Vim & Vigor - Summer 2017 - Parrish Medical Center - 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.
A WHOLE-FAMILY
CONDITION
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
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.
WEBSITE
THE MANY SYMPTOMS OF MS
Someone suffering from multiple sclerosis
can have a variety of symptoms. Parrish
Medical Group physician Daniela Rusovici,
MD, PhD, explains some of them.
3 Fatigue. About 80 percent of people with
MS experience some variation of tiredness.
3 Numbness and tingling. This is often the
first symptom someone experiences before
being diagnosed with MS.
3 Weakness. This results from the deconditioning of unused muscles or damage to
nerves that stimulate muscles.
3 Vision problems. Loss of vision in one
eye is often a heralding symptom; it's called
optic neuritis.
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
laugh, too.
"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." ■
3 Dizziness and vertigo. Patients might
feel off-balance or lightheaded, or feel a
spinning sensation.
3 Pain. One study showed that more
than half of MS patients had "clinically
significant pain."
3 Cognitive changes. About 50 percent of
people with MS have issues with the ability
to learn and remember information, organize and problem-solve, focus attention and
accurately perceive their environments.
3 Emotional changes and depression.
One of the most common symptoms,
clinical depression is more prevalent within
the MS population than it is in the public.
Caregiver Guide
For practical advice on caring
for someone with MS, visit
nationalmssociety.org and
search "caregiver." Choose
"A Guide for Caregivers."
3 Sexual problems. This can be caused
by damage in the central nervous system,
fatigue, spasticity and psychological factors.
3 Spasticity. This includes stiffness and
involuntary muscle spasms, most commonly
in the legs.
3 Bladder and bowel problems. This
symptom can be managed through dietary
and fluid management, medications
and catheterization.
SUMME R 2017
13
http://www.nationalmssociety.org
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