Bianca
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Bianca experienced optic neuritis her freshman year of college, her first MS symptom, though it was not called that at the time. She remembers looking at her music score when it went white. In her one eye, everything was white. The neurologist who she saw at this time told her that there was a one in five chance that it was MS. Bianca was given a steroid shot and her vision came back with no vision impairment. For 23 years, Bianca did not have any symptoms. After the birth of her second child, she did not seem to be bouncing back as quickly; she attributed this to exhaustion from chasing a toddler around. She remembers moving very slowly in the summer heat. Though she knew that heat sensitivity was an MS symptom, she kept slogging along. A couple of years later, Bianca recalled feeling weird, and her left leg dragging a little. Bianca’s brother, a pulmonologist, suggested that she see a neurologist. In 1993, after receiving an MRI, the neurologist diagnosed Bianca with MS and suggested that she see a doctor that has been using a recently developed drug called COP1, or copolymer 1. Having two children and really not knowing what the outcome was going to be when she received her diagnosis was devastating. At the same time, having a diagnosis provided some relief as she could now say, “OK, now I know it is MS.”
Unfortunately, COP1 was inconvenient for Bianca because it was a daily injection that required refrigeration. Despite these COP1 injections, nothing seemed to help, and Bianca seemed to be going down at a steady rate no matter what. After a while she switched to another drug called Avonex which was another weekly injection, but things started getting more difficult. Her left arm was not working properly which made it difficult for her to work. Bianca is a pianist and was a music teacher at the time. Her MS was making it difficult for her to play the piano and move around her music classroom. Two years after her diagnosis, Bianca was forced to quit her work because it was just getting too tough. Bianca’s doctor switched her to Betaseron but nothing got better. Walking became even more difficult, and her balance worsened which caused many falls. At first, she would fall forward and be able to catch herself and get right back up but eventually, she was unable to get up from the floor if she fell; life was getting scary. In 1996, Bianca began using a cane outside of the house and in 2014, she stopped being able to walk altogether and ended up in a wheelchair totally full time.
The final medication Bianca took was Novantrone. There is a maximum on the lifetime supply people are allowed to take and Bianca had reached that maximum, but it did not seem to do anything for her symptoms or disease progression. Since then, Bianca has not been on any medication for her MS. For symptoms, Bianca has only tried one medication: a muscle relaxer for spasticity in her left arm. Unfortunately, Bianca was never able to get to an amount that would help her arm and it would make her really sleepy to the point that at ten o’clock in the morning, she would be asleep again. Bianca is an early riser, and she loves her mornings which made it difficult to take this medication, especially since it was not helping her arm. Currently, Bianca’s left arm is curled up and cannot be straightened without physical force which is painful and gradual. Bianca also has lymphedema due to inactivity which adds to the heaviness in her legs.
One of the toughest parts of Bianca’s MS was not being able to do things as easily for her children as it seemed like everybody else could do. Having a babysitter helped Bianca take things one day at a time, but walking was hard, which made it difficult for her to pick up and drop off her kids. In a way, it was a relief to stop working; her job ended on a good note with Bianca receiving a teaching award and a commendation. After quitting her job in the city, Bianca and her family moved to the suburbs where they had the support of family members. Bianca faces significant mobility challenges, including an inability to drive, difficulty climbing the stairs in their multi-story house, and inability to use a stairlift because she needs assistance to move from one stairlift to the next. Bianca’s life is now on one level as she now sleeps in her living room in a La-Z-Boy while her husband sleeps in a bed alongside her.
Bianca’s advice for people facing a similar situation is to not be afraid to ask for help. “It’s good to be as active as you can for as long as you can. But there’s no shame in eventually not being able to do the great activities you used to do.” Her advice for parents is that “you don’t have to be some kind of super mother or dad,” if you feel exhausted, take a nap, or relax. She also wants everyone to know that if someone can’t walk, or gets tired, or whatever, that they’re not lazy. Bianca is happy for the things she is still capable of, but she realizes that people with disabilities are still looked down on. Bianca is very bothered by the stigma that she experiences from being in a wheelchair. Bianca has noticed that people tend to define others based of if they are in a wheelchair or not and wishes that doctors would not use being in a wheelchair as a worst-case scenario. One of her biggest concerns is being sedentary as she is aware of the damage it can have on a person. Bianca feels that she has been slowly and gradually adapting to things that she loses the ability to do.
Bianca’s abilities gradually deteriorated.
Bianca’s abilities gradually deteriorated.
This is more a slow just gradually adapting, I guess, to things that I lose in terms of my ability to do stuff. It does kind of sneak up. So, I would think, a year ago, I was able to get a gallon of milk out of the fridge, kind of tuck it under my left arm in a weird way. But I could actually lurch from the fridge to the kitchen table, and even open that milk and pour a cup, stuff like that.
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And then when those things become impossible, you think, wait, when was that? I used to be able to do that. And I don't know when the last time was really. But I can't do that anymore. So, there's a lot of stuff like that. Or a year ago I might think, yeah, I was driving around and in carpooling, and now I'm not. But some of the stuff was just so gradual. I can't say, oh, well that was the last meal I ever cooked. I don't know when. But just you kind of make adjustments. Or the last trip that I was able to make to the grocery store myself. I have no idea. It was a long time ago. But there was not one moment where I said, “OK, this is it. I know the trips to the grocery store are over.” It was just gradual.
