21 women help each other learn to live with multiple sclerosis
Wednesday, February 17, 1999
BY SUE MacDONALD
The Cincinnati Enquirer
Judy Lynn Nichols thought she knew everything AP Wire about multiple sclerosis (MS), the disease she calls her “monster” companion. After all, the Westwood woman has lived with it for more than 25 years.
But two years ago, Mrs. Nichols logged onto a Jobs “Better Health” site about MS on America Online and found herself intrigued by General a message network called “mental flutters.”
She began corresponding online with more than 20 other women whose neurological, physical and emotional experiences with MS were simultaneously TV Listings very similar yet vastly different from her own. They started their own round-robin e-mail group, the “Froup,” or the Flutterbuds' Group.
Mrs. Nichols, a writer whose newspaper career was cut short by MS, found the online information-sharing so helpful that she's published her first book, Women Living with Multiple Sclerosis Borgman (Hunter House; $13.95) based on those shared e-mails.
“Flutter” is a term used by people with MS Feedback to explain the strange mental lapses they experience - putting newspapers in the dishwasher, losing things, forgetting the names of close friends, Phone #'s dialing phone numbers on the calculator or punching Search the TV remote to make the dog lie down. Flutters they are, or as the Froupers call them, “cognitive flatulence.”
The book's content revolves around verbatim e-mail messages sent round-robin by Froup members about the real-life, intense, personal, spiritual, even mundane things and feelings that accompany MS.
What makes the book different from other medical books is that many of these topics rarely are discussed in the doctor's office, usually because of embarrassment, hesitancy and patients' perceptions that some doctors are poor listeners who discount, undermine and try to explain away what their patients say and feel.
“It's written almost entirely from the perspective of the patient,” says Mrs. Nichols, 50. “We get so much medical input about the disease, but the main thing we need is information that helps us learn how to live with this disease. We know we aren't going to get that information from our doctors, and we had to do it ourselves.”
Mrs. Nichols' physician, Cincinnati neurologist Dr. Robert M. Reed, admitted the book opened his eyes: “I have been caring for people with multiple sclerosis for 25 years, but until reading this book, I never fully understood the depth of suffering the patient with MS endures,” he wrote in the foreword. “... Doctors and others in the medical field need to learn how we can do a better job for out Patients.”
The Froup women range in age from 26-64. They live all over the United States and include an East Indian woman, several Hispanic women and a woman with American Indian ancestry. Last March, 14 of the 20 Froup members met in Atlanta.
There's still a lot of living I plan to do, but sometimes I get so angry that, just when I thought I had the hang of living, I had to start all over with this MeSs. Just when I think I've compensated for the latest attack, a new one starts and it's off to the races again. I know I don't have to explain this to any of you; it just feels good to lose the little Mary Sunshine mask and let it all hang out for a while. Thanks for listening. I feel much better now.
About a year into the e-mail exchanges, Mrs. Nichols realized the potential for a book from the point of view of women with MS (women are twice as likely as men to get the disease).
“I know MS is so different from one person to another, so I finally asked them all, "Would you like to get in on this book with me?' ” Mrs. Nichols says. “After that, the book just kind of wrote itself. But these women have just opened up my eyes all around.”
Mrs. Nichols was diagnosed with MS in 1975. She was 25 and pregnant
with her second daughter. Fortunately, her symptoms were minor enough while
the children were young that she was able to function fairly normally,
working as a secretary at St. Pius Catholic Church from 1977 to 1985 and
then as an editorial assistant at the Catholic Telegraph in 1986 until
the disease forced her to quit in
She grew up in Northside, attended Lourdes College in Sylvania, Ohio, from 1963-66, then returned to Cincinnati.
“If it weren't for MS, I consider myself basically healthy,” says Mrs. Nichols, who continues to write, refinish furniture, renovate her house and sew.
Around the house, she uses a cane. On short walks, she uses two canes, but for longer trips outside the house she uses a wheelchair.
Being online with the other women, Mrs. Nichols says, has cemented friendships and opened the honesty floodgates quickly. Unencumbered by physical appearances, expectations or prejudices, the women openly shared intimate details of their lives, successes and setbacks, treatment ideas and research tips.
