ALS Ice Bucket Challenge Progress
By Juliet Pierce, RN
The concert hall lights dim, there is silence, musicians are tuned and ready, and all eyes are focused on the conductor as he raises his baton, and the music begins…. That was my life before I became a nurse. Transitioning from a Juilliard trained flutist to Registered Nurse was quite a leap. However, I found ways to apply the training and discipline I honed as a classical flutist toward the challenges of my nursing career.
Twenty- five years later, I continue to perform as a flutist and thrive as a nurse. My journey through nursing has taken me from the hospital to the non-profit world as a Care Services Specialist with The ALS Association Mid-America Chapter. If the catastrophic diagnosis of ALS was translated into music, it would not be melodious. Amyotrophic Lateral Sclerosis is a fatal neurodegenerative disease that occurs when motor nerve cells cease to function and die. Ultimately, people living with ALS are trapped inside a body they can no longer control, slowly paralyzed until they can no longer breathe.
Although ALS is a neurological disorder, its functional and emotional consequences require the expertise of many professionals. This is why the multidisciplinary teams at The ALS Association Certified Centers of Excellence® are so crucial. The benefit of the multidisciplinary approach is that people living with ALS receive all of their care harmoniously at a single site from a specialized, collaborative team, rather than going from department to department or office to office during several days. In fact, the American Academy of Neurology's ALS Practice Parameters state that evidence-based studies show improved quality of life and a positive effect on longevity for those who regularly attend an ALS multidisciplinary clinic.
One of my roles with The ALS Association is Clinic Liaison for the ALS Treatment Center at the University of Kansas, KU Medical Center. Working with this team of experts reminds me of my days in the symphony. The Medical Director, and world class-neurologist Dr. April McVey, is our conductor. Her orchestra is comprised of a Respiratory Therapist, Occupational and Physical Therapist, Social Worker, Speech Language Pathologist, Registered Dietician, Medical Equipment, Communication Device expert, and an ALS Research team. To become certified as an ALS Certified Center of Excellence, an ALS clinic must achieve national prominence, meet rigorous clinical care standards, and pass a comprehensive site inspection. Much like the level of excellence at The Juilliard School of Music, these distinguished regional ALS centers are recognized as the best in the field with regard to knowledge about and experience in this rare disease.
While the accolades of these treatment centers and their distinguished healthcare professionals are most impressive, there is another attribute that must not go unsung and resonates best in the words of the daughter of a person living with ALS, who explained how they left clinic “with a better understanding of our Mom’s condition and orders for equipment that will comfort her and be helpful to our Dad. But most of all, we left with heart-felt feelings of ‘TLC’ from a team of professionals who sincerely care for our Mom and want the best for her. For that, there are no words to express our thanks. We feel that you all are a blessing from God Himself, and we cherish that blessing and give Him thanks for all of you…. If there are angels walking this earth, I know where at least some of them reside!”
