Makenzie

Outline: Makenzie was diagnosed with relapse-remitting MS in middle school. She has participated in research studies but declined to participate in a clinical trial.
Background: Makenzie, age 25, lives in a very rural area with her husband, husky dog, and three cats. She works as a medical scribe and has a graduate degree in public health. Makenzie identifies as a White heterosexual woman.

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Makenzie was diagnosed with MS when she was 13 years old, after she started experiencing double vision. During her childhood, they “used a lot” of her MRIs for research but Makenzie was never in any trials. She “was offered” the opportunity to participate in trials “for a few of the newer pills” but she “didn’t feel comfortable.” Makenzie had concerns about trying something new and having her MS progress, so decided against it. She has “a lot of lesions” on her brain and it made her “nervous” to try a new drug she wasn’t sure “would work.” Makenzie finds other ways to participate in research, by sharing her story and experiences, because “you can’t have pediatric research without patients.”

 

Makenzie didn’t want to join a trial because “there was too much unknown.”

Makenzie didn’t want to join a trial because “there was too much unknown.”

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So I guess I just didn't want to try a med and then have it progress so bad. I feel like if I was off a med and tried a new one that I didn't know would work, it made me nervous. And I have a lot of lesions on my brain, like over 90. And I just, I didn't want that to keep going. So I've had those since I was diagnosed, but, I just didn't want it to progress. I-, there was too much unknown, I guess, for me. I'm just very nervous. I'm a nervous person. So I'm just, yeah, I didn't want to do it, so.

 

Makenzie’s primary care physician was not involved with her MS care.

Makenzie’s primary care physician was not involved with her MS care.

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She doesn't feel comfortable at all like talking about any symptoms or anything. Every time I ask her to do something, she'll just kind of be like, "Talk to your neurologist, like I know nothing." And I appreciate the honesty. Like I appreciate it. And she helped me like get my medical marijuana card and just because I was seeing doctors out of [LOCATION], so I had to see her because she was in, so-- but she's pretty good. Like she’ll just, she'll ask me how it's going, but she doesn't want to like get into it too much, so-- I have a pretty good relationship with her though. I'm just, yeah, it's just not like care that I, I don't know what I'm trying to say. I guess like I don't go to her too much for any issues other than like colds or whatever, so. 

 

Makenzie had a hard time finding care in her rural area.

Makenzie had a hard time finding care in her rural area.

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Yeah. I live in a very rural area, tiny town, like 1,200 people. So, the nearest hospital is 20, 30 minutes away. And it's just not-- there's one neurologist, and they just got her like three years ago. So, I mean, we were just like confused about where to go. But the quality of care here is a lot different than down there. I mean, it's just night and day-- which I think says a lot about like the rural healthcare system. It's just not, I mean, some people just don't get the care that they need here. 

INTERVIEWER: Mhm. 

So, yeah, and this area is just very like, I don't know, it's very weird. It’s not, there's no like healthcare system that I can just go to and be like, hey, I have neurological issues. I need to be seen. You have to be on a wait list for like six months to see her, and it's just, it's not good. So, my husband and I want to move, for sure, somewhere closer. But this is where we are right now. So, driving to [LOCATION] isn't really too big of a deal, so. It's just not a great area for healthcare, I guess. 

 

 

Makenzie compares the approach of two neurologists.

Makenzie compares the approach of two neurologists.

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I really did not click well with [NAME] because he's very [um] scientific, science focused, more about like how the drug interacts and how, you know, the drug works, instead of how I felt.
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And then I saw [NAME] at [INSTITUTION] in [LOCATION], and she just like talked to me like I was a person. And like she understood what I wanted. And she was like, "I don't want to do steroids like often unless you really, really need them." So she and I clicked really well. And I'm really happy that I found a doctor, finally, that I can click with. 

 

 

Makenzie’s young age made using a walker particularly emotionally difficult.

Makenzie’s young age made using a walker particularly emotionally difficult.

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It was, it was not good. I had to borrow my grandma's walker, or her cane, from her knee replacement surgery and I just felt like-- I was, I think, 22 at the time. I felt so like, I don't know, it was a weird experience. And using the walker, like I just felt like I was, I don't know, 90 years old, and I was 22. And it just, it gets depressing sometimes, I guess, and just not what you would expect as you're in your 20s. But it was the hand I was dealt, so I just used it. Most of the time I just stayed like on the couch. But thankfully, like after I got the infusions, I could walk fine and move fine, so. But, yeah, using the walker and like mobility devices has, it's just, it's weird. It's a weird experience for me.

 

Makenzie’s graduate program changed deadlines to accommodate her medication side effects.

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Makenzie’s graduate program changed deadlines to accommodate her medication side effects.

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But once I got into public health, I really like clicked with it. And I really, really enjoyed it. And I got an award for like outstanding graduate student when I graduated. It was just, and I’m really close with like my epidemiological professor still. So, I didn't really have a lot of flare-ups or anything during that. They were so understanding though. And I was having like an Ocrevus crap gap issue, and one of the professors was like, take your time. Do what you need. Turn it in at the end of the semester. And I was like, oh, my God, thank you. It's just refreshing because I was dealing with so much at the time. And normally, people aren't that understanding. So, it was just, that program fit really well for me. So, I'm glad that happened. 

 

Makenzie recalls how she felt about having to use a walker at a younger age. 

Makenzie recalls how she felt about having to use a walker at a younger age. 

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I had to borrow my grandma's walker, or her cane, from her knee replacement surgery and I just felt like-- I was, I think, 22 at the time. I felt so like, I don't know, it was a weird experience. And using the walker, like I just felt like I was, I don't know, 90 years old, and I was 22. And it just, it gets depressing sometimes, I guess, and just not what you would expect as you're in your 20s. But it was the hand I was dealt, so I just used it.