While
researchers are working to identify new and better strategies to stop MS,
restore function and end MS forever, people whose MS has become more
disabling—and their family members and friends—need information right now about
how to manage the challenges they face. With these goals in mind, the National
MS Society convened a group of key stakeholders – including people with MS,
support partners, Society staff and clinicians from the fields of neurology,
primary care, rehabilitation medicine, psychology, nursing, physical therapy
and speech pathology– to help inform the Society’s role in finding solutions
for individuals and families who are facing advanced care
needs.
“At the Society, when we face a challenge, we get the brightest minds together
and put the problems on the table,” said Cyndi Zagieboylo, President & CEO
of the National MS Society. “We need to pursue every opportunity to support
people with advanced MS in living their best lives.”
What It’s Like
People living with MS lent a vital voice to the process. “It’s going to be very
important as you think about this that you understand our lived experience,”
urged Lisa Iezzoni, MD, a health services researcher who has MS. “It takes me
about 10 times longer to do the most basic task.”
Karen Jackson, who lives with primary progressive MS, agreed. “Having advanced
MS means I have lost the ability to be spontaneous,” she said. “I am forced to
plan every minute of every day. The only thing more exhausting than planning my
day, is not planning. It takes an annoying sequence of action steps to achieve
even the smallest goal, like buying gas or parking the car.”
Resilience, however, rang through despite the challenges of advanced care
needs, which for both of these women includes wheeled mobility. “When people
ask me how I feel about my MS, I tell them that I’m not sick,” insisted Dr.
Iezzoni. “I just can’t walk.” Ms. Jackson added, “Explain to people what your
needs are. They want to help.” It’s worth the effort, she says. “Not
participating in life is not an option.”
If I Have to Use a Wheelchair…
Getting a wheelchair was noted to be a “line in the sand” for many people
living with MS, who often view the choice to use one as a loss of
independence. Meanwhile, by trying to stay on their feet, people might be
curtailing activities because of increased fatigue, or concerns about stumbling
or falling.
“One of our challenges is that the wheelchair is used to symbolize
disability,” said physical therapist Jean Minkel (Independence Care System. New
York). “The wheelchair should not be considered a failure of therapy.”
Dr. Iezzoni heartily agrees. “When I finally started using a wheelchair 14
years after my first MS symptom, it was like spring after a housebound winter,”
she said. “Silliness – that I was afraid people wouldn’t think I was strong
because I was using a wheelchair.” Ms. Jackson agreed. “I’m learning to
navigate a new normal,” she said. “My goal when I meet you is to have my chair
disappear in 10 minutes, so that you only see me!”
Evaluating the home environment is key to determining the type of mobility
device needed. “A picture is worth a thousand words and a home visit is a
narrative,” said Ms. Minkel. “To understand the need, we need to see the
environment. For example, show me what the front door looks like.”
The wheeled device is not the only crucial factor – so is choosing the proper
cushion to sit on. Some cushions can relieve pressure, thus preventing pressure
sores (sites of damaged skin that can cause serious infections). “Thirty
percent of our clients are at risk for pressure sores,” said Minkel. “Only two
percent get them because they have pressure-relieving wheelchair cushions.”
The National MS Society provides guidance for people with MS and healthcare providers to navigate the process of
choosing and obtaining coverage for a wheeled device.
Finding Solutions
Participants considered other key issues related to the advanced care needs of
people with MS, naming some difficult problems and suggesting solutions.
- Breathing easier -- “Respiratory dysfunction
begins very early in the disease process,” noted physical therapist Donna Fry,
PhD (University of Michigan-Flint). But, she said, respiratory exercises can
improve strength in respiratory muscles even late in the disease. Dr. Fry’s
team has shown these improvements using “threshold inspiratory muscle
trainers,” inexpensive devices that can help breathing muscles to get stronger.
“Most clinicians are not aware of the potential early involvement of the
respiratory system in people with MS and of accessible, inexpensive equipment
that can enhance muscle strength,” she added.
- Muscle spasticity -- “Quite a few people with MS
are experiencing significant problems from spasticity,” said neurologist
Francois Bethoux, MD (Cleveland Clinic). Spasticity may be as mild as the
feeling of tightness of muscles or may be so severe as to produce painful,
uncontrollable spasms in the extremities, usually the legs. Dr. Bethoux
believes spasticity can often be managed without specialized care. “Optimal
care would involve an early diagnosis, setting realistic goals, and
re-evaluation,” he said. Plus, stretching is vital, even if mobility is
impaired
·
Swallowing
-- “We all
swallow 400-500 times a day, often without knowing,” said speech-language pathologist
Alex Burnham (The Boston Home). “But 30-40% of people with MS can have problems
with swallowing.” The consequences can be serious – breathing in food or
fluids, choking, malnutrition, dehydration, and not taking medicine. Especially
later in the disease, says Mr. Burnham, swallowing and feeding issues can have
dramatic effects on quality of life, especially if it limits enjoying a meal
with friends and family or prevents someone from eating favorite,
culturally-significant foods. Mr. Burnham advocated for screening for these
problems during regular visits. “Ask patients, have you had any trouble eating?
