' ... And to All a Good Life'
ALS chapter makes sure patients' families get their X-mas wishes



Monday, December 17, 2007 Friday, December 14, 2007 Thursday, December 13, 2007 Wednesday, December 12, 2007 Tuesday, December 11, 2007 Select a date
ROSALIND GUY | The Daily News


PICTURE OF TOGETHERNESS: Scott and Tammy Brown are shown with their children, Logan, 9, and Lauren, 12. Tammy Brown, 36, was diagnosed with Lou Gehrig's disease in 2004. -- PHOTO COURTESY OF THE BROWN FAMILY
Every parent would like to get at least one special Christmas gift for their children, whether it's an iPod, MP3 player, computer or digital camera. You know - that one item the kids can brag about when they go back to school after winter break.


This year, 9-year-old Logan Brown would like a portable DVD player, and his sister Lauren, 12, wants a digital camera. Their parents, Tammy and Scott Brown, would love to be able to get those gifts for them.


But things have been a little tight since Tammy was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, three years ago.


The Browns are among 37 families whose children won't be disappointed on Christmas morning, thanks to the ALS of Tennessee Holiday Support Program.


The families are adopted by volunteers or supporters who shop for gifts from a list provided by the families. The patients turn in a wish list for each family member and provide a brief history of their journeys with the illness.


"ALS is completely an emotionally and financially draining disease," said Betsy Snyder, ALS patient services coordinator who heads the Holiday Support Program. "So, the holidays can be a really hard time."



Still hanging on


ALS is a progressive neurodegenerative disease that eventually affects every muscle in a person's body.


"They become basically trapped in their body and they're eventually unable to speak and then eventually unable to breathe," Snyder said. "Because ALS progresses fairly quickly, the need for equipment, and particularly the need for home care, is great. So a lot of time spouses have to quit their jobs to stay home with the patient."


Scott Brown hasn't had to quit his job because he has family support. While he works weekends at the Wal-Mart Inc. distribution center in Searcy, Ark., his mother comes to their home in Batesville to take care of Tammy.


"We get (the kids) stuff, but we can't afford too many big gifts. I mean it helps out at Christmas. ... It helps out with the kids a lot."
- Scott BrownWhile Tammy is worse off than she was three years ago, they still manage to lead a fairly active life.


"She's doing good," Scott said. "It's a little worse than what it was when she was first diagnosed. We're still getting out and about and we still do things."



Solid support system


Last year, the ALS of Tennessee chapter sent the Brown family to Washington for National ALS Advocacy Day and a public policy conference.


"We had a ball," Scott said. "We took the kids. ... We drove up there and we went on up to New York City and took the kids to see the Statue of Liberty and then we went back on down to Washington and we got to take the kids to all the monuments, plus attend the meetings that we were there to attend."


Scott and Tammy found out about ALS of Tennessee shortly after Tammy was diagnosed in December 2004.


Their patient services coordinator is Linda Gilbert, whose office is in Memphis.


Scott said Gilbert has been a valuable resource for his family.


"Linda, she's great," Scott said. "We've had various support group meetings that we've attended. If we need equipment, things that our insurance doesn't cover, like a shower chair ... we just call Linda and she'll say go (buy it) locally and send me the bill."

Coping mechanisms


The Holiday Support Program is just one of the services provided by the ALS Association's Tennessee chapter. The chapter serves ALS patients and their families in Tennessee, Arkansas and Mississippi.


"We do home visits with our families, providing emotional and social support for families," Snyder said. "We do an equipment loan program, because a lot of times people need equipment really fast; we have a healthy closet of donations so that we can donate power chairs and hospital beds and things like that. We work with speech language pathologists to help our folks get adjusted to their augmentative communication devices."


The augmentative communication devices are used by ALS patients once they are no longer able to speak. There is no known cure for ALS.


"There's nothing you can do about it," Snyder said. "There's nothing they can do to slow it down."



Making a list ...


The ALS Association Tennessee chapter started recruiting supporters for the Holiday Support Program back in October to give the volunteers plenty of time to shop for the families.


Many of the supporters are repeat volunteers and board members. The supporters usually try to get the patients and their families everything on their lists, Snyder said.


"Unfortunately, we'd like to tap other people. And we have enough funding for advertising, so any publicity is just folks volunteering their time or giving us the gift of visibility. So, I usually send out a letter to probably about 150 people, just asking for their support."


Occasionally, the organization gets a last-minute donation. Last year, a "very large financial gift" came in and the money was used to buy $120 Wal-Mart gift certificates for each of the families.


But, even if there's no last-minute gift, the families are grateful for the volunteers that provide gifts from their wish lists.


"It's something that Tammy and I, we can't afford," Scott said. "We get (the kids) stuff, but we can't afford too many big gifts. I mean it helps out at Christmas. ... It helps out with the kids a lot."

http://www.memphisdailynews.com/Edit...aspx?id=100261