Theresa Brinsley; valiantly lived with ALS
Theresa Brinsley of Long Beach spent her final 15 years in a nursing facility, paralyzed from the neck down, but still able to use the twitch of an eyebrow muscle hooked to an electronic device to write a book and letters and blog posts about amyotrophic lateral sclerosis, the crippling disease that finally took her life Saturday at age 55.
"I believe that this disease has changed me and for the better," Brinsley wrote in her first blog post on ALSforums.com on Sept. 28, 2010. "I have a greater appreciation for life now and I don't take anything for granted anymore."
Brinsley had spent about a year, from spring 2006 to spring 2007, writing a book, "Living with ALS," according to Meredith Kanner, her speech pathologist at the A. Holly Patterson Extended Care Facility in Uniondale.
The electronic writing device was in a closet in Brinsley's room when Kanner went to work at the facility in September 2000, she said. She brought it out, hooked up the sensor to Brinsley's eyelid and showed her how to select letters from a menu.
"She wrote this book letter by letter," Kanner said. "One of the problems with ALS is that speech becomes less and less intelligible. It became her lifeline to express complete ideas and thoughts." Her family said they hope to have the book published soon.
Brinsley was diagnosed with ALS, also known as Lou Gehrig's disease, in December 1992 while living in Long Beach. There, she was active in the PTA at the Lido School as well as the Long Beach Coalition Against Pesticides and other environmental efforts, according to her son Adam, of Merrick.
She grew up Brooklyn and moved to Merrick as a teen. She attended Sanford H. Calhoun High School in Merrick and married her former husband, Richard Brinsley, in 1976. The family moved to Long Beach in 1985. They were divorced after she got sick, he said.
She had worked in a picture-framing store after her marriage, but did not return to work after the 1978 birth of her first son, Eric, now living in Enid, Okla., Brinsley said.
"She was not an educated woman, but she had a nice way of expressing herself," Kanner said. "She had a will to live and that really sustained her."
One of the many people she wrote to was Sen. Charles Schumer (D-N.Y.), who responded with messages saying he was fighting for more federal funding for ALS. "She was an inspiration to me and my entire staff. My deepest, heartfelt condolences go out to her family," Schumer said in a statement Monday.