Our journey began in the summer of 2018. Before her second granddaughter was born, Christy started having some breathing issues. Small at first and then progressively worse. Then she started having some slurring of her speech which eventually led to her losing her speech. She saw a lot of specialists and started working with a neurologist who initially diagnosed her with Myasthenia Gravis. Her symptoms continued to progress and a couple of months after Emory was born was the first time they mentioned Progressive Bulbar Palsy as a possible diagnosis. We immediately got a second opinion and her doctor continued to treat the MG. She was a puzzle to every neurologist and doctor she saw. She saw 3 neurologists in Central Arkansas and could not make a diagnosis because nothing seemed to fit. In August she went to Mayo Clinic and saw an excellent medical team. The physician even called me from Minnesota and talked for 45 minutes answering all of my questions. She was diagnosed there with progressive bulbar palsy which is a motor neuron disease and a type of ALS.
Since then, she has had a feeding tube placed and a trach placed. She uses an iPad for communication and sleeps with a ventilator. With all of these things, she could easily be angry or bitter, but she is not even a little bit. Y’all, She is the absolute STRONGEST, TOUGHEST and most AMAZING person I know! She takes each day with a smile on her face (after she stays up until 2:00 AM and wakes up at noon) and while it isn’t always easy we try to enjoy every moment! This disease is hard, crazy hard, but she tries to live each moment with absolute love, extreme faith and endless positivity!
Through everything, we have really leaned into focusing on the blessings and wow there are so many! Mom has been so blessed by her family, especially Marty who is the absolute best caregiver and the 2 little girls who keep her on her toes and keep her laughing and smiling, her amazing friends (with a special shout out to the Flamingo's who keep her grounded, positive, and smiling), and the most amazing community including her school family of educators, administrators, student's and parent's and a wonderful and supportive church community! We couldn't be more thankful for everyone who is a part of our journey and could never thank everyone enough!
ALS needs so much more research! 15 people are diagnosed every day in the US alone. There is no cure and treatments are extremely limited at this point but that is why awareness and research is so important! We hope and pray for a cure each and every day! So many people are suffering! Please join our team and help us to raise awareness. May is technically ALS awareness month, but every month for us is ALS awareness month.
