MariekeName: Marieke van Driel

Age: 28

Where do you call home? Eindhoven (the Netherlands)

Education/degree: At Eindhoven University of Technology, I received my Master of Science (biomedical engineering) at the age of 24. My career started at the innovation site Eindhoven at Philips for two years full-time. Afterward, I kind of retired because of a lack of energy. However, I like to be busy, and I signed a small contract at Eindhoven University of Technology. My role is to help set up the education of biomedical engineering.

Who do you live with? I live on my own.

What's a typical day for you? Monday, Wednesday, and Friday, I go to work a few hours. Each week, I also spend a few hours in my volunteer work for the muscle association in the Netherlands. Two years ago, I joined a committee for FA at that association. My usual contribution is in filling the dutch FA newsletter. I write medical updates, I interview people who are maybe interesting for other people with FA, and I write other (fun) articles. Next to my work activities, I love sports: Swimming (three times a week), Bootcamp, gym at the physiotherapist, and hand biking.

How long have you known you are living with FA? When I was fifteen years old, I was diagnosed with FA, so I am already living with FA thirteen years. Before I got diagnosed, I was practicing a lot of sports, mainly hockey and fast swimming. During these sports, I experienced weird problems like not being able to stand straight on the starting block. For these reasons, I went to the general practitioner. From that to physiotherapy, to finally neurology where I got a DNA test, and FA was introduced.

Marieke 2Are there any others with FA in your family? Probably not, my brother and sister are not tested. However, they are already 26 years old (twins) and show no symptoms.

Describe your transition from walking to walker/wheelchair. In the Netherlands, the main transportation for students is by bike. I noticed problems using a normal bike, so at the age of 21, I switched to a trike. At the start, I could not appreciate my trike. I felt weird, and I wanted a normal bike. After a couple of months, my feeling was different I could not miss my trike, the trike brought many opportunities. At the age of 22, I also needed a walker, and the trike could carry my walker! At the age of 27, I could not use the walker anymore for walking because I flipped it over. I had to use my wheelchair full-time. Using the wheelchair full-time was a big transition. At the same time, I stopped working full-time, and I needed some time to get the rhythm in my 'new' life.

What do you like to do to stay active and what type of exercises work for you to stay strong? Like I told before, I love sports! I think that definitely helps! When I started hand biking, my arm muscles were stronger, I could more easily pick-up things and also flip to my side, trying to sleep. Last year, doctors tested my lungs, and their conclusion was only if I do my sports, my lungs will stay in good condition. At the physiotherapist, I focus on my legs since I use the wheelchair full-time. I think swimming is also good for the movement of my legs.

Marieke 3Do you have any hobbies or special interests? One of my biggest appreciations in life is talking and laughing with friends. So I try to see them as much as possible. We often go out to restaurants, go cycling, or they visit me at home, and we eat together. Playing board games is definitely an interest as well. I make several appointments with friends to play a board game each week. Over the years, I also did some traveling. Meeting other cultures and seeing different nature is a big pleasure to me.

What is a good trick to make daily life easier? Thinking about things you appreciate in life.

When FA gets you down, what do you think/do to feel better? I try to look for things I can do and not for something I cannot do.

What is one way living with FA has POSITIVELY affected your life? I have more appreciation in life.

What is a favorite motivational quote of yours? I have a lot, the most favorite is 'Challenge accepted!' Other favorites are 'He who dares wins' and 'every cloud has a silver lining.'

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Try to enjoy life!

"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? This statement definitely suites me. When FA brought me adversity, I was feeling sad, but I tried to continue my life as normal as possible because I appreciate my normal life.

Tell us a little more about you.....Last year, I visited rideATAXIA in Germany. It was amazing! I love biking, and I met wonderful people. This year, I am helping to organize rideATAXIA in the Netherlands. I am very enthusiastic about that! At the end of April, we will decide if we can continue organizing for August 2020 due to corona. If we cannot make it in August 2020, we will postpone it.

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