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FARAFARA Cure FA

Erin Pieper

Name: Erin Pieper 
 
Age: 27
 
Where do you call home? St. Louis, Missouri 
 
Education (degree(s): Bachelor of Arts in Psychology and Sociology 
 
What is your relationship status? Do you have children? I'm a single Mom to the sweetest three year old boy, Eli! The best way to describe my living situation is by saying I have two homes. I live alone in a house that I stay at when Eli goes to his Dad's. It's a small slab home (no stairs) which is very easy for me to maneuver around in. When Eli is with me, we've been staying at my parents just for that little extra help I may need. Hopefully, within the next six months I can start transitioning Eli back to my house. He knows my do's and don'ts; what I can and can't do and helps me out without me even having to ask! 
 
What's a typical day for you? My typical day varies. If I have Eli, I get him ready in the morning, drop him off at daycare, head home for a couple hours to clean with a chore worker who comes over to help with things around the house that are too difficult for me to do. I work out twice a week, see a chiropractor once a week, read, blog, dream on Pinterest, pick up little man from daycare, head home for our evening rituals: play, dinner, bath time, an episode of Teenage Mutant Ninja Turtles is always a must! Once Eli hits the hay, I try to enjoy an hour or so of peace with my glass of vino and Netflix. If Eli is with his Dad, I do most of what I listed above with the exception of grabbing a bite/drink/movie with some friends, occasionally. I haven't worked since January 2012. I worked as a Preschool teacher and had to let go of my position when my symptoms of FA led me to a walker. I would love to find work again in the next couple years. Find something in my field of Psych/Soc or getting involved with the FA community or even go back to school and get my Masters! 
 
How long have you known you are living with FA? I've been diagnosed with FA for five and a half years now. My symptoms were pretty subtle for the years leading up to diagnoses, but really took a fast turn for the worse three and a half years ago during my pregnancy.  Even though symptoms were subtle at first, I knew something was 'off'. Just walking to and from my car was exhausting. I couldn't run up and down the stairs anymore. I was noticing I had to be more cautious with each step. I kind of brushed it off thinking I had weak knees and was just a clumsy person. But my loved ones were more alarmed and suggested I get checked out. I went to my primary care physician and explained what was going on and she referred me to an ENT, thinking it could be an inner ear problem causing me to be off balance. Well, that wasn't it. The ENT kind of threw her hands in the air and thought it'd be best I see a neurologist. From there, the neurologist wanted to test me for MS (Multiple Sclerosis). I got an MRI of the brain, which showed no sign of MS. At this point, the Doctor was scratching his head and knew whatever was wrong was out of his reach. He referred me to a specialist in neurology at Washington University where I learned I had Friedreich's Ataxia.
 
Are there any others with FA in your family? Nope. Just me. 
 
Describe an adaptation and/or transition you have had to take due to living with FA. I was able to go about two years upon diagnoses without using any assisted devices. It wasn't until my fourth month of pregnancy (February 2012) that my balance/coordination started declining faster and led me to a walker. It took some major adjustments, considering my belly kept growing making me even more off balance. When Eli was born, June 2012, everything pretty much stayed the same. I still needed the walker, but now that I had a newborn of whom I couldn't walk around and carry, I had to get creative. I would use a stroller or basinet on wheels to transport Eli throughout the house. A few times, I even used a Moby wrap or b'jorn to carry him on my chest while I walked with the walker. Or I would just sit with him for hours on end just soaking up all my cuddle time! Fast forward three years later (present day) I feel myself declining a little bit. I take more advantage of using the wheelchair when I go out shopping or the ball game or the zoo or when I'm just too worn out to use the walker. Having an assisted device is a MUST for me, now. 
 
What do you like to do to stay active and what type of exercises work for you to stay strong? I see a personal trainer twice a week. I've been blessed to have a trainer who is able to find ways for me to stay fit and tweak things around so I'm able to achieve it. I go to a chiropractor once a week to keep me aligned and give me adjustments on my sore spots (typically my hip, neck and/or shoulders). I was seeing a yoga instructor privately, which I hope to get back into--stretching out the body is such a relief! I also stay up to par with physical therapy once a year. Insurance only allows 26 visits per year; so I definitely take advantage of those! Other than that, I try and walk [with the walker] around the house if I've noticed I'm sitting too long. Or hop down on the floor and stretch. 
 
