A father apart with lots of heart

Published: June 18, 2005  |  Source: alsa.org
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The Marion Star/James Miller
The Marion Star/James MiWhat does a 43-year-old father do when he is told he has just three to five years to live?

For Brian Vail of Mount Gilead, the answer has been to live for 10 years with the debilitating Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, well beyond the “norm” for his affliction.

ALS has gradually robbed Vail, a 1974 Otterbein graduate, of many activities we take for granted. He is paralyzed from the neck down and has been on a Ventilator living at Bennington Glen, a nursing care center in southern Morrow County, for five years.

But Father’s Day for Vail will be spent with his family. It is a Sunday and Sundays are the day he is able to get away from the center and come home to visit his family in Mount Gilead.

“‘You have three to five years’ that is what the doctor told me in November of 1995,” said Vail as he recalled the physician’s harsh diagnosis for his symptoms, which started with some muscular pain and weakness.

Family, friends and staff at Bennington Glen believe that much of the reason Vail has defied the odds and continued to live with the incapacitating conditions of ALS has to do with his optimism and positive outlook on life.

“Dad could dwell on his problems, but instead he always asks, ‘How can we do that?’ or ‘How can we deal with this problem?’ He is very positive,” said his daughter, Cherry, a sophomore communications major at The Ohio State University in Columbus.
Chats with Dad

Cherry says she calls her dad almost daily to ask his help on problems, to tell him about her day, or to catch up on something they’ve been talking about. Lately he’s been asking her if she’s got a job.

“He’ll say, ‘Have you checked this out, or have you checked that job out?’ He’s a very involved parent,” Cherry said.

“Technology has been a huge help to our family. Without the DynaVox we couldn’t communicate nearly as much. We could talk to him, but the DynaVox allows him to talk to us through voice, e-mail and fax,” Cherry explained.

The DynaVox is a device that has an electronic letter board mounted on Vail’s wheel chair that scans the alphabet. Vail selects letters by moving his chin against a switch to spell out words and make sentences. He can then make it say what he has written with an automated voice.

Time slows a little as you enter Vail’s room at Bennington Glen and Vail invites you to sit down so he can take a few minutes to write a sentence into the DynaVox and have it “speak” the sentence for him. He writes at the rate of about six words a minute.

Vail’s eye movements speed communication up as eyebrows up signal “yes” and a side-to-side movement with his eyes means “no.” A wink can mean a smile, a laugh or an “I gotcha.”

Vail says the most difficult thing about living with ALS is being apart from his family and, “not being able to hug my wife and kids is very difficult to accept.”

“We’ve all been affected by the situation we are in,” said Vail’s son Ben, who will attend The Ohio State University in Columbus as a freshman with a full scholarship this fall.

“It is like the whole family has the illness. Every day we are affected by the situation we are in, but we don’t dwell on it and we move on and it isn’t so bad,” Ben added.

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.

Brian Vail uses his chin to manipulate a joy-stick connected to a DynaVox text generator. Vail has lived 10 years with amyotrophic lateral sclerosis (ALS), and uses the DynaVox to communicate with voice, e-mail and fax.
Brian Vail uses his chin to manipulate a joy-stick connected to a DynaVox text generator. Vail has lived 10 years with amyotrophic lateral sclerosis (ALS), and uses the DynaVox to communicate with voice, e-mail and fax.

“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.

He was always there

“We try to live as normally as we possibly can. Brian went to see the Junior Miss pageant when Cherry was in it a couple years ago and he went to Ben’s graduation (June 5),” Darlene said. “We try to spend every Sunday together as a family and go to a movie or out to eat once in a while.”

Mary Jane said “Brian lives for Cherry and Ben and Darlene,” and the children in turn are there for him. Darlene says Cherry and Ben have learned, along with her, all the intricacies of his vent, colostomy apparatus and other equipment. They can go to the hospital when he has pneumonia and brief the nurses on his care and they do all that, she says, because he has been such a good father. She says he was the Dad who was always there for them as soccer and swim team coach. They would not think of doing anything but being there for him.

For Cherry the positive side her father taught her wins out.

“If we were a normal family, Dad would probably be doing the mowing and changing the oil and all those other so-called ‘fatherly’ things. But he taught us how to mow and change the oil and a lot of other things we probably wouldn’t know how to do otherwise,” Cherry said.

It takes an hour every Sunday afternoon to load Brian with his 300-pound wheel chair and accompanying equipment into the van to come home. For Ben, Cherry and Darlene it’s worth every minute.

Ben says, “Sunday afternoons are the best – just the fact that we are able to bring him home and have the whole family together is a good time.”

Alberta Stojkovic is a correspondent for The Marion Star.

Spencer C. Stephens Memorial golf tournament and walk

MARION – Spencer C. Stephens was a loving father, husband and friend who passed away in February of 2003 after a brave fight with ALS, also known as Lou Gehrig’s disease.

