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Esteban Luis Grieb

Esteban Luis GriebName: Esteban Luis Grieb

Age: 44 (How time flies :)

Where do you call home? I live in Steyr, Upper Austria/Austria/Europe but I was born in Buenos Aires, Argentina

Education: Well, I graduated at our commercial high school (HAK)

Who do you live with? Enjoy living alone in my accessible flat here.

What's a typical day for you? OK … I’m retired so I have enough time for me and my favourite things to do. Every day I wake up at 7 … Then I meditate, doing my exercises, do physical therapy, watch sports like basketball … Basketball is my love and keeping physically active in general is the most important thing in my life. I’m obsessed with being active.

How long have you known you are living with FA? Well, I knew it right before my 23rd birthday … For nearly 22 years now.

Describe your transition from walking to walker/wheelchair: I have been using my wheelchair for 16 years and at the beginning to be honest it was a complete relief for me, because I could do things much better than before as a shaky walker. (I must also mention that both my parents are also wheelchair users because of their polio, so I grew up with it and never had a problem using a wheelchair. They showed me that it is possible to live a little bit of a different but normal life.)

What do you like to do to stay active and what type of exercises work for you to stay strong? I am doing my exercises every day primarily with a health and exercise device that helps me feel as good as possible. every day i train with the device for about an hour. Physiotherapy and visiting the weight room are also part of my physical activities.

Esteban Luis GriebDo you have any hobbies or special interests? The fight against the progression of my disease is a part of my hobbies, as mentioned before with training and therapy sessions. Basketball is my love, which I used to practice actively and now for over 20 years I organize 2 big events a year. In the past I also played soccer, tennis, table tennis, badminton, field hockey, etc. I am an athlete through and through and now I follow a lot on TV and online. Traveling, other cultures and meeting people is also one of my big interests. I also want to bring people together with FA in our country. As the saying goes: Together we are strong! Nobody should feel lonely. That's how I got to know about 15 affected people in Austria alone in the last 2 years.

What is a good trick to make daily life easier? *see above*

When FA gets you down, what do you think/do to feel better? Well I think about the things I can still do and not about the things I cannot do anymore. It takes time to become aware of this, but when it is time, it helps tremendously. My glass is always half full and not half empty. What I do is written above.

What is one way living with FA has POSITIVELY affected your life? There are some things I have learned from having FA. To see what is really important in life and to learn to deal with the stroke of fate in the best possible way. Furthermore, I never thought that I would become a writer. I wanted to record my struggle and my life with FA and so I wrote an autobiography to show what I can do with FA.

What is a favorite motivational quote of yours? If you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl. But whatever you do you have to keep moving forward. (Martin Luther King)

What piece of advice has someone with FA has given you that encourages and inspires you? At that time, nothing can/could motivate me, except myself. I am of the opinion: The man is himself, but over the years I realized that despite FA you can do a lot of things you didn't believe you could do before! For example Kyle Bryant and other sporty and mentally strong guys motivate me now.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Never give up, because there are always new and different things you can do despite FA! As the saying goes: one door closes, but another ones open.

What is the first thing you want to do when a cure/treatment to FA is found? I would make a huge party and hug and cuddle all people for joy. Of course I would immediately inform every FAer I know and invite them to this huge party.

"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 means for me to be able to do everything that is still possible, and there is really a lot more to do.

Tell us a little more about you… I am a positive thinking person and until it came to this, it was a very rocky road. But after some years I accepted my fate and my new life began. I believe that accepting that and, most importantly, being patient with yourself is very important to feel as good as possible in your skin.


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