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FARAFARA Cure FA

Carla Poletti

CarlaPoletti1Name: Carla Poletti

Age: I am 48 years young!

Where do you call home? I live in Paragould, Arkansas. This is in the northeast corner of Arkansas and about 70 miles west of Memphis, Tennessee. I was born and raised in Arkansas. The house that I live in is fully accessible and I am able to do pretty much anything. Even the kitchen counters, stove and sink are lowered so I am able to cook safely.

Education (degree(s): I graduated high school way back in 1986. I just can't hardly believe it has been 30 years! After that I went to a VoTech school where I earned a diploma in Data processing.

During my high school years I had plans of going to college and hopefully becoming something "successful." When I received my diagnosis the beginning of my senior year, I was scared, and really didn't know how much time I had left, so I chose vo-tech school. Looking back now, I know that I could have done college, but I really do feel like my life has been "successful." I have had many wonderful opportunities that have come my way regardless, and even because of my disability. I have had great jobs, served in my community, been active in my church and Ministry, been actively involved with MDA, have a happy marriage, am a daughter, sister, aunt, and have lots of great friends. I am generally healthy and very happy. No regrets! I am blessed indeed! 

CarlaPoletti2What is your relationship status? I am married to the most handsome, generous and loving man! His name is Tim Poletti. We have been married four years now. People with FA that I have talked to, often feel like no one could ever find them desirable and lovable. That can wreak havoc on your self image. I felt that way, too. I know I am one lucky girl to find this man who loves me like he does. He chose me when he didn't have to. I know I am not the easiest person to live with, FA or not, but he is always kind and patient with me. He has arranged for me to see Dr. Lynch at CHOP every year since we have been together. Together we have gotten associated with other FAers, have become part of the FAmily and eagerly await a cure! I love this man!

Do you have children? I don't have any children of my own but through Tim I am a stepmother to 5 awesome kids (grown) and a step grandmother to 4. TIm and I have a Boston terrier/Pekingese mix (Bostonese) dog named Bella. She is a little over two years old and has proven to be the hardest job I ever had! LOL I am actually proud of myself that I successfully house trained her! She is rotten but is so cute!

What's a typical day for you? (i.e. daily routine, employment, student, stay at home parent, etc…) A typical day for me is fairly normal. (normal is wonderful!) I am a housewife and since my house is accessible, I am able to pretty well take care of the typical daily things like cleaning, laundry, cooking, etc. For the things that I am not able to do, like changing lightbulbs or reaching up high, things like that, either TIm helps me, my dad or I can call one of my brothers or friends. I can always find someone awesome to help me when I really need it! Sometimes I get overwhelmed because there can be a lot to do and then I get behind. I have a couple of friends who will help me anytime to get caught up on things. A clean house makes me feel good, even accomplished.

When Tim gets home from work we eat supper and normally sit in the living room and watch TV. I put my feet up in the recliner and have Bella in my lap. Time to relax!

How long have you known you are living with FA? (When and how were you diagnosed?) I was 17 years old when I was diagnosed. It was beginning of my senior year in high school. My parents had concerns that I had not grown out of the "clumsy stage". They took me to see my family doctor and he found that the reflexes in my legs were very weak. He then referred me to a neurologist in Memphis, Tennessee. I spent the first three days I should have been beginning my last year of high school in the hospital getting tests run. It was the most frightening moment being told that I had a disease that I had never heard of and would some day soon not be able to walk or take care of myself. But time and a strong will has proven that I am a lot tougher than I thought.

Are there any others with FA in your family? There is no one else in my family with FÀ. I have always made a joke that I am the lucky one!

Describe your transition from walking to walker/wheelchair. Around the age of 25, I had to start using a walker because my walking had become so slow and unsteady and my balance very poor. I was having to hold on to people, furniture and even walls to keep from falling. It was upsetting to me that I had to get a walker. I was even a little embarrassed about it but I reluctantly made that decision. It was such a help and really increased my confidence and my speed, at first. At the age of 28, I had tendon release surgery on one of my feet. I used a wheelchair during my recovery and quickly got back on my feet. Just a few years later my need for a wheelchair was getting more evident and I was using one for long-distances or if I had to stand for a long time. In 2000, when I was 30, I was fitted for my first full-time wheelchair. It was an emotional thing for me to make that transition but definitely for the best. I have been able to keep up with everybody else and not be fatigued so quickly. People like hanging out with me because I get the best parking spots! LOL Hey, you have to look at the bright side!

