For the past 41 years, author and journalist Richard M. Cohen has lived with multiple sclerosis (MS). He talked with Dr. Manny Alvarez, Senior Managing Health Editor of FoxNews.com, about living with this chronic condition.
According to the National Multiple Sclerosis Society, more than 2.3 million people worldwide have MS, an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. The most common symptoms are overwhelming fatigue, visual disturbances, altered sensation and difficulties with mobility.
Cohen, the husband of Meredith Vieira, uses his blog, Journey Man, to help others deal with the coping issues of MS.
“I don't explain the medicine of the illness,” he said. “Nearly half the American population is living with chronic illnesses, they're all different, they attack different parts of the body. But the coping issues that go with them, self-esteem, difficulties socially, employment, all of those issues are remarkably similar.”
Journey Man allows MS sufferers to build a community online to speak to both Cohen and one another— which Cohen has found to be the most gratifying aspect of the project.
Currently, Cohen is part of a phase 1 clinical trial— the first of its kind in New York— using stem cell therapy. Cohen suffers from the secondary-progressive form of the disease. There are four disease courses for MS: relapsing-remitting, primary-progressive, secondary-progressive, and progressive-relapsing. However, available treatments are only for relapsing-remitting MS.
“I gave up on going to the doctor with expectations years ago. It was really only when I got into the clinical trial,” Cohen said. “Stem cell therapy is being used for a number of chronic illnesses and I think MS is one of those with great possibilities...but we are at the starting line.”
When their three children were young, Cohen and Vieira decided to be open about the disease — which they had also done when he was twice-diagnosed with cancer previously.
“You never know when is the right time and what exactly to say. But when the questions start coming, you’ve gotta give them answers,” he said. “But you know, our feeling is, and I really believe this, that if you want to raise happy, secure kids talk to them, tell them. And by the way they're the smartest ones in the house and they're going to figure it out anyway.”
Cohen, who had a 21-year career as a producer in network television news, noted that it’s important for MS sufferers to protect themselves in the workplace. According to the Americans with Disabilities Act, you do not owe it to your employer to disclose your condition.
When Cohen applied to work for Walter Cronkite at CBS Evening News in 1979, he faked his way through the company physical, left information blank and didn’t tell them about his MS. Though he was scared they’d find out, he didn’t tell them until a year later.
“[Cronkite’s] executive producer… who’s a friend of mine, said to me not that long ago, out of the blue, ‘You know you did the right thing. If I had known you had MS, I wouldn’t have hired you,’” Cohen said.
Unfortunately, the perception of people with MS is that they’re “damaged goods” who aren’t going to be productive or dependable, which, in a hard economy, makes the situation even worse.
“People with chronic illnesses fight two battles at the same time: One is the disease and one is the perception of the disease,” Cohen said.
Understanding one’s potential limitations, deciding what information is and isn’t appropriate to share, and being clear on what you can value and deliver to an employer are key to being a valued part of any team. While MS creates limitations, staying informed and keeping open communication with your family and healthcare team can help you— and those around you— cope.
“MS is all about things you can't do anymore. Things you have to give up,” Cohen said. “And I just think you have to fight on one hand and be realistic on the other hand.”