“I thought we had six months. I wanted more time to go over our memories. She died three days after entering hospice.” – Zach Hall
These heartbreaking words from Zach Hall, reflecting on the loss of his wife, Julie Giacobassi, capture the devastating reality that many ALS caregivers face: a race against time.
Julie passed away at age 72 on February 21, 2022. But Julie was more than a woman living with ALS; she was an extraordinary talent and a beloved figure in the musical world. A renowned English horn player for the San Francisco Symphony, Julie’s career spanned over 25 years. Throughout her life, she founded Fish Creek Music to help other English hornists and volunteered at a soup kitchen in San Francisco and at a free clinic in Jackson, Wyoming, where she and Zach retired. Julie was known not only for her music but for her generosity, humor, and down-to-earth nature. Composer Aaron Jay Kernis, a colleague of Julie’s during her time with the San Francisco Symphony remarked, “She was a gem of a person, a warm, delightful, and down-to-earth woman with a quick laugh who would suffer no fools.”
As ALS began to take away the very parts of her that she had used to create her art; her hands and her breath, their lives changed in ways neither Zach nor Julie could have imagined. Soon, they faced the cruel reality that ALS had stolen her ability to play music and enjoy the outdoor adventures they had shared in Wyoming. As her ALS progressed, Julie’s vibrant life was slowly taken from her, leaving behind only moments that Zach wishes he had more time to cherish. This race against time is a painful reminder that ALS doesn’t just steal abilities, it steals time, robbing families of the chance to savor their shared memories.
For Zach, a neuroscientist, co-founder, and board member of Target ALS, even his extensive knowledge of the disease couldn’t shield him from the emotional impact of witnessing his wife’s rapid decline. His journey, like many others, highlights the relentless progression of ALS and the heavy toll it takes on caregivers. His story is not only a testament to the love and resilience of caregivers but also an important reminder of the unique challenges ALS presents, both for those living with ALS and those who care for them.
ALS, or amyotrophic lateral sclerosis, often begins with subtle symptoms that can lead to confusion and misdiagnosis. Studies show that ALS is misdiagnosed in up to 10-15% of cases, with an average delay of 12 to 16 months before an accurate diagnosis is made. This delay can be devastating, as ALS is a rapidly progressing neurodegenerative disease that robs individuals of their ability to move, speak, eat, and eventually breathe. For Zach and his wife, this confusion hit close to home. “Her symptoms started with weakness in her hands and spontaneous contractions,” Zach recalled. “There was some confusion at first. Our local doctor thought it might be Myasthenia Gravis, but I knew it wasn’t.”
Misdiagnosis in ALS cases often stems from the initial symptoms being mistaken for more common, treatable conditions, such as pinched nerves or autoimmune diseases like Myasthenia Gravis. While some people with ALS in the early stages of the disease may still retain hope for a less grim prognosis, the realization that ALS is the underlying cause can be shattering. Julie experienced this heartbreaking journey when she visited UCSF’s ALS clinic, where doctors initially left space for a different diagnosis, suggesting an autoimmune disease that mimicked ALS. “We decided to try the treatment for the autoimmune disease,” Zach shared, “but when it didn’t work, we had to face the reality of ALS.”
This kind of misdiagnosis, and the valuable time lost in the process, compounds the emotional toll on both people living with ALS and caregivers. ALS progresses with unforgiving speed. Most living with ALS only live two to five years after diagnosis, and nearly one-third succumb within 12 months. This sense of time slipping away is something Zach is acutely aware of. “ALS moves along the spinal axis, and eventually, you lose the ability to breathe or swallow,” he said, describing how his wife’s condition worsened over time. “We knew all too well what the course of the disease would be… We made the decision not to pursue treatments that would only prolong life by a few months.”
For caregivers like Zach, this rapid progression often leaves little time for processing emotions, let alone preparing for what lies ahead. With his wife’s symptoms moving from her hands and arms to her breathing, Zach took on the heavy burden of caregiving, managing daily tasks like cooking, cleaning, and helping her in and out of bed. “We had some help, but I was slow to accept it. I didn’t like having people in the house,” he admitted. This reluctance to accept assistance is a common experience for caregivers, who often feel a deep sense of responsibility and guilt for not doing enough.
One of Zach’s greatest regrets is that he didn’t make more time to simply be with his wife, outside of the daily routines of caregiving. “If I regret anything, it’s that I didn’t take enough time just to sit with her and reminisce. We never had time to sit and say, ‘Haven’t we had a nice life together?’” The progression of ALS doesn’t allow for long goodbyes. As Zach shared, “She went into hospice, and I thought we had six months. I wanted more time to go over our memories. She died three days after entering hospice. I just wasn’t prepared.”
ALS doesn’t just steal time from those living with it; it steals time from families, from relationships, and from memories yet to be made. Zach’s story underscores the importance of making the most of the time you have, a lesson he now imparts to others beginning their caregiving journey. “The reality is, you have to accept the situation as it is and make the most of the time you have.”
Despite the overwhelming demands of caregiving, Zach found moments to take care of himself, an aspect that is crucial yet often overlooked. “In the summer, I’d go for walks with a friend, and in the winter, I’d cross-country ski on a nearby golf course,” he shared. These small moments allowed him to clear his head and regain some balance amid the emotionally draining experience of watching his wife’s condition worsen. Zach’s advice to other caregivers is simple but critical: “Get help early and get enough of it.”
Caregiving for someone with ALS is an all-encompassing role, and yet the system often fails to support these caregivers adequately. Many hospitals and healthcare providers are unequipped to deal with ALS, offering little more than palliative care as medical treatments remain limited. “The hospitals don’t really know what to do with ALS patients, as they can’t offer much help,” Zach noted. This gap in care leaves families to bear the brunt of the physical and emotional toll of ALS.
Much about ALS remains a mystery, which contributes to the immense burden on the people living with it and caregivers alike. The treatments that are currently available provide limited benefit in slowing the disease’s progression, and a definitive diagnostic test or biomarker has yet to be discovered. As a result, diagnosis today is often a process of elimination, where other conditions are ruled out before ALS is confirmed. This uncertainty not only delays treatment but also leaves families in a painful limbo as they await a diagnosis that provides little hope for intervention.
This profound uncertainty surrounding ALS underscores the critical need for research. Without research, there can be no breakthroughs in treatments or diagnostics. Target ALS often says that “research is the highest form of care,” because it is the foundation of hope for those diagnosed and their caregivers. Without research, there is no treatment, leaving patients and their families feeling helpless. Advancing research is the only path to bring real solutions and relief to those suffering from this devastating disease.
Zach’s involvement with Target ALS as both a scientific advisor and a caregiver gives him a unique perspective on the disease. Reflecting on the future of ALS research, Zach remains cautiously optimistic. “We’ve learned a lot about the biology of ALS, but it’s a complex disease. I don’t think there will be a magic bullet anytime soon. It’ll probably be a combination of therapies.”
Despite the hardships he has faced, Zach remains committed to raising awareness for ALS, both through his work with Target ALS and by sharing his personal story. “Anything I can do to raise awareness or help others, I’m happy to do,” he said. As we honor caregivers this month, Zach’s journey reminds us of the incredible resilience and compassion required to care for someone with ALS. His story is a call to action, not only to recognize the invaluable role of caregivers but also to continue pushing for advancements in ALS research, so that one day, no family will have to endure the pain of watching their loved one’s time slip away.
As we reflect on National Caregivers Month, let us remember Zach’s words: “Make the most of the time you have.” For caregivers everywhere, those words ring true, now more than ever.
