Multiple Sclerosis

Jim

Age at interview: 49
Age at diagnosis: 37
Outline: Jim’s doctor initially dismissed his feelings of tiredness and changes in his speech. Eventually, Jim found a doctor who listened to his concerns and he was diagnosed with relapse-remitting MS. Jim thinks he now has secondary progressive MS as his symptoms have slowly worsened over time, affecting his walking, vision, speech, dexterity, and balance. He is a strong advocate involved in local and national organizations and groups for people living with MS.
Background: Jim lives with his wife, teenage son, and dog in a medium-sized city in the Midwest. He is a White male and previously worked as a biosafety officer.

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Before he was diagnosed with MS, Jim was a “burning candle at both ends kind of person”; a  runner and softball player, a drummer in a band, a father, and a biosafety officer, he was “living life to the fullest.” When Jim first went to the doctor with concerns about his speech and energy levels, his doctor dismissed his symptoms. Feeling “really stupid” and “self-conscious about being labeled with a negative label” like “hypochondriac,” Jim didn’t go back to this doctor. A good relationship with a new doctor made a “huge difference” for Jim: “feeling trusted is just a big deal.” Though this doctor diagnosed Jim with relapsing-remitting MS, Jim thinks his MS would now be labeled secondary progressive as his symptoms have gradually worsened over time. Jim attributes his MS diagnosis partially to “a state of mental health that wasn't ideal”; at the time in his life when he was diagnosed, he was “constantly stressing out about things.”

Shortly after being diagnosed with MS, Jim decided to start medications to treat his MS and tried the elimination diet, believing “if I tackle this more from a scientific angle and from a research angle, I can probably handle it quite a bit more.” [RG1] For eight years, Jim gave himself shots three times a week. He decided not to switch to oral medication because oral medications didn’t have as much safety data. Currently, Jim receives an IV infusion every six months.  

Jim’s symptoms are “all over the board” and have slowly worsened over time. He has “chronic soreness” in his legs as well as speech changes, vision issues with tracking, and dexterity challenges. MS has affected Jim’s walking and balance, and he “can’t really lift things because it throws me off balance so easily.” His uses a manual wheelchair for longer trips and for sitting on in his house, but “wasn’t ever using it for short trips.” Jim has “a very difficult time” with some activities such as cooking, writing, watching TV, and drumming. In 2016, Jim left his job as a biosafety officer because his heat intolerance made continuing to work in that environment challenging.  As he’s “just slowly losing some abilities and then trying to compensate,” Jim has “figured out ways to manage” his daily activities a big advocate for "use it or lose it"; to manage his symptoms, Jim believes in staying active. He tries to “always struggle a little bit because I figure if I'm not struggling, I'm moving backwards, essentially.”

For Jim, the “biggest hit” after he was diagnosed with MS was a fear of losing his identity. A couple of years after his diagnosis, Jim started to develop a “new life pursuit, this new identity” of a “very strong advocate” who keeps busy and doesn’t “dwell on anything bad.” He is “a leader type” in state and national organizations who works on fundraising, writes articles, participates in media interviews, and leads support groups, including a daily fitness group he calls the “12 o’clock Shakedown.” In this “whole new life” Jim was selected MS Activist of the Year and feels that his ability to serve and help other people has turned his “life into something that's really worth living.”

Short Biography Clinical Trials

Soon after Jim was diagnosed with relapse-remitting MS, he signed up for a clinical trial. At this time, he felt scared and “didn’t know what else to do.” Jim also comes from a science background and decided participation in the clinical trial was a “good opportunity to put my money where my mouth was” as a strong advocate for research. The “new weird clinical trial” involved swallowing parasite eggs. Jim was one of 5 enrollees in the first phase. He appreciated the “great amount of medical attention that wasn't part of my insurance plan,” including the large amount of his personal health data from the trial that his physician was able to access. Jim also enjoyed being “part of something bigger for everybody else.” Different from his usual health care for his MS, Jim noticed “when you do clinical trials, a lot of the observations are much more formal” because of the protocols that need to be followed. As a biosafety engineer and member of IRB committees, Jim “understood why it has to happen the way it happens.” Jim is a strong advocate for clinic trials, presenting to groups of people living with MS where he answers questions about clinical trials “as a lay person with fairly strong scientific knowledge.”

COuld this come after the part about meds he is taking? [RG1] [RG1]

 

Jim felt dismissed by his doctor.

Jim felt dismissed by his doctor.

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So, you know being dismissed-- you know in part, I felt you know like maybe it had a lot to do with the gender and age of my doctor at the time, and my gender and age, and with the shape that I was in you know. So, I was not-- in his mind, I was a manly man and so I-- I , at least that's the way I pictured it. That might not be a fair assessment, but that's really how it turned out.  
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At urgent care, the doctor, who I didn't know, came in and said, you're fine. You're stressed. You're not sleeping. This is how I get when I don't sleep. So, I knew what I was feeling was different than when I'm tired. You know-- when you-- you know what it's like when you have trouble finding the words or something like that when you're tired. I knew it was different, but you know, I was so paranoid at that point, I wasn't going to argue with the doctor about you know, who gives me their professional opinion, so which is you know-- which is what they wanted me to do. But I really, now I know I should have really pursued it.  

