Photos by Janey Saving

Barb and Greg Huston invite the public to participate in the Walk to D'feet Lou Gehrig's Disease that is being hosted Friday, Aug. 10, with all proceeds benefiting the Amyotrophic Lateral Sclerosis Association. The Hustons are pictured with two of their three pug dogs, Mikey (left) and Lulu. Baby Pugsy was unable to be in this photo.



With use of a Dynavox device, Greg Huston is able to communicate with his family and friends. He operates the device with a "mouse" located next to his left foot. He is also able to operate a laptop computer with the use of the unique mouse.


Defeating ALS
Walk raising funds for ALS scheduled Friday, Aug. 10


Janey Saving



By JANEY SAVING

For The Logan Daily News

LOGAN - Greg and Barb Huston were high school sweethearts who are celebrating their silver wedding anniversary on Aug. 7, 2007. Perhaps, you may be thinking "So - what's the big deal? A lot of couples spend more than 25 years together."

But for the Hustons, it is a miracle because Greg suffers from amyotrophic lateral sclerosis (ALS) or more commonly known as Lou Gehrig's disease. ALS is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe.

He has lived with the disease for the past 14 years and that in itself is a miracle because the life expectancy of an ALS patient averages two to five years from the time of diagnosis.

According to the ALS Association, every 90 minutes a person is diagnosed with ALS and every 90 minutes another person will lose his or her life from the disease.

"Unfortunately there is no known cause, prevention or cure for ALS. It can strike anyone," said Barb Huston. "Greg was diagnosed when he was just 30 years old and is still fighting the battle. We pray for a cure, but until then we have to reach out and do all we can do to stop others - like you or your loved ones from getting this horrible disease. ALS can be inherited or can also be sporadic - it shows no mercy and can enter your life without any warning."

In order to raise awareness about Lou Gehrig's disease, as well as raising funds for the ALS Association, Barb Huston is spearheading the 'Walk to D'feet ALS' that is being held at 6 p.m. Friday, Aug. 10.

"We invite you to put your best foot forward in the fight against Lou Gehrig's disease. Everyone is welcome to participate including youngsters in strollers, people in wheelchairs or elderly persons with walkers," said Huston. "We will depart from the Hocking County Fairgrounds and will walk to the Hocking County Courthouse and back to the fairgrounds to enjoy light refreshments and fellowship."

The Hustons are hoping that donors will give at least $25 to the walk in honor of their 25 years of marriage.

"Last year was the first year that we hosted the walk in Hocking County. I hoped that we could raise $2,000. Thanks to the efforts of many volunteers and the generosity of local residents we were successful in raising over $11,000 in proceeds for the ALS Association. We were astounded by that incredible tally. In fact, our community placed third in the state for the number of funds raised from one event. We surpassed Columbus and Cincinnati, we may be small and rural community but we have big hearts and genuinely care about our family, friends and neighbors.

"Of course, we would like to surpass the 2006 total but we will be pleased with whatever anyone can donate to our cause," she said.

The ALS Association reports that donations are used to continue cutting-edge research, patient education programs, support groups, equipment loan programs, referrals to ALS clinics and physicians and local and nationally-directed advocacy program.

"When Greg first began having problems, we noticed that he was losing the ability to grip with his hands. He worked for Kilbarger's and was a very good mechanic. Of course he needed the use of his hands to work on machinery or whatever needed to be fixed. He noticed that he was dropping tools and things frequently and that was when we realized that he was having trouble with his grip. From that point on Greg slowly lost the use of his arms, hands and legs altogether. In Greg's case, the disease attacked his arms and hands first, while in most cases it seems to affect their legs first," Barb Huston explained.

Greg Huston has also lost the ability to speak and must rely on a ventilator 24 hours per day to help him breathe. Lately, he has begun have trouble swallowing. Therefore his medication and 75 percent of food intake is administered through a feeding tube.

"Although he still likes Frosty milkshakes from Wendy's. That is his daily treat and he enjoys every sip," she added.

Thanks to technology, Greg has been provided a Dynavox computer that allows him to communicate with his family and friends. The device is operated by a slight touch from Greg's left foot. Although Greg's legs can no longer support his body, he does have some mobility in his feet, which also allows him to operate a laptop computer while relaxing in his recliner.

The Huston's home is also equipped with an alarm that signals his wife or a caregiver if Greg is having trouble breathing or if the ventilator is not working properly. In addition, as a result of the equipment loan program, most recently a ceiling track was installed in the Huston's home that features a transportable motor lift that enables them to move Greg from the living room to the bathroom and bedroom as needed.

