Name: Bernhard “Bernie” Metz
Age: 35
Where do you call home? Vienna, Austria
What is your education [degree(s)]? What is a current goal you have with your education? How will FA add to your future [career]? I’ve got my diploma as a social worker and I’m working at a nursing home. I’m working full time and I love my job. Because of the advancing FA symptoms, quite a lot of parts of a typical workday had to be adjusted — but successfully! It worked out and I’m still able to do my job the way I’m expecting it from myself. According to that, I’m of course hoping the best to do the job I love for as long as even possible. <3
Who do you live with? I live with my wife, our 3-year-old son, and our two cats.
What’s a typical day for you? A typical day for me starts at 5 a.m. My wife, my son and I get up and get ready for kindergarten. I leave our apartment at 6 a.m. and go to work till 4:30 p.m. Afterwards I’m working out till 6:30 p.m. Then I get home, we have dinner and put our son to bed. Then we sit a little bit, talk, reflect on the day and sometimes we watch an episode of a TV show. Then we go to bed.
How long have you known you are living with FA? When and how were you diagnosed? My first symptoms started when I was 25; It took a very long time and many different doctors till I was diagnosed (2023)
Are there any others with FA in your family? As far as we know, nobody else in my family lives with FA symptoms
Describe an adaptation and/or transition you have had to take due to living with FA. Due to how my walking and free standing gets worse, I sometimes use a walking stick. Especially on public transport. At home, I use grab rails for example when taking a shower. I also have to sit down to change. Everything takes a lot more time than I was used to.
What do you like to do to stay active and what type of exercises work for you to stay strong? I’m doing speech therapy, going to physical rehab once a year and three times a week I work out at a gym. Family-life and spending time with my son also keeps me active.
Do you have any special hobbies or interests? I used to play guitar in several bands, but my FA symptoms made it heavier and finally impossible to handle. For example, playing accurately and fast wasn’t possible anymore. Nowadays I’m writing short stories, books and I’m an active member of the Austrian FA support group.
What is a good trick to make daily life easier? Stay positive and focus on the things I can do and manage successfully.
When FA gets you down, what do you think/do to feel better? My Family and friends.
What is one way living with FA has POSITIVELY affected your life? I have learned to accept and respect my physical and mental boundaries.
What is a favorite motivational quote of yours? Aufgegeben wird ein Brief (Austrian Pun which means “Never give up“)
What is a piece of advice that someone with FA has given you that encourages and inspires you? Be proud of what you are capable of.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Talk to other people with FA. Knowing and seeing that you’re not alone is worth a lot.
What is the first thing you want to do when a cure/treatment to FA is found? Take it 😉 And maybe start to play music myself again.
“I have FA but FA doesn’t have me.” What does this statement mean to you? FA may affect my physical abilities, but not my mental state.
How do you live your life in the face of adversity? I focus on the positive things in life.
Do you know anyone else in your country with FA? If so, have you ever met them? Yes. Feel like our FA support group grows bigger every day. (group homepage:) www.friedreich-ataxie.at
What is your favorite movie or book? Harry Potter