By the time 6:00 rolls around, Tim Gannon, 39, is exhausted. Not only has the Cleveland resident worked all day at his job as a processing engineer, he’s also picked up his two young daughters from school and day care. “The fatigue is the worst when I first get home,” Gannon says. “I just fall asleep on the couch.”
Gannon’s fatigue is more complicated than garden-variety working parent weariness; it’s a side effect of multiple sclerosis, an incurable autoimmune disease. “When you have a chronic illness that saps your energy, you’re parenting with a disadvantage,” says Dr. Lauren Krupp, a neurologist and director of the NYU Langone Multiple Sclerosis Comprehensive Care Center.
Fatigue is one of many problems that can result from MS, all consequences of the body mistakenly attacking the covering of the nerves (called myelin) as well as the nerve fibers in the spinal cord, brain and optic nerves. The damage shorts out communication along the nerves, often leading to physical, cognitive and emotional challenges.
Physical Impacts on Parenting
An MS patient might experience muscle weakness or rigidity, coordination problems, extreme fatigue, difficulty using arms or hands, trouble walking or standing, bladder or bowel dysfunction, neuropathy (burning or tingling arms, hands or feet), blurred or double vision, swallowing problems or many other physical issues. MS patients also tend to overheat easily, which temporarily makes MS symptoms worse.
Those side effects can make every aspect of child care difficult, whether it’s holding and diapering a baby or feeding, bathing and dressing a young child. Parents who have MS may struggle with getting kids ready for school, driving them where they need to go or putting dinner on the table every night.
Little things that healthy parents take for granted can become huge tasks for parents with MS. They may find themselves too fatigued to play with children, suddenly overheated by taking a child to the park or too weak to take part in their children’s extracurricular activities. “It can be hard to be available for a baseball or soccer game when you’re in a wheelchair and have trouble getting into the ballpark or when you have heat intolerance so severe that you get weak 30 minutes into a ballgame,” says Dr. Mary Alissa Willis, a neurologist at the Mellen Center for Multiple Sclerosis at Cleveland Clinic.
“The kids say they want to do something, and you feel bad if you don’t — so you do it, even though you don’t feel like you can,” Gannon says. “But I’ve been lucky. I have fatigue, but I don’t have any other physical restrictions.”
[See: 10 Concerns Parents Have About Their Kids’ Health.]
Cognitive Impacts on Parenting
Brain lesions that occur with MS which affect cognition can result in slower thinking, memory loss and difficulty multitasking (pretty much a parenting requirement when raising little children). That can make it hard to organize a morning or nighttime routine for children, plan meals or keep up with school events and play dates.
Krupp points out that older children may become frustrated when parents with MS can’t help with homework. “I’ve seen situations when parents don’t have the multitasking, cognitive speed and memory skills they used to,” Krupp says. “They want to help with homework, but they can’t.”
It’s also awkward and embarrassing, Willis explains, when your kids notice that you can’t remember things — like the name of the family pet — or you repeat yourself often. “These challenges are hard for children to understand,” she says.
How Mood Affects Parenting
MS often leads to disorders that affect mood. “A study based on a community sample showed that about 20 percent of people with MS have depression, which is higher than the general population,” Krupp says. That lasting feeling of extreme sadness, apathy or hopelessness may cause other issues, such as insomnia and less patience with others, that can make parenting more difficult.
“I hate to say it, but you get short with the little ones. You get a temper. So you have to take a minute to just let kids be kids,” Gannon says.
General anxiety disorder, which involves excessive fear, worry or nervousness, is also common in MS and often makes parents feel easily overwhelmed. Adding to problem: the fear that children will develop MS. “Most likely, your kids will not get MS,” Krupp says. She points out that genes and potential MS triggers are different for everyone, and having MS doesn’t mean your kids will get it.
[See: Am I Just Sad — or Actually Depressed?]
Build a Support Network
While MS makes parenting harder, it doesn’t make it impossible. However, Willis says it does require teamwork and creativity to find solutions to challenges that arise.
She and Krupp both advise building a team that includes:
— Your spouse or partner. “Make sure you explain your limitations, what you can do and what may not be possible anymore,” Krupp suggests.
— Your health care team. Most neurologists, nurses and physician assistants deal with MS-related parenting questions every day. In addition, get social workers and psychologists involved; and short-term counseling or support groups can also be helpful, Krupp says.
— Your kids. “Children have a capacity for understanding why a mom or dad with MS can’t participate in an activity,” Willis says. “But if you don’t have a discussion, children will fill in the gaps and make false assumptions.”
— Nonprofit MS groups that offer resources, like the National Multiple Sclerosis Society.
Other Tips
Parenting with MS also requires a good game plan. First on the list: Take care of yourself. Address the physical, cognitive and mood disorders or symptoms that are getting in the way of daily functioning.
Then, work around your MS challenges to get the same jobs done. Here are some ways you can do that:
— Plan ahead. “Do an activity at a time you know your energy is better,” Willis suggests. That may mean, for example, taking your kids to school in the morning and having someone else pick them up in the afternoon when walking is worse or fatigue is more severe.
— Prioritize. Decide how you’ll spend your limited energy on a given day. Determine which activities are most important so you’re able to do those things.
— Set goals for activities. Avoid a situation where you’ll get overtired. Agree in advance that maybe you’ll do something for an hour and then take a break.
— Use mobility devices. You may not need an electric scooter or wheelchair at home, but you may find one helpful to get to the middle of the ballfield or go shopping at the mall.
— Acknowledge cognition changes. “It’s easier when everyone knows and understands that Mom or Dad has ‘MS moments.’ Learn to laugh them off instead of making a big deal about them,” Willis says.
[See: 10 Lessons From Empowered Patients.]
Finally, try to maintain a good attitude. Gannon says that, plus a lot of help from his family, gets him through each day. “I don’t have anything slowing me down because they do an amazing job helping me manage my condition, especially my wife,” Gannon says. “I’m super lucky.”
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Raising Kids When You Have Multiple Sclerosis originally appeared on usnews.com
