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On Top of the World

Rick Davis, HEN Consumer

I have been 100 percent dependent on home enteral nutrition (HEN) for more than eighteen years and have learned that HEN should not inhibit a person from doing whatever they want. My right side and my balance were affected by a stroke in December 2000. My right leg would not support my weight and I had to use a walker. I could not raise my right arm. I could not swallow and had to use a feeding tube for all my nutrition and hydration. I could not even swallow my saliva and had to spit into a cup every few minutes. My doctors said that most stroke survivors recover their ability to swallow in three to six month.

 

First Few Months on HEN Tough to Swallow

I was extremely weak and felt fatigued all the time. My priority was to recover my strength and endurance. My swallowing problem was only an inconvenience that I thought would be resolved in a few months. During the first few days in the hospital I had physical therapy and swallowing therapy. Every day, I shuffled behind my walker a little bit farther and a little bit farther. When I was sent home,  I walked a little bit farther and a little bit farther. Gradually, my goal was to walk to the end of the block, then two blocks, and then I could walk several blocks without the walker. After several months, I reached more goals: walking a mile, then several miles. We lived in Utah and I had skied before my stroke. Four months after the stroke, I tried to ski, but I was too weak to make turns. I was exercising every day and was slowly getting stronger, But, after six months, I had made no progress with the swallowing therapy. I decided that I needed more help with my swallowing problem.

 

Seeking a Solution for My Swallowing Problem

Living in Salt Lake City, I tried acupuncture and hypnotherapy. I was examined again by my primary care physician and referred to more local doctors: ear, nose and throat doctors, gastroenterologists, and neurologists. I traveled to Chicago to be treated at the Swallowing Physiology Laboratory at Northwestern University. After four visits with no success, I was referred to an otolaryngologist at Columbia University in New York City. On three visits, my cricopharyngeal sphincter was injected with increasingly larger doses of Botox. (The sphincter opening into the esophagus and the esophagus were paralyzed.) Still unable to swallow, I was referred to the Neurological Institute at Baylor University in Houston. Several neurologists and otolaryngologists gave me thorough examinations. Their consensus was that the stroke had hit a bulls'-eye in the cluster of brain cells that control swallowing. I was told that it was very unlikely that I would ever be able to swallow. With that news, I accepted my impairment and determined that I would improve my enteral therapy and improve my attitude. 

 

Change for the Better

 

Before I traveled to Chicago, New York, and Houston, I asked for travel advice from the home care company that provided my formula and supplies. I was given a copy of an article about travel with HEN which had been printed in the newsletter of the Oley Foundation. Eighteen months after my stroke, I attended my first Oley Conference. I met home nutrition support consumers, clinicians, exhibitors, and staff who turned my life around! I learned about low-profile tubes, portable pumps, big plastic jugs of formula that were ready to hang from an IV pole, better ways to dissolve my medication for administration through the tube, and presripitions to reduce my saliva and my depression. I learned strategies for appealing bureaucratic decisions denying social security disability. Most of all, I learned from other consumers who managed their therapy around their lives, rather than managing their lives around their therapy. I learned that the clinicians, exhibitors, and staff who attended the conference showed a genuine concern for the well-being of the consumers. They were a resource of experience and knowledge beyond anything I had known before. Wow! It was awesome! I returned home with newfound confidence that my life was going to improve more than I had ever imagined.


 

Setting Goals and Measuring Progress

 

Hiking and Skiing: After I could walk several miles, I began hiking longer, higher, and steeper trails each summer. After four years, I hiked across the Grand Canyon rim to rim--23.4 miles, plus a mile down and a mile up. That had been my ultimate hiking goal and I was satisfied that I had re-gained the level of fitness I had had before the stroke. I re-learned how to ski from a program developed for people with disabilities. My goals were to ski as many days, make as many runs, and accumulate as much vertical feet as I had done before. I kept track of my skiing performance and, after a few years, I was skiing like before.
 
Tube Feeding: I used similar methods of goal-setting and performance measures to improve my tube feeding therapy. When I was first sent home from the hospital after my stroke, I was told to administer formula, with a pump and a feeding bag hanging from an IV pole, four times daily for two and one-half hours each time. My goals was to reduce the tie spent tube feeding so that I would have more time to do the things I wanted to do. Every day, I increased the flow rate a little bit, and the next day, a little bit more. After reaching the maximum flow rate on my pump, I switched to bolus feeding with a 150 mL syringe. As before, I increased the speed of pushing the piston of the syringe a little bit faster and, the next day, a little bit faster. The process took several months. When I had stomach cramps or vomiting, I cut back for a while. When my stomach could tolerate the new level, I again increased the speed of flow, which decreased the time I spent feeding myself.

 

Tolerance for Dining Out: I also used the system of goal-setting and performance measures to increase my tolerance for being with other people who were eating and drinking. At first, it made me angry to see other people eating and drinking--because I could not. Gradually, I joined my family for meals. Soon, I went with them to fast-food restaurants. Then, I went with them to restaurants with table service, telling the waitperson that I would not order because of a medial condition. Finally, we could invite friends to our home for dinner. With a dishtowel draped over my arm, I would tell them that I was their waitperson and that my gratuity would be added to their checks. What could have been awkward was made relaxing with a little bit of humor.

 

Paying It Forward

Oley: I've attended the Oley Conference every year. Every year I learn new things and make new friends. In the same way that I was helped by other consumers, I offer my help to others who need encouragement and advice. I volunteered to become an Oley Ambassador. Later, I was asked to serve on the Board of Trustees. I volunteered to help host the Oley Conference in Salt Lake City. While I was on the board, I was asked to serve as president. At the end of my five-year term, I asked Oley staff members (and everyone else who knew me) to continue referring other consumers to me. 

 

Grand Canyon Hike: As a fund-raiser, with help from my home care company, I used an email campaign to secure pledges for "an old man, disabled by a stroke, to attempt" to hike across the Grand Canyon. It is not an easy hike. Grand Canyon National Park signs are blunt. Under a photo of a young and fit man in hiking gear, the signs say, "Every year we rescue hundreds of people who look like him. If you ae not in good shape, don't even think about hiking to the bottom. DO NOT try to hike from rim to rim in one day." I did it, while infusing water and formula through my feeding tube. Pledges raised more than $17,000 for the Oley Foundation.

 

Life Is Good

 

Support from Oley helped Rick get Rick back on to
the activities he enjoys
like spending time with his
grandson.

In the eighteen years since my stroke and the beginning of my nutritional therapy with a feeding tube, my life has never been better. I can adjust my daily calorie intake and keep my body mass index (BMI) at an ideal level. If I don't get regular exercise, my right side quickly loses strength, so I lift weights and ride a bike. My wife, who supported me full-time after my stroke, has traveled with me to dozens of foreign countries. We moved to Florida ten years ago and enjoy the beach almost every day. We fly to Connecticut frequently to visit our son and his family, including our five-year-old grandson. I exercise at the YMCA at least three days a week. We belong to two gourmet dinner clubs and two wine-tasting groups. We are active in our church. I help a local stroke support group and I've been president of the Men's Newcomer's Club. I continue to call and exchange email with other HEN consumers who need advice and encouragement. I feel very gratified from helping other tube feedings. Although I am "paying it forward," I can never completely repay the Oley Foundation for the positive way they changed my life.

 

Rick's Hike of the Grand Canyon


pdated 5/15/2019

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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