Allistair is a physician, husband and father with a passion for cooking, Marvel movies, and professional soccer. Living with ALS has motivated him to share his knowledge and cultural traditions, especially with his two young sons. Since his diagnosis, Allistair has lost the ability to speak, walk and move his arms. He uses an AAC (augmentative and alternative communication) device he controls through eye movement for everything from ordering groceries to asking his sons to water the plants to keeping the thermostat right where he likes it. The device, an I-Series, allows him to coach his sister on cooking and teach his sons his second language, Spanish.
“I have heard about people who have chosen to live in yes/no questions and I think my life is so much more fulfilling because I can still express myself.”
— Allistair Abraham, MD
While Allistair was in college, he volunteered at a hospital near campus. One day, he saw a sick child dragging a medical pole through the hallways of the facility. When he asked about this, he learned that the child was battling cancer. Soon after, he changed his major to pre-med, determined to help kids with similar illnesses. Eventually, Allistair became a hematologist and dedicated his career to improving treatments for sickle cell disease.
The first sign that he might have a condition was the feeling of weakness in his hand. Allistair then started to experience some other early signs of ALS, including difficulty speaking. He was quickly diagnosed with amyotrophic lateral sclerosis, which is commonly called Lou Gehrig’s Disease.
Shortly after his ALS diagnosis, Allistair’s wife Dana insisted that he bank his voice. With support from the Gleason Foundation, Allistair used Acapela’s my-own-voice solution to create a digital copy of his voice. He read 50 sentences into a computer to capture his accent and tone in different syllables, which would become the building blocks of his digital voice. He also banked a few of the phrases he uses most often. Now that he has lost his ability to speak, he’s grateful to Dana for urging him to bank it. He pairs it with a couple of text to speech apps on his I-Series. “It feels like it’s me talking,” Allistair says.
For Allistair, it was hard to be a patient after being a doctor. After he started to lose speech and mobility, he continued to practice medicine for as long as he could from home. Eventually, he had to retire. However, even in the later stages of ALS, he attended conferences and peer reviewed articles within the hematology community using his I-Series. The American Society of Hematology now gives an award in his name to the highest performing participant in its research program for minority medical students.
Allistair now has a team of caregivers who help him prepare for the day with medications, feeds, and exercises, but assistive communication has helped him to maintain a sense of independence. In addition to enabling him to have conversations, Allistair’s I-Series serves as an eye-controlled computer, which he navigates through software called TD Control. To surf the internet efficiently, he uses TD Browse, especially to shop for groceries, browse recipes and check email.
Though he often has visitors during the day, Allistair looks forward to his family’s return from work and school in the evening. He uses an app called TD Phone to send his sons friendly reminders to complete their chores via text message. At night, he watches movies and television, using his device to make selections, change the volume and dim the lights.
Like many people living with ALS, Allistair has taken time to consider his legacy. Beyond his impact on the medical community, he wants to ensure his sons and sister feel connected to their Trinidadian heritage. Before ALS, Allistair enjoyed making curries with lentils, chicken and shrimp. When his sister visits, he shares these recipes and teaches her the nuances of each dish as she prepares them. Allistair’s I-Series has also enabled him to teach his sons chess and Spanish, skills they will carry with them for a lifetime.
ALS stands for amyotrophic lateral sclerosis. Also called motor neuron disease or Lou Gehrig’s Disease, ALS causes the brain to stop communicating with the muscles, eventually resulting in complete paralysis, apart from the muscles of the eye, which ALS leaves untouched. Early signs of ALS may include muscle twitching and weakness, trouble walking and slurred speech. Most people with ALS eventually lose their voice. Some rely on assistive communication to continue to express themselves and connect with the world. Though people tend to associate the disease with older males, ALS can affect anyone at any age. While ALS treatment continues to improve there is currently no cure for ALS.
Get more information on how to support individuals with ALS by enhancing their communication through AAC.
