Health Care

Finding Highly Specialized Care for ALS

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John Driskell Hopkins, a founding member of one of country music's most popular bands, the Zac Brown Band, recently announced he has been diagnosed with amyotrophic lateral sclerosis (ALS). While on tour in 2019, Hopkins noticed something was off when playing the bass. He could not play as fast as before, and dancing around the stage became more difficult. He also noticed that he was slurring his speech at times.

Over the next two years, Hopkins saw multiple neurologists and specialists until he was finally diagnosed with ALS in December 2021, just a few days before Christmas. Hopkins says his symptoms have been slowly progressing from the start, and doctors believe they will continue to progress.

"Unfortunately, ALS catches many patients by surprise. One day you are doing a regular activity like walking your dog or driving to work. The next, you start to realize that your movements are stiffer and more uncontrolled," says Dr. Jerath, Medical Director for the Neuromuscular Medicine Program at AdventHealth.

The AdventHealth Neuromuscular Medicine Program is an ALS Association - Affiliated Clinic offering a multidisciplinary team of specially trained health care professionals who address the many different needs of ALS patients during a single visit.

Read on to learn more about the condition and what our teams do to help patients live life to the fullest after a diagnosis.

 

What is ALS?

ALS, also known as Lou Gehrig's disease, is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, leading to weakened muscles and decreased physical mobility.

"People with ALS eventually lose the ability to walk, dress, write, speak, swallow and breathe," says Dr. Jerath, "Unfortunately, the disease is always fatal. The average survival time is three years." About 20% of people with ALS live five years, 10% survive ten years, and 5% live 20 years or longer in rare cases.

"There is currently no cure for ALS, but at AdventHealth, we are always researching and working on learning more about the condition so that one day we can offer the hope that patients and their loved ones are looking for," encourages Dr. Jerath. We are currently offering a clinical trial for patients diagnosed with ALS.

 

What Are the Symptoms of ALS?

The hallmark of ALS is progressive weakness. ALS often begins with weakness in one limb before spreading to other parts of the body. In Hopkins' case, he noticed that his bass-playing hand was starting to fail him. Here are symptoms to be aware of:

  • Difficulty with simple tasks like buttoning a shirt or holding a cup
  • Difficulty with swallowing, talking, chewing or speech
  • Fasciculations which are spontaneous muscle twitches that occur anywhere in the body
  • Weakness in the face, arms, legs, or difficulty breathing

"At the onset, ALS symptoms may be easily confused with those of other conditions," explains Dr. Jerath, "a second opinion on an ALS diagnosis is common.”

 

How is ALS Treated?

"Unfortunately, no treatments currently exist to cure ALS; however, many treatments exist to manage symptoms and provide comfort," says Dr. Jerath. Two FDA-approved medicines can significantly delay the onset of symptoms.

At our ALS clinic, we provide symptom management through whole-person care. Our approach is to make it easier to navigate through this challenging diagnosis by providing trained experts from varying fields who can educate, teach, and become a formal part of their support team during the allotted 2.5-hour appointment. Together we determine goals of care and work collaboratively to ensure each person’s needs and goals for their care are heard. Our clinic includes physical, occupational, speech and respiratory therapy services, as well as mobility specialists, a registered dietitian, a representative from the ALS Association (ALSA) and clinical social workers to address any psychosocial barriers to feeling whole. Unique to AdventHealth, we provide genetic testing and counseling by our free in-clinic genetic counselor. 

"ALS doesn't just affect a patient's physical health. That is why we are committed to caring for your whole health — body, mind, and spirit," explains Dr. Jerath. 

“An ALS diagnosis is devastating and life-altering for the person living with ALS as well as their care partner and family. Our goal as clinical social workers is to provide supportive counseling and psychoeducation and assist with care navigation throughout the person’s continuum of care,” explains Laura Russell, LCSW.    

 

World-Class Neuromuscular Care is Close to Home

"ALS is a complex disease to diagnose, treat and manage, but our multidisciplinary team at the AdventHealth Neuroscience Institute's Neuromuscular Medicine Program offers comfort, expertise and support," says Dr. Jerath.

If you or a loved one experiences symptoms associated with ALS, request a consultation with a specialist today.

If you have received a diagnosis of ALS or another neuromuscular disorder, support is available. Please contact the AdventHealth Neuromuscular Outreach Program at [email protected] or Call407-303-1123. Information about our clinical trial can be obtained by contacting [email protected].

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