Name: Christiane Wick-Jüttner
Where do you call home? I live in a small village in Hessen, Germany.
Education/Career: I studied educational science at the Justus Liebig University in Giessen and am a qualified pedagogue. I actually wanted to become an architect, but as my illness progressed, the student advisory service advised me against it.
Who do you live with? I live with my husband and two children in a large house with a big garden. Our son is a shepherd by profession, that's why we have 3 herding dogs.
What is a typical day for you? My husband dresses me in bed, puts me in the wheelchair, empties my urine bag in the bathroom, helps me with my daily morning hygiene and prepares my breakfast. Then I work on my computer, read the daily newspaper or a book. I am also often out and about in nature with my wheelchair traction device. We have a large circle of friends and everyone in our small village knows me, so I actually always have conversations. In the evening my husband brings me to the bathtub and carries me from there to bed.
How long have you known you are living with FA? I was diagnosed in 1984 when I was 17 years old.
Are there any others with FA in your family? No, I’m the only one.
Describe your transition from walking to walker/wheelchair. I got my first wheelchair when I started studying. I could still walk, but no longer alone. Since the university is very spacious, I used a wheelchair there. Initially only at university, but as the disease progressed, I was soon completely dependent on a wheelchair.
What do you like to do to stay active and what type of exercises work for you to stay strong? I have physiotherapy twice a week, occupational therapy and speech therapy once a week. In between, I train my arms and legs on a movement device.
Do you have any hobbies or special interests? We own a wheelchair-friendly converted motorhome, with which we travel a lot at home and abroad. We also go on many bike tours with our bike, which can be attached to a wheelchair.
What is a good trick to make daily life easier? Accepting life as it is, it is not easy with FA, but somehow it always goes on. Giving up shouldn't be an option.
When FA gets you down, what do you think/do to feel better? I think of my family, I draw all my strength from them.
What is a favorite motivational quote of yours? "Always turn your face to the sun - then the shadows fall behind you"
What is a piece of advice that someone with FA has given you that encourages and inspires you? It's your life, make the most of it.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Whoever fights can lose, but whoever does not fight has already lost.
What is the first thing you want to do when a cure/treatment is found? I would be overjoyed and would do everything that is unfortunately not possible for me now.
"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 try to do everything I can and never lose heart.