Multiple Sclerosis

Maureen

Age at interview: 64
Age at diagnosis: 44
Outline: Maureen was diagnosed with Multiple Sclerosis (MS) after experiencing unusual sensations in her hands, feet, and back. Now, Maureen uses a cane and experiences weakness in her left arm and spasticity in her left leg that began as foot drop and traveled upwards to her hip. Maureen continues to maintain an active lifestyle by riding her tricycle or swimming at least four times a week, as well as attending a Pilates class twice a week. Maureen feels that her outlook on life has improved since being diagnosed with MS. As a previous “on-the go,” person, Maureen has learned to slow down, put things into perspective, and be more compassionate. In some ways, Maureen feels that MS has made her stronger by forcing her to be resilient enough to keep doing things despite MS. She might not do it as well, as fast, or the way she would like to, but she is strong enough to still do it.
Background: Maureen is a mother of three and a grandmother of three. She works part-time and spends her free time with her grandkids. She feels fortunate that MS has not impacted her cognitive skills. Maureen identifies as a heterosexual White female.

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Prior to her MS diagnosis in 2002, Maureen began experiencing unusual feelings in her hands, feet, and back. After doing some research, Maureen concluded that she either had a brain tumor, Multiple Sclerosis (MS), or no disease at all. Being in a “state of change” with her healthcare provider, Maureen saw a completely new doctor who referred her to a neurologist. After running tests, the neurologist diagnosed Maureen with MS. 

With little information from her physician after her diagnosis and a cousin who was disabled by MS in his mid-30s, Maureen was devastated by her diagnosis. For the first two months after diagnosis, Maureen would lay in bed crying and praying. For the first five years after diagnosis, Maureen continued to walk, play racquetball, and ride her bike.  After that, Maureen’s disease progressed. She believes that remaining active prevented her from developing severe motor difficulties.

After her MS diagnosis, Maureen started the weekly injection medication Avonex. After experiencing side effects, Maureen switched to Copaxone then Tysabri. However, she stopped taking both medications when she could not see anything positive happening in her MS progression. After giving up on MS medications, Maureen has been described as a “noncompliant patient.” While she understands that healthcare providers have been trained on how to treat MS, “It’s still me that’s living with it, and I get to make some decisions. So, if I decide not to take something, then I decide not to take something, and I live with the consequences. If that’s my decision, the consequences are mine to put up with.” Maureen also experiences depression. Though she was diagnosed with depression before being diagnosed with MS, she wonders if there was a correlation between her depression and getting MS. Over the years, Maureen has learned how to manage her depression through physical activity and an antidepressant medication.

Today, Maureen gets frustrated by the MS rather than depressed, especially on days where she finds it hard to walk or if she falls down, particularly in public. Due to her motor difficulties, Maureen feels nervous to go out in public places with groups of people unless she is with family or close friends. Maureen currently experiences weakness in her left arm and spasticity in her left leg that began as foot drop and traveled upwards to her hip. In case MS further impacts her mobility, Maureen lives in a universal design home that is specifically designed to be wheelchair accessible. Because of MS, Maureen feels that everything is slower, and she has become limited in what she is able to do because of physical difficulties. Throughout her MS journey, Maureen found it helpful to have faith, pray for strength, and believe in a higher being who is looking out for her and helping to get her through.

 

Maureen decided on her own to stop treatment due to side effects.

Maureen decided on her own to stop treatment due to side effects.

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He put me on Avonex®, the one shot a week, and that was okay. I got the normal sickness they say that came with it. But after a while being on that, I took it every Wednesday, and one Saturday morning, my leg just went straight, and I couldn’t do anything with it for about 30 seconds. Of course, that scared me. I didn’t know what was going on. But it went away, so I didn’t think too much of it. But it kept happening on a Saturday. Well, what do I do during the week that’s the same all the time? And that was that shot of Avonex®. So, on my own, because I have been told I’m a noncompliant patient, I stopped taking the Avonex®, and I didn’t have that happen anymore. 

 

Maureen appreciates clinicians who consider the whole picture of her health.

