Julia
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Julia was very active and a self-described high achiever: dancing, traveling, playing the organ, and studying in the United States on scholarship. About four or five years prior to her diagnosis, she had experienced symptoms such as numbness in her face and balance issues that she did not pay much attention to as they quicky went away. About six months after returning to her home country Latvia, Julia developed optic neuritis and was diagnosed with Multiple sclerosis (MS). Julia’s diagnosis felt like a life-changing experience because everyone was telling her that MS is a very bad disease and after seeing lesions on her MRI, her nurse told her that she was very sick, without providing anything more substantial. Being in Latvia during the late 1990s, Julia did not have access to the internet, know any other people with MS, and had no idea what this disease would mean. Her only source of information was a dictionary that said MS leads to paralysis. After diagnosis, Julia began taking steroids for treatment and felt healthy.
Julia returned to the United States for a high school reunion where she happened to obtain a job. Julia established MS care in the United States, and tried several medications – Rebif, Tysabri, Ampyra, and Rituximab – none of which slowed the progression of her MS. She faced a lot of stress trying to keep her job which she suspects contributed to her final relapse when she was thirty years old. After returning home from a trip, Julia felt her leg muscles jittering until she suddenly could not walk anymore. Julia thought that it was going to go away but it never did despite steroids and treatment. Today, Julia has been on Ocrevus for two years and she has not seen a major progression in her symptoms. She also takes Baclofen, Tizanidine, and prescription vitamin D among other medications. Every time Julia started a new medication, she was hopeful and convinced that it was going to work, but they had no effect on her symptoms or slowing her progression. Julia experiences mobility challenges. She first started with a cane but after struggling with getting in and out of elevators and a fall incident in the elevator, Julia decided to switch to a walker. Because her left arm atrophied, Julia has to use a Hemi Walker which is only for one side and does not require both hands. She chooses not to be in a wheelchair because she sees how inaccessible and inconvenient it can be. For 15 years, Julia has been disabled and feels it getting worse as she feels herself getting slower and finding that it is becoming a greater challenge to walk or to do anything.
MS has changed Julia’s social life in that while she can still see her friends, she is unable to go out and finds it difficult to keep appointments to meet with someone. Julia has a really good friend who supports her physically and emotionally by taking her out in a wheelchair and bringing her homemade food. The main challenge for Julia is walking from her bedroom to her kitchen as it takes her about 20 minutes. While Julia can feed herself, it is difficult for her to prepare her meals, and her time management is a major challenge. Julia tries not to think about her MS in order to not dwell on it, but she does find it sad that she can’t cross the street. Fortunately, the place she lives in is quite accessible with Uber. She is always super positive and convinced that it will get better and even if it does not, she is trying to do everything to make it happen. Her experience with MS has allowed Julia to discover the goodness in people. She had never realized before that people are so generous and compassionate. Julia’s advice for friends and family on how to support people with MS is not to impose their own judgement and not to offer their treatment. Julia still sees herself as the person she was before MS, as someone who can make her own decisions, someone who expects respect just as she did before, and someone who is successful.
When Julia lost her first job in the States, she had to purchase her own insurance. Unfortunately, Julia was uninsurable due to her MS. Eventually, she was able to obtain insurance through work. Currently, Julia feels happy with her care team. The doctor and the nurses are completely dedicated to providing her with good care. Julia uses electrodes to help strengthen her muscles and slow progression. She also occasionally sees a psychiatrist. Hope has kept her going through all the setbacks and disappointments, knowing that she just has to wait and struggle a little bit more for it to get better.
Julia relied more on her doctors than on the internet.
Julia relied more on her doctors than on the internet.
INTERVIEWER: Do you do a lot of searching on Google and other things about MS and medications?
No.
INTERVIEWER: No?
No, because just like I told someone before, however much I can find out or know, I will never have this understanding that the doctor might have or will have.
INTERVIEWER: OK.
So, no, I completely rely on my session. And really, finding some information on Google is not equal to knowing something. Just because I remember that studying, for example too, if you want to write a paper, you have to reference and compare all kinds of sources, right? You cannot rely on one source. So, I don't even bother now.
Julia switched disease modifying therapy several times.
Julia switched disease modifying therapy several times.
So right after I was diagnosed, well, a few months after, I started with Rebif®. And then when I first saw the doctor here in the States when my left arm started tingling, he gave me Tecfidera®, just because I myself made a mistake. He asked me, what medication I had took before, and I remembered something was better and because Rebif® was manufactured by a company that seemed similar. So basically, I forgot. But he gave me a medication. I probably should have continued on Rebif®, but I did not. For my own fault, maybe, because I forgot. And so Tecfidera®, that did not work. And I went on Rebif® again, and that did not work already anymore, too. And then they gave me Tysabri®, that did not work. Actually, my doctor even told me that it's probably going to-- if I don't take it in a month-- or maybe it's already too late. But he said, “If you don't take it in a month, it's not going to work.” And it did not work. And I don't know if that month was crucial or it did not work because it only would have worked two years earlier. So basically, Tysabri® did not work. Then I took Ampyra®. And again, it did not work although many doctors thought that I'm an ideal candidate. And then I tried rituximab, and that did not work. I had a few plasma transfusions. Yeah, that's nothing. So yes, Ocrevus® is probably the only thing that works now. Well, maybe I'm just imagining that it works because I have not seen-- until I started sitting at home all of the time, I have not seen a major progression. But on a daily basis, of course, I'm taking baclofen and tizanidine and the millions of other medications. And I'm also taking Ampyra® although it doesn't work. But who knows, so I keep taking it.
