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|Newsletters: Disabled Couple Is Doing It All|
Disabled Couple Is Doing It All
A small embroidered pillow reading, "Grow old with me, the best is yet to be,” sits on our sofa. The sentiment is one that Mark and I have taken to heart. Since our marriage twelve years ago, we have worked together to overcome obstacles that would defeat most couples. But overcoming obstacles is a way of life for both of us, as we each had to learn to overcome physical and medical challenges long before we married.
In 1980, when Mark was a high-school football player, he was seriously injured in a motorcycle accident. He was comatose and in the hospital for six weeks. He suffered permanent brain damage that affected his speech and limited his balance, fine motor skills, and mobility. He worked for months to regain the ability to speak and walk, and he was able to discard his wheelchair in time to walk across the stage with his high-school graduating class in 1982. Mark attended Moody Bible Institute for a time and completed a vocational training program in small-engine repair.
I was born with cerebral palsy with left hemiplegia (which means I have very limited use of my left hand and a slightly shorter left leg, resulting in a limp) and a slight speech impediment. Empowered by my mother, though, I have had a drive to be independent all my life and was able to be mainstreamed through school. I have earned two degrees—a bachelor’s in social work from Northern Kentucky University in 1977 and a medical-records associate’s degree from Central Piedmont Community College in Charlotte, North Carolina, in 1994.
While I was working as a social worker in 1980, I began having seizures, which led to a stroke when I was twenty-four. The drive to be independent that had carried me through life to that point was tested again later, when the stroke eventually took away my ability to speak and eat without aspiration.
Loves Blooms at Bible Study
Mark and I met at church and then again at an annual bicycle touring event. I was a volunteer and Mark was a cyclist. We began dating after I started attending a weekly Bible study held in Mark’s home.
He endeared himself to me when he found a three-wheel tricycle and altered it to accommodate my balancing problems. He attached a large seat and a lawn-mower steering wheel. We married in 1998.
In 2000, I was told I would have to depend on a feeding tube for the rest for my life, due to worries of aspiration. I was afraid the tube would limit my activities and I refused to have one inserted. I took speech therapy for a year, trying to regain the ability to eat, but I was slowly starving to death. After a year I agreed to have the tube inserted into my stomach.
When I came home from the hospital, I had an intravenous pole with a pump attached for tube feeding. I now faced a new challenge to my independence: I could not manage to feed myself with one hand.
The bond between us and the value we place on independence inspired Mark to create a device that would give me more independence in feeding myself. After four or five versions, he came up with the Jackson PEG-tube stand. It is a portable, adjustable device that holds a feeding tube, and it can be used with one hand.
Often enteral bags are held on IV poles for gravity drips, or the formula and a pump are carried in a backpack. Neither of these options is very easy to use with one hand. When I first used the stand Mark developed, I knew I would be okay and could start planning for a future. Needing help every time I ate was unthinkable to me.
A New Venture Is Born
Mark and I formed Jackson PEG Tube Stands, LLC, in 2003 and began to explore the possibility of patenting and marketing the stand. We worked with the University of Kentucky Center for Manufacturing to improve upon the product’s design and make prototypes with a grant from the Rural Innovation Fund, which supports new business ventures.
We are excited about the possibility of marketing the device, but are more excited about the impact it may have on those who rely on bolus PEG-tube feeding.
The stand has improved my quality of life because I don’t have to rely on someone else to feed me. It has allowed me to travel and take meals wherever I go.
Bike Tour E-mail Takes a Detour to the Oley Foundation
Mark and I attended the annual Oley Foundation conference for the first time in 2010. However, it was not our first contact with Oley and its staff. Shortly after I got my PEG tube, I was searching the Internet for information on living with a tube. I came across the Oley Foundation and the e-mail address for Ellie Wilson, then the outreach staff member. I stored Ellie’s e-mail address in my address book for future reference.In 2005, I was e-mailing cyclists in our region on updates for another bike tour when I accidentally included Ellie in the mailing. One of the cyclists was named Ed Wilson and his e-mail address was similar to Ellie’s. When all the bike tour e-mails were dutifully sent, we waited for cyclists to respond. It did not take long to receive a reply from Ellie.
Ellie politely explained she would not be participating in the bike tour. Could I please take her name off the mailing list? she asked. When I saw she was writing from Oley, I realized my mistake and took the opportunity to explain I was on a PEG tube and was in the process of developing an assistive device for PEG users. We exchanged a few e-mails about the irony of the error.
My e-mail communication with Ellie continued for five years. We explored the Oley Web site and would discuss issues with Ellie. When we were finally able to attend our first Oley conference this year, we were thrilled to meet Ellie and other Oley staff in person. Ellie is no longer on the Oley staff but she came to spend a day at the conference and to meet us.
As hard as we have worked to be together and live a full life, it has come at a high price for Mark. When we got married, Mark lost his Social Security and medical coverage from the state. My Social Security Disability payments are above the limits allowed for him to qualify for any assistance.
Mark is concerned about what would happen if he got seriously injured or ill. To remedy the situation he has opened his own lawn-care business and files taxes each year. This will eventually allow him to qualify for Social Security disability benefits. The work is demanding on his body, though, and he is exploring his eligibility for assistance from Social Security. He is working toward a solution.
Living Life to the Fullest
What do we do with our time? Besides marketing our invention, we have served as organizers for the annual Appalachian Bike Tour at Yatesville Lake for about seven years. The event is a fundraiser for a local college scholarship, which is awarded to a high school senior each spring. I also helped organize and research a book on the history of First Baptist Church, where I am a member and Mark serves as deacon. Mark was recently appointed by the governor of Kentucky to serve on the statewide Council for Vocational Rehabilitation.
The Jackson PEG Tube Stand is patented and is available for purchase at www.jacksonpegtubestands.com.
LifelineLetter, January/February 2011
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Feeding Tube Awareness Week
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Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week