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Saturday

 

6 Ways You Can Be There for Someone With MS





























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“The quality of life of an MS patient is driven in large part by social support,” Amit Sachdev, M.D., an assistant professor and director of the Division of Neuromuscular Medicine at Michigan State University, tells SELF. He points to research published in the European Journal of Neurology that found that social support was so important to patients with MS that the researchers recommended that patients be asked about their level of support, among other factors, when they see their doctor.

Farrah J. Mateen, M.D., Ph.D., board-certified neurologist with the Multiple Sclerosis & Neuroimmunology Clinic at Massachusetts General Hospital, agrees that being there for a loved one with MS is one of the most important things you can do to help. “This extends from the time of diagnosis, which can be life changing for some people, to day-to-day support in understanding symptoms, seeking attention for health needs, enhancing quality of life, and meeting the challenges of a chronic disease head-on.”

If someone you love has received an MS diagnosis, here are a few things you can do to help:

1. Understand that there’s a lot of uncertainty with MS.

The disease can be unpredictable and it impacts everyone differently. MS symptoms can range from dizziness, imbalance, weakness, cognitive changes, and vision loss, so it’s important for loved ones to be aware of the variability and fluctuations that can occur with symptoms, Dr. Mateen says.

People also have choices to make when it comes to medication, Dr. Mateen says, and different medications can come with a variety of possible side effects. “Make no assumptions that what you read about other people with MS will be the situation for your own loved one,” she says. “MS is a very heterogeneous and unpredictable disease.”

2. Treat them the same as you always have.

“In general, the best approach is to treat any person with a neurologic injury as a strong and independent person capable of decision making and self care,” Dr. Sachdev says. That includes not being afraid to talk about your own problems. “Any healthy relationship involves both give and take,” he says. You might feel that relying on your friend or loved one who has MS for emotional support would be burdening them, but it’s unlikely they’d feel that way.

“In most cases that person wants to continue to serve in the role of confidant and social support, just as they draw from their social support,” Dr. Sachdev says.

3. Be flexible and understanding.

People who have MS can experience fatigue even after having a good night of sleep, Kathy Costello, a nurse practitioner and Associate Vice President of Healthcare Access at the National Multiple Sclerosis Society, tells SELF. Knowing that fatigue can make it difficult for someone you love to participate in activities you had planned, and being OK if they have to cancel on you, is important, Costello says.

“People with MS have good days and bad days, and these are not predictable,” she adds. “Being ready with a plan B will surely help when a bad day occurs.”
4. Learn more about the disease.

MS can present with symptoms that are visible (like weakness or tremors) but other changes may be felt only by the person experiencing them, Dr. Mateen says. That could include sensory changes like numbness, pain, or tingling; or it could include dizziness, vision problems, or emotional changes.

Ask your loved ones what they're going through and what they wish others knew about living with MS. In addition to doing a lot of listening, educate yourself using resources on the National Multiple Sclerosis Society’s website. There may be no way for you to know exactly what someone with MS is going through, but making the effort to try can make a huge difference.

5. Offer to help with the everyday stuff.

People with MS can struggle to do ordinary things like walking, using the bathroom, cooking, and cleaning. “Routine day-to-day activities become the biggest challenge,” Dr. Sachdev says. So, offer to help out with things like folding laundry and vacuuming when you can. Depending on how much their disease has progressed, your loved one might not actually need help if they were recently diagnosed, but the gesture will have a big impact—and let them know that you're there if they need you in the future.

“Most MS patients are able to coordinate care but they may, at some point, need help with things like transportation and household upkeep,” Dr. Sachdev says.

6. Support MS charities.

Talk to people at your local MS society or support MS-related fundraisers, Dr. Mateen recommends. “Research is the way forward for people with MS since we do not yet have a cure for this disabling neurological disease and one is urgently needed,” she says. Not only will it show your loved one that you’re invested in them and their future, but you may meet other people going through a similar experience as you and learn more in the process about how you can help.

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