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6 Things MS Nurses Wish Their Patients Would Do — And Why
From more exercise to more compassion, here's what nurses think would help people with multiple sclerosis the most.
By Quinn Phillips
Medically Reviewed by Samuel Mackenzie, MD, PhD
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In our healthcare system, the advice of doctors naturally tends to carry a special weight. But with multiple sclerosis (MS) — as in other conditions — it's often nurses who spend the most time with patients and know about their challenges on a more intimate level.
We interviewed three nurses who specialize in MS care (and see hundreds of patients every year) to find out what they think are the most important steps for people with multiple sclerosis to take. You've probably heard some of this advice before, but it bears repeating — especially because, as the nurses note, some of these tips can lead to big improvements in your quality of life.
1. Exercise (the Right Way)
For Mary Filipi, PhD, an MS care specialist and assistant professor at the University of Nebraska Medical Center College of Nursing in Omaha, the first thing she tells many of her patients to do is get enough of the right kind of exercise.
"You need to exercise. I personally tend to think my folks do better with resistance exercises," Dr. Filipi says. "But I don't expect them to bench-press 300 pounds."
Filipi acknowledges that many people with MS are affected by some level of disability, but she dismisses the idea that this is a good reason for not exercising. "It doesn't matter what level of disability they have," she maintains, because exercise helps people preserve the abilities they have.
"We know that if they exercise, they can slow their disease process up to 30 percent just by exercising three times a week," she says.
She also encourages you to exercise your limbs individually to make sure that a stronger arm or leg isn't compensating for a weaker one. Otherwise, she warns, "The strong arm gets stronger, and the weak arm gets weaker."
2. Cultivate Compassion for Yourself
Gretchen Mathewson, a family nurse practitioner at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai Hospital in New York City, believes that learning to be compassionate toward oneself is the key to a better life with MS.
Being compassionate "is not the same as feeling sorry for yourself,” says Mathewson. “It's treating yourself as gently as you would a dear friend or your own child who came to you with the very same issues.”
“Cultivate self-compassion,” she advises, “and you will be more compassionate to those around you and create a more positive space for yourself. Yes, there are many things you need to accomplish, but you don't need to get them all done at once. Make a list, choose the top three, and set a goal for yourself. Then tackle three more, and so on.”
For those who don’t know where to start, Mathewson suggests, “Practice mindfulness, stop eating sugar in all forms, and exercise to the extent of your ability. This is a path toward healing.”
3. Stick to a Routine
According to Filipi, it's important for people with MS to "go to bed at the same time at night, get up at the same time each morning, and have something to do."
She sees sleep as an area that many people with MS neglect — often without knowing what they're doing wrong.
"You need to kick the dog out of your bed," she offers as an example. "You need to take the TV out of the bedroom." And if you have a light-emitting clock on the bedside table, "you need to turn it away from you, because it breaks up your sleep pattern."
When her patients stick to a schedule that includes regular exercise, enough sleep, and a day filled with chores and activities, Filipi sees that they do "much, much better" at managing their MS symptoms.
RELATED: 6 Skills for Living Well With Multiple Sclerosis
4. Educate Yourself (in a Smart Way)
It's easier to manage your MS when you know as much as you can about what's happening in your body. Understanding how your medications work is a key part of that knowledge.
Filipi encourages you to discuss your MS medications with your healthcare providers and to ask about any major medication side effects you should watch out for.
She advises caution when participating in internet chats or forums about MS symptoms and treatments — or even avoiding them entirely. "People on the chat lines always have some kind of ax to grind," she says. Instead, "You need to go to places that have good, reliable information." For example, the website of the National Multiple Sclerosis Society publishes information that has been reviewed by experts.
In addition to learning about MS, “Challenge yourself to learn new things,” advises Bobbie Severson, an advanced nurse practitioner at the Multiple Sclerosis Center of the Swedish Neuroscience Institute in Seattle.
“New challenges can stimulate the brain and enhance cognition,” she says.
5. For Better Bladder Function, Stay Hydrated
"You need to drink plenty of water” for all-around good health, Filipi says. But many people with MS don't do this, in part because they may have bladder control problems due to the disease. "They don't want to be incontinent," she says, "and I don't blame them. But they need to drink probably more water than anybody else to flush that bladder out."
When the bladder doesn't empty completely, the risk of developing a urinary tract infection (UTI) is high.
To deal with this issue, Filipi says, "You sit down, you urinate, then you get up." Then, after moving your body around for a few seconds, "you sit down and urinate again."
"I have one gentleman who gets up and does 10 deep knee bends," says Filipi, which is "not a bad thing, as long as you don't fall over and hit your head on something."
6. Find a Purpose, and Have Some Fun
The unfortunate reality of MS, Filipi says, is that many people can eventually no longer do the work or participate in the leisure activities that once helped define them. "You identify with what you do," she says, which can lead to an identity crisis when your abilities change.
But people with new limitations, Filipi says, should "start realizing that they have more to give than that one area" they defined themselves by. Even if you can no longer work at your job, you may find meaning and purpose in social activities, such as at a community center or in a support group.
Severson agrees. “Find a purpose,” she says, “a reason for you to get out of bed each day. What is your interest? Get involved. Think outside yourself. Volunteer if you are able.”
Strengthening your social ties is important, too. “Appreciate the people who are near and dear to you,” advises Severson.
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