"The motion to mobility device has been a true asset to me, because it was getting more difficult for me to lift and move Greg. With the use of a net and harness attached to the motor device we can move him easily," Barb Huston said.

The Hustons praised the community for their continued love and support.

"We are blessed to live in such a caring community. We are grateful to many individuals as well as Kilbarger's, Huston Equipment Repair, CVS Pharmacy, Pepsi, Kroger's and Wal-Mart for their assistance with our fundraising efforts. We must also thank the fair board for allowing us the use of the fairgrounds for the walk, to Mike Mercer Auto Sales for giving us a van several years ago and to our many family members, friends and neighbors for offering their support and friendship throughout the years.

"Now we are asking for your support to help us make this second walk as successful as the first one," Barb encouraged.

If anyone is interested in participating in the walk or would like to make a donation to the ALS, please contact Barb Huston at 385-8683. She noted that the first 200 participants will be presented ALS t-shirts and that donations may be mailed to 770 E. Main Street, Logan, Ohio, 43138.

Once the walk is over, Barb and Greg plan to take a well deserved break. They plan to rest quietly at home with their daughters, Brandy, who is a dental student at Columbus State and Heather, a hairdresser in Pickerington. Most of their free time, they spend loving their three pugs, Baby Pugsy, Lulu and Mikey.

Barb Huston said that with Greg's illness their lives have not always been easy, but it is their love and faith that keeps them going.

"Sometimes the ride has been bumpy, but God has followed us along the way and picks us up when we don't think we can take it anymore. I will never put Greg in a nursing home - I can handle it. In our wedding vows - we both promised until death us do part and we plan to honor those vows. We thank God for giving us the strength to make it through each day," she said.

When asked why Greg still keeps his beloved tools in the garage, he replies, "Because I'm going to use them again someday. I refuse to give up and pray that a cure will be found in my lifetime," he concluded.


http://www.logandaily.com/main.asp?S...ticleID=123198

Patients, family and friends connect at fund-raiser for ALS

Published: Friday, August 3, 2007
By Sky Barsch
Free Press Staff Writer

SOUTH BURLINGTON -- It is difficult for Deb Wehrlin to articulate how much she misses her late husband, Jeff Goyette.

An avid outdoorsman who had an easygoing way about him, Goyette meant the world to Wehrlin. He helped her de-stress after work, and "knew how to live," as she put it -- appreciating the outdoors, time away from work, and the company of others. She lost him in 2005 to amyotrophic lateral sclerosis, commonly called ALS or Lou Gehrig's disease.

To honor Goyette's memory, Wehrlin and several others who have lost family members to the rare and incurable disease are raising awareness about the September "Walk to D'Feet ALS." It's an opportunity to raise money for ALS research, patient education programs, support groups, equipment loan programs, referrals to ALS clinics and physicians, and local and nationally directed advocacy programs.

Wehrlin said it's also an opportunity to remember lost loved ones, celebrate those afflicted with the disease, comfort each other, and let family and friends of patients know they are not alone.

"It's not just about the money," Wehrlin, of South Burlington, said. "This is a day to say, 'We understand.' Come and enjoy this one day."

Wehrlin said it is difficult to predict who will get ALS, and resources are thin.

"Nobody escapes the chance," she said.

Anyone -- patients, family, friends, caregivers, sponsors and members of the public -- can participate in the walk or cheer walkers on.

Wehrlin said each year, she and family and friends host a pig roast in Goyette's honor. This year, she will run a raffle at the pig roast to raise money for the walk.

Connie Kendall lost her father to ALS. She is part of the group raising awareness for the September walk.
Contact Sky Barsch at sbarsch@ bfp.burlingtonfreepress.com or 660-1861.
WHAT IS ALS? ALS is a terminal neurodegenerative disease that attacks cells in the brain and spinal cord leading to loss of motor function, paralysis and death within two to five years of diagnosis. There is no known cause, cure or effective treatment.
-- Source: ALS Association
IF YOU GO WHAT: 2007 Walk to D'Feet ALS
WHERE: Oakledge Park, Burlington
WHEN: Sept. 22
TIME: Check-in between 9:30 and 10:30 a.m., walk at 11 a.m. and bring-your-own picnic from noon to 2 p.m.
INFORMATION: events @alsanne.org, 482-4095 or visit www.alsanne.org

A game of life: ALS fundraiser in Newburyport

--------------------------------------------------------------------------------

By Gillian R. Swart/amesbury@cnc.com
cnc
Fri Aug 03, 2007, 02:30 PM EDT


Amesbury -
Newburyport High School varsity baseball coach Bill Pettingell has had an incredibly successful career. His program not only has logged an awesome number of wins and spawned numerous coaches, but has also produced a group of men who remain committed to Clipper baseball. This group is the NHS Alumni Baseball Association. Coach’s boys of summer take care of each other, even long after they have graduated.

