Meet Shirley Burgess. Shirley is the first recipient of the VisuALS system from the Arkansas ALS Association’s loan closet. The ALS Arkansas Chapter is excited to be able to serve their loved ones with a brand new affordable AAC device and thrilled that Shirley gets to be the first one to use it.
Shirley lives just outside of Fort Smith, Arkansas in Roland, Oklahoma, where she happily resides with her best friend, whom she has been married to for 19 years. Shirley & her husband (and their two blue-eyed Corgis) are very thankful and blessed to have their nephew living with them to assist in Shirley’s care.
Shirley graduated from the University of Oklahoma with a Master of Social Work and had worked as a Medical Social Worker for Mercy Hospice for a few years, where she even had a few patients along the way diagnosed with ALS. When she first learned about ALS, she thought it was a hereditary disease, but later was told that only 5% of cases are hereditary leaving the other 95% to be sporadic with no rhyme or reason. This was the case for Shirley.
She was a person who ate healthy, worked out everyday, never smoked, never did drugs or alcohol and yet she was diagnosed with ALS. It all started when she painfully rolled her ankle stepping out of a truck. The ankle never healed and only became weaker and weaker. After 27 doctor appointments with no answers to why this was happening to her, she was finally put in touch with and accepted into the Mayo Clinic in Rochester, MN, where she was told within 48 hours after arriving that she had ALS.
Shirley continues to work part time as a therapist/case manager, seeing patients and connecting them with needed resources. She has been very proactive in writing letters and creating legacy videos for her family to access after she’s gone. As ALS continues to weaken her body, Shirley places her trust in God and takes comfort in knowing that God is with her every step of the way.