The nurses threw him out of the room: Joyful living with Multiple Sclerosis

Debbie Purdy married well, to a joyful Cuban jazz violinist named Omar Puente. It was 1995 – the same time she was diagnosed with multiple sclerosis. She has primary progressive, rather than relaxing-remitting, MS, meaning that her condition is inexorably worsening.

They have adjusted together to the changes in her body. If she had not been in a wheelchair, if her hands had not been shaking, if she had not been speaking matter-of-factly about things like loss of bladder control, the painful swelling in her feet and how hard it was for her to brush her teeth, it would have been difficult to believe that she was ill at all. She is that joyful.

Not long ago, a team of nurses came in to install the hoist that helps her in and out of bed. Her husband Omar “was laughing,” she said. “The nurses threw him out of the room when we were trying it out, because he was acting like it was a sex toy.”

Omar says, “I’ve seen the whole process, from when she was a very strong woman with a wonderful big bottom and strong legs, to using a walking stick to using a wheelchair. She is still articulate and enthusiastic and full of life.”

Advice: Live with humor, as joyously as you can with the time you have, as Debbie and Omar do.

Read a story of a very different way a person is living fully with multiple sclerosis .

Thanks to Sarah Lyall for the source article in today’s NY Times.