Fabian B.

Name: Fabian B.

Age: 32 years old

Where do you call home? Germany

What is your education [degree(s)]? What is a current goal you have with your education? M.Sc. in Business studies; Current goal LL.B.

 
Who do you live with? I live with my parents.

What's a typical day for you? My alarm rings at 7:30 o´clock am, I stand up between 7:30 and 8 o´clock. Should I be tired, the times shift. Then I put on my gym clothes and spend about an hour in my self-furnished home gym. After showering, I sit down at my desk. There I sometimes study more intensively, sometimes less. In the evening I often have appointments, e.g. physiotherapy. My parents bring me to all appointments. If I have no appointments, then I get into in a learning flow (often with music and headphones) or I relax.

How long have you known you are living with FA? When and how were you diagnosed? To begin with, we have to go back to 2010, or rather to the summer. I was 19 years old. At one moment I noticed slight changes in my gait, and often I had to reach for a stair railing to keep my balance. At other moments everything was fine again, at least that was my memory. A first warning signal for what was to follow.

I went to my family doctor one Monday evening in January 2011. He sent me to a neurologist, who sent me to the hospital. After two weeks in the hospital, there was still no diagnosis.

In the following time it became worse and worse.
I went to my family doctor, on One Monday evening, in January 2011. He sent me to a neurologist, who sent me to the hospital. After two weeks in the hospital, there was still no diagnosis.

In the coming vacations I should come back. Again, every test result was negative. So there were no solutions to my problems. In the final consultation, the attending doctor told me, "I think it is Friedreich's ataxia". Shortly after, I didn't even know the name. In the following weeks, I had a series of outpatient appointments. So also, with the geneticist in June 2011, who finally gave me the diagnosis "Friedreich's ataxia".

Describe your transition from walking to walker/wheelchair: After the diagnosis, I didn't need any aids to walk at all for the first few years. I had a lot of everyday movement. At the end of 2015, it became harder and harder to walk, first I used an umbrella to support myself. Subsequently, I used a walking stick to get around. This lasted a few years, but I became more and more unsteady and needed more and more help. Also, I could no longer move properly in dimness/darkness. I have been using a rollator for a few years now. I prefer an outdoor rollator because they are more durable and have a wider distance between the rear wheels.

Do you have any hobbies? Recently, I have found plenty of fun in sports. Originally, the motivation was to fight against the disease. Now it's more the physical change. So, you can combine both. To be better in shape increases my self-confidence. I also have a lot of fun updating my trainings plan to have variation. Once or twice a week, my brother and I talk on the phone via FaceTime. We often meet up to eat together and watch series. On weekends, I like to meet my friends to watch football together.

What is a good trick to make daily life easier? First, I try to enjoy the little things in life. It is important to know your surroundings perfectly. This means always knowing where you can hold on to and how to reach different things. Having different rollators in different places and knowing where you can park them. It is good if there are handrails on both sides of the stairs at home. Just as important are wall-mounted handles that you can hold on to securely. All this is important to always feel safe. Also, very useful are the accessibility settings on your technical devises. The most important thing is to have someone in your life you can confide in and you can cry to, if necessary.

When FA gets you down, what do you think/do to feel better? It happens when I feel overwhelmed, in different situations. When I wake up in the morning and my first thought is about the disease, and it's dragging me down mentally and having such a big impact on my productivity today, I stay in bed for a while. I then snuggle up in many blankets and start my day later. I really love my weighted blanket and my teddy bear (I got him when I was born).

When I'm already sitting at my desk, I can feel completely overwhelmed. I then put my documents to one side and stream a video or series on the internet. I then don't work on the documents again on the next day. I often start daydreaming. I am then in another world. But be careful, none of it comes true ;)

What is one way living with FA has POSITIVELY affected your life? I have become much more patient. Delays do not stress me.

What is a favorite motivational quote of yours? My therapist once said to me, "I am more than my body." What does this sentence mean to you? When I answered this question, it became clear to me, "I am more than my body." Fabian is much more than a person who lives with FA. Since then, I think of this sentence every time I get into problematic situations.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? The absolute key is to keep moving every day, even if it's hard. Normal everyday exercise and strength training are essential. A healthy diet is just as important.

What is the first thing you want to do when a cure/treatment to FA is found? Play football with my friends. Jumping.

Tell us a little more about you.... There is so much to talk about because I’m more than my body.

I've always been a quiet person. I spend a lot of time at home, so a cozy and beautiful environment is very important to me. I always want to feel at ease. 
I really like fragrances. I use a perfume almost every day. I also like to use a room diffuser to create a cozy atmosphere.

Since I started doing sport every day many years ago, I started to take more interest in (sports-friendly) eating. My mother likes to cook well and always fresh, so I grew up with healthy food.
I have been more involved with the topic of nutrition myself. In addition to the topic of what food is good for me, the topics of resource management, environmental friendliness and ethics in nutrition are also important to me.
I have been eating an almost vegan diet for a few years now. This means that I eat a 100% vegetarian diet and often avoid animal products.
I really enjoy making people, I like very much, happy. A small gift, a birthday card or a postcard from vacation.

You can make me happy with vegan oat milk chocolate with cookie flavor and Coke Zero cherry 

To all my friends and family - I love you!