• Psychologist or psychiatrist to provide
counseling or medications, and to help you
adjust to the emotional challenges of living with
a chronic medical condition.
• Social worker to help you locate and coordinate
community resources.
• Speech-language pathologist to help you
communicate effectively and address any
difficulties with swallowing.
• Vocational counselor to address employment
issues.
• Urologist to treat bladder issues and other
urinary system problems.
• Ophthalmologist to address vision issues.
• National MS Society MS Navigator® for
referrals to healthcare providers in your area.
Depending on your location, you might have access
to a specialized MS center that incorporates all, or
at least most, of these professionals. People who live
in more rural areas can work with their neurologist
or primary care physician to assemble a virtual team
of specialists, or even look into telemedicine (see
“Telemedicine reaches out,” pg. 41).
No matter what your MS is like, it helps to be
an active participant in your treatment. Take
advantage of every visit with your neurologist and
the other healthcare professionals on your team. Ask
questions about anything that is unclear or that has
been worrying you. If possible, bring someone with
you to your visits. “Some patients are good at asking
questions, but it’s hard for them to listen and pay
attention because of cognitive changes or anxiety,”
Hartley says. “So it’s very important to have a friend
or family member with you, someone else who can
help listen.” That person can take notes so you can
focus on what your healthcare provider is saying.
Putting together an MS plan
No matter the type or severity of your MS, you
should start thinking about your future. Discuss it
with your family and write down a plan for each of
these areas:
Financial decisions. Thanks to better treatments,
people with MS can live well into their retirement
years. That means you’ll need not only funds
set aside for basic living expenses, but also extra
savings to cover future care needs. Work with a
financial planner to ensure you’re saving enough.
An elder law attorney can help people of any
age handle wills, trusts and estate planning. It’s
also a good idea to designate someone—a family
member or friend—who can handle your finances
in the future, should you become unable to do so.
Employment decisions. Start thinking about
your job, especially if it requires physical labor, but
don’t assume you need to hand in your resignation.
“Having a diagnosis doesn’t make you disabled,”
Hartley says. “If a person can stay at work rather
than going on disability, I strongly recommend
they do that.” Working longer will help you build
financial security and hold onto your employer-sponsored health insurance.
Thanks to the Americans with Disabilities Act
(ADA), an employer can’t fire someone because
of his or her MS. A company with 15 or more
employees also must make reasonable changes
to a job or work environment to accommodate
a person’s changing capabilities. That might
involve allowing 15-minute breaks for a person
with fatigue, or equipping a desk with ergonomic
equipment.
In the late 1990s, when LeVan’s symptoms
worsened, her employer made the adjustments
she needed to stay on the job. “They were so
wonderful,” she recalls. “It started with easy things
like getting me a foot rest to prop up my feet,
when I experienced a lot of tingling and pain, and