Describe an adaptation and/or transition you have had to take due to living with FA. Several years ago I began driving with hand controls. I really thought it would be a hard thing to learn how to react in my arms and hands instead of my feet while driving. I did a training for a week and adapted very well to that change. I haven't driven much in the past two years and it has been a very hard thing to give up that privilege. But I know it is for the safety of myself and others.

Another adaptation for me has been having to wear hearing aids. I have learned since getting the aids that hearing loss is very common among those of us with FA.

What do you like to do to stay active and what type of exercises work for you to stay strong? I guess housework would be considered exercise? Hey, vacuuming is hard work people! LOL. Seriously, I do like to and find much benefit in weightlifting and stretching. I have been very lazy the past few years about keeping up with my exercise. But I am trying to do better. It makes me feel a lot better about myself when I exercise but I think that is true with anyone.

CarlaPoletti3Do you have any hobbies or special interests? I like to travel with my husband and he has made me a Kansas City Cheifs fan and a St. Louis Cardinals Fan. I enjoy cooking and cooking shows. And yes, I love eating! I love to do anything with my Church and in ministry.

What is a good trick to make daily life easier? Ask for help when you need it. This is something I could do better!

When FA gets you down, what do you think/do to feel better? Well, I pray. I think about all the people who are rooting for me. I do feel sorry for myself sometimes and have pity parties probably more than I should. But I keep going. What else can I do?

What is one way living with FA has POSITIVELY affected your life? I have had many wonderful opportunities in my life that have come because of FA. But I do think living with this has made me a stronger person. The biggest blessing to me has been the amazing people that have come into my life and that I continue to meet. My mother passed away earlier this year and I was able to see the effect that she, one person, had on so many. I have been fortunate to meet so many people I can truly call friends. I don't take that lightly. I hope I can leave half the legacy that my mom did.

What is a favorite motivational quote of yours? "you can either go through it or grow through it"

What is piece of advice that someone with FA has given you that encourages and inspires you? Just meeting and getting to know others with FA has been an incredible source of encouragement and inspiration!

CarlaPoletti4What is the best advice YOU could give to a person who has been newly diagnosed with FA? Learn about FARA: get connected because you don't need to fight this battle alone! I just think it is important to see that others who have FA have been successful and happy in their lives. This FAmily has been huge for me! Tim too!
Stay healthy, exercise, stretch those muscles.

When I was getting ready to undergo a huge challenge, my sister-in-law told me "do it because if you don't you will always wonder if you could."

Smile! Even when you don't feel like it!

The last thing I will say here is don't ever give up! Keep trying then try again!

What is the first thing you want to do when a cure/treatment to FA is found? Run!!!! Stand up and give Tim a hug and kiss without him picking me up! Then I would like to go buy some high heels!

"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 very clumsy. I know how I sound. I can't hear very well anymore and I am usually very tired. But I am the same as you on the inside. My mind is alert and my heart is full of emotion and that makes me beautiful. FA didn't win.

I try to be upbeat and cheerful. I have a hope that this disease will not be anymore. I believe that could happen in my lifetime. Believe me, I have days that I feel like I can't take this anymore. It gets so hard. But one day, either in this life or the next, I will walk again!

Tell us a little more about you…In 2009, I started a ministry in my church for people whose lives have been touched by disability. It's called DREAMS (Disabilities Reaching Everyone And Mending Spirits) A wonderful group of people has come together to help and enrich the lives of people with various disability building friendships through a common bond. We encourage those with disabilities to be active and use their gifts and talents. We fellowship, encourage each other and just have fun. Through fundraising and gifts, we have provided medical needs, given Christmas to children and families that have special needs, made a way for household needs to be met and helped the Miracle League build an accessible playground and ballpark in our area. It has been totally amazing to see how God has used this to bless and help people. I feel humbled that He chose me to lead this up. Because I have a disability, Freidriech's Ataxia, I connect and because God helps me, I can help others. Our motto is "Let your dreams soar!" We let balloons raise with our prayer requests or our "dreams" attached. We watch as they soar upward to the One who gave us those dreams in the first place. It's quite emotional!

We are STRONGER TOGETHER! New Meet the Community interviews Mondays.

AndreaKiessmtcsignatureAndreaKiess2015


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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