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6 Things MS Nurses Wish Their Patients Would Do — And Why





















From more exercise to better communication, here's what nurses think would help people with multiple sclerosis the most.

In our healthcare system, the advice of doctors naturally tends to carry a special weight. But in the care of MS, as in other areas, it's often nurses who spend the most time with patients and know about their challenges on a more intimate level.

We interviewed two 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 since, 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, a nurse practioner specializing in MS care and assistant professor at the University of Nebraska Medical Center College of Nursing, getting enough of the right kind of exercise is the first thing she tells many of her patients to do.

"They 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," Filipi says.

She also encourages people to exercise their 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. Communicate Openly With the People in Your Life

Denise Chicoine, a Connecticut-area nurse at MS One to One — a telephone service offered by the pharmaceutical company Genzyme that lets people with MS talk to a dedicated nurse specialist — believes that better communication is the key to a better life for many people with MS.

"Probably the first thing that I wish they would do more often," she says, "is ask for help and create a network — a support system — for themselves." But many people with MS are hesitant to discuss their disease in any detail with people who aren't healthcare providers.

Talking about MS "can be challenging in the beginning when folks are first diagnosed," Chicoine says. But then it can remain challenging depending on the patient's willingness to divulge that they have MS, on how they communicate, and on their family dynamics."

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 in the 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.

"They need to kick their dog out of bed," she offers as an example. "They need to take their TV out of the bedroom." And if someone has a light-emitting clock on their bedside table, "they need to turn it away from them, because it breaks their 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.

4. Educate Yourself (in a Smart Way)

According to Chicoine, it's easier to manage your MS when you know as much as possible about what's happening in your body. To that end, she recommends finding out as much as you can from your healthcare providers.

"One of the things I do here every day, all day long, is to encourage patients to have in-depth conversations with their physician around symptom management and disease management," she says.

Discussing your medications is an important part of these conversations. "Patients may not always understand, or have clear expectations of, what medications are supposed to do," Chicoine says. "If they have their own perception about what this medication is going to do, and then it doesn't do it, they may stop taking it."

Filipi agrees that discussing medications with healthcare providers is important and encourages people with MS to ask their provider about any major medication side effects they 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.

5. Pay Attention to What Enters — and Leaves — Your Body

No one disputes that a healthy diet is important for people with MS — or any other health condition, for that matter. But, as Chicoine notes, "Diet is very individualized, because patients can have other [diseases]" in addition to their MS.

Instead of recommending a specific diet, Chicoine advises talking to your doctor about the nutrients you need, especially since "supplements are very popular now, and we certainly want patients having that conversation with doctors" before taking them.

In addition to a healthy diet, Filipi says, "You need to drink plenty of water." 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. Get Out and Have Fun

The unfortunate reality of MS, Filipi says, is that many people can eventually no longer do the work or 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" by which they defined themselves. 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.

Chicoine recommends finding activities that are tailored to your condition, such as an MS-friendly yoga class. Sometimes this means bringing other people on board with an activity that suits your needs.

Story Source: The above story is based on materials provided by EVERYDAYHEALTH
Note: Materials may be edited for content and length


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