Do you have any hobbies or special interests? Ever since I had a child I've enjoyed being more arts & crafty. I love doing projects with Eli and making creative things as gifts or for my home. I'm a Pinterest lover, so I find a majority of my ideas on there. Now, that I can't get up and move around quite like I used to, I enjoy reading and watching lots of movies. I've also found a passion for blogging on my personal website: www.mywobblyworld.com--check it out! It's a great way to spread awareness about FA and give others an inside look of what life is like in my shoes. And my all time favorite thing to do is spend time with my little man!
 
What is a good trick to make daily life easier? I have no tricks to make daily life easier. Personally, everyday is tough and challenges come my way multiple times a day; all I can do is to do what works at that moment. 
 
When FA gets you down, what do you think/do to feel better?  I remind myself that there are worse things in life. 
 
What is one way living with FA has POSITIVELY affected your life? I definitely have found more appreciation for the little things. And I've grown to have more patience in myself. It takes me a little longer to get things done, but I just take a deep breath and do what I have to do. 
 
What is a favorite motivational quote of yours? "What seems to us as bitter trials are often blessings in disguise." --Oscar Wilde
 
What is piece of advice that someone with FA has given you that encourages and inspires you?  I haven't face-to-face met anyone with FA, yet; however, I really want to! I started writing my own blog about life with FA and have had other FA'ers reach out to me on social media telling me how much they enjoyed my journey thus far. Someone with FA, in particular, writes to me every so often and she tells me how much of an inspiration I am to her. She looks up to me and thinks highly of my bravery for sharing my life story. I can't begin to tell you how much that means to me. I'm so full of emotion that someone looks up to me as not only a person dealing with FA, but as a mother, too! 
 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don't get discouraged! You may have friends, family, therapists, doctors, etc. tell you "you just can't..." Ignore them! Try your darndest and prove you CAN! You can still be successful... At your career, having and raising a family and having a fun social life. Things in your life may need to be tweaked, but you can still do them! 
 
What is the first thing you want to do when a cure/treatment to FA is found? The very first thing I would do is put my headphones in and go for a run. Secondly, put some hot high heels on and go dancing. Running, heels and dancing are my top things I miss most. 
 
"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 don't let FA control me, I control it. Even though FA may get in the way of me doing things physically, all I have to do is find a way to overcome that obstacle and get it done.
 
Tell us a little more about you…..I signed up to be a part of a research study taking place at The University of South Florida (USF) in Tampa. It's a two year trial with a total of six visits to USF. They run their tests every visit to compare from previous visits: a neurological test, blood work, EKG, and echocardiogram. What I'm taking is a supplement, not a drug, called Acetyl L-Carnitine, ALCAR, for short. I take four a day, (morning, lunch time, supper time, before bed) twice the normal amount one would take. The primary focus of this supplement is for hopes of improvement of the heart. The secondary focus of ALCAR, is to see if it improves balance and/or coordination. 
 
How has FA specifically impacted your approach to parenting? Having FA while raising a child has its ups and downs but mostly, it's been quite rewarding. My son is the sweetest. He jumps up to help me every opportunity he has...holds the door open for me, helps me up and down the stairs, carries things for me... He understands what I can and can't do and without a beat, helps me!  I think FA has played a big part in me raising quite the gentleman and I couldn't be more proud! 
 
The way I spend my time with Eli is different than those without FA, but Eli and I are just as close if not closer than the norm. For example, if I want to take Eli to the park, I will bring GiGi, PaPa, or a friend with us to help with getting him in and out of the swing, push him, help him on the monkey bars... I want so badly to be able to do these simple things with him, but dwelling about it is not going to magically make me do it, so being able to be there and watch him have a blast is the way I can participate and I am blessed to have that. 
 
 
 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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