There's something about multiple sclerosis, or MS, that disrupts families at every level. "I've often talked about it as the uninvited guest," says Rosalind Kalb, vice president for health care information and resources at the National Multiple Sclerosis Society. "This disease shows up in your household, moves in, spreads its junk all over and doesn't leave. It means everyone has to develop a relationship with this intruder."
MS is a progressive disease of the central nervous system that affects the brain, spinal cord and optic nerves. Multiple sclerosis causes multiple symptoms -- from blurred vision to blindness; mobility issues ranging from poor balance and coordination to paralysis; slurred speech, tremors and severe fatigue; and problems with memory and concentration.
There's no cure for MS, and it's unpredictable. People with relapsing/remitting MS, the most common form, experience periodic flare-ups that come and go. About two-thirds of cases occur in women. First symptoms -- often visual -- most commonly happen between ages 20 and 40, according to the Centers for Disease Control and Prevention, although children and older adults can be diagnosed, too.
When you put those risk factors together, "Women of childbearing age, who are starting careers and families, are the folks who seem to be most often at risk," says Kalb, a clinical psychologist and the author of "Multiple Sclerosis For Dummies."
Shifting Family Shoulders
Bryan Rodriguez, 20, watched his mother, an avid photographer, lose her eyesight to MS -- but he also saw her get it back. It's been a tough few years for the tight-knit family, but somehow they've powered through.
It was February 2013 when Rodriguez's mother, LuzSelenia Loeb, called him into the family minivan to break the news of her diagnosis in private. In an essay for the MS Society, Bryan described that heartbreaking moment: "She told me that I had to be strong for my little brother and sister, but with only five words, all of my strength, power, will and dignity I had built up over the past 17 years of my life collapsed," he wrote. "Those five words were, 'If anything happens to me ....'"
Loeb's greatest wish was for all her children to get through college, and she asked Bryan to take on that responsibility if she couldn't. The then-high school junior cried at first -- then he shouldered his new role. He drove his mother to all her medical appointments and helped his brother Joshua and sister Bianca get to school each day. Their grandmother and aunts have pitched in, preparing meals for entire family.
Each family member handles emotions around MS differently. Joshua tends to internalize, Bryan says. When he found out, "he didn't tend to discuss much with anyone. I know he was very hurt." Bianca, now 12, "can see, 'Oh, Mom's fatigued; she's not feeling well today,'" Bryan says. But she's too young to understand the condition's implications.
Motivated by the educational goal, Bryan stayed on top of his own grades to stay eligible for college scholarships. "I was missing class, but I was able to make up all the work, and the teachers were very much accommodating to the circumstances," he says. "They genuinely cared about me."
Bryan is now a full-scholarship student at the University of Pennsylvania. At 18, Joshua is carrying the baton at home. "He's been taking on a lot of the responsibility recently -- transporting my sister to and from school, taking my mom to eye appointments -- the things I used to do when I was at home," Bryan says.
Loeb regained her vision, to the joy of the entire family. But multiple sclerosis keeps taking a toll. After a fall in the shower a couple months ago, she's been in and out of the hospital with back pain and numbness in her arms and legs, for which steroids provide sporadic relief. Fatigue remains an issue.
She just completed a short inpatient stay for physical rehabilitation. "They taught her to be more independent and build up her strength so she could function more on her own, and to create a more permanent management of her MS and her symptoms," Rodriguez says. "So she's been feeling much better." Her medication regimen includes Copaxone (glatiramer acetate), an injectable drug to block damage to nerve cells.
When MS Moves In
When people first find out they have MS, "typically you see a lot of shock and disbelief," Kalb says. Even as they're processing the information, medical decisions must be made. "The most important thing is to start treatment early because that's the best handle we have on managing MS," Kalb says. "The family needs to be supportive of that decision to get going with treatment."
Parental approaches to sharing information with children range from low-key and private to open and inclusive. "[The condition] doesn't assume reality for young kids until they see their parents are not able to do the things they used to do," Kalb says. "They're in bed or in the hospital, or when life in the family has changed."
Being open, to the degree kids can handle it, can help parents address their children's nebulous fears. "Kids have radar, and they pick up what the atmosphere is in households," Kalb says. "Long before there are any visible symptoms of MS, they may know something's up and get worried." Worried kids fill the void with imagination rather than facts, she says, and "sometimes what they imagine is far worse than the reality."
Parents do kids a favor by giving them age-appropriate information in words they can understand, Kalb says. "Even with pretty young kids, we recommend saying, 'So Mom or Dad isn't feeling well; that they have a disease, and this its name. And it can make Mom or Dad feel very, very tired, or it can make things look blurry.'"
For kids starting at about age 5, Kalb recommends For Kids: Keep S'myelin (named for the myelin sheath that protects nerve cells) -- as a resource. It offers games, activities, cartoons and other fun ways to help kids understand what's going on and fill in the blanks.
MS often intrudes in another area: the couple's bedroom. Many factors play into problems with intimacy, Kalb says, starting with barriers to talking and communication. "MS also affects sexual function in men and women to varying degrees," she adds. "The direct effects of neurological damage can make men and women less interested. Literally, libido can be affected. So what used to be exciting isn't much of anything."
Sensory changes, fear of pain, muscle stiffness and discomfort, and even issues with bladder control can interfere with sexual performance and desire, Kalb says, not to mention fatigue: "If you're so tired that you can barely put one foot in front of the other, sex isn't high on the list."
These challenges make it important for couples to learn how MS can affect sexual function, Kalb says, to open up communication and help partners avoid misunderstandings.
Communication, Knowledge and Support
Debbie Petrina, 60, of Glendale, Arizona, has lived with MS for more than 30 years. As an MS peer counselor, blogger and author, she's familiar with the perils of navigating family relationships through the long and winding disease course.
Every person with MS is different, Petrina says, with some needing a great deal of partner involvement and others who don't want too much hovering. "It comes down to communication," she says. "Because some people need the support. They need the comfort. When you're first diagnosed, the biggest thing of all is fear." It's a constant adjustment, she adds, when you don't know how long relapses will be, or how bad. Sometimes, she says, you do need help -- but spouses aren't mind readers, so you have to speak up.
"My husband will never fully understand what it's like to have MS," Petrina says. "I could say, 'Strap 20-pound weights on your ankles, and wear them all day. Or sit in a wheelchair all day.' But he's not in my shoes, and I'm not in his shoes." She says caregivers should find other caregivers for additional support, because they'll better understand what each is going through.
For the person with MS, "If you can't find support in your nuclear family, you find it someplace else, [like] through a good friend," Petrina says. Peer-to-peer support is "excellent," she adds. Her website links to a variety of resources she recommends for reliable information.