To honor a man who loved the game of golf, the Spencer C. Stephens Memorial golf tournament was started in the summer of 2003. The third annual event will be Monday, Aug. 22, at the Marion Country Club. The cost is $100 a person for golf and dinner with proceeds going to the Flamingo Fund (5013(C) Donor Advised Fund) at the Marion Community Foundation. The Flamingo Fund supports ALS victims’ families, and was named after Stephens’ love for the beautiful pink bird. Stephens’ family and friends would like to see the money go to a family with children who have lost a parent or guardian to the disease. If you or someone you know fit this criteria you are encouraged to call the Marion Community Foundation at 740-387-9704.

Sixteen teams participated in last year’s tournament and this year’s field will be limited to 22 teams. For more information on the golf tournament sponsored by Advest and Commercial Savings Banks, contact JoAnn at Advest 740-375-8096, or Aaron Crider at Commercial Savings Bank 419-294-5781.

If golfing isn’t your cup of tea, a walk for Stephens and ALS sponsored by the Smith Clinic will take place on Sunday, Aug. 21. Call Stephens’ family friend Cheryl Schmidt at 740-387-8171 for details about the walk or to become a sponsor.

“I really welcome people in the community to please join us,” Schmidt said.

The Spencer C. Stephens Memorial golf tournament, walk and Flamingo Fund committee will be meeting Monday evening so phone calls are encouraged for more information.

Contact Brian

Brian Vail will be glad to communicate with any ALS patients at iamavail@hotmail.com or regular mail at Brian Vail, Bennington Glen Nursing Rehabilitation Center, 825 St. Rt. 61, Marengo, Oh 43334.

What is ALS?
# Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease after the famous baseball player that fell victim to it, is a progressive neurodegenerative disease that attacks Motor neurons in the brain and spinal chord.
# These motor neurons control the movement of voluntary muscles. When the motor neurons can no longer send impulses to the muscles due to ALS, the muscles begin to waste away (Atrophy), causing increased muscle weakness. Motor Neuron, or nerve cell, death makes it impossible for the brain to control muscles or signal them to move.
# Symptoms of ALS include twitching and cramping of muscles (called fasciculation), loss of motor control in hands and arms, impaired use of the arms and legs, weakness and fatigue, tripping and falling, dropping things, slurred or thick speech and difficulty breathing or swallowing.
# In most cases, ALS patients do not experience impaired intellectual reasoning, vision or hearing. Eye and bladder muscles, along with sexual function and drive, are not normally affected.
# There is no cure for ALS.
# The incidence of ALS is five times higher than Huntington’s disease and about equal to Multiple Sclerosis.
# 30,000 people throughout the U.S. currently have ALS. And 8,000 new cases are diagnosed each year.
# ALS has no prejudice – it occurs worldwide, without regard to age, ethnic or economic boundaries.

SOURCE: the www.als.net Web site for the ALS Therapy Development Foundation.

You can help
# According to ALS Association, more significant advances of research into ALS have occurred in the last decade than all the time since Jean-Martin Charcot identified the disease in 1869.
# Stem cell and gene therapy are promising areas of research in a variety of studies.
# ALS mouse models are being used to develop treatments that may some day lead to similar human clinical trials.
# Gene therapy is one area where ALS Association is concentrating support for more study.

Donations and more information

Visit www.alsa.org or write to

ALS Association Development Dept., 27001 Agoura Rd., Ste. 150, Calabasas Hills, CA 91301-5104

Other Web sites

www.healthpolitics.com

brain.hastypastry.net

Web extra

Brian Vail shares his diagnosis and battle with ALS in his words …

“Over the next year my life slowly became more complicated as the disease progressed. Almost every day there would be one less thing I could do. One more muscle that would not respond.”

To read more see this story at your www.MarionStar.com Web site.

“Technology has been a huge help to our family. Without the DynaVox we couldn’t communicate nearly as much. We could talk to him, but the DynaVox allows him to talk to us through voice, e-mail and fax,” Cherry explained.

The DynaVox is a device that has an electronic letter board mounted on Vail’s wheel chair that scans the alphabet. Vail selects letters by moving his chin against a switch to spell out words and make sentences. He can then make it say what he has written with an automated voice.

Time slows a little as you enter Vail’s room at Bennington Glen and Vail invites you to sit down so he can take a few minutes to write a sentence into the DynaVox and have it “speak” the sentence for him. He writes at the rate of about six words a minute.

Vail’s eye movements speed communication up as eyebrows up signal “yes” and a side-to-side movement with his eyes means “no.” A wink can mean a smile, a laugh or an “I gotcha.”

Vail says the most difficult thing about living with ALS is being apart from his family and, “not being able to hug my wife and kids is very difficult to accept.”

“We’ve all been affected by the situation we are in,” said Vail’s son Ben, who will attend The Ohio State University in Columbus as a freshman with a full scholarship this fall.

“It is like the whole family has the illness. Every day we are affected by the situation we are in, but we don’t dwell on it and we move on and it isn’t so bad,” Ben added.