denise tandem bike

Navigating the Unexpected: Denise Neptune’s Journey with ALS

For Denise Neptune, there’s nothing like being outdoors, gardening, hiking or riding a tandem bicycle with her husband. The active couple has covered many miles on their tandem bike over the years, traveling up and down hills and long distances. Now they face an unexpected hill to navigate on their life journey – amyotrophic lateral sclerosis (ALS). 55-year-old Denise was diagnosed with ALS in November 2023.

“I had started to drop things and noticed my hands getting weaker,” explains Denise. “We had just celebrated our son getting married in August 2023 and three months later, I received my ALS diagnosis. It was certainly not easy to accept, and I found myself thinking about other big life experiences I may miss.”

Most commonly known as Lou Gehrig’s disease, ALS is a rapidly progressive disease that attacks the nerve cells responsible for controlling voluntary muscles,  and there is no cure. ALS onset occurs usually between the ages of 40 and 72. Up to 10% of ALS cases are hereditary, and the remainder happen sporadically. The disease may present itself in subtle ways at first with these symptoms:

  • Cramps and twitching in muscles
  • Weakness in an arm, leg, hand or foot
  • Tight and stiff muscles
  • Slurred speech
  • Difficulty chewing or swallowing

“Muscle weakness and atrophy progress in ALS patients and spread to other parts of the body,” says neuromuscular neurologist Dr. Hannah Machemehl. “The rate of disease progression varies with each patient, and in the later stages, people may lose the ability to stand, walk, and breathe. Our goal at Austin Neuromuscular Center is to improve the quality of life for ALS patients and their families.”

ALS Clinic Provides Comprehensive Care and Research

Denise attends the ALS Clinic at ANC which offers comprehensive, compassionate, and cutting-edge care in ALS management. Our multidisciplinary clinic brings together a variety of specialists:

  • Neuromuscular Neurologist
  • Adult Gerontology Acute Care Nurse Practitioner
  • Physical therapist
  • Occupational Therapist
  • Respiratory Therapist
  • Speech and Language Pathologist
  • Social Worker
  • Dietician
  • ALS Association Representatives
  • Adaptive Mobility Representatives
  • Augmentative and Alternative Communication Device Representative

The ALS Clinic also provides patients the opportunity to participate in clinical trials to help in the advancement of ALS research and care. Denise takes prescribed medication with the goal of slowing down the progression of ALS.  She also has chosen to participate in a clinical research study that aims to understand ALS biomarkers.

“ANC’s ALS Clinic has been a game-changer,” she says. “Having all my therapies and consultations in one place saves me so much time and energy. It allows me to focus on getting the most out of each clinic session. I love that I can take part in a clinical research study, because if there is any way I can help people with ALS in the future have better care and treatment options, I want to do everything I can.”

Cherishing Moments with Family and Friends

As she looks to the future, Denise is committed to staying as active as possible. The mother of four admits it can be challenging to watch her husband and children take over some of the caregiver roles. She is thankful for their tandem bicycle and the partnership it requires and represents. Although Denise’s life journey has certainly taken an unexpected path, she knows her husband and family are riding alongside her, and she strongly trusts God has a story to tell through her life.

“I’m cherishing more moments with family and friends,” says Denise. “We’re not taking anything for granted. We’re strengthening our family relationships, and I think that is inspiring others around us to do the same.”

denise family

To learn more about Austin Neuromuscular Center, the ALS Clinic, and our clinical research, click here or call (512) 920-0140.  Follow us on Facebook, LinkedIn, Twitter, and Instagram for updates.