Sara Wheeler is living with ALS, or Amyotrophic Lateral Sclerosis, a neurodegenerative disease that aggressively attacks nerve cells associated with muscle control. She began noticing a loss of muscle control and cramps in her feet in 2018. She saw several doctors and specialists before being diagnosed with ALS roughly three years after her symptoms first appeared. Genetic testing showed she had “familial ALS,” the type caused by an inherited genetic mutation. The former nurse, wife, and mother of three children helps others by sharing her story, and she has advice for anyone on any type of medical journey.
* Advocate for yourself
Sara says advocating for yourself is the most important piece of advice she has for anyone dealing with a health issue. Her symptoms were not typical for an ALS patient, especially since she was in her mid-thirties, but she kept asking questions and going to see specialists until she got the correct diagnosis.
* Ask for help navigating insurance and financial needs
Sara reminds others there is power in asking for help, especially when you’re dealing with insurance and financial issues that you may not fully understand. She signed up for “all the bells and whistles” on her insurance plan and learned she had benefits that helped her navigate life insurance, catastrophic insurance, and Social Security Disability.
* Never feel bad asking for more opinions
Sara says trust your body, and if it doesn’t feel right, it’s important to find a doctor that will work with you to find answers and ease.
“ALS symptoms are no joke, and it is a race against time,” said Wheeler. “It took almost three years to get a diagnosis, and it is always in my mind if my doctors looked a little closer, I could have started trial treatments sooner.”
* Don’t delay in seeking medical advice
Seek medical advice as soon as you know something isn’t right. She says it’s scary, expensive, and stressful. But it’s better to find answers sooner rather than later.
* Get honest with yourself about your priorities
When you get a diagnosis like ALS, suddenly the truly important things in life like spending time with family can feel urgent. Sara tells others she felt selfish that it took a tragedy to understand the importance of some of those things and other dreams on her bucket list.
“Working the day away seems trivial,” said Wheeler. “Time is limited, so spending it doing what you love and being with who you love is important. Make the call. Take the trip. Eat the ice cream.”
Read more advice on navigating medical journeys from Sara Wheeler in this Parade magazine article. For more information about ALS and other neuromuscular conditions, visit www.austinneuromuscle.com or call (512) 920-0140.