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.
