|Learning to Swallow|
By Debbie Batjer
In 1993 I had a brainstem stroke. It was the result following surgical removal of a benign menengioma. The litany of problems I had is only too familiar to survivors, caregivers, and others working with stroke-related issues. It affected every system in my body except my mind. My mind worked overtime to try to make sense of my new reality and to reconcile this with the needs of my family. I was 48.
This article isn’t a lament of loss. Many could write far more eloquently about loss. Rather, this focuses on APHAGIA (the total absence of swallow) and DYSPHAGIA (difficulty swallowing). Many stroke sufferers have experienced swallowing problems, either temporarily or permanently with varying degrees of intensity. Not much is known about it. I was aphagic for over two years. I relearned to swallow, and for the past 12 years I have been minimally dysphagic. While not a professional in this field, I do have the perspective of time and experience.
Shortly after my stroke, an NG-tube and IV hydrated and nourished me and a suction device “vacuumed” my trach. A few weeks later, a PEG tube was surgically implanted and I happily got rid of the nasal-gastric tube. I had so many disabilities that swallowing was not then a high priority, particularly since I had learned I could live without swallowing if other alternate mechanical supports were available.
Throughout this time, my speech therapist assured me that my swallow reflex would automatically return. Meanwhile she spooned me ice chips to try to stimulate swallow and left me with a lot of literature about swallowing. Nothing worked, but I did develop a term for this period: wait for fate. My weight stabilized, other more pressing problems mitigated, and I began learning adaptive ways to “cheat the [PEG] tube,” streamline feedings or accommodate my disability. The more mobile I became, though, the more frustrated I grew with my aphagia.
I needed to clear and spit every couple of minutes – not pretty. Many strangers kept a distance thinking I had a contagious ailment. Those who didn’t move away simply didn’t get it. It was a lonely time even though I was able to be in public. I was always afraid my PEG would leak or plug, that I’d run out of tissues, or that I’d slobber. Ironically, the more anxious I became, the more saliva I produced. Pooling saliva, therefore, became a metaphor for around-the-clock challenge. When not evacuating it during the day every few minutes, I was drooling at night.
Because I couldn’t eat, I also ironically became fixated on food, its smells and appearance. When I wasn’t pouring liquid nourishment into my PEG, I dreamt about eating. I began reading cookbooks for the first time. I always felt dirty and clumsy. Like many stroke survivors, I had a profound sense of loss over so many basic functions including swallowing, a grieving that no one could understand or diminish. These are just a few of my negative memories. There were many.
Dysphagia (so often confused with the communication disorder by almost the same name) needs to be known outside scientific or therapy circles. Throughout two years of not swallowing, I continually sought information about it and tried unsuccessfully to locate others with the same dysfunction. I needed to find out from those who had recovered how they had done it. I needed others to share their coping strategies. Unfortunately, even now, there are few support groups for dysphagics. Yet we are many and a large percentage are the result of stroke. We need to learn from one another, utilizing all available resources. The internet is a terrific opportunity for everyone, especially for housebound. The Stroke Network can be a valuable sounding board.
Every time I tried something that worked, I somehow felt triumphant. Dysphagics need to feel like masters, rather than victims. Success is measured in small accomplishable actions. As an example, common items might replace hospital devices to help dysphagics be mobile and independent. My electric suction machine to remove my saliva was quickly replaced with decorated plastic sacks on each wrist, one for tissues, one as a “spit” bag. One tether gone. For the first time, I was able to explore mobility. For many months, I hung my hospital feed bag from tree limbs, hall trees, car windows, or whatever elevated place my PEG could reach. Gone the hospital IV pole. Later, I got rid of the feedbag entirely, using a mustard or catsup plastic squirt bottle or a 60 cc. syringe (plunger removed) to let gravity fill my PEG. This enabled me to discreetly take my nourishment anytime, anywhere.
Water periodically infused in my PEG kept me hydrated. A hydrogen-peroxide-soaked Q-tip swabbed daily removed ooze around my PEG site, keeping it clean. Square slitted gauze anchored at the site kept my clothes from rubbing. My speech therapist tested me for any progress and my doctor made sure my medications were in liquid form. Public seating was always chosen for its discreet location. Sitting upright during and after tube feedings was important to prevent reflux. During the years of having a PEG circumvent my mouth, I consciously chewed things I couldn’t swallow and then spit them and the flavored saliva out to keep my teeth from throbbing. When I was first relearning to swallow, it was important to keep my head tucked to one side and to chew everything slowly. Both my family and I learned how to do a Heimlich maneuver if necessitated, also important for all caregivers.
These methods might sound insignificant, but they were liberating for me. Even though my swallowing problems were unchanged, my quality of life had. The techniques and “tricks” dysphagics develop to meet each new challenge need to be shared. I yearned for such hints.
So how did I re-learn to swallow? Thankfully, my speech therapist put me in touch with a researcher who was doing non-invasive biofeedback therapy for the treatment of dysphagia and it worked. Whether it was the treatment, the timing, or the focused effort to relearn swallowing, I’ll never know. Over the following six months, I practiced several hours every day. It was noisy and painstakingly slow, but I eventually consumed enough calories orally to satisfy my doctors that my PEG could be removed. Now, 12 years later, I still have some difficulty swallowing, but now it is more a nuisance than limiting.
Copyright © June 2007
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
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