A diagnosis of multiple sclerosis affects far more than just the patient; the entire family has to adjust to this disease in their loved one.
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.
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