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FARAFARA Cure FA

Alex Fielding

Name: Alex Fielding

Age: 26

Where do you call home? Rhode Island-the Ocean State!

Education: I graduated from Bucknell University with a BS & MS in Chemical Engineering, minoring in Biomedical Engineering and Statistics. I absorb new experiences every day and expect more schooling in my future – I love to learn!

Occupation/Employment: I am currently a Process Engineer for a ceramics manufacturing company. In 3 years they’ve introduced me to hundreds of great people across three different divisions, and brought me from my comfort zone in the northeast to new connections in Arkansas and Texas. Staying focused and being challenged on the job keeps me motivated.

How long have you been living (or known you are living) with Friedreich's Ataxia? I have been living with FA my whole life! (Sorry, bad joke…) I first noticed symptoms in college when I kept falling playing sand volleyball with friends. I noticed more and more difficulty walking (especially walking straight!) to/from class. My progression was mild, so I wrote-off my concerns to stress and a “grad-student” diet – I graduated and started working in MA, living by myself. My balance kept declining and I began seeing a neurologist for answers. Earlier this year, I moved to TX and worked extensively with a neurologist in Dallas, who ordered genetic testing for FA. The diagnosis came back the day I was leaving TX to return home to RI for second opinions and support from family/friends. It’s only been a few months with the knowledge of FA, but I’m learning everything I can, following up with doctors to monitor my health, and meeting FAntastic people in the community!

Do you have any known family history of Friedreich's Ataxia or similar symptoms? No-I'm the first in the family.

Describe your transition from walking to walker/wheelchair. Stay tuned-I'll need help from y'all when I make that transition!

What do you like to do to stay active and what type of exercises do you do to stay strong? My job keeps me active walking around a manufacturing plant all day – on some days, I walk over 5 miles! Outside of work, I walk when I can and ride the stationary bike for 30 minutes most days. I stretch while watching TV and do high rep/body resistance exercises recommended by a friend who is a physical therapist. What I find the most helpful, are the small decisions throughout the day: Struggle up the stairs or take the elevator? Lean on a counter or concentrate on standing unassisted? Sit at my computer working for several hours or force myself up every 10 minutes to do goofy-looking jumping jacks? Staying focused all day to keep moving and challenging my body is important. What's your most comfortable pair of shoes to wear? I’d rather be barefoot! Feeling fresh grass on my feet or walking across a soft rug is refreshing. It also helps my balance avoiding loose shoes or sandals. But in the winter, my moccasin slippers never come off!

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? FA has given me a purpose and allowed me to refocus on what’s important. FA doesn’t restrict my life, it refines it and allows me to focus on my strengths – curiosity, creativity, critical thinking, and caring for others. While I will continue my career and pursue my passions, my main priority is enjoying every day with the people I love. I’ve met very genuine people living with FA and enjoy the connections I’ve just started fostering. Yes, having FA makes daily life more difficult, but working through those difficulties makes life that much more rewarding.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Start talking and keep busy! There is power in numbers and there are thousands of people out there living with FA. You are not alone! Reach out and learn from the community. Focus on all the successes of others and challenge yourself to create your own success story. FA doesn’t stop you from achieving your dreams, it just changes the path you have to take to get there. Keep moving forward and have fun! What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? Everything! Go camping, mountain biking, and hiking, especially climbing mountains. I haven’t been able to ski in years, so a trip to the Alps may be in order…? For my daily life, I can’t wait to play touch football, pickup soccer games, and dance with friends at weddings or weekend bar nights!

"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 believe we are not defined by the obstacles in our lives, but by how we respond to those obstacles. One of my favorite quotes is from Ernest Hemingway: “Every man’s life ends the same way. It is only the details of how he lived and how he died that distinguish one man from another”. I will not have my life defined by my experiences with FA. Instead, my details will come from my talents, success stories, and fun times shared with others. None of my dreams include FA, nor will it preclude me from achieving them. Besides, my initials are AF, not FA!


We are stronger together! Find a new "Meet the Community" interview every Monday. Christina

 


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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