Julia recalls how many treatments have not worked for her.
Julia recalls how many treatments have not worked for her.
And so Tecfidera®, that did not work. And I went on Rebif® again, and that did not work already anymore, too. And then they gave me Tysabri®, that did not work. Actually, my doctor even told me that it's probably going to-- if I don't take it in a month-- or maybe it's already too late. But he said, “If you don't take it in a month, it's not going to work.” And it did not work. And I don't know if that month was crucial or it did not work because it only would have worked two years earlier. So basically, Tysabri® did not work. Then I took Ampyra®. And again, it did not work although many doctors thought that I'm an ideal candidate. And then I tried rituximab, and that did not work. I had a few plasma transfusions. Yeah, that's nothing. So yes, Ocrevus® is probably the only thing that works now. Well, maybe I'm just imagining that it works because I have not seen-- until I started sitting at home all of the time, I have not seen a major progression. But on a daily basis, of course, I'm taking baclofen and tizanidine and the millions of other medications. And I'm also taking Ampyra® although it doesn't work. But who knows, so I keep taking it.
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And Ampyra® is—well, all of those medications, especially Ampyra®, the hope was it will make me walk faster and easier, and it did not. And rituximab, the same. They even gave me plasma, plasma transfusion, plasmapheresis it was called. And yeah. But every time, I was so hopeful. I was convinced that it's going to work. So, it's not that I was negative or something, but just objectively, it did not make me work better, or faster, or easier. So, nothing has changed after I took those medications. That's how I know it did not work.
Julia has a developed a system to independently prepare meals.
Julia has a developed a system to independently prepare meals.
Yeah, so the main challenge is to get from my bedroom to my kitchen, which is just-- so my walking speed a few years ago, when they measured before my visits with the doctor, it was 25 feet a minute. So now that I don't walk and I basically crawl from my bedroom to my kitchen, it takes me, I don't know, 20 minutes to get there. So that's a major challenge. But when I'm in the kitchen, it's OK. I have canned soups that I like to eat. I order from Safeway, and they're great. They deliver, they come as far as the kitchen. They put everything there, they bring me water. And so, I order food from Safeway. And then I can prepare very few things. It's not that easy because pots and frying pans, they get heavy, especially after a while. And my water, if I have to carry it to turn from the sink too. What really helps me actually is I have an induction stove and it makes a huge difference. So basically, just push with one finger and then it starts heating up. And so, induction-- and I don't even remember how I found out about it because I have never-- seen it at any of my friends or any acquaintances. Maybe I was browsing the Amazon somehow, because I know I ordered it from the Amazon. But basically, what I'm saying is that to turn from my sink when I pour water into a little pot and put it on that induction stove, that itself is a major challenge already. But you know, it's not undo-able. It's just that everything takes so long. And time management is a major challenge for me. But I can do that. So, I put that pot on this flat, little, small induction stove. And then I boil it, or I put soup in, canned soup there, or I can fry some things like in a frying pan. So, I can feed myself. Fortunately, it's a big, big, big portion for me, that it's the right arm that works, not the left.
Julia still sees herself as the same person.
Julia still sees herself as the same person.
Even when I-- I smiled at myself when I wrote an email to my doctor recently. I did not call myself that, I'm such-and-such patient, but I said, and such and such student. Seriously, because I somehow, I still-- and that's when I-- it's kind of upsetting when people look at me as a MS person and I still see myself as a-- healthy person, almost. Not healthy, but completely adequate person. Maybe that's not it. I see myself as a-- as the person I was before. So as someone who can make my own decisions, and someone who expects respect as I had before, and someone who is successful and could do things even more than other people could or wanted to. So I just have this pride still, yeah, that I can't abandon.
Julia advises against suggesting treatments and offering solutions.
Julia advises against suggesting treatments and offering solutions.
Well, the first thing would be not to impose their own judgment and not to offer their treatment. Because it's actually, it is a little bit annoying. And I know that people, many people are just trying their best and trying to help you. But like always offering solutions, thinking probably that the person cannot think for themselves and cannot evaluate their options. So of course, every person-- even the same for going into the wheelchair, as if you know in this situation, I never heard of it and I never considered this option. But obviously I made this choice, so it is right for me. So, yeah, why would they think that they have the solution.
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So obviously, it's nice when people offer their suggestions. But again, to insist on it would probably not be right. And somehow, treat with more respect to the fact that people have probably considered their options. They made choices that are best for them. Yeah, so that's the main thing.
Julia’s first MRI caused her and others a lot of concern.
Julia’s first MRI caused her and others a lot of concern.
And then after I had my MRI, the nurse said-- because they took me to a hospital to examine me afterwards, the neurologist suggested that I go to a hospital, and that's when I had my MRI. --- And of course, they saw that I have had a lot of lesions. But then, I knew that and everything, but I really did not know what to expect. I just knew that it's going to be really bad and everyone is being very concerned about it. And the nurse, when she saw my MRI, she's like, “oh, we did not know, but you're very sick, you can't go anywhere.”