Maureen appreciates clinicians who consider the whole picture of her health.

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And I think that was an example of the one neurologist I had that, my father had colon cancer, and when that was on my history, the first thing that neurologist said is you need to get colonoscopy if you haven’t. And I thought, you know, that’s really what healthcare is about. Like, okay, I’m MS and I’ll deal with that, but he knows this and told me to do this, which made a ton of sense to me. So, I guess in some ways, I have felt some, I might, shouldn’t say this because my daughter and her husband are both in the healthcare field, but in some ways, I feel like I’ve been let down by the healthcare profession. I know there’s not anything they can do for a cure of the disease, but I think there are some things they could do to help me make my life living with MS a little better.

 

Maureen’s problematic interaction with her specialist was a factor in her decision to discontinue treatment.

Maureen’s problematic interaction with her specialist was a factor in her decision to discontinue treatment.

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The last appointment I had with him, he spent more time showing me pictures of his little dog and the squirrel he caught than he did saying anything about my disease. And I’m like, why am I paying this person if this is what’s going to happen? So, I didn’t go, and I didn’t go to a neurologist for like three years. I can’t see any difference in not going. He always wanted me to get MRIs. I hate getting MRIs. I’m claustrophobic. And the MRIs seemed to be the same, but my condition, my abilities or what you want to call them, my, what I am able to do, got worse, even though the MRI stayed the same. So, I was like, I don’t really care what the MRI shows. I care about what I can do or what I can’t do. But he used to sign me up for MRIs too, and I, he would never say he was going to do it. And I get a call from the MRI people, and I’d say, I’m not going to take, do the MRI. So, after the business with seeing his dog, like I say, I stopped there. It was probably three years. But I felt I needed a neurologist because I have a neurological disease, so I went back to the practice where the doctor was who went to [ORGANIZATION] and now have a neurologist who is fairly young, which I think is great. And she seems to be very easy to work with. She doesn’t press as much on the therapies.

 

Maureen doesn’t like getting MRIs and doesn’t care about her results.

Maureen doesn’t like getting MRIs and doesn’t care about her results.

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He always wanted me to get MRIs. I hate getting MRIs. I’m claustrophobic. And the MRIs seemed to be the same, but my condition, my abilities or what you want to call them, my, what I am able to do, got worse, even though the MRI stayed the same. So, I was like, I don’t really care what the MRI shows. I care about what I can do or what I can’t do.

 

Maureen doesn’t enjoy being at social events now that she has limited mobility.

Maureen doesn’t enjoy being at social events now that she has limited mobility.

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I don’t want to go places as much, in that, where there’s a group of people, unless it’s a group of, unless I’m with basically a family or very close friends, because it’s like I can’t get up and do things. I can’t move around easily. You get a little more nervous about it. So, you end up just kind of sitting, and it just makes the whole thing harder for me. It will be interesting to see how other people feel about that, that would be in the same place I am. I’ve never really liked parties, social events, whatever, anyways. This just makes it harder.  And it’s like, you know, to go get food, I don’t want to be in a food line because it’s hard to have your cane and a plate and whatever else. So, somebody that I’m with, generally a family member, will get me whatever is in the buffet line for, you know, say, a wedding. It makes that more difficult; I think. Again, people are very nice, but you just feel that you can’t participate the way other people can. 

 

Maureen and her husband built a handicap-accessible house.

Maureen and her husband built a handicap-accessible house.

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So, when we built the house, we worked with an architect, and we worked with this person from accessible housing and went by all the things like in the, everything is very wide open because of it.  

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Like the hallways are wide because of having to turn a wheelchair. The kitchen needed the radius to turn a wheelchair. We did put backing in all the walls so that if we ever need handrails, there’s, the backing is already there. The one closet, in case we ever, I needed it to get to the basement, you could just cut out the floor. Everything else is there that you could put an elevator in. So, you know, yeah, basically the windows, the type of windows we got were designed so that if I had, you know, problems, it was this kind and not this kind of window.  

