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WHAT MY OWN ILLNESS TAUGHT ME ABOUT TREATMENT (PART I)

Shared by: Mae Ann Smith, M.Ed., CCC-SLP from Anchorage, Alaska

August 2013



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Introduction

I experienced liver, kidney, and respiratory failure and was a very lucky person to have been given a liver transplant that saved my life. During this process, I learned SO much from personal experience and a patient's perspective regarding:

  • Anatomy and physiology
  • Sensory processing
  • Our speech and respiratory systems
  • Feeding assessment and treatment
  • Communication intervention
  • Medical case management
  • Medications and their effects on attention and short-term memory

During my hospitalization and outpatient care, I reflected deeply about the children and parents for whom I delivered services in the past.

Insight Regarding Respiration

I learned first-hand about respiration. I was struck by how much I did not know about the ribs and the muscles that allow them to move, as well as the connection between the muscles of the neck, the shoulder girdle, the trunk, and the pelvis. While my core muscles were cut and I could not move, I felt every movement used in speech breathing. I finally understood what dissociation meant (i.e., one part of the body moving separately from another), a term commonly used in neurodevelopmental treatment (NDT). Without functioning core muscles and postural control, I had no dissociation between my pelvis and shoulder girdle. I moved as one unit in midline for a long time.

 

Our ribs become restricted when the core muscles are weak with insufficient muscle tone or injured. I felt the result in shallow breathing, as well as in the effort it took to initiate and sustain exhalation. I could not phonate (i.e., produce speech sound) without exhalation. Speech involves many sophisticated and coordinated movements using a number of structures. Not being able to sit upright kept my ribs flared and immobile. I thought of the kids on my early caseloads with extremely flared and immobile ribs, who were locked into posterior pelvic tilts. And, I was attempting to teach them how to produce speech utterances of increasing length. Yikes!

 

Everything changes with impaired respiration, doesn't it? Shallow respiration hinders voice quality and the ability to sustain vowel sounds. Vowels carry much of the content of speech. It also affects our use of prosody and melody when stringing words together with appropriate pausing and inflection. Initially, I had no voice and no phonation for several weeks due to trauma from ventilation. I also had restricted rib cage movement for a long time.

 

I thought about Mary Massery teaching us that to breathe is to function. I remembered the wise teachings of Regi Boehme and Rona Alexander who both urged us to look at the pelvis and core movement during respiration. So, I ask “why isn't a course about respiration required at the graduate level in speech-language pathology training programs?” It should be.

 

Long after my surgeries, as a patient receiving physical therapy, I felt my ribcage movement change from flared to more normal excursion. I was relearning how to breathe. It is difficult to inhale, cough, swallow, or increase speech volume when upper ribs are tight. My sternocleidomastoid muscles in the neck (connected to the upper ribs) were as tight as a rope. I clearly felt the importance of these muscles for respiration.

Insight Regarding Tubes

I had mechanical ventilation for 2 weeks and again during surgeries. I was frightened by the thought of having those tubes in my mouth and throat. I prayed that I would be able to breathe on my own – we often forget what a privilege this truly is.

 

The sensation of having tubes in my mouth and throat lasted quite a long time after the tubes were removed - was this sensation memory? I thought about what sensations our young clients might be experiencing and cannot tell us. They often don’t show many outward signs (that we can read) regarding their inner discomfort or feelings. We really have no idea how they feel in their throats or how their respiration feels. I wonder how many toddlers refuse to talk or swallow due to trauma from tube insertion.

 

My throat, vocal cords, and tongue were all are affected by the presence of tubes placed into my mouth and throat. My vocal cords were traumatized for a few weeks, unable to close/approximate to produce voice. Additionally, respiratory distress and lack of core muscle function gave me very little respiratory control for speech.

 

When able to swallow melted ice chips, my throat refused to swallow a spoonful of Jell-O or a small pill. I would cognitively tell myself to swallow, but the mechanism did not want to allow anything to pass through those portals.

Insight Regarding Communication

I found myself locked into nodding and smiling as my only form of communication, not being able tell my doctors anything. I wanted to thank them. I wanted to confirm my pain. I wanted my voice to give me identify.

 

A speech-language pathologist (SLP) came to my bedside to provide treatment. She listened to my bark - that was all I could muster at first. I sounded worse than a dying dog when I began to vocalize again. And even under sedation, I wondered if I had vocal cord paralysis, nodules, or cancer - it all came back to me. I finally understood first hand that exhalation is the underlying process upon which even a tiny vocal sound is produced.

 

I was not given a communication board. Maybe the SLP didn't think I needed one as my needs were being met in the ICU (Intensive Care Unit). I was too weak to hold or use a pen. I felt the power of the pointer finger and the few facial expressions I could offer. I thought about getting a therapy dog to bark on my behalf. I reflected upon many of the frustrations and behaviors of young toddlers who are nonverbal and without a means of communication.

 

My voice gradually came back but with a very deep, hoarse-sounding quality. I sounded like Lauren Bacall - a throaty voice. I couldn't sustain more than 2 or 3 words during an exhalation. And my exhale was with great effort. But, what a profound experience to be able to talk after a month of no voice at all. This made me think of the kids with whom we work for a long time, and all of sudden a word approximation is produced. The parents think we are miracle workers. For me, my voice confirmed that I was alive when I spoke to my brothers in New Jersey.

 

FROM DIANE BAHR: You have been reading Part I of Mae Ann’s insightful and inspiring story about what she learned during her own illness and recovery regarding treatment. In Part II, she will share her insights regarding “sensory processing” and returning to “eating and drinking.” This will be published in September.