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FARAFARA Cure FA

Corey Pemberton

CoreyPemberton1Name: Corey Pemberton

Age: 32

Where do you call home? Centerville, Ohio

Education (degree(s): Management Information Systems, B.A. Ohio University 2008

What is your relationship status? I am currently single. I live by myself in my own home in Las Vegas, Nevada.

What's a typical day for you? I work weekdays for the Bureau of Reclamation in Boulder City, Nevada. It is about a 30 minute commute ride from Las Vegas. I drive my own car there.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old. (January 2004) I first noticing my balance was off in the summer of 2003.

Are there any others with FA in your family? Yes, my brother, who is 5 years older than me. 

Describe your transition from walking to walker/wheelchair. Other people began to notice my walking looked funny when I was a sophomore in college. (2005) At first, I got custom orthotics in my shoes to prolong my walking ability. I always wanted to go somewhere close that didn’t require a lot of walking. When I would drink alcohol which was common in college I needed to hold onto someone’s arm for support or take piggy back rides.

When I graduated college in 2008, I had to hold onto my friends arm in order to walk up and receive my diploma. I moved to Las Vegas in late 2008 for a change of scenery. It wasn’t until late 2009, that my mother noticed I had a really hard time getting around and she recommended I get an electric scooter for increased mobility. I was very opposed to this and tried to increase my mobility by using canes and walkers. I started to get frustrated by how long it was taking me to walk. In late 2010, I began using the scooter full-time for safety reasons, and I was enjoying the fact I had increased mobility. 

CoreyPemberton2Describe an adaptation and/or transition you have had to take due to living with FA. In early 2011, I got a lift installed on my car so I wouldn’t have to break down the scooter constantly. In 2012, I started having trouble driving. I felt I couldn’t quickly get my foot from the gas pedal to the brake. I began the process to get certified for hand controls which includes 20 hours of driving instruction. I found what worked best for me was the menox hand control. The menox control is real simple to use, push forward to brake and backwards to accelerate. I finally got certified and this was installed in my car in March 2013. I went through the Bureau of Vocational Rehabilitation of Nevada to help me pay for the menox (hand controls) and the driving courses.

What do you like to do to stay active and what type of exercises work for you to stay strong? I belong to a gym and usually go 2-3 times per week. I concentrate on weight exercises for my legs and arms.

Do you have any hobbies or special interests? In my spare time, I enjoy going to gym.

What is a good trick to make daily life easier? Learn to relax, not everything has a time limit.

When FA gets you down, what do you think/do to feel better? I think of people that are in worse shape (physically and mentally) than me.

What is one way living with FA has POSITIVELY affected your life? Most people are nicer to me because I am in a scooter.

What is a favorite motivational quote of yours? “I did more without the use of my legs, but I went out achieved anyway!”

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would have never imagined from the time I was diagnosed 14 years ago that I would own my house, have a car, and a good job. It is still possible to live the American dream even with this disease.

What is the first thing you want to do when a cure/treatment to FA is found? I have always wanted a silver Corvette. I will buy one and not be forced to customize in order to drive it.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I don’t let FA dictate how I live my life. I live my life as if I was normal.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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