Bianca had side effects while taking a muscle relaxer.
Bianca had side effects while taking a muscle relaxer.
For symptoms, there was only one medication I tried. It was a muscle relaxer. I'm blanking on the name. It was a pill that I took. Some people have a patch that they can have the drug delivered by. I really can't remember the name of this. It was a muscle relaxer.
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I was never able to get to an amount that would help my arm. And it would just make me really sleepy. At 10:00 in the morning, I'd be almost asleep again. And I am a really early riser and I love my mornings, but it was just not worth it. I don't know how much it would have taken to do anything with my arm. But it didn't do the trick. So that was the only other medication I've taken.
Bianca never found a treatment that helped her.
Bianca never found a treatment that helped her.
INTERVIEWER: So, can I ask you more about your medications. So, when you were making these decisions about what medications to be on, who was advising you and giving you advice about what medications or treatments to take?
Dr. [NAME]. Every step of the way it was what he was suggesting. And he agreed with-- as part of my exams I'd have to walk, I think, 50 feet down his hallway. And he would be there with a stopwatch, timing me. And that kind of got worse and worse no matter which of these medications I was on. And finally, my last visit to him, I was just in the wheelchair. There was no attempt to have me get up and try to-- I couldn't do it. I wouldn't have been able to do it. But things like that just got worse and worse. Yeah, I think he could tell, every time he examined me, that certain things were just kind of falling apart. But it didn't seem to matter which medication I was on. I was continually on something for years. He kept switching them because-- I don't know why. I mean, he was the one that said, “Let's try you on Avonex®,” or “Let's try you on Betaseron®.” And somewhere in there was the Linomide® experimental drug trial that we stopped. And then the last thing was that Novantrone®. And I did hit the limit of what is safe to take.
Bianca gradually lost her ability to walk.
Bianca gradually lost her ability to walk.
Well, because everything was gradual, I've had to make just constant adjustments-- my husband has, my kids have-- of we used to do that, and now we don't. But it was so gradual that, OK, so BB-- my nickname is BB or Bianco-- stops driving but can still be a passenger in anybody's car. And then gradually, to even be a passenger in the car, I couldn't get on the passenger side, my left leg into the car on my own. So, either a friend of mine-- and they're always reluctant because they're afraid they’re going to hurt you-- I'd be standing there, and they'd have to lift my left leg to get me just from the sidewalk into their car. And then my right leg was OK for a while, for years. So, I could get my right leg in. And I could shut the door myself. But it's those things that are gradual. So finally, there's no way, really, to get into the car period. Because I can't even really stand securely on my right leg anymore. So, I can't get into the passenger side of the car. But it's all so gradual. But yeah, it's just like things being chipped away.
Bianca remembers the last step she ever took.
Bianca remembers the last step she ever took.
But I literally remember my last step, where after that it was no more walking. I was just sitting in my little stair lift seat, which I would often just spend time in at the bottom of the stairs. I'd read. There is a little bathroom right near the bottom of the stairlift. So, I was able to kind of lurch in there myself. And I'd push the stairlift button that would get me up a few inches to whatever height I wanted, then I'd step down, grab a table, and sort of lurch into the bathroom. It was bizarre but it worked. And one night I just couldn't do that anymore. I could not make my legs move to do that. And I sat sort of right back down in the stairlift. And that was kind of the last step I ever took.
Bianca relied on neighbors to help get her kids to activities.
Bianca relied on neighbors to help get her kids to activities.
INTERVIEWER: Who was helping you get the kids to and from school and to activities?
Some very, very kind neighbors. I mean, I used to be one of the carpool moms, getting them to school. So essentially, I dropped out being able to do much of anything. My husband did some, as much as he could. And nobody made me feel terrible about it really except for my son. But the great neighbors, just the carpool, they would swing by. And I didn't have my carpool turn anymore. And we managed it. There were also school buses in [LOCATION] for everybody. So yeah, it was a combination of driving kids to a sports thing maybe. But eventually they were both able to take buses home from school.
Bianca advises people to ask for help when they need it.
Bianca advises people to ask for help when they need it.
Well, first of all, don't ever be afraid to ask for help. And don't have any pride that you don't need help. Because there are people who just they want to be feisty and show the world that the MS isn't getting them down. And the MS has this little magazine a couple of times a year. And it's always really inspirational. But people should just-- if they need help, they should ask for it. It's good to be as active as you can for as long as you can. But there's no shame in eventually not being able to do the great activities you used to do. And I mean, for us here, the asking for help was having people drive my kids around. But it's in a lot of ways we don't hesitate to ask. I can't even think of any examples right now. But yeah, I mean, I guess that's what I would say to people with MS.
Bianca asks about research focusing on progressive MS.
Bianca asks about research focusing on progressive MS.
And I guess I would ask, are there current studies about secondary progressive MS that the exacerbating-remitting, I've been told, is easier to study. Because you could say, Mrs. Jones had 12 attacks last year. And with this medication, she has four attacks. So, it looks like things are getting better for-- this is great. So that's fine. They can measure the concrete episodes that people have and what medications do or don't do for them. But with secondary progressive, I'm not aware of much that's done, partly because it's really hard to study. And in my case, everything has been so gradual that there's no way to say, well, this has made [NAME] able to do this. And she couldn't a few weeks ago before the medication, or a few months ago. It's really hard to measure. And I think there hasn't been as much studies about secondary progressive MS.