Managing multiple sclerosis through a relationship of trust and lots of negotiations

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    What a lot of us really want from our physicians is care – care that goes beyond managing illness or symptoms.

    Maureen O’Brien, a nurse who lives in Haddon Heights New Jersey, found that kind of relationship during a really difficult time in her life.

    In 2000, she was diagnosed with Multiple Sclerosis. Shortly after, she had her first appointment with Thomas Leist, who heads the Comprehensive Multiple Sclerosis Center at Thomas Jefferson University Hospital in Philadelphia.

    In the years since Maureen was first diagnosed, the two have learned to negotiate what works best for her care.

    At first, I thought I had a sciatic nerve problem, I was having a lot of pain, and trouble brushing my hair, I tripped several times, and then I had a really bad fall,” recalled O’Brien of the time period before her diagnosis.

    She made a doctor’s appointment, and went for an MRI. A few days later, she received devastating news. “I had multiple sclerosis and I was shocked, that was the last thing I expected.”

    She was referred to Dr. Leist, and liked him right away. “He talked to me, as a person, not as a disease. The first thing he said to me, and I’ll never forget this, he said ‘multiple sclerosis will always be in your living room, but it shouldn’t be in the center of your living room.'”

    She said she knew Thomas Leist was the right doctor for her right then.

    “I do think that MS affects the whole organism of a person, it also affects the family, their care network, and so it is in this context that one has to discuss the disease,” said Leist.

    Over the years, O’Brien has learned to manage her symptoms, and her energy reserves. She still works, but has to take breaks to sit down. She has to think about how much walking she can manage. And Leist always emphasizes the importance of listening to her body.

    “You only have so much energy for the day,” he said. And somewhere along the path we have to discuss how you could take advantage of your loved ones to help you out and to compliment you in areas where you might have to step back,” he added.

    O’Brien admitted that it’s very hard for her to ask for help. “As a nurse I take care of people and to have somebody take care of me, that’s really difficult. I sometimes push the envelope but I always have a voice in my care, it’s a conversation,” said O’Brien.

    They also both have a sense of humor about what they have to accomplish.

    “If I had to get steroids, which I have taken over the years, I have sometimes said ‘I don’t need them,’ and he said ‘okay, so I’ll order them,’ and we laugh about it because we have that kind of relationship. I know I have to have them.”

    “MS is a disease that doesn’t want to negotiate,” said Leist. “So there needs to be a place for conversation, and in the current healthcare environment to have the time to have conversations is a luxury.”

    Leist believes that taking the time to talk things through reduces healthcare costs overall, because patients adhere better to their treatments, and there is more buy-in. “So, conversations have to happen, you have to make the time.”

    This was surprising for O’Brien. “I was shocked, I work in healthcare, and you don’t see it that often. It makes you want to do well and continue to take care of yourself, because of your physician.”

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