 

 

Jim struggles with keeping his balance.

Jim struggles with keeping his balance.

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It's really easy for me now to get disoriented and then lose balance and things like that. Like I can’t carry you know, I have to have the kids carry-- or now, they're older, but I had one of my kids still that’s at home-- carry when I make a cup of coffee, or have a bowl of soup, or something if I'm in a different room, or even to the table-- have him take it from the microwave to that spot because I can't do it without spilling it. So there's certainly that.   
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Balance is an issue around the house, changing directions, stuff like that. The other thing about changing directions is my feet-- at least my right foot-- doesn't always follow the rest of my body. And so, it's not uncommon, if I have to change directions, to stumble. But that's usually the reason as my foot might drag a little bit. It just takes a lot more effort to get my foot – my right foot up off the ground. So that's an issue there. So longer distance, like when I walk my dog, we just do laps around the outside of the house. But when I do that, that gets-- after maybe four times, it gets pretty difficult for me. And that's related to that strength. Right-- I just can't muster up the strength in my legs anymore. But standing still, then I have balance issues if I turn, if I turn too quickly, or something like that. So it's a little bit of both, but in different contexts.   
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But you know-- but an overall strength issue-- I still don't you know-- I don't have good strength anymore. But not only that, but I can't really lift things because it throws me off balance so easily. So, it just makes it really tough to do stuff like that.

 

 

Jim worries about his ability to function following a relapse.

Jim worries about his ability to function following a relapse.

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It's, you know for me, it was just an evolution of just slowly losing some abilities and then trying to compensate. You know they might come back. That is kind of the nature of a relapse. When I was initially diagnosed with relapsing remitting, which, I think, is their initial diagnosis for 85% of people with MS-- and the nature of that is you have this exacerbation of symptoms, and you might get full function back, you might not. And so essentially, that's what happened with a lot of them. I-- I'd lose function, and then I'd get most of it back. But there was a period of time in there where I wondered how much of it I was going to get back. Like the speech thing really worried me because I was-- because at the time, I didn't know it was a relapse. So, I didn't know if I was going to get better or not. But I also figured out, once I knew it was a relapse, that, boy, of all the things that could go wrong, that's one of the hardest things to deal with, which is not one that I would have picked out of the bunch initially. Right, you always hear, “yeah, he's going to be in a wheelchair. When can he walk again”, that kind of stuff. I mean losing your ability to communicate with people-- that's a tough one right. So, I was more worried about that. 

 

Jim leads a fitness group for people of all abilities.

Jim leads a fitness group for people of all abilities.

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I run a fitness thing every day. I-- I call it the "12 O'clock Shakedown" on Facebook. It's every day of the week, Saturdays and Sundays included, even holidays to a certain extent. I suppose that varies. But I started that during the pandemic when I realized I was really going downhill fast. And I called my neurologist, and she said, “Yeah, that's not uncommon. We're hearing that from a lot of people.” So, I decided, OK, well, I'm going to do something about it. I'm going to make that commitment on Facebook. So really, it was selfish originally. I did it because I figured if I made that commitment, people would hold me to it, and so I'd have to do it. But I have a page for it, and now I have you know, 100 to 150 people that join me every day for the shakedown. And it's just 15 minutes of music and movement for people of all abilities. And I just use shakers, and play popular music, and we just have fun with it, just move around and stuff like that. 

 

Jim likes the convenience of infusion treatments twice a year.

Jim likes the convenience of infusion treatments twice a year.

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And then once Ocrevus® was approved by the FDA, which was-- what, like three years ago, I think? And that's every six months. It's an IV injection every six months-- or IV infusion. And so I switched to that.  And the biggest thing I've noticed with that is it's just more convenient. You know, I go to the doctor-- or go to the hospital and have that infusion for four hours, or whatever it takes, every six months. [um] I haven't had an issue with a reaction to it. But it means I don't have to think about it every day, I don't have to think about rotating injection sites, I don't have to worry about traveling and-- and grabbing or thinking about how I want to bring my injections with me, and getting that stuff every month, and refrigerating it, and everything else. It's just it’s more convenient in that aspect.

 

Jim wanted to wait for better safety data before switching to an oral medication.

Jim wanted to wait for better safety data before switching to an oral medication.

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From a treatment standpoint, you know when I was starting to think about what treatment I was going to get, it really wasn’t-- it really didn't matter much because there wasn't really an advantage to one over the next other than [INAUDIBLE]. And once they approved oral medications, which they did a few years later, I didn't switch them, which surprised some people, but you know my view was, well-- and I wasn't with this view-- I talked to other scientists and stuff too-- but my view was, well, you know, you're not going to have nearly as much safety data on an oral drug that's just been put out that essentially, does the same thing as an injection, because it's the same kind of drug. It's just a different delivery method, which is much harder because you know, your gut thinks these things are food, and so you have to figure out how to bypass the gut. Right so it’s just -- but it's not been on the market for very long. So obviously, you don't have much safety data. So I want to wait until that all came out. I-- I always said that you know, giving myself an injection wasn't my favorite part of the day, but it's also not the worst experience of my life. I'm not afraid of needles, so I can handle it.  So I'm happy that oral drugs are out for the people that are afraid of needles and not doing MS drugs because of that. But for me, it doesn't make much of a difference. And now, like I said, with the Ocrevus©, it's just a convenience thing more than anything.  It might give more-- it was approved-- I think it's-- it’s well, I know it's the first drug that's been approved for progressive forms of MS. But you know like I said, it was just more a matter of convenience for me anyway. So that's another matter.  

