Family matters
Vail's nurses and aides commented on the tremendous support the family continues to give to him. Holly Pauley, LPN, who has been at Bennington since January 2000, when Vail arrived, says his family is very involved in his care and he is active in his kid's events.
Pauley described regular visits from Ben, who works part time in the kitchen at Bennington, as well as visits from Cherry, who likes to study in his room.
"His family keeps him going and he is amazing. He has a lot of will power and he is always very positive," Pauley said as she described his daily routine. "We always count on him to look things up for us on the Internet."
Vail says he waits until 2 or 3 in the afternoon to get up since he gets tired of sitting in the same position. He spends the morning getting a bath, watching news and a few programs on TV as well as thinking and planning what he wants to do with his life "when I recover from this disease."
Vail remains involved in the Vail Realty, which he founded. His wife Darlene runs the business and frequently calls him with questions. He will fax back an answer or suggestion. He spends about 7 hours in his wheelchair every day, from 3-10 p.m. He e-mails as many as 65 contacts. Several are ALS patients and one ALS patient is a Japanese man in his 40s that he's been in touch with over the past year. He spends 2 or 3 hours every day researching the latest medical and political information on ALS and stem cell research.
"The real hope for finding a cure for this disease and a host of other diseases is stem cell research. It is considered to be the holy grail of possible cures for diseases. Unfortunately, the current Bush administration has set U.S. stem cell research back years with the restrictions that he has imposed," Vail said.
Vail's mother, Mary Jane, said that one of his biggest disappointments is that some people stay away for fear they'll say the wrong thing or fear they won't have anything to say.
"I wish you could make people realize he enjoys people stopping by. They don't need to worry about what to say. He enjoys visiting about any subject," Mary Jane said.
Darlene says it is Brian's optimistic nature along with his patience and acceptance of the conditions of his disease that keeps him going.
"He just doesn't get depressed - at least not for long. He is the most optimistic person and most accepting person I know. He just says, 'Depression doesn't serve me,'" Darlene said.
Hopeful advances
One recent cause for optimism is the latest technological development for control of his computer and DynaVox voice output system. Darlene reports that Brian will soon be exploring the latest in "Eye-Gaze" technology.
Forbes Rehab Services of Mansfield is the supplier of Brian's present system and they are having Brian be part of the trial for using the new system that operates using signals from eye movement, known as Eye Response Technology. ERT is now being used to access the computer for people with ALS, cerebral palsy, spinal cord injury, Multiple Sclerosis and muscular dystrophy.
"Some ALS patients just want to do the minimum with their computer system," said Paul Forbes of Forbes Rehab Services. "Brian is especially interesting to work with because he wants to access everything and he has maximized the use of his computer system. He is able to access lights, TV, VCR, fan, fax, Internet and voice through his system."
This newest technology, which they have been working on for about 12 years, is actually less expensive. The first computer systems cost around $35,000 and this newest Eye Gaze will cost $7,900. Funding for the research and equipment is covered by Medicare, Medicaid and insurance.
Darlene says they have been able to relate to the Terri Schiavo family on issues of quality of life. She says Brian has been very accepting of all the limitations the disease has put on him and made adjustments. She notes Brian was able to beat the odds in the length of time he lives with ALS because he accepted having a tracheotomy to use the Ventilator to breathe, even though that forced him to go to live in the rest home. She said that is the point where most ALS patients give up and choose to go no further.
One of the most discouraging problems Darlene and Brian encountered was running into "unscrupulous" vendors, who "play on the emotions of the terminally ill" and ask patients to invest in everything from magnets to herbs. Darlene says it took 18 months to get an electric wheelchair since one company they talked to had made false promises about what they could do.
"We will be glad to share our knowledge and experience if we can help any newly diagnosed ALS patient or shield some other family from the problems we had," said Darlene. The average expenses for equipment and care for an ALS patient on a ventilator are about $200,000 per year and can be covered by insurance, government assistance and foundation research funds.
