Bianca

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.