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The kitchen very much was designed. The only thing that wasn’t was the sink is still high because I just didn’t want a lower sink, and I just said, “If it comes to that, we’ll deal with it.”  

 

The thing that was, got to be very, when we met with the architect, the accessible housing person, the builder, they would always be talking about the wheelchair. And it was like, okay, you’re always pointing out that I’m going to be in a wheelchair, and I’m like, I’m not necessarily going to be in a wheelchair [LAUGHTING]. You know, somebody else might need this. It might not be me that needs the wheelchair. It may be my husband that needs the wheelchair. Just because I’m more likely, but it got kind of depressing, like to think that this was being set up because you’re the one who might be in a wheelchair. And I say to them, "You don’t know that."  

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But we did design everything with the idea. That’s why there’s no steps in the house at all, even coming in like from the garage. It’s just a ramp that’s maybe an inch incline. From one room to the next, the floors are all the same level. We have a walk-in shower that’s huge because of that, so that if you ever, if I, if anybody ever was in a wheelchair, you can just roll right into [LAUGHING] whatever. You know, you could set up whatever. So, yeah, everything was designed with that in mind.

 

Maureen sees exercise as important for maintaining her mobility.

Maureen sees exercise as important for maintaining her mobility.

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I am a big proponent of exercise. I think the reason I’m not in a wheelchair at this point, that I could’ve been, is because I have, I rode bike for a long time, did the racquetball, did whatever. I got to a point where I couldn’t ride bike because I wasn’t sure, when I got off, where I was going to end up. When I put that left leg down [laughing] to stop, it was crash and burn, or will I [laughing] still stand up? So, after that, I didn’t know what I was going to do because I couldn’t walk anymore at that point really for exercise. So, I went and tried a recumbent trike

INTERVIEWER: Hmm.

[INAUDIBLE] front went well. The first one, I think, was two wheels in the back, one in the front. I didn’t like it at all. And we were sitting with it on the table, my husband, my daughter, who’s my youngest child, and I, and I said, “I’m just not going to do it.  I just have to give it up.” And she said to me, “Mom, you’re not a quitter.” And I thought, you know, you’re right. I’m not a quitter.So, I went back to the bike shop, and they happened to have a recumbent trike with two wheels in the front and one in the back. So, I rode that around and I like that one. So, I got that trike, and that has become my mode of outside exercise, and I ride it a lot.  I do that, and I swim. Obviously swimming I can do year-round in an indoor pool, and the trike I can’t. But I try to swim or trike at least four times a week, and I really push trying to get out the fifth time. And I think that has made such a difference. And somewhere in all this happening, it was back when I was with the guy who went to [ORGANIZATION]. I also saw a physical therapist who dealt mainly with MS who was really amazing. And she gave me some exercises that I continue to do, and this has probably been 10, 15 years now, maybe not, yeah, somewhere in there, that I continue to do these exercises. And those have helped also.   

 

Maureen tries to be efficient and organized when doing daily tasks.

Maureen tries to be efficient and organized when doing daily tasks.

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Everything is slower. That is the biggest. Everything is slower, and I plan a lot more, little things. Like when I say little things, I mean like before MS, I wouldn’t have thought, okay, I’m going to this part of the house, and I need to do this, or I have this here, and I have this here. Now, because we’re on all one level, the house is kind of long. I will think, okay, I’m here, take this. I’ll put this away while I’m here, do this while I’m here, so that I minimize the number of times or the amount of walking I have to do, because it’s, I don’t even know if it’s because it’s hard or just because it’s so slow. I notice at work, I do the same thing. I don’t get up and put something away. I just kind of like shove all the stuff that I’m going to need to do, and on one trip, I go to this room to do this, this room to do this, file in the office, whatever. So, it’s more like the really, really little things that I have in my mind. In a way, it’s become, it makes you more efficient, I guess. Doesn’t make you faster, just more efficient. So, I think that is a huge change. I always take a book or my Kindle with me wherever I go, especially like if I go with my husband, because if we’re running errands, he’ll be the one doing it, and I hate to sit doing nothing, so I always take something to read. So that has changed that also.   

