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FARAFARA Cure FA

Stephanie Kilgore

Name: Stephanie Kilgore

Age: 40

Where do you call home? Fort Worth, Texas!

Education (degree(s): Bachelor of Arts in Journalism with a concentration in Public Relations!

Who do you live with? I currently live with my parents, and I have never been married nor have I had any children.

What's a typical day for you? There is no such thing as a typical day when you have FA. That rhymed , LOL! I am on the Board of Directors for a nonprofit called Camp Craig Allen. I am their social media coordinator writing their blog, updating their Pinterest page, and updating their Facebook page. On Facebook I also am the main admin for a support group called "Camp Craig Allen's Corral!" Volunteering for them warms my heart and keeps me busy! You can check them out at www.campcraigallen.org!

How long have you known you are living with FA? After realizing that I was going through more than just a clumsy phase my pediatrician sent me to a neurologist when I was 12. When I walked into his office he said he already knew what was wrong, but needed proof. So I went immediately to the hospital undergoing a week of not so joyful tests. It was then that I was diagnosed with FA.

Are there any others with FA in your family? As far as I know we have traced back on both sides of the family, and I am it... YEAH ME!

Describe your transition from walking to walker/wheelchair. Let me start by telling everyone that I grew up in Tulsa OK, and lived there until I was 19.  I never did use a walker instead I used people's arms, and sometimes got piggyback rides! When I was 16 I got my 1st wheelchair.  I was embarrassed to be seen in it so I used it only when going long distances like to the mall or to MDA summer camp. My high school was not wheelchair accessible so I had to fight to stay on my feet so I could continue to go there. The faculty and my peers were very supportive! The wheelchair stayed in the closet for over a year using it minimally. Then I started using it in the house because I could balance my drinking glass between my legs or carry something on my lap. I found that be so much easier, but was still embarrassed to be seen in it. Then at 18, after walking across the stage to get my high school diploma I got in the wheelchair full time.  I knew it was time.

What do you like to do to stay active and what type of exercises work for you to stay strong? Keeping yourself active in my opinion helps the progression of Ataxia to not progress as quickly. I go to horseback riding therapy once a week. They put a belt around my waist, and I have a sidewalker on each side so I do not fall over. I still do weeble wobble though. It helps with my balance, core strength, and neck muscles! I also have physical therapy twice a week. I have been seeing this same PT for 9 years now, and I have questioned everything that she has had me do thinking she was crazy. We do all kinds of exercises on my bed doing things like stretches, bridges, heel slides, leg lifts, foot lifts, and balancing on my bed. 

Over a year ago I was very skeptical, but I started using a gait trainer (walker)! I had not walked in over 20 years, and I did not think that it would be possible to try to do again. I thought my PT was acting completely crazy at this point. J Lo and behold, but I did it!! Not major steps at this point, but with the help from my PT I am straightening one leg while she is helping me to step with the other. I am trying to walk with the gait trainer once a week. I have had some challenges since I 1st began doing this and have had to take some time off. However, I have not given up!! I have been able to tell the difference in my strength, and transfers independently. If that is the most I gain from doing this that makes it well worth it to me! My PT offers me the greatest help and support when it comes to my exercises. I am also blessed to get to see a massage therapist twice a week. She helps to not only move around muscles that I do not normally use, but also to relieve stressed, tired, and sore muscles! I have a standing frame that I try to use at least 3 times a week, and standing close to an hour. I also have a stationary hand bike and I am not consistent in using (bad me), but it is my cardio. When I do use it I ride for about 5-10 mins. at a time.

Do you have any hobbies or special interests? Volunteering for Camp Craig Allen is my heartfelt passion, so anything I do for them I feel is a hobby. I love writing (as if you could not tell!), And before I started volunteering on the board for CCA I was writing my own blog about my life living with FA from 2006-2009! I was writing it in chronological order and was 21 when I stopped writing in it. Life got in the way, but I still periodically go in to make edits, add pictures, etc. When I 1st began writing in the blog I did not have a scanner, and my dad would take me to the library to scan pictures! Now I do have a scanner, but need help to scan them in. Finding time for that and for making new posts is not the easiest. But I have every intention of getting back to it! In case you're wondering the web address is www.whatsinmydash.blogspot.com! I have never wanted my blog to be a downer. I do journal some, recently started a travel journal of my travels!

About 18 years ago I started using voice dictation software on my computer. It is where I talk into a microphone and it types for me! That is how come I can be so wordy, LOL! I never would have made it through college without it. I use it almost every day, and I think that it helps to strengthen my vocal cords! The one I currently use now is Dragon NaturallySpeaking 13. I love hanging out with my church family and friends!  I also really enjoy to Skype with my friends! Reading books on my Kindle is another!  I will try anything once and through several different organizations in my area (Camp Craig Allen being one of them) I have gotten to try lots of different adaptable activities! Like waterskiing, sailing, tubing, kayaking, scuba diving!  I have also gone on several cruises!

What is a good trick to make daily life easier? A couple of years ago I got a sturdier wireless microphone headset from Walmart because I was tired of the wires that would come with the voice dictation. Not only was my uncoordinated arms getting in the way of the wires, but I was always rolling over or somehow breaking the headset. Without a recommendation I went online and ordered a Plantronics wireless microphone headset. I am still using the same one I got a couple of years ago! I also found that when I speak on Skype with some of my friends with ataxia that are hard for me to understand the headset works great. The headset drowns out all of background noise and allows me to turn up the volume as needed.

When FA gets you down, what do you think/do to feel better? I have a strong faith in God, so praying to him helps tremendously! I also believe that Laughter is the Best medicine!

What is one way living with FA has POSITIVELY affected your life? As horrible as it is FA has taught me to be more patient, more compassionate, and more humble!! Okay that was more than just one but I could not resist, LOL!

What is a favorite motivational quote of yours? God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Do what you can while you can! I wish I would have taken my own advice a long time ago. Attitude is everything, it is the one thing that FA cannot touch!

What is the first thing you want to do when a cure/treatment to FA is found? I would like to have a huge reunion for those of us who had FA!!  I would also go around speaking/giving my testimony about it! I would do what I have always wanted to do as a girl, and that is to be able to buy any pair of shoes I want!!

"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? FA is only part of who I am, and it does not define me! I want to show my character and perseverance by being someone who loves others and never gives up!

Tell us a little more about you…..To let you know some of the things that I have go with, and am still continuing to deal with as far as FA is concerned: Had scoliosis surgery when 15. Started wearing AFOs (leg braces) at 23. Had surgery on both feet as they turned in at 28. Had 2 heart ablations for atrial fibrillation at 33. Had 3 cardio conversions between 33-35. Got diabetes at 40. I am very blessed to be in a program that is offered here in Texas for people with physical disabilities called CLASS! I have been with this program since 2000, and they pay for my home health and all of my therapies. There is no way I would be able to do it or even my parents on my/their own.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday!

 

 


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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