Roy Paulin Name: Paulin Roy Jr

Age: 38

Where do you call home? The city of lights… Paris (currently).

Education (degree(s): How will FA add to your future [career]?: After my scientific baccalaureate, I completed two trainings at the French national school of civil aviation: flight dispatcher (but it was hard to find job in airline after September 11, even after working few months at Air France) and senior technician in the study and operation of civil aviation, to work for the French Civil Aviation Administration. It requires a lot of constant arrangements to continue working with the evolution of the disease (wheelchair of course but also hearing, slowness, etc.), and a lot of goodwill from the employer.

Who do you live with? My wife and my five years old daughter.

What's a typical day for you? I have a few typical days, but mainly two: at the office and telework. The aim is the same (do my job), but at home I don’t have to be well-dressed, to be right on-time for transportation, and it’s more interesting for me because I don’t lose time for example to go to the company, restaurant, in the elevators... This allows me to schedule my physiotherapy sessions during meals and to pick up my daughter from school (which I cannot do on days at the office).

How long have you known you are living with FA? I was diagnosed in 1996 (early because my sister already has been diagnosed) and I’ve been in a wheelchair since 2000 (quite quickly because I chose to arrange my life as a paraplegic at the time).

Are there others in your family with FA? My little sister (four years younger).

Describe your transition from walking to walker/wheelchair. My mother made the choice to put me in a rehabilitation center (but not for severe disabilities) for the transition. As said above, I made the choice to quickly switch to a wheelchair and to arrange my life as a paraplegic (purely out of ease). I managed to finish my studies in a “normal” course.

What do you like to do to stay active and what type of exercises work for you to stay strong? To be honest, not much other than physical therapy is now getting caught up as I have difficulty moving myself. I plan to buy dumbbells.

Do you have any hobbies or special interests? I had different passions, but the principal remains, of course, aeronautics.

What is a good trick to make daily life easier? Stay informed of everything around us (everything is changing very quickly) and try as much as possible to keep a social life (friends, family, work, association, sport...).

When FA gets you down, what do you think/do to feel better? Visit my family, old friends (they don’t judge you...)

Roy PaulinWhat is one way living with FA has POSITIVELY affected your life? There are so many things I don't think I would have done if I hadn't been disabled (not to mention being able to pass in front of everyone at amusement parks :-p).

What is a favorite motivational quote of yours? "Above the clouds the sky is always blue."

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Contact the (Friedreich Ataxia) association of your country, do not stay alone, surround yourself! You will be pleasantly surprised by the experience of others! And try to do as many things as possible yourself.

What is the first thing you want to do when a cure/treatment to FA is found? Try to get the medicine ;-)

Tell us a little more about you… If you want to know more about me, follow me on Twitter (@paulin_fly) and on LinkedIn (Paulin Roy).

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