Grateful Patient: Christine Moretti
Christine Moretti is many things: a mother, a wife, a sister, a friend, and an artist, but most importantly she is a fighter. Her healthcare journey has not been an easy one, but she has faced each obstacle with a unique blend of tenacity and optimism.
Moretti first met with Goran Rakocevic, MD, then the clinical director of Jefferson’s Weinberg ALS Center, on the day before Thanksgiving in 2015 for a lengthy consultation. She detailed her battle with uterine cancer, a history of hypertension, and a meningioma tumor that caused a seizure in 2012 and paralyzed the left side of her body from the waist down. Dr. Rakocevic sat and listened intently, and ultimately made the decision to order a neurological exam.
In January 2016, Dr. Rakocevic ordered an electromyography (EMG) on Christine’s right side to confirm his beliefs. The other physicians and staff exited the room—leaving just Christine and Dr. Rakocevic—and she then heard the three letters that would change her life: PLS.
“I just said, ‘It’s going to be OK, it’s going to be OK’ over and over again,” Moretti recalls. “I don’t know if I was talking more to Dr. Rakocevic or myself at that point.”
Primary lateral sclerosis (PLS) is a rare variant of amyotrophic lateral sclerosis (ALS), and like ALS it is a progressive neurologic disease that leads to the degeneration of brain neurons. Unlike ALS, PLS does not affect the neurons in the spinal cord. PLS is a slower, more gradual process in comparison to ALS, but is often even harder to diagnose.
“Living with PLS is a balancing act,” Moretti says. “It’s like turning over an hourglass.”
PLS is a limiting condition, meaning Moretti needs to plan her day accordingly; she takes care of her most important tasks in the morning, but—like the falling sand of an hourglass—she gradually runs out of energy. While it has been a difficult road post-diagnosis, Moretti has a powerful support system standing behind her every step of the way.
I chose Jefferson for my care because of the unique combination of compassion, support, knowledge, and empathy. It’s unlike anything I’ve ever felt. You feel like it’s a family, you feel like you’re a person and not just a patient.
Her husband and “champion,” Al, goes with her everywhere she needs to go. She and Al have two sons, Josh and Jeremey, who are “the lights of her life” and her reason for getting out of bed every day. Last, but not least, is the four-legged member of the Moretti family, Zoe, a cairn terrier—a breed known for their tenacity.
“I consider myself a very tenacious person, so I kind of have that terrier attitude, too,” Moretti says.
Moretti also has the full support of her second family: her team of healthcare professionals at Jefferson.
“I chose Jefferson for my care because of the unique combination of compassion, support, knowledge, and empathy. It’s unlike anything I’ve ever felt,” Moretti says. “You feel like it’s a family, you feel like you’re a person and not just a patient.”
Moretti also expressed a desire to “pay it forward” and help the next generation of PLS patients, going as far as donating her brain and spine to science. With the help of Piera Pasinelli, PhD, Moretti participates in several ongoing PLS research projects.
Moretti, aided by of Dr. Pasinelli, was recently certified as an ALS Research Ambassador by the Northeast ALS Consortium at an event hosted by the ALS Hope Foundation. Moretti continues her participation in research and considers it an honor to advocate for ALS as the dedicated team at the Weinberg ALS Center continues working toward a cure.
Many in the ALS community have adopted the belief that ALS is not an incurable disease; it is an underfunded one.
For an eight-week span back in 2014, America was swept away by a wave of support for ALS research in the form of the viral Ice Bucket Challenge. Participants had the option to donate money to ALS research or pour a bucket of frigid ice water on their heads—with many choosing to do both—and then nominate three more people to participate. In a mere two-month period, more than $115 million was raised for ALS research.
While funding and awareness is up, ALS research is still heavily dependent on the generosity of others. Your gift today will support the life-saving research and treatment of ALS and PLS in the future.
“If I had $1 million, I would give it to them, but I do what I can and I support them in any way that I can,” Moretti says. “I'm just more convinced than ever that there really is going to be a breakthrough and I really do believe that. I really do.”