Vim & Vigor - Summer 2017 - University of Virginia - 13
Even after her diagnosis at age 38, Holt
was still trying to outrun the disease.
She didn't have time for a chronic illness,
she thought. She hoped her kids wouldn't
notice the changes in their mom.
But things had to adjust for the
whole family, Holt soon found. She
had to stop working, she walks with
the help of a cane or a walker, and her
hearing is diminishing. Because MS
always changes, sometimes she has to
crawl out of bed and sometimes she
can stand without issue in the morning.
She's learned that "just because you're
in a bad stage or funk right now, doesn't
mean that it's forever," she says.
Families are on the front lines of MS, and
spouses and children have to make big
adjustments, just like the person diagnosed. Kalb compares it to a stranger
showing up in your home, spreading his
stuff everywhere and never leaving.
"When one person is diagnosed with
MS, the whole family is," Kalb says.
"Everyone is living with this disease."
In her book, The Girl with the Lower
Back Tattoo, Schumer writes about her
father still trying to be a dad through his
MS symptoms. He once drove her to the
airport but couldn't pull her suitcase out
of the trunk.
"This must have looked strange to
other people, seeing this strapping man
watch his 18-year-old daughter lift and
tote her giant suitcase all by herself,
but they didn't know he was sick," she
writes. "I didn't really understand the
symptoms of the disease, but I did know
that it slowed him down, that even if he
looked normal he could still be in a lot
of pain, unable to do the small physical
acts he used to do with ease."
Her dad walked her into the airport,
where he had a bowel accident, she writes.
He had to switch into a pair of her shorts,
but he still wanted to walk her to the gate
as he had promised. He pushed through,
not wanting her to see him break down.
THE CHALLENGE OF
Caregiving can be tricky, as Schumer
showed in her 2015 movie Trainwreck. In
it, Colin Quinn plays her acerbic dad who
has MS, uses a wheelchair and recently
had to be moved into an assisted living
facility-just like Schumer's real-life dad.
One scene shows Schumer's dad
struggling and failing to zip up his
sweatshirt. Schumer's character finally
just says, "Can I do this, please?"
That's a common interaction in MS
households across the country, Kalb
says. Kids, partners and families need
to figure out when to help and when
to step back in the midst of an everchanging disease.
"No matter how much you love
someone, you can't read their mind. Is
this a day they want help or a day that
they're going to bite my head off and
say, 'Leave me alone'?" Kalb says.
Schumer said her dad's disease has
given her a perspective that helps her
laugh more, and make other people
"I seek laughter all the time," she
told CBS Sunday Morning. "I think that's
something that also comes with having
a sick parent is you don't know what's
going to happen, and so I'll be like, 'I'm
psyched my legs still work.' And I want
to experience all I can and make as
many memories as I can." ■
Strike Out MS
DIGGING DEEPER INTO MS
When managing life with multiple sclerosis, the right attitude can make a
"For some, the disease becomes allencompassing, and that's much more detrimental than for those who are able to treat
MS as an inconvenience and not a complete
roadblock," says David Jones, MD, a UVA
Health System neurologist at the James
Q. Miller Multiple Sclerosis Clinic. "A goal I
have with all of my patients is to get them to
realize they are people who happen to have
MS and not be MS patients."
At last count, Jones had 14 medications-
triple what was available a decade ago-to
help control symptoms of relapsing-remitting
MS. This year, he's hopeful the Food and
Drug Administration will approve the first
treatment for primary progressive MS.
"These medications have allowed us to alter
the course of the disease in some people,"
He co-directs the North American Registry
for Care and Research in Multiple Sclerosis,
which is collecting clinical data from patients.
He hopes this information will lead to a
A former UVA baseball player
created a foundation that's
contributed over $1 million to
improve multiple sclerosis care.
greater number of earlier diagnoses (MS
often goes undetected for years), a better prognosis for patients and a greater
understanding of risk factors. "Over 200
known genetic locations increase the risk of
MS," Jones says. "But most people with MS
don't have one of these genetic mutations.
Genetics play a role, but not a very big one."
SUMME R 2017