Multiple Sclerosis

Jean

Age at interview: 65
Age at diagnosis: 61
Outline: Jean was diagnosed with MS after experiencing numbness in her toes and increasingly frequent electrical impulses from her head to her leg. After not receiving an adequate answer from her MS specialist, Jean found medical services that could provide her with a proper diagnosis and treatment options. Her current symptoms consist of numbness in her hands, weakness in her right leg, and pronounced foot drop after strenuous activity for which she uses a WalkAide (functional electrical stimulation system). Though she faces bouts of depression, Jean focuses on maintaining a positive attitude and finding new ways to engage in the activities she loves. 
Background: Jean is a retired nurse who lives with her husband. Prior to her diagnosis, Jean was actively involved in hiking, biking, and cross-country skiing. Though she does not engage in these activities as avidly as before, Jean still hikes and bikes with a few accommodations. She enjoys gardening, swimming, and finding other ways to socialize with her friends. Jean identifies as a heterosexual White female. 

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Jean’s first confounding symptom was numbness in her right big toe when she exercised on the elliptical machine. A couple of years later, Jean started to feel an electrical impulse that traveled from her head all the way down to her right leg, pain in her neck, and numbness and tingling in her hands. After getting EMGs and MRIs done with negative results, Jean’s family doctor sent her to a neurologist who diagnosed Jean with transverse myelitis. The neurologist then referred her to a MS specialist who felt that Jean did not have Multiple sclerosis (MS) since she previously had a spinal tap done in which she tested negative for MS. Jean says that they “just kind of figured” that she had transverse myelitis. Jean asked the MS specialist about her weak leg and received the response, “You’ll have to work with it.” Dissatisfied with the answer, Jean sought a second opinion and finally received a diagnosis of MS.  

After first exploring exercise and diet as treatment options, Jean started on Ocrevus infusions and gabapentin to help with the numbness and tingling in her arms and hands. Jean was more relieved than upset by her diagnosis. The diagnosis helped alleviate some of the unknowns. At work, Jean had a supportive team who helped her to keep working. But, as her symptoms intensified, Jean couldn’t do all the jobs she needed to do to accomplish her job criteria and she decided to retire. Today, Jean’s symptoms include numbness in her hands, weakness in her right leg, pronounced foot drop after extended activity, incontinence, and memory loss. For Jean, it is a constant battle with time to strengthen her right leg as it can fluctuate daily. She uses a WalkAide and has been on Ocrevus infusions for three years to slow the progression of her primary MS.  

Jean’s memory loss has affected her sense of identity. She experiences a loss of joy and a feeling of emptiness. Jean was looking forward to traveling and hiking after retirement, but that dream was “ripped right out from underneath her.” She does find that engaging in physical activities like biking, swimming, or walking or socializing can pull her out of a depressive state. Jean continues to engage in the activities she loves with some accommodations: she uses hiking poles to help with her balance and an electric bike to compensate for her foot drop and weakness in her right leg when she gets tired. Jean also gardens and swims. MS has given Jean more empathy for others and for older people. Her advice to others with MS is to try to keep active and keep a positive attitude as hard as it may be. Her advice to friends and family of someone with MS is to ask the person if they want assistance before jumping right in, and have patience. 

 

Jean found that having a diagnosis reduced the unknowns.

Jean found that having a diagnosis reduced the unknowns.

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I knew what can be coming down the road for me with different symptoms and different problems that can arise. I mean, I look at the fact that, one day, I could end up in a wheelchair, just because I know what can be coming down the road. But things have changed quite a bit with MS research, I think, since that time. So, I'm hopeful, particularly with the Ocrevus, that it'll help prevent me from further symptoms and weakness. It was good to find out as to whether or not-- to have a final diagnosis, of course, so that you can go ahead and work with it. But I don't know. I don't know. It didn't surprise me. I wasn't really quite shocked. And being the fact that I had medical knowledge from working with MS patients, I don't know. It didn't surprise me as much, I guess, and upset me as much. I just knew something was not right. So, to have the final diagnosis probably helped alleviate some of the unknowns. 

 

Disability benefits allowed Jean to retire when she could no longer physically do her job.

