Portraits of MS:
Tips for Living Better
Real patients share their experiences, tips,
and life hacks for living better with MS.
Text by Kimberly Holland
Photos and videos by Noah Rickertsen and Richard Storm
Multiple sclerosis (MS) attacks the central nervous system. Symptoms of the disease can vary widely from person to person. As MS progresses, many people experience issues with mobility, loss of fine motor skills, numbness, fatigue, or memory problems. Learning to live with the condition often involves making changes to daily tasks and routines, using adaptive devices, employing life hacks, or simply scheduling time to rest.
Julie Ramirez, 50
"A good day is a planned day. I don't know whether I have always been this way or if I've just learned it, but I'm really super organized. I live by a schedule, and I allow extra time for everything. I slot extra time to just sit down and relax. I don't put things back to back to back. I can't because if I'm hurrying, I get hurt. I've fallen and injured myself because I was rushing. If I know that I'm going to have company, I plan to do some of my housework a little each day.
I have knee and ankle braces for when I go for long walks, not just around the house. I love going for walks on the beach with my friends, and I wasn't able to do that for a long time. I actually had given up on that, but now I'm back at it."
Malini Singh McDonald, 39
"I wake up every morning and have a pretty clear idea of what my schedule is going to be like for the day. I have structured it that way. I'm realizing that I don't work with spontaneity anymore. I try to be in bed at 11, and I try my best to have lunch and dinner at the same time every day.
Fatigue and extreme temperatures are my two triggers. I just have to be aware of that. Winter in New York is horrific. I try to stay indoors as much as possible, and luckily I have a flexible schedule now. Still, for when I am outside, I pretty much know all the underground places to walk in the city. When August comes, it'll be another horror show. It'll be so hot."
Nikki Mueller, 60
"Always stay active. Don't stop if you're still able. If you're able to walk or run, do it. You'll learn how to modify that eventually. If there are things you can no longer do, I would suggest you go to a physical therapist, and ask them to help you adjust to a new routine. It's important that you don't become stagnant or stationary.
Listen to your body. Stop when it says stop. If you feel like you can't do something, just take a rest. Otherwise, if you don't, you're going to be sorry.
There's so much information out there, so the first thing you should do is read, listen, and learn as much as you possibly can on your own. That will help you make an informed decision about things that you're going to have to decide. Go to the MS Society, and find out if they have meetings for the newly diagnosed in your area. Join their email list, mailing list, and magazine list."
Cindy Clark, 54
"Find [a medicine that works for you] and definitely get on it. [The medicine] doesn't cure MS, but it kind of stops the disease where it is or really slows it down. I don't know if that's one of the reasons I've been doing relatively well, but I've been on a medication since right after I was diagnosed.
Because my schedule is my own and I don't have to worry about anyone else, kids, or a regular job, I have become more of a day sleeper. I go to bed really late, around 4 or 5 in the morning, and then sleep most of the day unless there's something I need or want to do. For me, it really helps to be asleep during the heat of the day. I don't know if others could flip their day for night, but nights are much more comfortable to be up and about."
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