their choice but I have evolved on this subject. I tell myself today that it may be a solution for those who seek peace of body and soul.” However, today it is not “able” : “I prefer to live day by day thanks to the indispensable support of Béa, the woman of my life. I know some people whose spouse has left due to illness. But Béa is always there, patient and attentive. She doesn’t treat me like a sick person but like a husband. And that’s worth gold”breathes Daniel who remains perfectly lucid about the evolution of his illness: “My illness is like a worm in an apple. It continues its conquest and is sure to win but I continue to move forward… whatever the cost.”