 

Jim says it’s important for support groups to be positive.

Jim says it’s important for support groups to be positive.

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You don't want to get caught in that cycle of ruminating and constantly talking negatively about things and reminiscing about things in a negative way. And I think that there's a certain feeling that, when you go to a support group, that's what happens. Everybody talks about their negative experiences, and then we all commiserate and go home feeling worse.
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So, I took over the group, but really, even since well before that, I've pointed that out. And we've really focused more on just doing fun things, and getting speakers in, and stuff, and just not talking-- we just – we just really try to avoid-- it's not that it's not allowed because certainly, it is, and you want to talk about your experiences [um] but because they're real-life experiences. But you don't want to just commiserate about the same things every month and have that just be a very negative experience. So, we've turned it into a very positive thing, where you might do some activities right. Like I said, we have a speaker almost every month kind of thing.

 

 

Jim compared MS to diabetes to help his kids understand.

Jim compared MS to diabetes to help his kids understand.

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When I eventually did tell my kids-- because I told my kids before my people at work-- when I eventually told my kids, that's always a delicate issue when you're dealing with little kids. And I told them-- I think I compared it to diabetes because they had a teacher that had diabetes. And so, I think I referred to him, and I said, you know how he's got this-- essentially, I said, you know how he's got this disease that you know-- you all know that he has the disease, you all know that he has potential to have like high blood sugar, or whatever, low blood sugar or whatever happens. And-- and people know what to do. I said, well, I have something similar. But he's not going to die from it, I said, because I know that's one of the first things that kids worry about-- or I think that's what they worry about. So, I said, I have this disease, and it's-- it's a lot like Mr. H. It's not a contagious disease, and it's not going to kill me, but it’s-- it will affect the way-- it affects the way I do some things. And so, it just took a while. We kind of eased into it through that.  

 

Jim thinks his MS has given his children a more complete world view.

Jim thinks his MS has given his children a more complete world view.

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Now they're very understanding, and obviously, very helpful. In a lot of ways now, I’m-- I'm happy to have that. I'm happy that they're able to grow up with-- or they were able to grow up with somebody who has a disease so they have that understanding, that-- that better understanding of what people in that position might be going through. It's a-- it's a different perspective, I think, a better perspective to have, a more complete world view.  

 

Jim’s advocacy work around MS gives him a sense that his life was worth living.

Jim’s advocacy work around MS gives him a sense that his life was worth living.

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INTERVIEWER: It does, yeah. So it certainly sounds like people perceive you as a strong advocate and positive person. And then, wondering kind of what those pieces mean to you or how you see those in terms of your own sense of yourself.  
I mean-- it kind of-- it confirms a lot of the strengths that I always knew that I had but I kind of resisted because I thought [AUDIO OUT]. So you know, when I talk about strength, I'm talking about stuff that's, like-- so you can take a real-- like tests to figure out what your strengths are. And I used to have a [AUDIO OUT] for-- what's the big survey company in DC or near DC, the one you always hear about? Anyway, he had us all take the Clifton Strengths finder, which he helped put together. So I had taken that, and my strengths were not what my peers were, and that was kind of embarrassing to me because I wanted my strengths to be more strictly research and learning related. I just figured I should-- that's the kind of person I am now. I want to be identified as this person. And it wasn't. It was-- it was my strengths were a lot different, but they really fit well with the whole model of this MS-advocacy thing because I-- I my strengths are harmonizing.  

 

 

Jim tries not to spend his time worrying.

Jim tries not to spend his time worrying.

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I don't spend my days worrying. A lot of people talk about that, how you worry every day about what tomorrow is going to bring and stuff. I-- I don't elect to live my life in fear. I'm not going to worry about that. I just do what I can you know-- every day."  
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I've figured out ways to manage what I do, and I don't think about it at all anymore. I don't think of, oh, this is going to be hard, because you know it's been hard for you know half a dozen years or more. It's like, why worry about it twice a day, every day you know? At this point, that's just how things are, and I just do my best and move on. I don't worry about it too much. 

 

 

Jim felt dismissed when trying to get diagnosed because of his age and gender.

Jim felt dismissed when trying to get diagnosed because of his age and gender.

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So you know being dismissed-- you know in part, I felt you know like maybe it had a lot to do with the gender and age of my doctor at the time, and my gender and age, and with the shape that I was in you know. So, I was not-- in his mind, I was a manly man and so I-- I , at least that's the way I pictured it. That might not be a fair assessment, but that's really how it turned out.  

 

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