MY FA Story

My case is atypical and was detected later than normal. As an infant I experienced congestive heart failure and, at the time, it was treated solely as a heart condition. The technology to screen for genetic diseases wasn’t yet available. I developed gait and balance issues in my mid-20s. It wasn't until those were investigated that FA came to light. I was officially diagnosed when I was 31 years old.

A Typical Day

I get up early in the morning and spend the first 15 minutes in prayer then catching the local weather and news. Getting ready for work usually takes an additional hour and my workday usually lasts 8 to 9 hours.

Over the last 12 1/2 years, I’ve worked as a mechanical engineer for a ball valve manufacturer for oil, gas, and residential utility industries. My responsibilities in production support vary day to day. The central part of my work is design and continuous improvement with some hands-on troubleshooting. It is labor-intensive at times – with lots of walking, lifting, and transferring. In recent years, after tripping and falling on my chin at work, I have started using a manual push cart to help with stability and carrying material.

I return home in the late afternoon and evenings are spent getting ready for the next day and a leisure activity or two. I try to be in bed between 9:30 and 10:30 on weeknights. Friday night and weekend routines are usually more relaxed.

LIFESTYLE, HOBBIES & INTERESTS

Aside from the physical demands of the job and working out with resistance bands about three times a week, I try to stay physically active as much as I can. I’ve also changed my diet from processed sugar and bad fats to low salt and high protein. During my down time, I enjoy reading a variety of genres, spend time writing out story plots and concepts, and learning about astronomy, space exploration, archeology - particularly Ancient Egypt and Rome’s occupation of Great Britain.

DRIVE TO MOVE FORWARD

I keep a healthy perspective on things – realizing that the world is bigger than me and my problems – including FA. Life is oddly more satisfying when you put the needs of others before your own.

Since receiving the FA diagnosis, I’ve kept a positive outlook by reminding myself that it’s all a matter of perspective. FA is a challenge in life but it’s not the authority. It doesn’t define me; it’s just a part of me. I also have a strong faith, prayer warrior friends, and parents who are a great source of moral support.

Favorite Quote

“Be joyful in hope , patient in affliction, faithful in prayer.” ~ Romans 12:12