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.
ANN: I can read the tax code and remember the tax code. But if my husband tells me, at 9:00 one night, "Don't forget I have to do X after work tomorrow," I'm going to call him and 7:00 and say, "Why aren't you home?"
ANNOUNCER: Support partners can help motivate their partner to stick with their treatment and physical therapy regime.
BRIAN: I can judge whether she's having a good day or a bad day every day by how many times she drops her hairbrush in the morning. If she drops her hairbrush three or four times, I know it's going to be a tough day for her.
I have to make sure of a couple of things to keep her healthy. One is that she has to go to the gym. If she doesn't go to the gym, her energy level goes down. The same with being thin. Ann will probably tell you that it's very important that she maintains her weight at a very low level because if she doesn't, her energy level goes away.
ANN: There are those days when I wake up and I say, "I don't feel like it," and he says, "Get out of bed and go to the gym, because you know you're better off," and sometimes that's great, to have somebody to push you that extra step.
ANNOUNCER: Most care partners are able to adjust to the changes that happen. However if the disability becomes more advanced the partnership may need assistance.
ROSALIND KALB, PhD: I think what families typically do is to look first to friends and relatives to try to solicit help where possible. Then they may also hire from agencies people either to do some kind of light housekeeping chores if that’s what’s needed or have somebody come in and actually provide some nursing care.
ANNOUNCER: The emotional and cognitive changes of the person with MS coupled with increased household responsibilities may cause the support partner to put their own needs on hold.
ROSALIND KALB, PhD: People do resent this or feel angry or get frustrated, particularly if the going gets rough and they’re dealing with a loved one who has a lot of severe disability. They can end up feeling angry and then feeling very guilty about their own resentments.
ANNOUNCER: Family counselors or support groups can also help get the partnership back on track.
ANN: I think that the most difficult part of MS is not knowing what's going to happen and, if you need long-term care, how much money that costs and that is so, so frightening.
BRIAN: We had to put together a financial plan that takes into account that it could be tomorrow when Ann can't work any more.
ANN: We are both certified public accountants, but sometimes when it's your own life, you just don't make rational decisions. And it helps to have an independent person who's experienced in this kind of thing to manage your money for you.
ANNOUNCER: Care partnerships can thrive for both the person with ms and the support partner.
ROSALIND KALB, PhD: I think that the most important way to make it work is to recognize that they can’t do it without communicating honestly and openly with one another. They can’t do it without respecting each other’s needs and trying to make sure that they each continue to be on the giving and receiving end of the relationship.
ANN: The key in the care partner relationship is trust and fun, honestly. If you don't look at some of the silly things with a sense of humor, you just fall apart and the days just seem so long. And when we talk about fun, I like to blame every bad golf shot I make on MS. Probably 1 out of 100 bad golf shots are from MS, and I'm just a bad golfer. But he puts up with this and that's where the humor comes in.
BRIAN: I could see how people could get burned out and just say, "You know, this isn't what I signed on for." Husbands have just said, "I didn't sign on for this," and hit the road. I signed on for better or worse and I'm here for the long haul.
