Adulting with FA

My name is Stephanie Kilgore, 45 years old, and I live in Fort Worth Texas. I feel that everyone has a story to tell, so here is mine! Writing is very therapeutic for me as that is why I started a blog about my disability back in the day and am continuing it now as an adult! I am writing in chronological order. I try to always look for the good when writing, although I am only human!

About my physical disability Friedreich’s Ataxia: I have a rare, progressive, genetic, neuromuscular disorder of the nervous system called Friedreich’s Ataxia (FA). The nerve endings deteriorate which causes them not to regenerate. The main symptoms are a loss of balance, coordination, and fine motor skills. I was diagnosed at 12, walked until I was 18, drove a car with hand controls for 7 years, and now I am doing good to push will my manual wheelchair. Some of my other symptoms are fatigue, energy deprivation, muscle loss; vision impairments, hearing loss, and slurred speech; scoliosis; diabetes (DX in 2014); atrial fibrillation (DX in 2002); I wear AFOs (Ankle Foot Orthotics, or leg braces. Started wearing them in 1997.) The mental capabilities of people with FA remain completely intact. About 1 in 50,000 people in the US have FA. As far as an expiration date goes for FA for me I just keep rolling on! I have heard and read that our time should be up in our 30s (I have several other friends with FA who absolutely have surpassed that as well). Nobody is guaranteed tomorrow, and when God is ready to take me home then I will go! Both of my parents have to be carriers to pass along the gene. I have a brother who is 2 years older than me, and he is fine. We cannot trace back anyone in our family who has this, yeah me!

This disability has taught me that Everything happens for a reason, laughter is the Best medicine, not to sweat the small stuff, what doesn’t kill you makes you stronger, and that trusting God is the best thing that you can do! I like to implement these things in my blog when possible! There are 5 stages of grief: denial, anger, bargaining, depression, acceptance. From the time I was around 6 or 7 (when I started showing signs of being clumsy and off-balance) until now I keep going through the stages every time my FA progresses. I am glad to report that getting older, and having a strong faith helps me to skip some of the stages and go straight to the acceptance stage! Having awesome family and friends that surround me helps as well! Thank you for taking the time to choose to read this blog!
Rolling on, Stephanie