Michelle’s Story

In 2016, Michelle Belmudez had her first fall. Thinking it was a knee problem, she started working hard with a physical therapist. It seemed the harder she worked, the worse she got. She was referred to a neurologist, who was initially stumped and referred Michelle to a different UNMC neurologist. After six more months of tests and treatments for Neuropathy, she decided to go to the Mayo Clinic for a second opinion. The doctors at the Mayo Clinic confirmed that Michelle had ALS. Once Michelle and her husband Terry heard the diagnosis, they didn’t see this diagnosis as the end; they instead knew it was a starting point.

“One of the first thing I did was get on the internet to research ALS, and I found the webpage for The ALS Association in Nebraska. I decided to give them a call to let them know about our situation and asked, ‘What do we do now?’” Terry recalls. “Before I got off the phone, I already had an appointment to come to the ALS Association office once we got back home and was reassured we were not alone. Even after just that first phone call I felt better, and I had more hope and understanding of the road ahead of us.”

After returning from the Mayo Clinic, The ALS Association Certified Treatment Center of Excellence at Nebraska Medicine also confirmed the ALS diagnosis for Michelle in January 2018. Michelle, accompanied by her husband Terry, continues to attend the ALS clinic at UNMC regularly. At the clinic, Michelle sees multiple professionals who specialize in different aspects of ALS treatment and care. “Having all the professionals in one place helps to be better prepared for what’s to come. I get my results from all the doctors and have The ALS Association to help me understand where I am at and how to stay in front of the disease,” Michelle said. Terry added: “The clinic and The ALS Association have been our guiding lights.”

Terry and Michelle also attend ALS Association support groups, sometimes in person or sometimes via video conferencing. Michelle was skeptical about attending at first, so Terry went alone to gather information. “At first, we were listening and learning from others; now we sometimes try help others. With the help of the ALS Association, the diagnosis of ALS does not feel like the end of the road but just another part of the journey providing us with help and support through this devastating disease.”