For the Rothmans, fighting Michael’s neuropathy is a team effort.
By Olga Rukovets
Nearly two years ago, 17-year-old Michael Rothman from Stamford, CT, started having difficulty walking. Then came the weakness in his hands—trouble buttoning shirts, opening water bottles, and bending his pinky. His primary care physician sent him to a hand surgeon, who in turn referred him to a neurologist. Michael was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), a rare disorder of the peripheral nerves (those outside the brain and spinal cord, or central nervous system) characterized by steadily increasing weakness of the legs and arms. The Columbia Neuropathy Research Center (columbianeuropathy.org) in New York City, a Neuropathy Association-designated Center of Excellence, confirmed the diagnosis.
“My initial reaction? I think ‘confused’ is probably the best word for it,” Michael says. “It took me a couple of weeks to really understand what I had. I remember the day after I came home from the neurologist, I went back to my [primary care physician] to discuss what it all meant.”
“Our immune systems are designed to protect us from harmful agents such as bacteria and viruses,” notes Vera Bril, M.D., professor of neurology at the University of Toronto and member of the American Academy of Neurology (AAN). “But sometimes the immune system gets confused and starts attacking a person’s tissues, such as the nerves. That’s what happens in CIDP. The patient develops weak muscles in the legs and arms and numbness or loss of feeling in the feet and hands,” Dr. Bril says.
This loss of nerve activity leads to symptoms such as difficulty walking or running, unsteadiness, falls, and clumsiness. Although there is currently no cure for CIDP, treatments are available to slow its progression. Corticosteroids such as prednisone can be used on their own or in conjunction with immunosuppressant drugs to slow the progression of CIDP. Plasmapheresis (plasma exchange) and intravenous immunoglobulin therapy are also effective in slowing down the disease. Early treatment in particular has been shown to prevent nerve damage, although some people with CIDP will still have residual numbness or weakness even with early treatment, according to the National Institute of Neurological Disorders and Stroke (NINDS).
In addition, physical therapy can help increase mobility and muscle strength and reduce the shrinkage of muscles and tendons and distortions of the joints that can occur with CIDP, according to NINDS.
In the first few months after his diagnosis, Michael had to receive five-day intravenous infusions of immunoglobulin (antibodies in the blood) every two weeks. This was a difficult adjustment, he admits. (The infusion is generally prepared from human plasma, which has been pooled from 3,000 to 10,000 donors.)
Now, Michael is down to two infusion days every three weeks. “He’s 17, a junior in high school, and he is very much like every other kid,” says Rachel, his older sister. “Michael just has to deal with the infusions a couple of times a month.” From the start, Michael has received his infusions in a home setting rather than the hospital. On the weekends, when he travels from Stamford into New York City for treatment, the family has a kind of celebration. “We’ll order enough Chinese food for an army and invite people over to hang out,” Rachel says.
Rising to the Occasion
When Gayle and Howard Rothman decided they wanted to help their son and other individuals with CIDP, they didn’t know where to turn. Then they learned that two doctors from the Columbia Neuropathy Research Center (CNRC), where their son receives treatment—AAN Fellow Louis Weimer, M.D., and AAN Member Thomas Brannagan, M.D.—were doing research on CIDP and needed funding. The Rothmans created the Michael D. Rothman CIDP Research Fund (michaelcidp.com) to benefit CNRC research, aimed at developing and testing several promising new therapies including a pilot study of biological markers (specific physical traits used to measure or indicate the effects or progress of a disease or condition) in CIDP.
In early 2012—after participating in several nonprofit races for other organizations—Rachel and her friends started running under the name “Team Mike,” wearing T-shirts and raising awareness and money for CIDP. They had no fundraising goal; they participated just to get the word out, she says. “But then, my brother came to me and said, ‘We should have our own race,’” Rachel recalls.
Enlisting the help of the CNRC and The Neuropathy Association, the Rothmans have now organized a 5k run/walk to benefit CIDP research at Columbia. (Dr. Brannagan introduced the Rothmans to the Neuropathy Association, where he serves as a medical advisor.) Run or Walk with Mike 5K will take place at High Ridge Park in Stamford, CT, on May 20, 2012. National Neuropathy Awareness Week, an annual health observance organized by The Neuropathy Association (neuropathy.org), runs from May 14 through 18, 2012.
The event will be family-friendly, Rachel says, concluding with a post-race festival that includes a barbecue, free massages for participants, smoothies, and other fun extras. Representatives from Columbia University and The Neuropathy Association will be onsite to provide information on CIDP. Free transportation will be provided to and from Grand Central Station in New York City.
One hundred percent of the money raised will go directly into the Michael D. Rothman CIDP Research Fund.
A Family of Advocates
“As much as Michael is going through this, I think we’re all going through it,” Rachel says. Planning the run/walk has been a full family affair as well: Gayle has been putting posters up all around Stamford and garnering support from sponsors and participants, and Howard has been making phone calls and sending e-mails to promote the event. Hillary, Rothman’s other sister, has also been involved in the planning and outreach efforts all the way from Australia; she will be returning in time to join in on all of the race excitement.
“We’re all working toward eventually finding a cure or treatments that might make the lives of people who deal with CIDP easier,” Rachel says.
“Michael is an inspiration to all of us who want—and are working towards—a better future for the millions of people living with neuropathy,” adds Natacha Pires, director of medical and public affairs at The Neuropathy Association.
Rothman has not let his CIDP keep him from doing the things he wants to do. Recently, he and his nurse attended a Rangers playoff hockey game while he was receiving his infusion through an intravenous drip.
A persistent optimist, Rothman offers this advice to others recently diagnosed with neurologic disorders: “The first couple of months are tough. But you need to realize that this disease is going to be a part of your life for a while, so you have two ways of looking at it: either you’re going to be depressed, or you’re going to be positive and try to make a difference—and that’s what I have tried to do.” For more information on Run or Walk with Mike 5K, visit: michaelcidp.com/mike5K.html.