Victorians unite to fight ALS (w/video)
For more information about the people with ALS support group, or PALS, contact the Rev. Bill Hassel at firstname.lastname@example.org or through Facebook at Wm C "Bill" Hassel.
John Ball, 57, of Victoria, was diagnosed with amyotrophic lateral sclerosis, or ALS, in August.
Ball knew firsthand what was to come. His mother died of ALS in 2003.
"It seems like every month is harder - harder to talk, harder to breathe, harder to move," Ball said Sunday at a benefit for the fight against the disease. "It's extremely hard - not just physically - it takes a toll mentally as well. I worry about her (my wife), my children and grandchildren. It's not just me living with the disease. They are, too."
ALS is a neurodegenerative disease that affects the neurons that control voluntary movement, said Lou Kobbs with the ALS Therapy Development Institute. As the disease progresses, patients become paralyzed, he said. Once the disease is diagnosed, patients are typically told they have three to five years left to live, he said.
But there are exceptions to the rule. Pastor Bill Hassel has been living with the disease for almost seven years. Five years ago, Hassel created the annual 5K race, Stroll, Roll 'n' Run, to raise money for ALS research. Sunday's event brought in more than $25,000, Hassel said. He said $2,500 will help pay for the unmet needs of ALS patients in the Crossroads.
"I'm so happy so many people are here in this awful weather," Hassel said.
Jessica Spahn, 28, of La Porte, won the 5K women's race. Spahn moved from Victoria three years ago. While she lived in Victoria, she became friends with the children of Sophia Smith, a Victoria woman who died from ALS last year. Spahn has participated in the race for two or three years, she said.
In May, Spahn will be taking part in MS Run the US, a 3,000-mile relay run across America to raise awareness for multiple sclerosis, she said.
Six years ago, Spahn was diagnosed with MS, a disease that like ALS results in the loss of muscle control. "I do it to keep myself going. I don't know what's going to happen to me," Spahn said.
In addition to the annual 5K event, Hassel also started a support group for people with ALS, or PALS. Before that, the closest support group was in Houston, Ball said.
Ball and his wife joined PALS a couple of months after he was diagnosed. Though the group is made up of people dealing with a terminal disease, you couldn't imagine a group with a better attitude, he said.
"I stay happy because I know what I can do today I might not be able to do tomorrow," Ball said.
Ball and his wife, Virginia Ball, 57, of Victoria, said it was their first time at the Stroll, Roll 'n' Run. The couple learned about the event through the support group.
"It means a lot to know that there is support for people who have ALS," Ball said. "My plans are to be right here next year. I don't know if I'll be walking or rolling, but I plan to be here."