Katia 5Name: Glenn ter Borg

Age: 47 (born 1972)

Where do you call home? Katia and I live in Teresina, Piaui, Brazil

Education: Computer Sciences, 3D Animation, Graphic Design. Now retired from working as a video editor at a TV station, I'm planning to create short animations based on my own adventures!

Who do you live with? We live together in a fully wheelchair accessible house with our daughter, a crazy-mean cat. We employ a live-in helper to assist us when required.

What's a typical day for you? I like to spend time in the office working on animation or music. Or I may be watching TV, movie, or I may go out to do shopping and errands with my wife.

How long have you known you are living with FA? 33 years or more. Although I was diagnosed with Friedreichs ataxia when I was 23, I first knew that something was very wrong when I was about 14 years old .

Are there any others with FA in your family? My sister, who is now 52 years old, developed early onset FA at 30 years old.

Describe your transition from walking to walker/wheelchair: At 14 years old, I had difficulty walking in a straight line, or stopping on cue. Job hunting became very stressful when I was 21, because most potential employers assumed I was drunk or on drugs. I stopped leaving the house at 22! Then the next year, I was diagnosed using the DNA test. That changed my entire life! I registered with the government to get a wheelchair, and as soon as I received it, I was no longer embarrassed to leave the house! For me, it was like having normal legs for the first time in my life.

What do you like to do to stay active and what type of exercises work for you to stay strong? We work out 3 to 5 times a week, either at the physiotherapists office, our pool, or our workout room.

Do you have any hobbies or special interests? I love music and collecting records on vinyl. I also enjoy movies, and creating animation or music on my computer. I used to enjoy traveling, but FA has made that much less enjoyable these days.

Katia collageWhat is a good trick to make daily life easier? My trick for making life easier with FA is to always create something to look forward to, whether it's home renovations, or a new animation project. I think that boredom is a big problem with this illness, so we always need to create something to look forward to.

When FA gets you down, what do you think/do to feel better? I find that the best way to deal with the frustrations caused by FA is cursing! My wife disapproves, but it really helps to let some steam out with a few expletives!

What is one way living with FA has POSITIVELY affected your life? This illness has been a positive influence on our lives in that we have made choices that would not have been available to us if we did not have Ataxia . We would not have met and married if we had lived a normal life. There is a lot of comfort in spending your days with someone who understands and empathizes with your physical limitations.

What is a favorite motivational quote of yours? Let fate decide.

What is piece of advice that someone with FA has given you that encourages and inspires you? I've never really been inspired or encouraged by positive advice. I respond better to negative encouragement! For example, on my first trip to Brazil, many people told me," you can't do that! Brazil is dangerous, it's not wheelchair accessible, you don't speak their language!" The more I heard that, the more I wanted to try and prove them wrong!

What is the best advice YOU could give to a person who has been newly diagnosed with FA? My advice to a newly diagnosed person would be, "avoid the invisible bubble!" Instinctually, parents want to teach their children to be strong members of society, and able to accomplish whatever they want to. However, the moment their child is diagnosed with an illness like FA, their strategy does a complete 180. Parents will try to build an invisible bubble around the child to protect them from all of the harsh experiences of life. The child will remain that age for the rest of their lives if they are unable to grow as humans. We need to experience the highs and lows, the failures and rejections, in order to build character. These are not bad things, they make us who we are.

What is the first thing you want to do when a cure/treatment to FA is found? If a cure or treatment arrived for FA, our lives would not change much. We have each other, a house, and a life that we love . The only thing that would change is that our physical health would not decline so rapidly.

"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 am not a two dimensional character defined by my illness.

Tell us a little more about you.....Glenn and Katia met in 2002 on the Internet. They began chatting, and after a couple of months, Glenn decided to go to Brazil to meet her. After that, he decided that he had to return as soon as possible! Then the next year he went back to Brazil for six months. And every year after that for a few months at a time. In 2005, Katia went to Canada for the first time. She also returned to Canada every year with Glenn, and then they went back to Brazil together. They were married in 2008, and planned to live in Canada. In 2010, they both decided that Brazil had much more to offer than Canada! Glenn moved to Brazil in 2011, and the two have lived there ever since! 

Glenn did a documentary film about Katia's life story in 2009, called The Hindsight Years, click here to watch it.

Interview with Katia Gomes

Katia 6Name: Katia Gomes

Age: 41 (born 1978)

Education: Graduated in law.

What's a typical day for you? Taking care of household responsibilities, working out, or spending time with family and my husband.

How long have you known you are living with FA? 27 years. I was diagnosed in 1992, but I was about 21 when I began researching FA. My family hadn't told me exactly what to expect.

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

Describe your transition from walking to walker/wheelchair: I spent my teenage years relying on help from friends to take me around to classes, holding on to their arms.. I would only use a walker at home. However, when I decided to go to Biloxi in the USA, for an FA conference in 2000, I brought a wheelchair for convenience.

Do you have any hobbies or special interests? I still enjoy traveling and knowing new places, when an assistant is available to go with me!

What is a good trick to make daily life easier? My advice is to not pressure yourself by trying to do too many things in one day. Plan what needs to be done, and do them at your own pace.

When FA gets you down, what do you think/do to feel better? I try to remember that everyone has problems, some are much worse than my own. I try to remember all of the good things that I have.

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