Swallowing your pills?” Burnham also mentioned novel therapies that may prove
helpful, such as the “free water protocol,” in which patients are allowed to
have water by itself to improve hydration. Another method is neuromuscular
electrical stimulation, applied in low doses to the neck
·
Speech
-- Swallowing
disorders can occur hand-in-hand with speech difficulties. “It’s never too
early to start thinking about assistive technology, especially for people with
a wide fluctuation of symptoms,” noted Mr. Burnham. “They might be fine in the
morning, but then if they don’t get a nap, fatigue makes it hard for them to
speak intelligibly later in the day.” Give people with MS an opportunity to use
as many different modes of communication as possible, he advised.
“Miscommunication can lead to frustration, social isolation, and a loss of
independence,” said Mr. Burnham. “Maintaining any form of communication is
critical for empowerment, relationships, and appropriate disease management.”
, including the use of smartphone applications.
·
Thinking
and mood problems –
“Cognitive changes are among the most prevalent reasons that people with MS are
admitted to nursing homes,” said Rosalind Kalb, PhD, Vice President, Healthcare
Information and Resources at the Society. “We need to be providing strategies
to help people compensate for cognitive changes, and we need to speak to family
members, since families may help to pick these changes up earlier.” With mood,
it’s vital to understand that although depression in common in MS, some mood
changes may be a natural consequence of the process of an advancing chronic
disease. “People may be grieving over changes,” said Dr. Kalb. “We need to
treat depression when it is present and also be respectful and comfortable with
talking with people who are not depressed about how they want to live the rest
of their lives.”
Achieving Optimal Care
The group discussed how to achieve optimal care for people with advanced
MS. Nicholas LaRocca, PhD, Vice President of Healthcare Delivery and Policy
at the Society, noted that health care concerns are changing as the MS
population gets older. “The average age of people with MS has increased by over
30 years since 1984,” he said. “Coexisting conditions, such as hypertension,
increase with age and appear to be increasing in MS. Furthermore, people with
MS who have some of these conditions at diagnosis reach the most severe level
of mobility impairment faster than those who don’t.”
The group agreed that education is needed on both ends of this spectrum.
Primary care providers need to be educated about MS so that they can
distinguish MS symptoms from conditions that require primary care. And people
with MS need to be educated about the importance of watching out for their own
health. “A person with a disability still needs their cholesterol checked,”
said Ms. Minkel. ”They still need their blood pressure checked.” Neurologists
and primary care providers need to communicate, collaborate and coordinate
their care of a person with MS.
Early and ongoing evaluation of symptoms also is key. “We need to educate
people with MS and their caregivers about advocating for chronic care issues,”
said Ruth Whitham, MD (Oregon Health& Science University). “Perhaps we can
develop an advanced MS care checklist that would include symptoms to think
about and what to do if you notice them.” The goal is to help people with MS to
advocate for early and ongoing assessment, and for healthcare providers to ask
routinely about changes that may be occurring throughout all bodily systems.
Importantly, people with MS need to know they have the right to advocate for
care, regardless of how advanced their MS. “We don’t ever want a person to
hear, ‘There’s nothing more we can do for you,’” added Dr. Kalb.
Caring for Caregivers
Speakers paid careful attention to how advanced care needs can affect
caregivers.
“Families can become isolated,” said psychologist David Rintel, EdD, whose
father lived with MS. “You feel pretty different from everyone else, and that
isolation is harmful to your physical and mental health.” He advised that
healthcare providers should see the caregiver occasionally along with the
patient, if the patient grants permission, to get their perspective, and also
see how the caregiver themselves are doing. “We need to learn the signs of
burnout, such as depression, and increased use of alcohol,” he said. “Caregiver
burden is real.”
There also is much that a caregiver needs to learn – navigating the healthcare
system, how to transfer people safely, and management of bladder and bowel
problems. “Dealing with bowel/bladder issues is actually a leading cause of
caregiver burnout,” added nurse Cindy Walsh (The Boston Home).
“Families have to learn how to ask for help,” said Dr. Rintel. “They have
to ask in a way where they say what, where, when and how long. Most people
would help if they understood specifically what you need.”
Next Steps
The group identified the highest priority research questions that need to be
answered concerning the care and support of people with advanced care needs and
their families, pinpointing questions in the areas of assistive technology;
comorbidities and primary care; health care system issues (e.g., insurance
coverage); long-term care; symptoms and complications; skin care; speech,
swallowing, and pulmonary functions; and the benefits of wellness/lifestyle
interventions. They are now formulating a prioritized list of these questions
to help inform the Society’s next steps.
A white paper describing the meeting’s discussion highlights and
recommendations regarding the Society’s response to the needs of those affected
by advanced MS will be posted on the Society’s web site, and a similar paper
will be submitted for publication in a peer-reviewed journal.
Help is Available Now
Individuals nationwide may contact the Society’s MS Navigator® program via the
Society’s toll-free help line 1-800-344-4867 (1-800-FIGHT MS) or via email
(contactusNMSS@nmss.org). The MS Navigator Program connects people to
resources,, helps people access optimal healthcare and understand benefits such
as health insurance, face financial challenges and planning for the future, and
find support when MS progresses.
Right now, MS activists are engaged on a number of fronts to improve quality of
life and access to care. Among these is advancing home modification tax credit
legislation, to provide financial relief for home modifications to promote
safety and mobility.
The National MS Society provides support to people living with advanced MS,
including care guides for families, information about symptom management, a
guide to financial planning, and information on advanced directives. Read more
The Society also provides support for healthcare professionals who are seeking
to help people with MS obtain care at home, in nursing homes, assisted living
facilities, or adult day homes. Read more