In the book, they talk about bladder problems and the difficulties maneuvering wheelchairs in public places. They discuss the challenges of finding comfortable clothes, putting on earrings and dealing with weird symptoms no one else understands - auras, dizziness, crunching noise or radio-like chatter inside their heads, clumsiness, muscle spasms, difficulty swallowing.
They talk about things they miss: driving, balancing on a bicycle, hiking, wearing shoes with heels, picking up small children, climbing stairs, lifting cooking-pot lids without dropping them, typing, feeling the soft fur of a puppy.
Who was it that said, “Don't sweat the small stuff?” They never had the MonSter visit them! None of it's small stuff!
An entire chapter in the book is devoted to sex - how frustrating it can be when sensations can be numb some days and skin can be hypersensitive to touch other days, when desire may be high but the physical body won't comply. They talk openly about faking orgasms for their partners, dealing with bladder and bowel problems during sex, self-stimulation and pacing lovemaking so it can be enjoyable without being a burden, embarrassment or disappointment.
It's hard to me to get psyched for sex. I mean, all my movements are clumsy and awkward - and even when I'm able to move, I can't trust that my efforts at moving will get me where I want to be. I think, “Who wants to make love with a klutz?”
“One of the things we talk about a lot is that so many things about
MS are hidden,” Mrs. Nichols says. “The signs, the symptoms, the
obstacles aren't always obvious. Everyone says to you, "But you look so good.' If people don't know someone or don't live with someone who has MS, they might not understand.”
Mrs. Nichols hopes the book will help other people with MS learn they're
not alone - that their symptoms are not weird or unusual. She encourages
people with MS - and their family members and
doctors - to learn as much as possible about the disease.
“I was always the type of person that if the doctor said it was the law, I would bow down and say, "Thank you, sir, for whatever you've given me,' even if that was nothing,” she says. “But people have to be persistent, they have to advocate for themselves, and they have to let their doctors know that we know they are not gods. And don't take 30 years to find that out.”
She credits her husband of 29 years, Ron, with tremendous amounts of support, help and love over the years, and hopes people unfamiliar with MS understand that even though the disease turns a normal life upside down, life continues.
“I still miss so many things so much, like walking,” she says. “I would just love to walk out that door with the dogs without worrying about where I'm going or when I'm coming home or how tired I'll get. I wish I could depend on my bladder to work when I want it to.
“I miss working, but I don't even think about that anymore. I just wrote a book - why do I have to go to an office?” she says.
“I have such a full life that I can't use up the energy being angry.”
Judy Lynn Nichols of Westwood wrote her book, Women Living with Multiple Sclerosis, with the help of information shared online.
• Multiple sclerosis is a chronic disease that affects the central nervous
system. Its cause remains unknown, but symptoms are related to the destruction of the protective
covering of the body's nerves.
• Each person's disease varies in degree and the type of symptoms. Some people may have stable MS, while others' symptoms may constantly worsen and improve in unpredictable cycles. In some, symptoms get progressively worse quickly without periods of relative stability.
• MS is twice as common in women as in men. About 250,000-300,000 people in the United States have MS. It's usually diagnosed from ages 20-40.
• MS is more common in northern climates than it is near the equator, and its incidence in the population increases with distance from the equator.
• Symptoms can include numbness, tingling or a “pins-and-needles” sensation, vision problems, tremors, muscle weakness, uncoordinated movements, slurred speech, weakness, breathing/swallowing problems and impaired thinking, memory and reasoning. In severe stages, it causes paralysis.
• Most treatments try to relieve symptoms and their severity or frequency, but no cure has been found.
INFORMATION • National Multiple Sclerosis Society: http://www.nmss.org
• Cincinnati chapter of the NMSS, 769-4400.
• Women Living with Multiple Sclerosis by Cincinnatian Judy Lynn Nichols and her online group of “MS sisters” is $13.95 from Hunter House Publishers, available at bookstores or from the publisher at (800) 266-5592. Proceeds from the book will be donated on a six-month rotating basis to organizations that provide services to people with MS in the cities where Mrs. Nichols' co-authors live.
• Members of Judy Nichols' “Froup” meet on America Online in a multiple
sclerosis message board area under “better health.” On most servers, Internet
users can type “multiple sclerosis” in the search box and follow prompts
to similar message boards and chat rooms.
Copyright 1998 The Cincinnati Enquirer, a Gannett Co. Inc. newspaper.