NEW BEDFORD — Imagine not being able to walk, talk, eat, breathe on your own or move any part of your body, yet you feel everything and your mind is as sharp as it always has been.
This is what the world is like for Cheryl Adesso, who has ALS, amyotrophic lateral sclerosis, or Lou Gehrig's disease, named for the New York Yankees great afflicted with the muscle-wasting condition.
One of the cruelest aspects of ALS is that patients' ability to communicate becomes so limited. But two months ago, Adesso's world got a lot bigger when she received a DynaVox EyeMax computer that allows her to communicate by just looking at a screen.
Adesso calls her computer "absolutely amazing. It has so many features that work by just using my eyes. I can type, make phone calls, change TV channels, send e-mails and search the web."
Nicole Tumblin, a consultant for DynaVox, said the technology uses light-emitting diodes to track a person's eyes. When users' eyes rest on a letter or phrase, they either blink or hold their gaze to signal their choice to the computer. The computer is then programmed to provide the necessary audio for listeners in the room or on the phone, create a word processing document, or send an e-mail.
"These computers have been used with people who have autism, down syndrome, cerebral palsy, ALS — really anyone who has difficulty with basic communication and beyond," Tumblin said.
The computer costs $16,000 and was paid for through Adesso's MassHealth plan.
Although some insurance plans do not cover the technology, Tumblin said anyone interested should go to www.dynavoxtech.com for more information and assistance with funding.
Seven years ago, Adesso was an office manager at the Wamsutta Club when she started to feel limp on her right side. After seeing a number of doctors, she was diagnosed with ALS and quickly went from a cane to a walker to a wheelchair.
"I was devastated when I had to leave my job I loved so much ... and all the great people that I worked with. I grew weaker and weaker as the days went by," she said.
Her disease progressed to the point where she was placed in a long-term care facility.
Adesso said the experience was a nightmare and she fought to get back into her own home. The fact that she did is testimony to the 62-year-old's will to make the most out of her life, said Jackie Brooks, one of Adesso's six home care nurses. She now lives alone with 24-hour help.
Adesso is trying to get her nursing and personal care attendant hours increased to help her sister and ex-husband who have been covering 32 hours a week.
Now that she has a link to the world, Adesso plans to write a book about her experiences. She is also reaching out to others with ALS and is working with the ALS Association of Massachusetts. Social worker Karen Baker said the association provides a wide range of services to patients and their families and a support group meets once a month in New Bedford. For more information, call Baker at (508)-446-5093.
Asked what brings her joy in life these days, Adesso said animals (she greatly misses her Yorkshire terrier who died) and seeing children, such as when nurse Hannah Poitras brings in her 15 month-old daughter, Emma.
Ultimately, Adesso said her wish is "to die at home after I help others."
Brooks' response: "Now that we are keeping you healthy, we want to see a little more living in between."
Adesso can be reached by e-mail at breeeezinonby@aol.com.