“The first several months of diagnosis is a time
when people need to wrap their heads around it in
their own way,” says Deborah Miller, PhD, LISW,
a clinical social worker at the Mellen Center for MS
Treatment and Research at the Cleveland Clinic.
“After that, they need to find a way to come to a
united understanding of what the family’s approach
should be. I routinely suggest that people contact
the Society or a nurse practitioner for counseling at
the beginning.” Children may not be ready to talk
about it right away, so leave the door open. If one
spouse wants to read everything and one doesn’t,
that’s fine, at least until the diagnosis has been
digested to some extent.
Equal importance
A diagnosis can bring what seems to be a new
emphasis on the person with MS, and family
members may not realize the full range of what’s
available to them, as well. “There are many
families who are isolated and don’t know what
resources are out there,” Castor notes. “Sometimes
the students who apply for Society Scholarships
will tell us that they are in school full time, as well
as being the primary caregiver for a parent who
has MS. They’re trying to do this on their own.”
Society Scholar Jane Brach is an example of that.
“Some of my friends don’t do their laundry or
clean. I clean, I cook, but it’s always been that
way; I’ve always had more responsibility than
my friends,” says Jane, who is in her first year
at Mount St. Mary College in Newburgh, N.Y.
She lives with her mom, Jen, who has MS. “My
best friend says she doesn’t know how I do it. She
doesn’t realize how hard it is sometimes. She can
spend a night at a friend’s, but I have to make sure
someone’s with my mom.” Jane also goes to almost
every doctor appointment with Jen.
Jane was only a year old when her mom, now 42,
was diagnosed. “She’s had the disease as long as
A person with MS can
receive the best clinical
care and have access
to the most up-to-date
technology, but if his or
her family is stressed, that
person’s quality of life will
be diminished.
I remember,” she says. “She has flare-ups quite
frequently, and in the last couple years, pretty
much uses a wheelchair or walker.” For Jane, the
Society Scholarship was a door to the support she
needed. “I was the one fellow classmates came
to for help. Now, I find myself reaching out for
assistance and it feels foreign to me,” she wrote as
part of her scholarship application. She told her
mom how much she hated to ask for help. “Mom
reminded me that everything about her day-to-day
living required help due to her having MS.”
Family members are as deserving as their loved
one with MS of all the support and resources the
Society has to offer. A person with MS can receive
the best clinical care and have access to the most
up-to-date technology, but if his or her family
is stressed, that person’s quality of life will be
diminished.
“Family is who you make it,” says Kimberly Koch,
MPA, vice president, Programs and Services,
for the Society. “The Society is open to you, no
matter how you define it. If you’re a friend of a
person with MS, the Society is here to answer all
of your questions, no matter what your official
