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

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

September 2013



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FROM DIANE BAHR: In August, we heard the first part of Mae Ann’s awe inspiring and insightful story regarding her illness, recovery, and resulting treatment insights (during a liver transplant). Here is the rest of her story.

 

Insight Regarding Eating and Drinking

 

During periods of time when I was given no food or liquid by mouth (NPO), I began to wonder, “What sort of research is there in our field about taste buds?” It seemed like an eternity of ice chips to quench my thirst. When I was cleared to eat food, taste did not register as I remembered it. The sensations of texture, consistency, and weight of food also felt odd and foreign in my mouth. Therefore, I really didn't want to eat. Putting food, any food, into my mouth was an unpleasant experience. I had been without typical oral sensations along with little to no added sensory stimulation for a period of time. It made me feel sensory different. So, I thought about the sensory differences we observe in so many of our clients. Certainly, their limited oral, food, and liquid preferences would alter or bias their taste, texture, and consistency sensations.

 

Even the coating on the many pills I had to take began to yield a list of aversive texture and taste descriptors in my mind. One pill actually felt like Velcro in my mouth. This reminded me of oral discrimination tasks with different food textures, shapes, and consistencies we did in feeding workshops that made me more aware of what my clients might be experiencing. I also became attuned to what it feels like to have someone feed me. I initially felt threatened by someone offering a spoon to my mouth. All of those graceful, innate, sequenced skills of anticipation, head moving forward, mouth opening, and tongue being ready fell apart for me when someone offered me a spoon.

 

Since I had not experienced a typical variety of oral sensations for a while, I became increasingly cautious about each oral sensation. I thought about the sensory experiences of clients with oral defensiveness, as well as  those being weaned from feeding tubes. The first thing we work with as feeding therapists is to have these clients look at and smell a food before touching, playing with, tasting, or eating it. How a food looked easily triggered a “no thank you” from me, so I had a way to go in this process. I also found myself accidentally biting my lip, tongue, or inside cheek, not because I had decreased oral coordination, but because I hadn't used my chewing skills in many months and oral sensation had been limited.

 

In order to stay healthy for my transplant surgery, I had to eat protein. I was given a daily number of calories as a goal. Not wanting to eat most foods, I relied upon a liquid protein diet as many of our clients do. Adding ginger ale made the protein shakes palatable for me. Additionally, I experienced the value of making one small change at a time to improve oral sensation. That was when I realized that it was OK to have the same food 3 or more times as a first step in making a needed change. Sound familiar? Do some of your clients need to take these types of small steps? I was also reminded of the crucial role of consistency and follow-through with a feeding program's goals! Consistency for me meant follow-through at every meal and snack, every day. Otherwise, I would fall back into my old comfortable patterns.

 

I had little core or trunk activity during my illness. I relied upon the external support of my hospital bed for positioning. Swallowing is not easy when you cannot sit upright! And, not even a tilted cup or a bendable straw facilitated a good swallow for me. I did, however, experience the effectiveness of ice water in accomplishing a safe swallow. Eating takes energy, and energy is a function of breathing. Breathing for swallowing and chewing must be coordinated. With poor positioning, as well as a stiff and asymmetrical neck (my right side was immobile due to main lines and catheters), I experienced how difficult it was to chew and swallow. I definitely felt the fear of choking.

 

I will say that my taste buds were not working for a good 4 months, and this baffled my husband and son. They just couldn't understand why I couldn't eat. They encouraged me by saying, "just take one more bite" - sound familiar? Boy, did that experience make me reflect on feeding therapy.  I also realized that if I didn't have one more bite for calorie intake, there was the option of a feeding tube. My husband learned to make “ever so tiny” changes in my diet, providing as many daily opportunities as there were. Isn't this what we do in our feeding treatment? I recalled so much of what I learned from Marsha Dunn Klein, Suzanne Evans Morris, and Marjorie Meyer Palmer. Thank you, Ladies, for teaching me so much.

 

I tried so hard to take a bite. And, I remember having strong negative feelings and sensations regarding slippery, rubbery, bready, and sweet or sugary foods. I was super vigilant about adding spices and herbs because not one of my favorite foods from the past tasted good. I did not want them. Jell-O always tasted OK - it was a safe haven. This caused me to reflect on how important our professional feeding therapists are in our field and how much problem solving we have to do when we see a client only once per week. Families must be vigilant about follow-through, since our clients eat 3 to 5 times per day. 

 

Insight Regarding Sensory Processing

 

When surgery cuts through the core muscles, it also cuts through the nervous system. Injured nerves are very confused when they begin to regain function in response to sensory input. My physical therapist explained that an injured or mixed-up nervous system has few clues about “how to fire” when returning to normal. Learning pathways are regained through sensory-motor treatment. I learned that a variety of sensory experiences as part of treatment DO make a difference in helping the nervous system remember how to process and integrate sensory input.

 

After being ventilated and placed on supplemental oxygen, smells bothered me terribly - food smells, people smells, environmental smells. Loud voices, background sounds, and different lighting irritated me. I noticed that my nervous system was completely out of balance. Internal sensations were unreliable about temperature, texture, weight, smells, sounds, and lighting. I was hyper-vigilant in response to sensory input and experienced what I refer to as internal sensory confusion (e.g., feelings of wasp stings or dripping water on my body when these were not present). My temperature regulation and vestibular sensations were also off kilter. Nothing felt right.

 

Boy, did that make me think about some of our kids whose sensory systems are confused due to their own neurological make-up. Our understanding of their sensory systems and the importance of treating them appropriately cannot be underestimated. I thought about what our clients with sensory differences are telling us via their body movements, sensation-seeking, and sensation-avoiding behaviors.

 

Movement activities, proprioceptive treatment, and massage helped me to regain movement, manage pain, and calm my confused sensory systems. For me, massage released tight fascia to help my muscles function; it also opened pathways to my sensory systems. Massage techniques send messages to the sensory systems to help calm otherwise overloaded systems. They also prepare the body for postural control and function. The neurological, sensory, and fascial systems are extremely complex. I now understand why parents often have difficulty understanding what massage and other treatment modalities can accomplish. This made me think about Diane Bahr’s book Nobody Ever Told Me (or My Mother) That!, in which she explains the many benefits of massage and other forms of treatment for babies and young children to parents and professionals. Thank you, Diane, for taking the time to do this.

 

Summary

 

Through my own healing process, I was reminded that we treat so much that we cannot see. We also learn extensively from experiences with our ever-growing caseloads that go far beyond what we learn in university or continuing education courses. It is truly from our clients who offer us hands-on experience that we can observe the timeline of changes in speech, communication, learning, and feeding functions. Our observations of what makes a difference in our clients’ quality of function and life determine the types of treatment we choose. Seeing the effects of our treatment is as close as we often come to stepping into our client’s shoes. My own illness and recovery process allowed me see the treatment process from a client’s or patient’s perspective. I hope my story has given you some insight as well.