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Living with MS: The Care Partner Relationship

Summary & Participants

There are 400,000 people in the United States with multiple sclerosis and numerous others who are involved in assisting or supporting that person. Here's what you need to know if you are taking care of someone with MS.

Medically Reviewed On: July 18, 2008

Webcast Transcript

ANN: When you're first diagnosed, you really panic. You think your life is over. It's horrible fear, thinking, "What will come next? What will come next?”

BRIAN: My initial thought was "What the heck is MS?" This was back in 1992. We had just been married for five years and I was thinking, "What is MS?"

ANN: We had plans. We wanted to work hard, retire early, play golf, do all sorts of great things. And you really think, "I'm not going to be able to do that."

ROSALIND KALB, PhD: We have 400,000 people in the United States with MS, for each one of those there’s at least one and sometimes several other people who are affected by the disease and who are involved in assisting or supporting the person with MS.

ANNOUNCER: One of the challenges people with MS face is learning to inject themselves with medication.

ROSALIND KALB, PhD: They have to deal with injections usually. Who is going to do them? Can the person with MS handle them alone? Is it something that the care partner needs to be involved in? And then dealing with the side effects that can occur.

ANNOUNCER: Shots may be given at different parts of the body.

BRIAN: Ann has figured out how to do most of the shot locations by herself, but she still can't inject it into her own arm. So whenever it's an arm day, Brian does the shot.

There was one drug that Ann took that I thought she was going crazy. I really thought that she was just out of her mind. And I did some research and read the drug's things, and sure enough that was one of the side effects was a lot of irritability and just, she was very short with me.

ANNOUNCER: Patients with MS often have problems with symptoms like balance and fatigue.

BRIAN: We were walking up to our favorite restaurant probably about two years ago now. In the middle of the winter, and we were walking up the sidewalk and all of a sudden, she's on the sidewalk. And so I picked her up, and I said, "Do you want to go home?" And she's said, "No, let's just keep going. You know, this just happens."

ANN: It just happens. Balance issues all the time. He'll hang on to my arm or let me hang onto his arm.

ROSALIND KALB, PhD: There are all kinds of symptoms in MS that aren’t visible, and I think this is extremely challenging for loved ones, family members. Severe fatigue, if you’ve never experienced it, is something that is very difficult to understand.

ANN: You just constantly feel like you're run over by a truck. So you get used to feeling that way and it's not so bad, but when it first, first hits, it's very, very difficult. And having support at home and somebody who really just sticks with you and says, "You know, whatever you need me to do, I'll do."

ANNOUNCER: Mood swings and problems with memory are also common.

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