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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.

Ron and his wife Kathy studied for and received accreditation to become Penn State Master Gardeners about 12 years ago. This included taking a class in horticulture at the college level. They learned about trees, shrubs, flowers and other growing plants.

Their goal is to teach others about the beauty of raising plants and the fun and excitement it can provide. Ron took additional classes at the local community college and learned how to design garden bed layout for others.

He taught gardening classes at the community college for 5 years. His classes were always well received and he was one of the favorite teachers as voted by the students. Ron also gave at least one hundred gardening talks to local garden clubs, nursing homes, youth groups and local colleges. His favorite gardening talks were about native flowers, butterflies, bees and design and maintenance of special gardens.

Ron and his wife still maintain 8 different garden beds at their home. His favorite is the sunflower garden bed with some mammoths growing to 16’ tall. Ron also designs, builds and maintains 2 garden beds at his church in Latrobe, PA in addition to several garden beds at a local county park.

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.