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FARAFARA Cure FA

Keith OBrien

KeithOBrien1Name: Keith OBrien

Age: 17

Where do you call home? Tom's River, NJ

Education: I'll graduate TR High School East in 2016

What’s a typical day for you? A typical day for me is waking up, going to school, coming home, and practicing guitar until I go to sleep. Sometimes I'll watch TV or a Movie, I don't listen to music a lot because I'm usually too busy practicing.

How long have you known you are living with FA? I've known about my FA since around 4th grade.

Are there any others with FA in your family? My older brother has FA, we're the only two.

Describe an adaptation you have had to make due to living with FA. I've not yet had to use a mobility device, but I have had to make changes in my life. For example, balancing while showering has become difficult, so we've installed a few handles in the shower. Beyond that I try not to make accommodations, I like to push myself to be as free from assistance as I can possibly be. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I don't really go out of my way to exercise. Playing guitar keeps my hands strong and nimble, and that's all I really need.

Do you have any hobbies or special interests? My hobbies are guitar playing and record collecting

What is a good trick to make daily life easier? On a personal level, I don't really observe any tricks or accommodations I have, just because it's so normal to me I don't see them as "tricks to make like easier", I just view them as normal things I do.

KeithOBrien2When FA gets you down, what do you do to feel better? When I want to feel good I do one of two things; either I pick up my guitar and push myself to the point of total obliviousness of the outside world, or I'll do the opposite. Put the guitar down for a while, watch a show, maybe listen to an album or two.

What is one way living with FA has POSITIVELY affected your life? Living with FA has made me a much stronger person. Whether intentionally or not, I work just a bit harder to do things than a non-ataxian. These little things build up, you learn how to adapt, how to truly push yourself. At times I need to push myself to be "normal", but then I take it a step beyond and keep pushing to make myself better.

What is a favorite motivational quote of yours? "If it can't be done in bed, it's not worth doing" - Dave Van Ronk

What is the best advice YOU could give to someone who has been newly diagnosed with FA? My best advice would be that it's not as scary as it seems. I remember being afraid that I'd wake up one day and not be able to do the things I love. It's degenerative, yes, but it takes time. Sure your body is taking (let's say) 2 steps back every day, but as you go on you learn to take 4 forward steps, and cancel those out. Does that make sense? I guess in a real world example, I was always afraid I'd lose my ability to play guitar. But I kept practicing and practicing, and that strength I've developed in my hands isn't going away any time soon. Where was I going with this?

What is the first thing you want to do when treatment or a cure for FA is found? I mean, the first thing I'd probably want to do when I find out there's a cure/treatment is go out and get the it, yno?

Also, if anyone would want to contact me, my email is keith.ob.music@gmail.com.

Follow these links to hear and learn more about Keith's music! keithobrien.bandcamp.com or keithobrienmusic.tumblr.com and gigsalad.com/keith_obrien_toms_river.

We are STRONGER TOGETHER! Find a new Meet the Community every Monday.

ErinONeilmtcsignatureErinONeil2015


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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