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FARAFARA Cure FA

Robert Rhodes

robert rhodes 3Name: Robert Rhodes

Age: 34

Where do you call home? Oklahoma City, Oklahoma

Education (degrees): Bachelor's of Science – Industrial Technology and Associate's of Applied Science – Computer-Aided Design

What is your relationship status? I'm single. I currently live with my parents, but I pay rent monthly. I also help around the house when I can.

What's a typical day for you? I am employed full-time as a mechanical engineer at a manufacturing plant that makes ball valves for the oil and gas industry; work five days – between 46 to 48 hours per week. My primary emphasis is CNC tooling and chuck jaw design, but I have experience in product and quality control engineering as well. My daily tasks often vary greatly. With a combined production floor of over 2 million square feet, I do a significant amount of manual labor - beyond office work. I have been with my employer for 9 ½ years.

How long have you known you are living with FA? My first ataxia-related symptom happened when I was an infant. I had congestive heart failure on both sides of my heart. I experienced slight balance and a disturbed gait when I was in my mid-twenties. I was still in college at the time – and thought it was stress related. It was determined to be FA in December 2014. I took an ataxia-specific genetic blood test ordered by a neurologist.

Are there any others with FA in your family? I have an older brother with a form of ataxia. His type has not been clinically diagnosed yet.

Describe your transition from walking to walker/wheelchair: My progression has been slow so far. Regardless, I use a push cart to help me with stability at work. I also use a cane around home occasionally –, particularly at night.

 

What do you like to do to stay active and what type of exercises work for you to stay strong? The physical demands of my job have helped me to remain strong. I've also voluntarily transitioned to a more athletic-style diet. I hope to add a gym regimen with a personal trainer soon.

 

robert rhodes 2Do you have any hobbies or special interests? I have had a lifelong fascination with astronomy and usually keep up-to-date on the latest news from NASA and Space-X. I consider myself an intermediate-level backyard astronomer. Beyond that, I enjoy reading novels across a wide range of genres and authors. I've also been known to try to type my own. Nothing worthy of publishing yet.

 

When FA gets you down, what do you think/do to feel better? Prayer and reading the Bible are what I turn to the most. I especially turn to the instances where God used weakness and brokenness for his glory.

 

What is one way living with FA has POSITIVELY affected your life? Everyone in the FA community is bound by the same unknown. It isn't an unknown to be feared – but pursued. It has given us all an opportunity for greatness over a problem that few will ever have to face.

 

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don't live in or surrender to a future that doesn't exist yet. You are on a long, incredible journey – not at your final destination. You can still find happiness and satisfaction by living in the moment – not for it. You are not alone.

 

"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 refuse to think of myself as a victim of this disease. Instead, I envision myself as someone who is striving to persevere in spite of it.ChristinHaun mtc sig 16


About the Author

FARA Ambassador Program