BAKERSFIELD, Calif. (KERO) — ALS affects roughly 35,000 people in the United States each year, and the ALS Network is working to provide resources for those who have it.
23ABC spoke with a Kern County resident who has ALS, and how he says the network has helped him stay positive.
Amyotrophic lateral sclerosis, or ALS, is a neurodegenerative disease affecting a person’s motor skills, eventually leading to the loss of muscle function.
On Nov.7, at the Park at River Walk, the ALS Network held its annual family day and walk, where the community was invited to learn about ALS.
“ALS takes and takes and takes,” said Jeff Hurlbert, a Kern County resident with ALS. “I had a doctor explain to me one time that sometimes it takes like overnight you will drop levels, but I am here to say that ALS also gives. It gives you the tenderness of the heart.”
The ALS Network is an organization providing resources, advocacy and care services for anyone who has ALS, and also for their family members.
Attendees were able to enjoy free food, like chips and Subway sandwiches and help themselves to coffee and hot chocolate.
There was also an activity center for children, where they were able to make their own snow cones.
ALS Network leaders say the most important part of the organization is awareness.
“Imagine never losing your five senses that you can always smell, hear, touch, feel, but imagine that you cannot touch yourself to scratch yourself or you can't rub your eye, and even though you can smell the food, you may not be able to swallow and eat the food,” said Tammy Galt, director for community outreach with the ALS Network.
The event was set up like an outdoor banquet, with round tables in the center for people to mingle and enjoy their food, and resource booths set up around the perimeter.
For some of those at the event, they used it as a way to reflect on the positive things in life, no matter how difficult living with ALS can be.
“I'm no longer an outsider with ALS,” Hurlbert said. “I'm a part of this group that is so full of love because there's no cure for ALS, so folks would have a choice to either become filled with hope, such as myself, or be hopeless, and I don't know anybody here that's hopeless.”
While there is no cure for ALS, community members say it's resources and events like these that give them the motivation to keep going each day.
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