Photos from France

Paris, France, 02/2012 • Aside from the professional services she provides, Marc Perrone values deeply how the presence of nurse Fatimata Keita enables him to be more independent and avoid the social isolation that often comes with advanced disability. They go for a walk almost every day. It is a time when Marie-Odile, Marc’s partner, can go out herself. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • Marc Perrone is talking on the phone while waiting for his phisyotherapist in the morning. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • “I was terrified when Marc said he wanted to keep performing after his last relapse. Afraid that people wouldn’t know where to look once they saw the wheelchair, or that they would pity him,” says Marie-Odile Chantran. “After a couple of concerts, I understood that they were still coming because he is still Marc Perrone, and he still has something to give them.” Credit: Lurdes R. Basolí

Paris, France, 02/2012 • Marc Perrone is gathering his thoughts in a waiting room before giving a music concert with his group. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • Armelle Bugand needs to focus between shots. In 2011, Armelle won the Gold Medal for handicapped archery for the city of Paris. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • Hitting the bull’s eye may be the end goal, but Armelle Bugand finds in archery what other PwMS look for in practicing Yoga or Qigong. Before she releases each arrow, she must achieve the “zen” moment that brings all of her energy to a single focus. This mental discipline is important to coping with MS and living with a “mind over body” philosophy. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • From childhood, Armelle Bugand has been passionate about both music and sports. Ping pong provided a great outlet for her boundless energy until MS undermined her strength and balance. In switching to archery, she finds an interesting balance between the “zen” moment she needs to find before releasing the arrow and the many laughs shared with competitors who have become close friends. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • MS has struck Armelle Bugand hard: during a particularly bad period, she had nine relapses in 14 months and she has already advanced to a second-line drug after having poor results from the first-line options. During remissions, her energy and enthusiasm are low, although she does suffer fatigue and needs to be conscious of her limits. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • Armelle Bugand and Pepsi have been close friends for almost 14 years. Like many young people with MS, Armelle worries about whether having MS will affect her chances of finding a life partner. Finding the right time to tell a new acquaintance is never easy, and one cannot anticipate how the person will react to learning that the disease is both chronic and unpredictable. Credit: Lurdes R. Basolí

Paris, France, 02/2012 • The Paris metro is notoriously difficult for people with disabilities; many stations lack elevators or escalators. One of the routes Armelle Bugand uses most often to transfer between lines means a tiring hike up many stairs. Armelle’s current level of disability is less than 80%, which doesn't qualify her for unlimited use of handicapped transport. Her employer does help out by providing a taxi to the office on weekday mornings, but on weekends she is on her own. Credit: Lurdes R.

Riom-ès-Montagne, France, 02/2012 • Smoking is a risk factor for more rapid progression of MS. But the Centre Geneviève Champsaur, a residence for 36 people with severe disability, refuses to prohibit it. “We believe every resident should be free to do whatever makes them feel alive,” says Dr. Marie-Noël Lemay, “Part of that is choosing their own risks. We educate them about risks, but we will not decide what they can or cannot do.” Smoking is a daily pleasure for Francis Nicollas; others focus on choosing

Riom-ès-Montagne, France, 02/2012 • The Centre Geneviève Champsaur was designed to be a lively place for people with very limited mobility. Open spaces and large windows let residents watch what is going on inside and outside the building. Bruno Gauthier prefers to spend his time by the main entrance, where he can greet everyone who comes or goes. The staff place him here after breakfast, then return him for meals or other activities. Credit: Maximiliano Braun

Riom-ès-Montagne, France, 02/2012 • Meal-time at the Centre Geneviève Champsaur is carefully organised for maximum comfort. The kitchen prepares what people want, sometimes serving 20 different menus per meal. Residents who have little control over movement or make a lot of noise are served first to better accommodate the other. Carers are attentive with the eating pace of each resident. Credit: Maximiliano Braun

Riom-ès-Montagne, France, 02/2012 • Carers work in pairs – in this case, Sandra Boyer (left) and Frédérique Lemmet (right) – when putting residents to bed at the Centre Geneviève Champsaur. This practice reduces strain and provides additional comfort. Bruno Gauthier’s walls are covered with pages copied from magazines and books, reflecting his keen mind and the Centre’s philosophy that every resident should create his or her own environment. Credit: Maximiliano Braun

Riom-ès-Montagne, France, 02/2012 • A duck salad next to its minced twin ready to be served at the Genevieve Champseur Centre. The minced salad has yogurt as an added ingredient in order to make the overall presentation a lot more appealing. This is the center's initiative in serving the same dish to residents who may or may not be able to chew and doing so in a way that it looks appetising. The center houses 36 residents and the kitchen prepares 24 different meals; a testament to the center's willingness t

Riom-ès-Montagne, France, 02/2012 • Bringing a dog into the Centre Geneviève Champsaur required special training for Cash, one of the physiotherapists dog. Cash often stands still next to residents; here, he gives Sandra Charbonel the time she needs to reach out and give him a pat (a form of unconscious physiotherapy). But even a well-trained dog will instinctively go to the people who can engage most readily. For this reason, all staff are under strict instructions to ignore Cash completely: no petting, n

Riom-ès-Montagne, France, 02/2012 • Regardless of the weather, the front door is always open at the Centre Geneviève Champsaur: independent living implies the freedom to come and go as one pleases. Philippe Godard (in electric wheelchair) insists on getting fresh air every day. Laurent Mercier, the Centre’s Activity Coordinator, watches from a distance, conscious of the fine balance between letting Philippe have his moment of “living on the edge” and being ready to step in if the situation becomes dangerous

Riom-ès-Montagne, France, 02/2012 • Every resident at the Centre Geneviève Champsaur begins the day with a bed bath (full showers or baths are given once or twice per week). Bruno Gauthier, who is paralysed but has a sharp mind and a talkative streak, is famously picky about this routine. Emmanuelle Mercier (left) complies with his wishes and, if anything changes, will note it in his records so that other carers are informed. Credit: Maximiliano Braun

Riom-ès-Montagne, France, 02/2012 • Bathed and dressed, Bruno Gauthier now waits for the “brancardier” (porter), a strong carer nurse who will transfer him from the bed to his wheelchair. Bruno likes to be first “up and around” among residents in his Living Unit (a wing of 12 rooms) at the Centre Geneviève Champsaur and no one else minds, so staff accommodate this request. He watches the TV news while waiting. Credit: Maximiliano Braun

Riom-ès-Montagne, France, 02/2012 • After breakfast, Emmanuelle Mercier (right) prepares to take Bruno Gauthier through the last step of the morning routine: brushing his teeth. Like most of the 36 residents at the Centre Geneviève Champsaur, Bruno is almost completely paralysed by MS and relies on staff for every aspect of his daily care. While staff at the Centre are friendly with residents, a degree of professional distance is encouraged: they use surnames and the formal “vous” when speaking with residen

Photographer:

Lurdes R. Basolí

Maximiliano Braun

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