video: When MS threatens more than your health.

"Amadou and Bettina Touré are both architects. Amadou's father came from Mali and his mother from Lorraine, in Northern France. They moved to Freiburg, Germany, about 15 years ago. Amadou lives with MS and had to stop working. He is a cultured person who reads a lot, loves music and beauty in all forms. So is his wife. They are dealing with Amadou's disease with calm, courage and intelligence. I had the privilege to be a witness to their life for a few days, learning how a disease like MS impacts people beyond the obvious physical challenges. There are facets and consequences of MS that are often ignored, but they need to be explained in order to understand the depth of their impact on both the material and the spiritual lives of the people affected."   

Carlos Spottorno

Freiburg, Germany, 03/2012 • Both architects, Amadou and Bettina Touré share a passion for culture; but they are at odds over the current stage of living with MS. Three years ago, Amadou’s neurologist recommended chemotherapy in order to halt, at least temporarily, further loss of function. Amadou believes he can manage MS through a positive attitude and a healthy lifestyle. Bettina worries that he will soon lose the ability to walk altogether, which would have a dramatic impact on their lives – together...
Freiburg, Germany, 03/2012 • While Amadou Touré uses one device for the movement underway, his wife Bettina is often burdened with an alternative. The couple always travels with three options: folding canes, the walker and a collapsible wheelchair (in the trunk of the car). Credit: Carlos SPOTTORNO
Freiburg, Germany, 03/2012 • A sturdy, wooden railing – handmade in the 1920s – provides support as Amadou Touré slowly goes up to his room. An architect by training, he can’t bear the thought of removing such a beautiful detail to install an electric lift. But the house he and Bettina have shared for many years has four floors, and stairs are increasingly difficult for him to manage. They speak from time to time about alternatives, including moving to a one-level house or flat. Once he reaches the bottom,
Freiburg, Germany, 03/2012 • Amadou Touré returns home after buying take-away food from a nearby restaurant. With a dysfunctional left leg, the combination of distance and fatigue make the trip dangerous. The nearest red light is too far for him to walk. The walker provides support, but doesn’t help with speed. If traffic is heavy, Amadou might have to wait 10 minutes for a long enough break between cars to accommodate his slow pace. Credit: Carlos SPOTTORNO
Freiburg, Germany, 03/2012 • Knowing his physical limits, Amadou Touré prepares for every eventuality each time he and Bettina go out. Two canes suffice from getting from the house to the car. He might need a walker to get across a large parking lot or help with buying groceries. Wanting to fully enjoy a visit to the museum, he’ll get Bettina to pull the wheelchair out of the trunk. Amadou uses various devices to move, depending on how long and what distance he has to face. The document on the dashboard, wh
Freiburg, Germany, 03/2012 •Amadou Touré gets cortisone every 3 months. While Amadou Touré reported symptoms typical of MS – loss of balance, poor concentration, a tingling sensation when he bent his neck and poor eyesight – he didn’t “fit” the profile of an MS patient. Most people are diagnosed between the ages of 25 and 40; he was already 43. Moreover, he was half Malian and the disease is very rare among Africans. Credit: Carlos SPOTTORNO
Freiburg, Germany, 03/2012 • Each visit to the neurologist is a time of reflection for Amadou Touré. For three years, they have been locked in a debate over using Mixantrone, a form of chemotherapy, to control his MS. Because it is an aggressive therapy with potentially serious side effects – including heart attack – it is a short-term, last-resort option. Amadou does not want to take it too early; his neurologist does not want him to wait until it is too late. Credit: Carlos SPOTTORNO
Freiburg, Germany, 03/2012 • Amadou and Bettina Touré visit the city museum, still sharing their passion for culture. But public places bring out a phobia for Amadou, “When I go to a museum, the first thing I ask is: ‘Where are the toilets?’ Not to go, but to know – just in case. I know all the toilets in central Freiburg: it’s just part of managing the disease.” Pelvic floor exercises he has learned in physiotherapy provide assurance that he can control his bladder or bowel for 5 to 10 minutes ...
Freiburg, Germany, 03/2012 • More than once, Amadou and Bettina Touré have laid their cards on the table regarding his current condition. Bettina sees a steady decline and sides with doctors who recommend chemotherapy to try to shock his immune system. Amadou believes he is slowly getting better through healthy living and visualisation that will establish new neural networks to restore lost function. “She makes her case. I accept it,” says Amadou. “But in the end, it’s my illness, my body and my decision.”
Freiburg, Germany, 03/2012 • To help maintain the progress he made during 5 weeks of physical therapy at the Quellenhof Centre, Amadou Touré receives physiotherapy at least twice per week. The sessions are covered by his health insurance policy. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Ergotherapist Ingrid Weissinger leads Ernst Friedrich Bieringer through a series of exercises to improve his mobility. The Centre’s multi-disciplinary approach is driven by the needs and desires of the PwMS. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Thara Gerda leads Ernst Friederich Bieringer through a speech therapy session, which focuses not only on annunciation of words but also on the fundamentals of exercising to build strength in the diaphragm to allow better breath support. When it affects muscles in the throat, MS can lead to speech problems and create difficulty swallowing. Between 25% and 40% of PwMS experience these symptoms ...
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Ernst Friederich Bieringer exercises on a static bicycle. His feet are attached to the pedals; otherwise his legs would not be able to follow the bicycle’s automated movement. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Nurse Krause Sergei uses a lifting device to transfer Ernst Friederich Bieringer into bed. Whether in a hospital setting or at home, assistive devices serve to protect the health and well-being of both PwMS and their carers. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Occupational therapy at the Quellenhof Centre focuses on helping PwMS manipulate different devices they need to use at home, in the workplace or in public places. In many cases, reduced mobility means finding new ways to perform common tasks. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Silke Volz undergoes tests at the Quellenhof Centre to assess whether recent symptoms such numb fingers and a temporary paralysis of her left side are the first signs of MS. The session is a reversal of roles for Silke; she works at the Centre as an MS nurse and is being guided through the tests. Unlike most people at this stage, Silke has a very clear concept of what the disease is all about. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Bianca Schroeder, a physical therapist, works with PwMS at the Quellenhof Centre’s swimming pool. Many PwMS enjoy being in the water as buoyancy makes their limbs weightless and easier to move. But aquatherapy also capitalises on the resistance factor of water to support strength and balance training. Water temperature is carefully controlled as some PwMS become weak if overheated; others experience worse tremors if the water is too cold.
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Martina Reeh-Wege joins a group session for water therapy at the Quellenhof Centre. Many PwMS enjoy being in the water as buoyancy makes their limbs weightless and easier to move. But aquatherapy also capitalises on the resistance factor of water to support strength and balance training. Water temperature is carefully controlled as some PwMS become weak if overheated; others experience worse tremors if the water is too cold. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Martina Reeh-Wege joins a group session for water therapy at the Quellenhof Centre. Many PwMS enjoy being in the water as buoyancy makes their limbs weightless and easier to move. But aquatherapy also capitalises on the resistance factor of water to support strength and balance training. Water temperature is carefully controlled as some PwMS become weak if overheated; others experience worse tremors if the water is too cold. Credit: Carlos SPOTTORNO
Quellenhof Centre, Bad Wildbad, Germany, 12/2011 • Barbara Klassing reads while using a stationary bicycle. Rehabilitation programmes at the Centre are designed to help patients achieve their personal goals for adapting to disease progression or regaining lost functions. Group lectures and individual counselling focus on coping skills. Barbara hopes to stay well enough that she will not to need to return again. Credit: Carlos SPOTTORNO
Photographer: 
Carlos Spottorno

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