Vincent Groot at his deskName: Vincent Groot

Age: 43

Where do you call home? Woerden, Utrecht, The Netherlands

Education: I have a Bachelor’s Degree in Human Resource Management. Unfortunately I have never worked in the field because of FA.

Who do you live with? I am single and have no children.

What's a typical day for you? I am still pretty active. I wake up around 6/7 am. I do some stretch exercises (especially legs), then dress. I have breakfast and coffee. Then I’m off to work. I am a graphic designer (career change after FA). I start at 9 am until 2:30 pm. After some coffee I go home to cook and relax.

How long have you known you are living with FA? I got the first symptoms in 1998 (19 years of age). It wasn’t until 2002 (after extensive tests and DNA research) I was finally diagnosed with FA.

Vincent Groot headshot Are there any others with FA in your family? No.

Describe an adaptation and/or transition you have had to take due to living with FA. I used to play soccer, but in 1999 I forcefully had to retire due to physical problems which were related to FA. I went from a normal bike to three wheels to a scoot mobile in 10 years. I walked from the train station to work. In 10 years, I wasn’t able to do so anymore. I started to use a walker around 2006/2007. Over time even that became more difficult. I decided to use a wheelchair fulltime in 2013.

What do you like to do to stay active and what type of exercises work for you to stay strong? Keeping a good mindset and maintain my fitness with exercises (strength and endurance, especially focused on my upper body. I have noticed that I rely on my arms more and more, because my legs fail from time to time.)

Do you have any hobbies or special interests? I love listening to music, watching movies/series, reading and being creative. I play chess, Magic: The Gathering (MTG, online as well as with real cards) and wheelchair hockey.

What is a good trick to make daily life easier? I have some kind of pole which helps me to transfer from my bed to my wheelchair (and vice versa) on my own. An indispensable piece of equipment to maintain my independence.

When FA gets you down, what do you think/do to feel better? FA brought me down many times, but as I get older not as much anymore. I like my life the way it is (which does not mean I don’t fight anymore).

Vincent Groot in hockey uniform What is one way living with FA has POSITIVELY affected your life? I have changed from a very narrow-minded egoist to an open minded person with a lot more empathy.

What is a favorite motivational quote of yours? “If you change the way you look at things, the things you look at change” – Wayne Dyer

What is piece of advice that someone with FA has given you that encourages and inspires you? It’s not the end of the/your world.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? “No matter the circumstances, there will always be some kind of a bright spot on the horizon. Never let your light go out or dim because of what happened. You have a choice: be the victim, stay angry and blame the world and everybody in it; or make a conscious decision to make the best out of life, regardless of the circumstances.”

What is the first thing you want to do when a cure/treatment to FA is found? I want to try it when it comes available here. If there is any chance of getting better, I’m all for it!

"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 focus on what is possible, not what is impossible.

Interviewed by
Interviewed by Erin O'Neil