Nowhere is this more visible than in the case of Brent Paulhus, NHS Class of 1984. In 2001, Paulhus was diagnosed with amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease ‑ a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord.

“I received many, many phone calls from the team to offer their support,” Paulhus says.

In 2004, Mike McCormack, graduating captain of Clipper baseball, said he thought it might be worthwhile to try to support ALS research while resurrecting the alumni game. The alumni baseball games had been played on and off since 1974, but never had the players pitched, hit and run for a cause other than the baseball program.

McCormack was working with Brent Paulhus’ twin, Bryan, in Haverhill and the two had become friendly. When Coach Pettingell mentioned the alumni game, McCormack thought about his friend’s brother.

“I put two and two together, got the idea and went with it,” McCormack says.

Getting the appropriate co-sponsor ‑ Newburyport High School ‑ the Association arranged a game for the benefit of Brent Paulhus.

“I wanted to do it for a cause,” McCormack says. “It brings out the best in people.”

A former player for Coach and avid Red Sox fan, Paulhus says after 2004 he was set for funds, so proceeds from the 2005 and 2006 alumni games have gone to the ALS Association.

“Take a swing at ALS,” Pettingell says. “That’s our purpose.”
The game is played between teams comprised of a mixture of older alumni and recent grads. The guys who graduated in even-number years play guys who graduated in the odd years. Last year, Pettingell says, 43 former players showed up for the game. One of them, Mike Sullivan (Class of ‘90) flew in from Atlanta ‑ just to play. He went home after the game was over.

“That’s a pretty expensive gift to ALS research, I think,” Pettingell says.

Coach says the game is always scheduled for the second Saturday of Yankee Homecoming ‑ a time organizers figure a lot of alumni will be home anyway.

He does not play. “It’s a game for the alumni,” the 60-year-old says firmly. He does, however, have an honorary diploma, so technically he could join his former players if he so wishes.

Reversing the curse
Paulhus, who grew up in Newburyport but moved to Merrimac after his diagnosis, says all things considered, he thinks of himself as being very fortunate. The average life expectancy of a person with ALS is two to five years from the time of diagnosis, but he has had a slower progression of the disease. Still able to walk and drive, he volunteers for Amesbury Mayor Thatcher Kezer as his stand-in for events the mayor can’t make, and last weekend was in Philadelphia, at ‑ what else? ‑ a baseball game.

For the past three years, he adds, raising awareness of ALS and fundraising is how he’s spent his time. In October 2004, Paulhus and fellow ALS patient Matt Dowd of Andover launched www.reversethecurse.org to help both reverse the legendary Curse of the Bambino on the Red Sox and raise money for ALS research. On the site, Sox fans and Yankee fans were pitted against each other, dollar for dollar, on a Karma Score Board. As the ACLS went on, donations went up, and as we all know, the Red Sox went on to trounce the Yankees in the most dramatic way possible.

“He [Brent] and his twin brother are always right in there, selling tickets and such,” Pettingell says.

“I’m incredibly proud to come from a community where people pay the type of attention I’ve received,” says Brent.

One generous local gave Paulhus a state-of-the-art wheelchair at the 2004 game.

“Even if I give up coaching,” Pettingell declares, “this will always be something I think is very important for us to do.”

The big game
“We hope the public comes,” Pettingell says. “We need fans.”
The game starts at 10 a.m. tomorrow on the Lower Field at Newburyport High School. All the proceeds from the price of admission ‑ $10 or $20, and you get a tee shirt ‑ and the raffle will go to the ALS Association. This year’s hot item up for grabs is an autographed photo of Red Sox ace Curt Schilling, valued at $200. The Schillings are energetic fundraisers for the ALS Association. Last year’s game raised $2,000.

Post-game, the 2007 NHS baseball awards will be given out and the captain of the 2008 NHS baseball team will be announced.

Also to be honored are this year’s winner of the Alumni Baseball Association Scholarship, Christopher Bresnahan; the Alumni Association Person of the Year for 2007, Mike McCormack; coaches of the Northeast Squad of the 2007 Bay State Games Michael Crowley, Tim Leary, Ryan McCarthy and Peter Yates (all NHS grads) ‑ and Kyle LeBlanc, who was the lone player from Newburyport on the team, which on July 12 won the gold medal.

“I’d personally like to thank the community, local businesses and fellow alumni,” McCormack says. “Without them, this thing wouldn’t be able to go.”

“It’s one of my favorite days of the year, if not my favorite,” Coach Pettingell says.

Sure beats those pesky state tournaments.
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