Carolin 4Name: Carolin Benesch (Caro)

Age: 27

Where do you call home? Münster, Germany

Career: After school, I started working for a travel agency, taking a licensing exam. I worked there until 2016. Since 2017, I'm not working to have enough time for all my therapies and sports because of this disease.

Who do you live with? I'm a single girl and live alone in my beautiful flat.

What's a typical day for you? My day normally starts at 9 am with a short but powerful breakfast at home. (Meals are very important!) Every day, I have therapy. I do physiotherapy once a week, speech therapy twice a week, I meet with a psychiatrist once a month, and I spend 1-2 hours with my personal trainer every week. In the evening, I often meet friends or my sisters, who live close to me.

How long have you known you are living with FA? I was diagnosed in 2010 when I was 19 years old.

Carolin2Are there any others with FA in your family? No.

Do you use anything for mobility? I usually use a walker. When I travel or go shopping, I use my wheelchair. Both are very helpful so it is easier for me to enjoy everything.

What do you like to do to stay active and what types of exercises work for you to stay strong? I want to stay active as long as I can. That's why I'm a fitness advocate! I try to walk with a walker and not depend solely on a wheelchair. Always staying in motion is the best exercise for me. I try to do as much as possible to maintain independence, like driving, but only if it's safe for me.

Do you have any hobbies or special interests? Fitness and nutrition are definitely my hobbies right now, and not just because of ataxia. I'm trying to stay strong, and I love it!

What is a good trick to make daily life easier? Believe me, it was not easy to accept my life the way it is. But I now understand that was the only way I was going to live fully. After seeking professional help, for a solid two years, I learned to see the good in life— friends, family, a nice home—I am glad I figured that out sooner than later.

When FA gets you down, what do you think/do to feel better? When FA gets me down, I take the liberty to be sad and sometimes I cry. I think your soul needs this reaction in such situations. After crying, I feel better. And I think about the good stuff in life.

Carolin 3What is one way living with FA has POSITIVELY affected your life? With my focus on fitness and nutrition, I take care of myself so much better than before. I just live healthier.

What is a favorite motivational quote of yours? "If life gives you a kick in the ***, use the push!"

What is a piece of advice that someone with FA has given you that encourages and inspires you? Daily meditation can really help to keep calm and slow down.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? It is so important to realize and accept this disease. Please talk to a professional. We all need to take care of our soul! I believe acceptance can't be tackled alone. Life can't be LIVED alone. That has to be the first step.

What is the first thing you want to do when a cure/treatment to FA is found? I would celebrate with friends and family—have a bigggg party! ;-)

"I have FA but FA doesn't have me." What does this statement mean to you? This disease is humbling, but it will never control me.

Tell us a little more about you... I really live a quite normal life. Of course, with many ups and downs, but doesn't everyone? That's life! It would be boring if everything were perfect. I really love my friends and family. I love spending time with them! I find connecting with others and just being a 'social butterfly' gives me so much encouragement and motivation! That being said, please check out my B L O G and follow my Facebook page and connect with me on Instagram#cureFA LealanSims sig 16 mtc