In 2019, Emily Turner, 79, fell and twisted her ankle. Despite time and numerous doctors’ visits, the ankle kept giving her trouble, so she began physical therapy to attempt to improve her leg strength.

But things didn’t improve. In fact, they seemed to be getting worse.

“I kept falling and had numbness in my toes,” Emily says. It turned out that Emily’s leg weakness wasn’t caused by her ankle injury but rather amyotrophic lateral sclerosis (ALS), which contributed to her ankle injury initially by weakening muscles and impairing physical function.

“This is typical,” says Mary Sedarous, M.D., director of the ALS Center at the Hackensack Meridian Neuroscience Institute at Jersey Shore University Medical Center. “People don’t recognize the weakness. Since there isn’t pain, people assume that they injured themselves or it’s a sign of aging.”

Individualized Treatment for ALS

After Emily’s diagnosis, the ALS team at Jersey Shore worked to create a support network and plan for her specifically. ALS progresses differently in every person, so having an experienced team can help people feel more secure about their future.

“They are amazing,” Emily says. “They explained everything, gave me information on what to expect and referred me to other organizations. I felt very supported.”

A diagnosis of ALS dramatically changes life, and family support and dynamics play a large role in the care needed and given. Emily has a wonderful support system of her husband, sister and church community. But she faces challenges day by day, and unsung heroes like EllenAnne Morse, MSN, NP-C, a nurse practitioner with the ALS Center, are there to help.

“At every appointment, we evaluate Emily’s status. We tackle problems from coping with new symptoms to working through insurance inquiries and hurdles,” says EllenAnne. “Sometimes, she just needs to talk.”

It’s this individualized care that makes the difference. Emily knows that if she has questions, EllenAnne will get back to her and take her through every step. It gives Emily a sense of peace. “They approach you with such a caring attitude,” she says.

Telehealth Helps Treatment

The ALS Center at Jersey Shore has been designated as an ALS Association Certified Treatment Center of Excellence for its strong relationship with the local ALS Association chapter, its multidisciplinary approach to care and its focus on research and process improvements. The ALS Center brings all of the latest technological developments to patients, including linking up patients with organizations that can provide speech devices and mobility equipment.

A major recent advancement has been telehealth appointments, which is especially beneficial for people with limited mobility. “Telehealth doesn’t replace in-person visits, but it’s a tremendous help,” Dr. Sedarous says.

Telehealth helps with required face-to-face approvals for various equipment needs, and it allows the ALS team to stay on top of logistics. EllenAnne explains that often, a follow-up telehealth call informs her of issues with equipment acquisition and delivery that she wouldn’t typically know about until the next in-person appointment. ALS can be overwhelming, so these quick meetings give EllenAnne the opportunity to remind patients of various aspects of their treatment.

Telehealth also helps patients feel additional support and connection between appointments. For EllenAnne, these appointments let her know about patients’ symptoms as they happen, which allows her to explain to patients like Emily why it’s happening and give recommendations to help cope with the new symptoms.

Things in Emily’s life are changing, but the ALS Center has the experience and knowledge to support her. “Our experience helps predict what’s going to happen next,” Dr. Sedarous says, adding that this allows patients to prepare for the future.

“I feel pretty lucky to have such an amazing team,” Emily says.

Next Steps & Resources:

• Meet our source: Mary Sedarous, M.D.
• Find an ALS Center near you

The material provided through HealthU is intended to be used as general information only and should not replace the advice of your physician. Always consult your physician for individual care.