by Jan C. Pryor M.A., CCC-SLP, BRS-S
I have been a practicing speech and language pathologist for over 25 years specializing in Dysphagia, yet I am constantly in the process of learning from my patients. Here are some direct quotes and hard won lessons from the men and women that I have had the privilege of working with. Their strength and bravery are the valuable “pearls of wisdom” they have shared with me, that I am now happy to pass along to you.
ATTITUDE: “This is not forever, this is for right now.”
PERSPECTIVE: “Don’t look ahead, look back. Ask yourself, where was I three months ago? That usually makes me feel better.”
HUMOR: Always be on the lookout for the humor that inevitably arises out of the situation, or in spite of it. Laughter has healing properties.
PATIENCE & PERSISTENCE: I never can tell who, how or when someone will recover. I have seen people with very “minor” dysphagia who never improve or get off a feeding tube and I have seen the most severe patients (who cannot even swallow their own saliva) who have been feeding tube dependent for a year or more yet have their gastrostomy tubes removed and eat totally orally again. In each case the key ingredients were determination, perseverance and motivation to “get there.”
NO JUDGMENT: I have learned not to judge people with dysphagia who are not motivated to eat. For some with dry mouth (xerostomia) and loss of taste (dysgeusia) eating is not pleasurable. When food tastes like spoiled meat and favorite things like coffee or chocolate are now unpalatable, swallowing is all work and no pleasure. Individuals simply have to decide for themselves what is right for them.
ADAPTATION: There are various adaptations for a person with swallowing impairments that can improve their quality of life, some of these are: chewing for pleasurable taste (and spitting it out), working to at least enjoy sips of cold water, changing the texture of certain foods (softer purees, liquids) improving overall health by taking in better nutrition (healthier blends of berries, yogurt, flax seed, etc) or switching to a less cumbersome gastrostomy tube (lower profile g-tube.) At differing levels of swallowing function there are often adaptations that can have a positive impact.
HOPEFULLNESS: Never give up hope! There is always something we can improve.
This article is for informational purposes only, and should not be used as a substitute for consultation with an appropriate health care professional, as each individual’s medical situation is unique. It is important that you consult with your physician before implementing any course of treatment, and do not attempt any therapeutic technique when you are alone or a without access to emergency medical care.