Linda
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Due to Linda’s cognitive symptoms, her husband, Jerry, helped her throughout the interview to tell her story as well as his.
Linda came home from work one night in 2017 crying as she described how she was feeling to her husband. Linda was experiencing acute symptoms such as headaches, seeing double, and difficulty walking. After three days in the emergency room, where she received a CAT scan and an MRI, the neurologist told Linda that she had Multiple sclerosis (MS). A function check of her body found that while her body was fine, her brain was affected. She could continue to walk but as the days went by, Linda struggled more with working and retired in 2018, less than a year after diagnosis. Linda worked as a registrar where she earned many awards for her work and was adored by her coworkers. She is now retired and receives disability.
Linda’s MS was so rapid that her doctor gave her massive doses of medication to slow the progression until arrangements with the insurance could be made for her to receive Ocrevus. Linda’s insurance company originally said that they would not pay for it but did cover it after her doctor intervened. The copay was also a problem for Linda but fortunately, the Ocrevus company offered to pay for the co-pays. In 2018, Linda had two infusions of Ocrevus which stopped the progression of the MS but what damage was done was already done. Linda is on the generic version of the drug Ampyra, with the help of GoodRx since her insurance would not pay for it even with a copay card. Ampyra helps Linda primarily with her fatigue. Linda’s husband wishes that the insurance companies would be more compassionate to patients and his advice to others navigating insurances is to be on the phone, fight with insurance companies, just be prepared.
Today, Linda’s memory is fading. She is no longer able to read, work the computer, use a calculator, keep track of bills, or drive. At first, Linda could still drive and remain independent but after a small accident, they decided that it would be best if she did not drive anymore soon after her diagnosis. When she was driving, Linda would not remember how to get back home, or she could not remember where the car was parked. MS has also drastically changed Linda’s husband’s lifestyle as he always has to make sure somebody checks in on her, and it has severely reduced what he can do freely. Linda’s memory and speech changed significantly, with increased confusion in the mornings, increased sensitivity to heat, and fatigue. Linda manages the fatigue by taking naps several times a day. Linda greatly enjoys going to see her grandchildren, son, and daughter. Linda is very upset that she is unable to do a lot of things that she used to be able to do, especially being able to drive to see her grandchildren or take them places. Linda’s grandchildren did not understand what was happening until they noticed that Linda spoke differently and had trouble remembering their names. After trying to explain to them what was going on, the grandchildren finally understood Linda’s diagnosis. Linda’s husband worries about the possibility of Linda being in a wheelchair and how far this disease is going to go with her.
Linda is not taking any active drugs against the MS itself because her MS is not active or progressing. Linda’s doctor does not know what is causing her memory to fade and they are looking into working with a different neurologist and drugs for people with Alzheimer’s or dementia. Linda’s husband hopes to find a miracle drug that could help with her memory even if it is a stab in the dark. Linda’s husband feels that they cope well through a lot of crying, a lot of laughing, but mostly laughing, because “crying ain’t going to help.” Linda’s husband jokes with Linda all the time and notes that MS has not hurt her sense of humor. Linda’s husband’s advice on how to support somebody with MS is to maintain your relationship: “Support, call, even if it’s how you doing today,” because it can help get their mind off of MS.
Linda and Jerry describe both positive and negative experiences with clinicians
Linda and Jerry describe both positive and negative experiences with clinicians
Neurologist in [PLACE] was a condescending S-O-B. And the way he put it to her was very poor, very scaring-- scary for both of us, very blunt, almost like he enjoyed. And that was one of the reasons we never went back to him and we searched for [INSTITUTION 1] doctors-- neurologist.
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INTERVIEWER: So, you've said you've been very happy with the doctors that you've had at [INSTITUTION 1] Can you talk a little bit more about that, like what's been positive about your experiences there?
Well, I think it's their staff. Even if you call them, they're very helpful. It's not like they're trying to get you off the line quick. And the doctor does not seem to be in a hurry like he's in a time frame to get her out of his office. He's always been very patient with us. And there were several times where my son and my daughter came along, and my daughter-in-law came along to ask the doctor all kinds of questions that they had.
They've been very patient. They're very nice to us. I can't say enough. It doesn't matter who it was contacted me, or I called down there or emailed. They're very patient with us and very nice. It's not like they want to get us off the line so they can do something else.
Linda and her husband Jerry use humor to cope with Linda’s MS.
Linda and her husband Jerry use humor to cope with Linda’s MS.
But we seem to cope well. A lot of crying, a lot of laughing. We gotta laugh at everything, [NAME], because crying ain't going to help. So that's what we try to do. I joke with her all the time. She hasn't lost her sense of humor. That hasn't-- the disease hasn't hurt that yet. She still has that part of her personality.
Jerry learned to “just deal with” his wife Linda’s MS.
Jerry learned to “just deal with” his wife Linda’s MS.
Ain't no miracles out there, drugs, religion, or otherwise. That's the reality of it. We've got to somehow figure out how to live with it. A lot of anger at first. And then you get past that stage. And then you get past that stage and you get to the realization that it's the way it's going to be. Then you learn to deal with it. It's never fun, but you just learn. You get used to it. You get around it. Deal with it. It is what it is, isn't it?