Disability benefits allowed Jean to retire when she could no longer physically do her job.

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So, I was working at the hospital. And like I said, I was on my feet all day long. And it was getting to the point where it was just becoming a little more difficult with some of the tasks that I had to do for work, because my hands would go numb. And it was difficult sometimes trying to put even the gloves on my hands.  So, I decided. At the end of the year, I turned in my resignation. And the woman in HR kept telling me, “Oh, you should just go on short-term disability.” And she kept kind of pushing it at me.  And finally, what happened was, because we had to pull call one weekend a month for the type of work that I was doing in the hospital. And the woman was making up this call schedule for December. And I looked at my schedule. And I thought, we've got something going every weekend. I don't have time to pull call. So that's when I decided, all right, I'm going to start short-term disability.  Because HR told me, in order for me to get long-term disability, I'd have to apply for short term. So, I applied for short term and started short term and basically retired the first part of December. 

 

Jean’s everyday limitations make her sad.

Jean’s everyday limitations make her sad.

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INTERVIEWER: So, some people, when we talk to them, they talk about experiences of depression and other sort of mental health effects of having MS and that diagnosis. Can you talk about your experiences with that?  

Yeah, I go through bouts of it. I mean, it's not where it gets really deep, but periods of sadness all of a sudden. I'll suddenly feel sad and not know exactly why. There are times where I feel completely empty inside. And then there's times where, yeah, I do get depressed. I get that way when I'm with friends that are talking about trips that they're going to go on, because that's one thing I've always loved to do. And it was one of the things that I was looking forward to when I retired was to travel more and also to do a lot more hiking and a lot more activities. And sometimes I feel like that was ripped right out from underneath me, because I didn't even get to retire to even do a year of that. So, it can get me down. And I'll get together with friends, and they're talking about this trip or that trip that they're going to go on, particularly hiking trips. And it just kind of gets to me, because I just think, oh, I want to go, but knowing I can't, because I'd never be able to do what they're planning on doing. So yeah, I get depressed in that sense. But sometimes I just suddenly get sad. And I don't know the reasoning for it. And I just kind of chalk it up to, well, it must be the MS. 

 

 

Jean focuses on what she can still do rather than what she’s lost.

Jean focuses on what she can still do rather than what she’s lost.

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You have to look at other ways of living your life and just having to come to accepting it, because there isn’t-- unless you can exercise, there isn't a whole lot that you can do to prevent further progression of it besides medication, maybe. But I don't know. I just have to look at the positive of what I can still do versus what I've lost. And I know I'm one of the luckier ones, I would say, at this point, because I know that there's a lot of people a lot worse off with MS than what I have with the symptoms. But I don't know. It's just the fact that positive is just trying to find other ways of doing things or finding other activities that you can still do. 

 

Jean wants patience while she does things on her own. 

Jean wants patience while she does things on her own. 

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And I think most people want to help. But they don't realize the downside of doing that if the person is still capable of doing it, because then it takes away their confidence and their ability to be able to perform whatever they're trying to perform. And I have had friends jump right in. And it's like, wait a minute. You need to back up. I can do it. I just move a lot slower than when I did. And I think for them to have patience, because people, I think, with MS and a lot of the different disabilities-- they're capable of doing a lot more than what I think people give them credit for. But it's at a slower pace. I mean, I think that was part of my problem with a couple of my friends I used to bike with. We used to all take off and bike at a faster pace than what I can go now. So, they'll take off, and I'm still way in the back. And I don't know if they feel compelled that they have to stay back with me and not go at their pace. Same thing with walking. I've told my friends, when we're out, go ahead and walk at your own pace, because everybody has their own pace and that they don't necessarily have to stay back to walk my slower pace. In fact, I had a friend a couple weeks ago tell me that, because she stayed back and walked with me, her thighs hurt worse because she slowed her pace down so much that she ended up working her thighs muscles more than her whole leg of what she was used to doing. So, I think if people continue doing-- just understand that people with MS and any type of disability, they're going to move slower and just have patience. And I think that's the bigger thing is just having patience and letting them do what they can do. 

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