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Ron’s Journey with Dysphagia

Meet Ron:

Husband, father of 4, grandfather of 5, active tennis enthusiast, yogi, Penn State Emeritus Master Gardner. And now, a person living with dysphagia.

Ron’s journey with dysphagia began about 12 years ago. He visited multiple expert medical professionals and underwent numerous therapies, but nothing seemed to improve his ability to swallow. Ron was diagnosed with Myotonic Dystrophy (MD), a rare disease with no known cure. Following his diagnosis, Ron discovered that 40% of patients diagnosed with MD have difficulty swallowing, known as dysphagia. However, there consistently was no new information or research addressing this problem at the annual Myotonic Dystrophy conventions, and Ron’s requests to investigate the swallowing problem in people with MD were left unaddressed.

Because of the progressive difficulties with swallowing, Ron had a feeding tube placed on July 24, 2018, a decision he made knowing that it would allow him to receive the nutrition required to continue the activities he enjoys most: playing tennis, running, bowling, practicing yoga, and doing heavy gardening work.

After receiving his feeding tube, he gained about 10 pounds within a month. However, Ron experienced significant stomach distress with commercially prepared feeding tube blends. To address this issue, Ron’s wife joined in his journey, creating a variety of food blends using fresh meat, vegetables, fruits, grains, and honey that Ron is able to take through his feeding tube.

Ron and his wife received training and education from a board-certified dietitian to assure he would receive the proper nutrition. On recommendation of Ron’s dietitian, his wife uses the USDA My Plate Food System, which is a visual representation of the five food groups (fruit, vegetables, grains, protein, and dairy) that make up a healthy and balanced diet, designed to help individuals make healthier food choices and improve their overall health.

Ron’s wife blends all the ingredients in a powerful Vitamix blender and makes three complete, nutritious blends every day. As able, Ron continues to eat some foods like soft desserts and mashed potatoes, orally.

Ron’s journey with dysphagia has been a difficult one, but he and his wife have learned to adapt and find new ways to maintain nutrition that allows Ron to remain as healthy and active as possible. He stays positive, mentally strong and never gives up the will to enjoy one day at a time. His experience has taught his valuable lessons that he can share with others. Ron hopes that by sharing his story, he can raise awareness about dysphagia and inspire others who are facing similar challenges.