Susan Carter Profile PicName: Susan Allen Carter

Age: 45

Where do you call home? Northeast Louisiana

Education [degree(s)]: I currently have a Bachelor's degree in Social Work and Master's in Education. I also have a degree in Community Counseling. ALL people have struggles and ALL people have things for which to be thankful. In essence, that is my job as a counselor.

Who do you live with? I'm recently divorced. I live with my 15-year-old daughter and two cats.

What's a typical day for you? During the school year, I am up by 5:15 am to take my daughter to her school and drive to my, now two, schools for work on alternating days. After school, my daughter has music lessons and I have physical therapy 1-4 hours a week. During the summer, I have P.T. 4x weekly, drive my daughter to violin lessons, flute lessons, church & summer camps and preparing lesson plans & activities for the upcoming school year.

How long have you known you are living with FA? I was diagnosed with FA in the late 1990s after a battery of tests. My case also was featured in Muscle and Nerve Journal (March 1998) as the Case of the Month, which revealed that my FA is Somatic Mosaic. Basically, I don't have a typical case of FA.

Are there any others with FA in your family? No

Susan Carter 3Describe your transition from walking to walker/wheelchair. I transitioned from walking independently, to try a variety of gadgets, canes and finally a wheeled walker and wheelchair during last month of pregnancy. After beginning physical therapy, I returned to using a wheeled walker until my daughter was 4 years old.

What do you like to do to stay active and what type of exercises work for you to stay strong? Activities like physical therapy, housework, and stretching keep me strong.

Do you have any hobbies or special interests? I love reading & listening to audiobooks. I also enjoy photography & creating photo books. Writing is another interest that keeps me mentally active. Playing PS4. My lifelong love of animals was adapted to not only pet training but delving into training for service work. I trained my rescued Australian Shepherd and later my rescued German Shepherd for personal service work for me and emotional work with the children and veterans whom I worked with. They also reminded me that falling down is not the end...there's stuff to do while on the floor. When you get so
frustrated at repeated falling: screaming, crying and kicking the wall, you learn a few things.

What is a good trick to make daily life easier? Just breathe.

When FA gets you down, what do you think/do to feel better? I love to stretch to feel better. I also think about having FA in a different time and place and not feeling alone I am thankful.

What is one way living with FA has POSITIVELY affected your life? FA has positively affected my life by connecting with others..Interacting with the online FA community led to meeting the world-wide FA community and FA organizations. FA has allowed me to connect with and participate in clinical trials, research studies, and the opportunity to collaborate with other FAers to collaborate in crafting a novel. (The Legacy of Marie Schlau" is available at and is an international collaboration of writers with FA that explores the life, disease, and descendants of the title character). Writing, publishing and selling a novel was an unfulfilled dream made a reality directly because of FA.

Susan Carter 4What is a favorite motivational quote of yours? "It is not our abilities that show who we are, it is our choices." –Dumbledore. My quote and observation of my personal life: "God knew I'd fall, I'd fall often, but I wouldn't fall far. And that's why I'm short." I'm still 5'2, but now I'm wheelchair height. I'm still the same me, only with a diagnosis, speech changes and wheels. I am a Christian. I have peace and purpose through my faith. My FA was not surprised to my God. I am comforted in that knowledge and in the multitude of precious people I meet because of FA.

What is a piece of advice that someone with FA has given you that encourages and inspires you? I'm encouraged with the sharing of hopes, fears, struggles, creative solutions and appreciation for experiences discussed in the FA community.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? When something changes, adapt!! Failure only happens when you give up.

What is the first thing you want to do when a cure/treatment to FA is found? When a cure is found, I would like to go horseback riding in Wyoming (or anywhere) and walk barefoot on a beach.

"I have FA but FA doesn't have me." What does this statement mean to you? I see the FA life is akin to aging. However, instead of decades passing with a gradual decline in physical ability and the normal concurrent emotional and mental stress, As my physical abilities diminish I realize I can choose to be resentful or accepting of what I can do.

Tell us more about you. I began my career with an Educational Specialist degree, however, I chose to accept a full-time position as the sole elementary counselor of three elementary schools. Just as important, through 2004, I maintained a mixture of paid and volunteer work furthered education.
-Librarian of a residential group home (12 cottages each with 12 children); tutor of one cottage of aforementioned group home; Humane Society dog shelter board member, behaviorist, temperament-tester and training consultant; co-counselor with 4 groups of combat veterans diagnosed with PTSD; co-counselor of court-ordered group with alcohol-addiction issues; training my own rescue dogs for service work for me & emotional support for the children and veterans with whom I worked.

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