8 Tips for Coping With a Diagnosis of Primary-Progressive Multiple Sclerosis (PPMS)
Being diagnosed with any incurable disease is distressing, but there are ways to improve your quality of life when living with PPMS.
Primary-progressive multiple sclerosis (PPMS) is known for being an especially debilitating form of multiple sclerosis in which disability steadily worsens over time, sometimes quickly. This form of MS affects about 10 to 15 percent of people diagnosed with multiple sclerosis.
Typically, people with PPMS do not have distinct periods of relapse or remission, as is the case with more common form of MS, relapsing-remitting MS.
While there are approaches for controlling the symptoms of PPMS, treatments for the condition are limited: Only one medication, Ocrevus (ocrelizumab), has been approved by the U.S. Food and Drug Administration (FDA) for slowing the progression of PPMS.
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First the Shock, Then a Plan for Moving Forward
Because PPMS is progressive and often disabling, receiving a diagnosis can be traumatic.
Beth Broun, a New York City native who now lives upstate, received her diagnosis 10 years ago. The 56-year-old first noticed something was wrong when her left leg began feeling weak, and she started tripping over her left foot.
“My husband and I were walking on the Upper West Side [of Manhattan], and my left foot completely flopped,” Broun says.
Her primary care physician sent her to a neurologist who was not an MS expert. He advised her to get physical therapy, but after six months nothing had changed.
It took her two years before she consulted another neurologist who ordered a brain scan and spotted the tell-tale signs of MS.
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“I freaked out,” says Broun. She called her husband and told him the news and then did what she thought was the next most essential thing: “I went to Bergdorf Goodman, and I bought a $3,500 handbag, because that’s what you do when you’re diagnosed.”
After getting over the initial shock of the diagnosis, Broun started the gradual process of coming to terms her condition and then creating a plan to deal with the symptoms. Here are some tips that can help anyone who is newly diagnosed with PPMS.
1. Learn Everything You Can About the Condition
As director of the MS Comprehensive Care Center at Stony Brook Neurosciences Institute, Patricia Coyle, MD, treats patients with PPMS and understands why a diagnosis is especially traumatic.
“As you learn more about the disease, you realize that primary-progressive MS is a more significant form, where there is basically inevitable disability,” says Dr. Coyle.
Coyle stresses, however that an education program is “extremely important,” because it can reduce fears. The more people know, the better they are able to deal with the illness and to find the information they need about therapies and disease progression that can provide them with the hope to go on and develop coping skills to live with the illness.
Coyle says that people need to know that they can “clinically stabilize, sometimes for up to several years, and they can even see some improvement — it’s in the minority, but that can occur.”
Because the pace of worsening of PPMS doesn’t tend to change over time, people who have it have some idea of what to expect from year to year.
Still, it’s important to have medical providers who can talk with you about what you’re experiencing.
“I think you want to have a relationship with your healthcare providers where you are free to ask any questions that you have,” Coyle says.
A good starting point to find answers to commonly asked questions about PPMS is the National Multiple Sclerosis Society (NMSS). The website of the Multiple Sclerosis Association of America is another good place to find authoritative information about the various types of MS, including PPMS.
But, Broun cautions, don’t automatically trust all of the advice or assertions about MS that you might read online, even when a person appears to write with great authority. Some of what she read along the way convinced her that she might go blind or lose her ability to speak. Having a medical provider who can help you sort out what’s real and what’s not can be a big help in these situations.
Along these lines, Coyle cautions about internet scams that promise miracle cures and prey on desperate patients.
“If you read, ‘We have stem cells that will improve your MS; you only need to pay $20,000,’ that's not legitimate,” she says. “There is no documented stem cell treatment for MS at this point in time.”
2. Know That It’s Possible to Thrive and Work With PPMS
Having PPMS doesn’t necessarily mean you have to stop working. Its symptoms and progression are unique to each individual, so the illness doesn’t have to mean an end to career.
In an article for Roche Pharmaceuticals, professor Jérôme de Seze, PhD, the department head of the Neurology and Clinical Investigation Centre at the University of Strasbourg in France, wrote that most PPMS patients he deals with are “keen to keep working.”
Coyle emphasizes that a diagnosis doesn’t have to be a career-ender. “While this is a more severe form of MS, people can still continue to function for prolonged periods of time,” she says.
Because some of the symptoms — such as fatigue and cognitive impairment — may limit one’s ability to work, an individual may seek to work part-time.
The NMSS provides a legal guide for people with MS that addresses many workplace-related questions, such as "Am I obligated to tell my employer about my MS diagnosis?" and "Can I be let go from my job because of my MS?"
Work situations are always going to vary, but Coyle notes that some employers may be sympathetic.
“An informed employer could actually be potentially very helpful with regard to accommodations,” she says.
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3. Build a Trusted Health Team
Broun says that the No. 1 thing to do is to put together a trusted health support team. This can include a neurologist, primary care provider, physical therapist, and mental health professional.
In Broun’s case, it took some trial and error to find an MS care provider who felt right for her. But after consulting with different specialists, Broun found that Saud Sadiq, MD, a neurologist at the Tisch MS Research Center in New York City, provides guidance and treatment options that she believes in.
