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FARAFARA Cure FA

Michelle Huebner Bodine

MichelleName: Michelle Huebner Bodine

Age: 40

Where do you call home? Portland, Oregon & Vancouver, Washington

Education: I finished my bachelor's degree while working full time.

Who do you live with? I'm married and have a wonderful son, just turning 16!

What's a typical day for you? During the week, the alarm is ready for my day to begin at 6am-- work emails, Yahoo, and shower time. I try to leave for work by 7am so I can be in my office and ready for a long and intense day at work. Work is very demanding and I have a lot of responsibility at a Fortune 500 International Company as an operations manager. My day is full of meetings and hundreds of emails in between. I look up and it's now 6pm or 7pm. I wrap up and head home. I'm basically a zombie for most of the evening once I get home-- Okay-- a cranky, tired zombie. My wonderful husband greets me in the garage and helps me in the house. He then cooks, cleans, and does practically everything. We visit for a bit and eat and relax on the couch-- TV time, online shopping, more work emails; and soon enough I'm fast asleep. Rinse and repeat. My work week revolves around work. Making plans during the week happens but adds stress. On the weekends we are normally pretty busy, but I also get time to just stay in bed.

How long have you known you are living with FA? My symptoms began at 20 and I was diagnosed at 33. I was very active as a teenager with gymnastics and cheerleading.

Are there any others with FA in your family? No.1

Describe your transition from walking to walker/wheelchair: I started using a walker daily around 3 or 4 years ago. I have a scooter I take to the mall, longer distances and traveling. I am in the process of getting a manual wheelchair and will have it in 5 weeks. I'm so excited!!

What do you like to do to stay active and what type of exercises work for you to stay strong? I struggle here. I have a Catrike but it is very neglected.

Do you have any hobbies or special interests? I definitely enjoy traveling, plus we have two vacation rentals so we always have projects and stocking to do-- Yes, more online shopping! Design has become more and more enjoyable and I even create vision boards.

What is a good trick to make daily life easier? Every new device I get, I love. I do my best to practice what I preach: Accept help. Accept devices. Accept yourself.

When FA gets you down, what do you think/do to feel better? I do my best to think positive and be around positive people. Struggles are going to happen. Everyone has something. FA is just visible to others. I know I have control of me, and tomorrow is a new day.

Michelle collageWhat is one way living with FA has POSITIVELY affected your life? FA has brought amazing friendships into my life.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? You will be okay. You are still you. Don't change your goals or dreams because anything is possible. Try finding a new connection with FA to help you on this journey. Other people with FA will get you and add so much on so many levels.

What is the first thing you want to do when a cure/treatment to FA is found? I live my life to the fullest right now. If I want to do something, I do it.

LealanSims sig 16 mtc


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