 

MS influenced Maureen’s job and volunteer choices.

MS influenced Maureen’s job and volunteer choices.

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I might have got a part-time job that did something other than what I’ve done all my life in the job that I had, but because I can’t do anything physical, that limits what I would be able to do. I got a part-time job just to have a little something to do when I retired, keep my mind fresh, see some people, have a few, you know, make a few bucks. But I might have done something different that way. Or another thing is like volunteering. I think that perhaps I would volunteer in a different way. I don’t do much volunteering now. For a long time, I was a big sister in a Big Brother Big Sister program. I’m still in contact with my little sister, who’s 20 now. But I, you know, I can’t do a volunteer thing like that now, I don’t think, because I’m limited physically.

 

Maureen doesn’t think differently about herself due to MS.  

Maureen doesn’t think differently about herself due to MS.  

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INTERVIEWER: So, related to that, how do you think that MS has changed how you think of yourself and view yourself as a person, like your sense of self?

I don’t really think it has changed very much. In fact, in some ways, I think I feel that I’m stronger than I felt I was before because it’s like, okay, I’ve been given this, I always call it the disease that sucks, but I’ve been given this to deal with, and I have been resilient enough to keep doing things. And I am often able, I’m, a lot of times will tell somebody what my problem is. I will say, I have MS, because I think it’s important that people know you can have a disease, and you can still do things. And you can do it in spite of that.  You might not do it as well, as fast, the way you would like to, but you can still do it, and you can be strong enough to still do it. And I mean not strong, physically strong, but it’s the resilience. In that way, I think it’s made me think I am a stronger person than I thought I was. 

 

Maureen feels compassion toward other people.

Maureen feels compassion toward other people.

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I actually think the way I look at life in general has improved since having MS. I think I’m more patient. I think I’m more compassionate, because I was not a compassionate person. It’s like you should be able to do this. I can do it. You should be able to do it. But I think what I have realized is, whether it’s physical, mental, emotional, whatever, is a lot of people have a problem they’re dealing with. You don’t know what that problem is. You don’t know how they’re feeling. But you know they have a problem, and you can feel compassion because you know what it’s like to have a problem, not that specific one. So, you can be more compassionate, more understanding. I think having to slow down gives you a much different perspective on what’s important.

 

Maureen expresses concern over her future with MS.

Maureen expresses concern over her future with MS.

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What if I get to the point that I get so bad? And then I say, I don’t, if I get that bad, I don’t want to be here. And I think that’s okay. You know, I, if you lived your life to the potential that you could live your life, and you get to a point where you just don’t like it anymore, I really think you should be able to have assisted suicide. Is that, that might be something you cut out of my, but I can’t see, like because I’m a person who wants to keep doing things and not just sit, I think I would have a very hard time.   

 

Maureen has found doing Pilates to be helpful.

Maureen has found doing Pilates to be helpful.

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Lately I’ve taken, I did ask my son-in-law, what do you think I could do to make, let's call it the value of my life better by helping me out doing some of the things? And he did say maybe, well, the first thing I would do is start going to Pilates twice a week. So, I’ve started that. And for the first time in probably two or three years, from sitting on the floor, I can get up without having to push on like another piece of furniture or something that’s like a foot and a half up to press against. I can actually, not pretty, not graceful, but I can actually now get up off the floor just by pushing off the floor. And that was, I’ve been going to Pilates, this Pilates now for like three weeks, twice a week. So, I think, you know, there was something to be said for making that change. And at that point in time, I said, “I don’t know if I can afford it,” and he said, “I don’t know if you can afford not to do it."

 

Maureen doesn’t like getting MRIs and doesn’t care about her results.

Maureen doesn’t like getting MRIs and doesn’t care about her results.

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He always wanted me to get MRIs. I hate getting MRIs. I’m claustrophobic. And the MRIs seemed to be the same, but my condition, my abilities or what you want to call them, my, what I am able to do, got worse, even though the MRI stayed the same. So, I was like, I don’t really care what the MRI shows. I care about what I can do or what I can’t do.

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