The One Sure Thing About MS
Jesse met his wife at a college dance. When they first started dating, she told him that she had multiple sclerosis (MS), a disease of the central nervous system (CNS).1 Because she seemed fine physically, he didn’t stop to consider how the disease might affect their lives if they ended up together. “I loved her, the disease was part of who she was and is, and we decided to just address complications as they came up,” he says.
The couple married in 1999 and moved near San Antonio, Texas, where his wife currently is a middle school teacher, Jesse works at a call center, and they are devoted to their three dogs. Over the years, Jesse’s wife has had episodes of fatigue, trouble walking, and several falls. He tries to make her feel better when she falls, making her laugh by rating her spills based on grass stains and scrapes on her knees. However, sometimes the impact of her MS can be more frustrating, like having to cancel plans last minute.
“As we started spending more time together, it became increasingly difficult to predict how she may feel at any moment, which has been hard,” says Jesse. “I like to plan long-term, which is challenging without knowing what tomorrow may look like.”
Last-minute changes to one’s schedule can be a common factor in the lives of people with MS. Most often diagnosed in people in the prime of their lives (20s-40s), MS affects every person differently and its symptoms – either periodic relapses, when symptoms worsen, or chronic problems with walking, numbness, moody emotions, and fatigue – can happen at any time.1,2
To better understand the everyday impact of these symptoms, Genentech conducted a national survey of more than 800 people living with MS and MS support partners, called the MS MindSet Survey. The results showed that the unpredictable nature of this disease continues to be a major challenge for people impacted by MS – inhibiting their social lives and willingness to make long-term plans.
MS nurse practitioner Carrie Lyn Sammarco, DrNP, FNP-C, MSCN, NYU Langone Medical Center Multiple Sclerosis Comprehensive Care Center, sees these challenges at her work every day. “We all agree that unpredictability is present in MS,” she says. “For patients, it’s a question of coping without knowing what each day will hold. That uncertainty extends to the point where patients and their partners are asking: ‘How can I have a five-year plan if I don’t know what’s going to happen tomorrow?’”
Jesse works hard to plan activities to account for how his wife may feel. “If we’re going to a sporting event, I allow for enough time to walk from the car because that can take a while. I also know that if we tailgate, we may likely leave the game early if she isn’t feeling well.” Even with planning, Jesse sometimes goes to events without his wife. “Certain things, we just have to say, ‘It’s not a good idea to do that,’” he says.
For people with MS, the unpredictability can evolve into stress, depression and anxiety, says Sammarco, taking a toll on the couple. More than half of the support partners surveyed by Genentech said that MS has impacted their relationship.
To help mitigate some relationship stress, Sammarco advocates for education and strong communication. “Knowledge may dispel myths that can cause anxiety and when a support partner better understands MS, they may have an easier time supporting the person they love,” says Sammarco. “They don’t have to be afraid to ask questions, because they know that they can find answers.” Patient advocacy and support groups can be of great help to find information.
Unpredictability is an Everyday Challenge
To better understand what everyday life is like with MS, Genentech conducted the national MS MindSet Survey of more than 550 people living with MS and 250 support partners in the U.S. The survey uncovered that the unpredictable symptoms of MS are impacting the way people living with the disease approach their social commitments, as well as the kind of help they need.
Following is a summary of key insights and statistics from the survey.
Social Impact of MS
- The majority of people living with MS said they not only miss out on daily activities like summer outings or sporting events (85 percent), but more than half (60 percent) said they avoid making social or long-term commitments altogether. The most commonly missed activities were:
- Summer time outings (56 percent)
- Social outings (56 percent)
- Shopping (48 percent)
- Sporting events or exercise (45 percent)
- More than one-in-three support partners (35 percent) also said they limit their own social commitments because they don’t know how their loved one will feel
- When it came to vacation and travel, 37 percent of people with MS and 50 percent of support partners said they have missed these activities because of MS symptoms
Daily Impact of MS
- To help them combat the unpredictability of MS, 81 percent of people with MS and 71 percent of support partners wished most for help with everyday chores – which is 2 times greater than those who wished for help with financial tasks (41 percent overall), self-care (35 percent overall) or family care (26 percent overall)
- The most common chores and activities respondents said they needed help with:
- Cleaning their home (52 percent overall)
- Running errands (43 percent overall)
- Cooking/meal prep (41 percent overall)
- Performing other household chores (41 percent overall)
- Going food shopping (37 percent overall)
KRC Research conducted this research via an online survey of a total of 552 people living with MS and 250 MS support partners over the age of 18. The survey was conducted between July 8 and September 16, 2016.
This is unpublished data. All rights reserved.
In addition, she says that addressing issues together – whether about planning, sex, savings, activities, or the fact that caretaking is causing signs of burn-out in the partner who doesn’t have MS – is the first step to resolving them. For example, she says partners can seek support with completing simple tasks around the home. In fact, according to Genentech’s survey, 81 percent of people with MS and 71 percent of support partners wished most for help with everyday chores, like cleaning the house.
Sammarco emphasizes the importance of both partners taking care of themselves and getting support outside of the relationship. “Often the support partners overlook their own needs because they’re taking care of the person with the disease, or they feel guilty about taking time for themselves,” she says. “Therefore, support partners need to find ways to care for themselves – exercising, socializing, meditating, or anything that helps regenerate their bodies and spirits.”
Jesse and his wife often address daily challenges together, and Jesse tries to make long-term plans based on what he knows about the disease. Anticipating the unpredictability of their future, Jesse has saved money for retirement as well as for expenses relating to MS care. Additionally, they have moved into a one-story, wheelchair-accessible house, just in case there comes a day when his wife cannot navigate the stairs on her own.
Despite the long-term contingency plans, Jesse knows that their lives are going to be unpredictable. “I can’t control if my wife is going to fall, so I don’t focus on that.” Nor do they dwell on worrying about the future. “If we always had it in our thoughts that her MS will get worse, we couldn’t function, so we don’t even head down that road.” Instead, he focuses on the positive. “My wife has good days and bad days like everyone else,” he says. “The difference is that by living with MS, she’s dealing with more than most other people. My role as her partner and her husband is to love her, support her and remember to take care of myself.”
MS advocacy organizations can help people living with MS and their loved ones navigate the everyday impact of unpredictable MS symptoms. To learn more, people can call the National Multiple Sclerosis Society (1-800-FIGHTMS), the Multiple Sclerosis Association of America (1-800-532-7667 extension 154) or the MS Foundation (1-888-MSFOCUS).
The National Multiple Sclerosis Society, Multiple Sclerosis Association of America and MS Foundation receive unrestricted educational grants from Genentech.
1. Multiple Sclerosis International Federation. About MS: What is MS? Available at: https://www.msif.org/about-ms/what-is-ms/
2. National Multiple Sclerosis Society. MS Symptoms. Available at: http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms