For our ALS team, care is more than clinical, it’s personal
Our ALS & Neuromuscular Center team gave ALS
patient Jodi Oliver more than expert care
July 20, 2015
“I may not be able to cure
ALS, but I can raise awareness,”
said Jodi Oliver, who sported
a “Kiss My ALS” sticker on
the back of her wheelchair.
Jodi Oliver believed in living life to the fullest. Married for 19 years and the
mother of four, she also worked as an emergency room nurse, ran 5Ks and volunteered
at her children’s schools.
But three years ago, at age 42, the Westminster resident began to experience
debilitating muscle weakness. After several doctors couldn’t identify the problem,
Oliver demanded a referral to the UCI Health ALS & Neuromuscular Center,
where she was diagnosed by neurologist Dr. Namita Goyal with ALS—amyotrophic
lateral sclerosis, also known as Lou Gehrig’s disease.
ALS strikes otherwise healthy people mostly between the ages of 40 and 70. It’s a
progressive, neurodegenerative disease that affects motor nerve cells in the brain and
spinal cord, causing muscles to waste away. The average life span after the onset of
symptoms is two to five years.
UCI Health has one of only 44 centers in the nation designated by the Muscular
Dystrophy Association. Neurologists who specialize in diagnosing and treating
neuromuscular diseases collaborate with researchers to provide optimal treatments
and search for a cure. Together, the team offers highly advanced and specialized testing
to diagnose ALS and other complex neuromuscular diseases and determine the best
course of treatment. “Although there’s no cure for ALS, specialized, multidisciplinary
and coordinated care can extend patients’ survival and improve their quality of life,”
explains Goyal.
“Optimal management of the disease requires a
team operating in an integrated manner. Instead
of having individual appointments at different
locations, we try to minimize the disease burden
by offering coordinated care in one place during
the same visit.”
The doctors and other healthcare professionals also offer understanding and
personalized care. “The compassion I’ve received from Dr. Goyal is beyond gold,” wrote
Oliver earlier this year, after she lost the ability to speak. Oliver confronted ALS headon,
vowing to make the most of her limited time by advocating for ALS research and
participating in a clinical trial that she knew couldn’t cure her, but might give hope to
future ALS patients.
“We offer more clinical trials than any other ALS site in Southern California,” says
Dr. Tahseen Mozaffar, director of the UCI Health ALS & Neuromuscular Center.
“Research is the key to eliminating this cruel disease.”
A few days before Oliver died, Goyal visited Oliver at home. “I sat by her bedside, talking
with her,” Goyal says. “I promised I’d battle ALS until we find a treatment or cure. And
on the day we do, I’d think of how she inspired me to fight ALS. Jodi gave me a thumbsup,
one of the few muscles she could still move.”
To learn more about ALS and neuromuscular diseases,
visit ucirvinehealth.org/als or call 714-456-2332.
— UCI Health Marketing & Communications
Featured in UCI Health Summer 2015
