“I remember that I had just lost my job. I was shell-shocked and frantic after hearing my diagnosis, and Dr. Tillett thought it would be good for me to talk with Cheryl Young, the lay navigator at Norton Neuroscience Institute Resource Center. I did, and she was the calm in the storm for me.”
Robert Phillips’ first symptoms appeared in 2009 and progressively worsened. First it was double vision followed by balance and walking issues. He lost his high-paying job as a lineman and then lost his next job working in a warehouse for half the pay. There was no explanation to offer about his falls and lack of coordination, and he became high risk to his employers.
Robert had a feeling that whatever was wrong with him was somehow connected to members of his father’s family who were having medical issues. He reached out to his aunts to compare notes and was told that they had been diagnosed with SCA, or spinocerebellar ataxia. Robert scheduled an appointment with a neurologist, who later referred him to Robert S. Tillett Jr., M.D., with Norton Neurology Services. After numerous medical tests and consultations in the fall of 2013, he was diagnosed with SCA, the same disease his family members have.
SCA is one of a group of genetic disorders that damages areas of the brain controlling movement in the arms, legs, hands and eyes, leading to loss of physical control. There is no cure or treatment to slow down the progression of SCA. Robert had just turned 36 years old when he was diagnosed. The first thought that crossed Robert’s mind was his teenage daughter and the possibility that she could be diagnosed with the same disorder in the future.
Robert was grief-stricken. His life had changed in the blink of an eye. He found himself facing a diagnosis with no cure or treatment, progressive in nature, with no employment, no medical insurance and no income. Dr. Tillett felt that Robert needed to meet with the Norton Neuroscience Institute Resource Center. The resource center provides assistance to individuals and families living with neurological disorders, free of charge. The center helps navigate patients through the health care system and enhance their quality of life by teaching them how to live with a challenging chronic illness. Services include educational, therapeutic and exercise programs, nutritional counseling, support groups and navigators to ensure that there are no barriers between the patient and his or her medical care. The center also offers prescription and disability assistance, medical equipment, help with housing decisions, employment and financial guidance, and an array of additional services.
When Robert arrived at the resource center, he felt lost. He met with Cheryl Young, patient navigator. Cheryl listened to Robert to identify the various issues plaguing him and assessed his immediate needs. Since their first encounter, the resource center has been working alongside him. Cheryl serves as his guide, offering valuable resources, directing him with his Social Security disability application and medical insurance, as well as obtaining medical insurance for his teenage daughter. The center also supports him with his medical office visits.
When asked how he feels, Robert states that he has to be strong for his daughter.
“I can’t change what I have; I can only change how I cope and try to make the best of a bad situation,” he said.
Once Robert’s immediate needs are met, the focus will shift to getting him involved in other resource center programs. In the meantime, Cheryl is a sounding board and connection to the many resources that are available to him.
“I am blessed to have such a great medical team, but what a bonus to have Cheryl and the resource center!” Robert said. “I was on my own until I met Cheryl and the resource center.”
Come and support others like Robert at the 1-N-3 Gala, “Unmasking the Faces of Neurological Disorders,” taking place on Saturday, Oct. 11, 2014, at the Louisville Marriott Downtown. All proceeds raised help to fund the many free programs and services offered by the Norton Neuroscience Institute Resource Center. If you are interested in becoming a gala sponsor or purchasing tickets, call Elizabeth Hannan, development coordinator, Norton Healthcare Foundation, at (502) 629-5543.