When Gregory Martinez first noticed his body changing, the signs were subtle enough to dismiss. He felt winded after a run, sit-ups became harder than usual, and his fingers didn't move across the keyboard as quickly as they once had.
A surfer, father and longtime environmental services manager at a local hospital, Martinez was used to being active and constantly on the move. When he found himself short of breath during routine hospital rounds, he assumed he was just out of shape or feeling the effects of long, physically demanding workdays.
But the symptoms didn't fade, instead, they multiplied. What followed was almost a year of appointments and tests. A hand therapist first noticed a small dip between Martinez's thumb and index finger that shouldn't have been there — a subtle but important sign that something deeper might be wrong.
An avid outdoorsman and surfer, Martinez led an active life rooted in movement and exploration prior to the onset of symptoms that would later change his daily routine. Photo courtesy of the Martinez family.
A neurologist shared the possibility Martinez feared most — Amyotrophic Lateral Sclerosis (ALS).
ALS is a rare condition affecting approximately 35,000 adults in the United States each year, according to the Centers for Disease Control and Prevention. This progressive neurological disease affects the nerve cells controlling voluntary muscle movement.
Martinez's mind raced through every explanation he could imagine, anything but the diagnosis he associated with baseball legend Lou Gehrig and renowned physicist Stephen Hawking.
Determined to be certain, he sought a second opinion and was referred to neuromuscular specialists at UC San Diego Health.
The week of his birthday, after undergoing an electromyography (EMG) test, the diagnosis was confirmed: ALS.
Finding Answers and Support
The news rippled through Martinez's family, especially his two young adult children, who immediately began researching the disease and learning how unpredictable ALS can be.
The disease progresses differently for every person, making the future uncertain not just in years but in weeks and even days. Although progression varies, the average survival after symptom onset is about three to five years, with only about 10 percent surviving a decade or more — a reality that makes timely, coordinated care essential.
Martinez found reassurance through the specialized ALS clinic at UC San Diego Health, where he was under the care of neurologists Wali Qayoumi, MD, and later Dominic Ferrey, MD.
"ALS is a life‑changing diagnosis, but no one should navigate it alone," said Qayoumi. "Our goal is to partner closely with each patient and their family, anticipate challenges before they arise, and ensure they feel supported at every step."
The program, which is recognized as leaders in the field by the Muscular Dystrophy Association and ALS Association, integrates neurologists, respiratory therapists, dietitians, physical therapists, speech therapists, occupational therapists, pharmacists and other specialists in a multidisciplinary clinic designed specifically for people living with ALS. By working together in one setting, the team addresses every aspect of the disease — from breathing and nutrition to mobility, communication and emotional well-being.
"ALS affects every part of a person's life, so our care needs to reflect that," Ferrey said. "By bringing all specialists together in one place, we're able to look at the whole person — their physical needs, their emotional well‑being, and what matters most to them."
As Martinez's ability to breathe on his own got worse, he began receiving care from Jeremy Orr, MD, pulmonary and critical care physician at UC San Diego Health. Martinez now relies on full‑time ventilatory support, a significant milestone in ALS progression that requires close coordination between his pulmonology and neurology teams.
"ALS care is constantly evolving as the disease progresses," Orr said. "That's why close communication between neurology, pulmonology and every member of the team is essential. Gregory's resilience and clarity about his goals guide every decision we make together."
When certain medications caused difficult side effects, his care team worked closely with him to adjust his treatment plan. Together, they explored options that included supportive therapies, nutrition guidance, physical therapy and complementary approaches aligned with his values and comfort level.
Patients cared for at UC San Diego Health also have access to leading ALS research programs and clinical trials aimed at slowing disease progression and improving quality of life.
But some of the most meaningful support came from outside the clinic walls.
Surrounded by community and connection, Martinez continues to find joy in shared experiences and meaningful moments beyond his ALS diagnosis. Photo courtesy of the Martinez family.
The Power of Community
When Martinez's condition progressed and he began using a wheelchair, he noticed some people around him weren't sure how to respond.
"People want to help," Martinez said. "They just don't know how. They remember me before and don't know what to do with who I am today."
Others stepped forward in remarkable ways. Former health care colleagues volunteered their time to build a wheelchair ramp at his home. A friend who hosts a podcast rallied listeners to help raise funds toward a down payment on an accessible van. Donations from friends and strangers helped remodel his bathroom so he could shower safely. These gestures, Martinez says, restored something he worried he might lose after his diagnosis.
"They reminded me of people's humanity," said Martinez.
The Role of Caregiving
Even with expert medical care, Martinez says life with ALS is shaped largely by the support systems surrounding each patient. Because Martinez depends on full‑time ventilation, many routine activities now require careful planning and assistance.
Many everyday tasks, such as eating, dressing, bathing or transferring from bed to a wheelchair, can require assistance. Finding the right caregiver can take time, trust and patience, but the right support can dramatically improve independence and quality of life.
"You need someone you trust with your life," Martinez said. "When you find the right person, it makes everything easier."
His care team at UC San Diego Health has helped guide him and his family through those decisions, connecting them with resources and helping them navigate the complexities of long-term care.
For Martinez, caregiving has become a reminder that ALS care extends far beyond medicine, involving families, communities and health care teams working together to support dignity, comfort and daily living.
Through his podcast, Martinez shares candid conversations about life, connection and living with ALS, using his voice to build community and purpose beyond his diagnosis. Photo courtesy of the Martinez family.
Finding Purpose
Despite the challenges, Martinez has found new purpose in sharing his story.
After appearing on a podcast to talk openly about his diagnosis, he felt inspired to launch his own show where he discusses life, connection, illness and the everyday realities of living with ALS. The podcast has become a way for him to stay engaged with the world and to remind others that a diagnosis does not define the entirety of a person's life.
"I may be in the middle of a terminal illness, but I'm still in the middle of life, too," Martinez said. "ALS is also about connection, compassion and showing up for one another."
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Neurology & Neurosurgery
Neurology & Neurosurgery
