How APSO Began
In November 2011, future ALS Patient Services Outreach (APSO) co-founder Larry Seacat, was invited to join a small group of friends to travel from Tulsa to a humble home on the banks of Fort Gibson Lake to perform a small “worship” service for a strong and courageous victim of ALS (Lou Gehrig’s Disease), who was, by then, completely disabled by the disease and unable to leave her home and attend her own church.
Pat Tucker and her husband Ray, had been faithful church goers for many years, but by now, because of Pat’s disease, could no longer leave their home to go to church. Her disease had left her completely paralyzed, leaving only the movement of her eyes to communicate with the world around her. Pat’s mind was completely untouched by the disease, but she was locked inside a body that would no longer function. Ray, her loving and devoted husband, was her 24/7 caregiver. The love he showed for her, and their faith, was nothing less than God inspired.
After providing spiritual support for this couple, this little, make-shift worship group, who had provided this mini worship service, traveled back to their homes in Tulsa. For Larry, this glimpse into a previously unknown world, left him passionate about, and determinded to do more. While discussing the situation with ALS nurse Barbara Graff, who organized the trip, they decided that he should meet some other ALS patients and attend an MDA support group meeting for the northeast Oklahoma ALS community. Barbara was, at the time, the clinical coordinator for the Integris, MDA, ALS clinic in Oklahoma City. She represented the clinic and its services through home visits visits with patients and their families. She also served as the facilitator for the MDA ALS support group.
During the next few months Larry learned that there were a variety of needs that weren’t being met through conventional means for most of these families. Medicare, Medicaid, the MDA, and other organizations, were limited in their services, but simple everyday needs such as lawn maintenance, simple home maintenance and everyday personal activity needs were not being met. In addition, caregiving resources were very limited, with insurance covering none of this assistance. It became obvious that as the disease progresses, caregivers become exhausted, and desperately need assistance that they can not financially afford out of pocket. It became apparent that it was time to act, so APSO was founded by Barbara and Larry to help fill in the gap for those services. Larry now coordinates thepatients' and caregiveres' day to day physical tasks and needs, while Barbara is the clinical coordinator and advisor for this same geographical population.
APSO works to provide services to patients, via caregiving networks provided by mobilizing volunteers through local churches, civic organizations, and friend networks. They have helped ALS families in northeast Oklahoma with such services as education,childcare, bathroom accessibility, wheelchair ramp constgruction, arranging for lawn care, house cleaning, education, equipment needs, spiritual assistance, caregiver network setup, and even something as simple as companionship. APSO has started a series of educational seminars to help prepare the patients and families with the knowledge they’ll need to navigate through the progression of the disease. In the first 3 years since being organized, APSO has helped over 40 families to obtain help in areas where it has otherwise not been available.
For more information on ALS, or to find out what you can do to help, contact ALS Patient Services Outreach at 918-595-5758 or email: firstname.lastname@example.org.