ALS Care Beyond Words

Although he’s lost his ability to speak, Ken O. still shares his thoughts and feelings, thanks to help from his BAYADA Nurse, Susan

Bayada nurse Susan embracing Ken's wife Annette
Ken O’s wife Annette with his BAYADA Nurse Susan Bartko

Ken O. from North Carolina is a lot of things — a retired physician, husband, father, grandfather, friend. He also happens to be a person with ALS, a diagnosis that has left him unable to move, speak, or breathe on his own. Although Ken relies on a tracheostomy and ventilator to help him breathe, his extraordinary mind is as strong and active as ever.

For the past six years, Ken and his wife, Annette, have opened their home and hearts to his BAYADA Nurse, Susan B., LPN. They have come to rely on Susan to not only help Ken with his medical needs, but also for the comfort and compassion she generously provides. Susan understands that Ken’s mind is as sharp as it was before his diagnosis, and is not deterred by his inability to speak. In fact, Susan and Ken have developed their own way of communicating, with Susan reading Ken’s eye movements to determine what he needs or how he is feeling. Annette says that Susan’s ability to communicate with Ken helps free him from his disease and keeps his mind active. Susan even facilitates communication between Annette and Ken, helping them to retain the closeness and joy in their relationship. Annette shares that she frequently tells Ken, “When Susan comes in, we will have more conversation.”

Ken and Annette describe Susan as kind, courteous, and pleasant. They agree that her exceptional nursing skills give them a sense of comfort they desperately need as they battle with ALS. From closely maintaining his medication schedule to alerting Ken and his family to any changes in his condition, Susan is vigilant in her commitment to keeping Ken safe at home. She is also a wealth of knowledge about ALS, providing them with helpful information and suggestions. Annette says, “The care that Susan provides is remarkable. It requires compassion, a willing heart, and stamina to care with such great concern.”