a headset so I didn’t have to worry about dropping
the phone in mid-conversation. As my symptoms
and needs changed, so did the accommodations
that were made for me, such as: a private office so
I could shut my door and take mini-naps when
needed; moving my office closer to a bathroom;
and designating a parking space for me so I didn’t
have to walk as far, and extra space to allow for my
low vision. They made other adjustments to make
my job easier, like allowing me to telecommute
when possible and adjust my hours when needed.”
Insurance decisions. If you do have to leave or
change your job, make sure you include your
health insurance needs in your decision-making.
If you have employer-based health insurance, talk
to your employer (or plan administrator) about
your right to keep that coverage for at least 18
months at your own expense. Federal COBRA law
guarantees the right to continuation coverage to
anyone insured by employers of 20 or more, and
other laws provide comparable provisions for those
ending employment with very small businesses,
the armed services or government.
The cost of continuation coverage can be hefty,
but will be more affordable after the Affordable
Care Act’s subsidies begin for any individual whose
income is at or below 400 percent of the federal
poverty level (about $43,000 for a single person),
starting in 2014. At that time, individuals no
longer eligible for employer-based coverage will
also have the choice of buying their own policy,
even if they have MS or another pre-existing
condition. No-cost expertise will be available to
help you and your family make informed choices
about insurance options.
Living arrangements. If your mobility needs
change, consider making modifications to your
home, such as adding ramps or lifts, installing grab
bars and redesigning the bathroom and kitchen for
greater accessibility. If you’re living in a multistory
home, think about eventually moving into a more
accommodating living environment, such as a one-story house or condo.
Personal care decisions. Assess whether MS is
interfering with your ability to do everyday tasks,
such as grocery shopping, cooking and cleaning.
You may also need help with personal care, such as
showering and dressing. Think about and discuss
with your family what care options you prefer as
your condition changes—including housekeeping
help, in-home care, adult day programs or assisted
living—and price out the various options so you’ll
have a good estimate of how much money you’ll
need to save. (See “When, why and how to hire
in-home help,” pg. 54.)
And don’t be afraid to admit you need extra help
when the time comes. “I’ve always been very
independent,” says Bernadette Couch. She resisted
getting assistance until relatives finally noticed that
she and Sven were overwhelmed by their home
responsibilities. “Our family said, ‘Hey, you guys
need help.’ They realized that we needed help
before we did.” Now, the couple has a cook who
helps with meals, as well as volunteers who clean
their house and take out the garbage.
Getting control
Part of the reason Sharon Dodge is doing so well
is that she has access to much better therapies
today than her father did in his lifetime. Decades
ago, treatments were very limited. “He had zero
options,” Dodge says. “My dad tried some crazy
stuff—snake venom, hyperbaric oxygen, bee-sting
therapy. There wasn’t anything out there that he
didn’t try. He was a desperate man.”
Although there still isn’t an ultimate cure for MS,
there are now several disease-modifying drugs that
can slow the disease progression, manage symptoms
and reduce relapses. Dodge doesn’t have to resort
to desperate measures like her father did. A disease-modifying drug helps to keep her MS in check.
“Taking the shots is my insurance,” she says.
