Support for Caregivers, Focus on Quality of Life Helps ALS Patients Live Life to the Fullest

By Emmanuel Hospice

After losing her father to ALS, Julie Snelling knows it’s one of the last diagnoses a doctor wants to give – or a family wants to hear.
Also known as Lou Gehrig’s disease, Amyotrophic Lateral Sclerosis is a devastating progressive neurodegenerative disease that robs control over your muscles. Once diagnosed, individuals with ALS have an average of 2-5 years to live. 

“Usually, the brain stays intact while the disease slowly paralyzes you,” explained Snelling, executive director of the Susan Mast ALS Foundation, a nonprofit that provides support to ALS patients, families and caregivers in West Michigan. “It often hits the lungs, making you no longer able to breathe.”

According to Snelling, the disease is difficult to diagnose as there is no single test to confirm it. Initial symptoms, which can range from muscle weakness and clumsiness to slurred speech and difficulty swallowing, can be subtle and mimic other diseases. While more common in older adults, the disease can strike at any age.

“Ninety percent of ALS cases are sporadic, meaning anyone can develop it at any time,” Snelling said. “Right now, we’re supporting about 140 ALS families across West Michigan, with individuals ranging in age from 20 to 80 — and we expect that number to grow.

“Our state has one of the highest rates of ALS in the country. The number of people diagnosed in the state have doubled in the past 10 years alone.”

While hoping for a cure, Snelling says the foundation’s focus is on quality of life and helping individuals with ALS live each day to the fullest – a mission that resonates with the team at Emmanuel Hospice, which makes hospice care more about living.

Because ALS is a terminal illness, individuals with this disease are often eligible for hospice services. Emmanuel Hospice nurse Sarah Cybulski has supported more than a dozen families affected by ALS in the past five years. Knowing the trajectory of ALS in our state, she wishes more people were given information about hospice upon diagnosis to be able to utilize services earlier on. 

“ALS, Lou Gehrig’s and hospice can all be intimidating terms to hear,” Cybulski said. “But one of the scariest things is just not knowing what to expect. We provide education and resources to help families navigate ALS as symptoms progress. When families learn about the individualized support hospice can provide, I’ve seen that sense of being overwhelmed melt away.”

Cybulski says with its focus on compassionate, person-centered care, Emmanuel Hospice is uniquely qualified to help patients and their loved ones navigate the emotions of a terminal diagnosis, manage symptoms and enhance quality of life. 

“Anticipatory grief support is especially important as someone watches their loved one with ALS lose their previous independence and they become more of a caregiver,” Cybulski said. “We have dedicated team members trained to provide support emotionally and spiritually.”

Hospice can also reduce the burden of care coordination from families so they can be more present with their loved one in the time they have left together. Helping patients and their loved ones make the most of every moment at the end of life is central to Emmanuel Hospice’s philosophy of care.

“Our first question is always, ‘how do you want to live?’” Cybulski said. “Hospice is often seen as something for one’s final days or hours, but we have had the privilege of serving patients with ALS for months. It’s never too soon to learn about how hospice can help.”

For more information about hospice care, visit EmmanuelHospice.org. Details about the Susan Mast ALS Foundation can be found at SusanMastALS.org.