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4. Seek Mental Healthcare for Anxiety and Depression
A mental health professional can be a key member of your health support team.
“It’s not uncommon for patients early in diagnosis to go through an adjustment period of anxiety and some depression when they hear they have MS,” says Laura Safar, MD, an assistant professor of psychiatry at Brigham and Women’s Hospital in Boston and a psychiatrist who treats psychiatric disorders among people with multiple sclerosis. “Patients may have fears about their prognosis, and questions about what their progression will be like.”
“Individuals cope in different ways,” Dr. Safar says. “Some of them can be very proactive and want to learn about everything they can do to improve their health. Others can be overwhelmed, and avoid dealing with the diagnosis and treatment.”
Safar says that it can be helpful for clinicians to observe how different patients cope with their illness to understand what type of support or interventions they need — in addition to educating them about the diagnosis and next steps for treatment.
Doctors and patients alike should be aware that PPMS can affect a person’s cognition, or their ability to think, remember, and perform other mental tasks.
Depending on a person’s needs, appropriate interventions may include a neuropsychological evaluation to assess cognition, or a referral to a psychotherapist or psychiatrist to focus on emotional and coping issues. Mental health therapy may involve both talking through problems and taking antidepressants.
Rehabilitation therapies — including physical, occupational, and cognitive rehabilitation — can be tools to sustain and improve a patient's cognitive and functional abilities.
“From a psychological perspective, rehabilitation strategies, when combined with disease-modifying treatment, can assist in providing a sense of mastery over their illness,” she says.
Ultimately, Safar says that her goal is to help individuals figure out “how do I make this illness a part of my life, but not let it define the whole of who I am and what my life is about.”
5. Create a Personal Support Network
Safar notes that ideally, friends and family members should be part of the support network a person with MS relies on.
“I want to make sure that people are not isolated and not alone,” she says. “So I find out if they have friends or family they can talk to about their diagnosis. “
Safar recognizes that for some it can be difficult to even share they are ill. They are concerned that a partner may not be supportive or may turn away. Or they fear that they will cause too much worry among family members. “They want to protect their loved ones and their relationships,” she says.
Because she firmly believes that patients should not take this on alone, she advises some to take gradual steps toward disclosing information about the diagnosis and see how people close to them react.
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6. Use Online Support Groups to Meet Others With MS
In addition to seeking emotional support from friends and family, people with PPMS may also want to connect with one or more online groups.
Through participating in several MS groups on Facebook, Broun developed a deep friendship with another person with PPMS who lives in the Netherlands, and they each push the other to be proactive about their illness.
“We say we’re going to fight each other; we’re going to outrun each other,” she jokes. “He’s a force.”
For those looking for online support and connection, Broun suggests exploring Moodify, the PPMS Facebook page, as well as the International Progressive MS Alliance.
7. Develop an Exercise Program
While looking after your mental state is vital to living with PPMS, so is doing your best to maintain good physical health. Broun gets around nowadays with a walker. She says it’s “brutal” to see herself in the mirror that way, but without exercise, she might not even be walking.
“Exercise is the No. 1 thing to me,” says Broun.
When she was first diagnosed, Broun began working with a physical therapist to maintain mobility and function. She started doing leg presses and walking on an uphill treadmill for 10 minutes to build strength in her glutes, hip flexors, and hamstrings.
Currently, she meets with a personal trainer two times a week to work on her muscle strength and balance, which she describes as “incredibly weak.” Because Broun has foot drop (difficulty lifting the front part of her foot), she does special exercises to keep her foot up.
“My favorite exercise, which may not be specific for MS but makes me feel dynamite, is riding a spin bike,” says Broun. “You would never know I have a MS when I’m riding it, but as soon as I get off I can barely walk. I love the confidence and ego boost I get from it.”
On her visits with Dr. Sadiq, she also works with a new therapist on a special robotic machine, “which helps someone like me use muscles I haven’t used in years.”
To get started with exercise on your own, the Multiple Sclerosis Trust provides a series of strength, stretching, balance, and breathing exercises for people with MS to explore and use to build their own routine for physical activity.
Following a healthy diet is also important for maintaining strength and stamina. For Broun, this means sticking to a Mediterranean-type diet, primarily consisting of organic proteins and vegetables.
“At the end of the day,” says Broun, “I can control my exercising, and I can control what I can eat to feel good — otherwise, MS is an animal, and it’s going to take over my body.”
8. Explore MS Apps to Help Manage the Illness
Coyle recommends exploring the many MS apps on the market for tracking symptoms and other purposes.
“Apps have a number of different functions — they can help track activities, track what you’re doing in terms of exercise, and enable you to easily look up information related to MS,” she says.
The Multiple Sclerosis Clinical Care App, for example, contains current information on the diagnosis, classification, and management of multiple sclerosis (MS), concisely presented for use at the point of care.
Several apps are available that allow you to track symptoms. My MS Manager, created and supported by the Multiple Sclerosis Association of America, is one such example.
The National MS Society recommends Happy the App, a 24/7 phone-based emotional support service via mobile app that connects individuals experiencing everyday stresses, struggles, anxiety, or loneliness with exceptionally compassionate listeners.