Jean-Claude Parent is a pillar of his local community. Parkinson's disease has changed his life, but it didn't change his involvement.
Three years ago, Jean-Claude Parent was an energetic man of forty-six who worked for the town planning council constructing roads. His wife, Nathalie, was a nurse’s aide and both were well known as people who were involved in their community. Their home was that place in the neighbourhood where kids would go to hang out. Then Parkinson’s disease arrived in their lives.
As a neurological disease whose symptoms and progression vary with each individual, Parkinson’s disease has many faces. Here, it struck a man who tries to cope by reaching out to other patients.
Jean-Claude Parent is from Maubeuge, a small French town near the Belgian border. An active man who has spent his life working for the town council, Jean-Claude is a familiar face in the area because of his extensive community involvement. His wife Nathalie jokes, “He was always part of some club or another. I met him through a community group promoting regional folk dancing when we were in our twenties.” After their two children, Lucie and Maxime, came along, he became president of the Parent-Teachers Association and was active in the soccer league. He even managed to find time for his hobbies – fishing, keeping birds and fish, and gardening.
A series of adjustments
But his energetic life began to grind slowly to a halt as he experienced symptoms he couldn’t understand. “At first it was little things, like not being able to put in a screw. I thought I had simply overextended myself and put it aside to do later.” But his wife Nathalie’s medical experience told her that something was really wrong. “He would have bad cramps at night, and during the day could simply sit down in his armchair and fall asleep. He had never done that before – he’s such an active guy.” She urged him to see the doctor. Since he had known Jean-Claude for a long time, the doctor suspected Parkinson’s immediately and quickly referred him to a neurologist, who made the diagnosis. “It really hit me hard,” Jean-Claude remembers. “I went back to the car and cried like a child. I didn’t want to tell anyone, not even my family. But when I got home, Nathalie was waiting for me. The first thing she said was, “You got your diagnosis and you’ve been crying!” I can’t hide anything from her. My family rallied around me right away, and that helped a lot. But I couldn’t really accept the diagnosis. I admit that I didn’t have confidence in my neurologist; he had had a stroke and had some lasting physical repercussions, and I wasn’t so sure of him at first and I kept on thinking that there must be some mistake.”
Jean-Claude decided to consult a professor at the research hospital in Lille. “I recoiled when I entered the waiting room and saw all these people in such bad shape and in wheelchairs. I said to my wife, ‘If this is Parkinson’s, then I can’t deal with it.’ I was terrified of ending up like that. I clung to the notion that I had been misdiagnosed, but the professor looked over my case file and said, ‘I’m 95 per cent sure that you have Parkinson’s.’ When I expressed doubts about my neurologist, he discussed my treatment in detail and convinced me that I was in good hands.”
Eventually, the neurologist Jean-Claude first doubted became his trusted physician and confidant. When asked if his acceptance of his doctor’s disabilities mirrored his own progress towards an acceptance of his illness, he agrees. “We have a relationship where we can confide in each other about the challenges of dealing with a chronic illness. I consider him a friend.”
Life became a series of lessons and adjustments as Jean-Claude learned to live with Parkinson’s. “I read about Parkinson’s being an uninvited guest that arrives in your home. It may never leave, but you can try and make it live by your rules.”
One hurdle for him is the on/off syndrome, the sudden and often radical shifts between normal functionality and a non-functioning state common in Parkinson’s patients. “Some days I feel great, and on others, it’s as if I don’t exist. I come to a complete stop. It’s not always easy for people around me to understand when they’ve just seen me well. Also, I tend to forget simple things, and this sends me into a panic. Once I went to the grocery store and couldn’t remember the code for my debit card. I could make the payment in cash, but I came home and ended up crying. My wife couldn’t figure out why I was so upset, but it’s terrifying.”
Jean-Claude needed help. Even though he was immediately eligible for disability allowance, he insisted on continuing to work. His employers switched him to a desk job where he now coordinates cultural activities for the town. As he gratefully acknowledges, “I have the most supportive staff. They asked for information about my condition and they give me the flexibility I need to be able to function.”
The honeymoon phase
Thanks to the support of his family and the understanding he has received from friends and colleagues, Jean-Claude has had the strength to cope in the way that seems most natural to him: by connecting with others in the same situation. He contacted a patient association, France Parkinson, and volunteered to help the Paris-based association build their chapter in northern France.
He set out with characteristic enthusiasm to marshal his “troops” and connect with fellow Parkinson’s patients, and he has now become a determined spokesperson for his association. He lectures regularly on coping with Parkinson’s, and recently put together a conference, together with the professor he consulted in Lille, that was attended by around 200 people.
Patients and their relatives often contact him for advice. One woman called about her partner, who had been diagnosed with Parkinson’s and had alienated his family because he had initially denied his illness and refused medication. They couldn’t cope with his symptoms. As a result, he isolated himself and never left his home except to see his doctor. Jean-Claude went to meet them. “I recognized him by his gait, typical of a Parkinson’s patient. We headed off to a nearby café, just the two of us, and talked for an hour comparing notes about the illness. That’s always interesting since none of us has exactly the same symptoms. As we made our way back, he laughed. Seeing him laughing after so long, his partner burst into tears. She asked, ‘Mr. Parent, what did you do?’ There’s no magic involved, just connecting with people. Now he comes to meetings regularly and I even got him to do a radio interview!”
Jean-Claude is enthusiastic when he discusses his work with France Parkinson. “We’re trying to promote awareness of Parkinson’s and its specific requirements among physical therapists and other caregivers. I have also signed up a group of Parkinson’s patients from the area for a spa retreat – at one of the three spas in France which specialize in treating neurological disorders, and are subsidized by the French national health insurance.”
While helping others also helps Jean-Claude to maintain his dignity in the face of a debilitating disease, he still needs to balance his volunteer work with the demands that Parkinson’s makes upon him. “Sometimes people call and want to talk for an hour, and then I’m exhausted. But I’ve received training from the association on how to set limits.” He stresses that his family also has to deal continuously with the realities of his illness. “In a sense, I’m not the only one who has Parkinson’s disease.”
“Still,” he says, “I’m lucky. I’m in the ‘honeymoon phase’ of Parkinson’s, as my doctor puts it, and I intend to be as active as possible for as long as possible. Parkinson’s might be my uninvited guest, and sometimes it would be nice to be able to lock it up and throw away the key, but you have to find a way to co-exist.”
In 2008, Jean-Claude was diagnosed with Parkinson’s disease.
At that time he worked for the town planning council constructing roads.
Although he is eligible for disability allowance, he insists on continuing to work.
He is known as a man involved in his local community, and has volunteered to help the patient association, France Parkinson, build their chapter in northern France.