Lubbock, Texas is home to people from all walks of life, but for one small group, one thing connects them all. They have ALS. Now, brought together by this devastating disease, this group is on a mission to raise ALS awareness in their community.
The story of the Lubbock support group starts with one family and their unexpected experience with ALS. Patricia England and her family love the community of Lubbock, Texas. She explained that even though she’s moved from the town to be with her husband in Oklahoma, “Lubbock is my home very much so.”
She recalls the difficult ALS journey her mother Jackie faced. Several years ago, Jackie started having trouble with her balance. Patricia laughed as she shared her mother was always a clumsy woman, so they didn’t think much of the symptoms. But after she also started having issues swallowing, the family searched for answers
“My mother was diagnosed in September 2018 at Texas Neurology with Dr. Heitzman,” Patricia shared. At the time, Patricia had moved to Oklahoma with her husband. But when Patricia’s sister broke both of her feet, she travelled down there to take care of her. Unfortunately, her sister passed in August 2019, and Patricia temporarily moved back to Lubbock to stay with her mom. “I felt like someone needed to be with her.”
Inspiration to Find Community
Jackie felt alone in her ALS experience and desperately wanted to find community. “I just want to meet other people that are dealing with this so I know I can live with it.” Patricia recalled her mom sharing one day.
Ok so what do we do? Patricia thought to herself. She was aware that there was a population of Texans with ALS in the area. Her mother had encountered several at her job as a nail tech, and they’d heard of more from a gentleman who attended her sister’s funeral.
“What if we do a support group? Let’s all get together and walk each other through this.” Patricia planned a first meeting for the new support group, but she needed a way to spread the word. She contacted a news reporter who conveniently was already preparing a story about a woman living with ALS in Lubbock. The reporter agreed to add an announcement regarding the new support group to the segment.
The day came and on November 12, 2019, the group met for the first time. Patricia was amazed at the turnout. “The first meeting blew my mind. People kept showing up and kept showing up.” Though they were aware of others in Lubbock with ALS, they had no clue just how many there were. And just like that, a medley of people with different ALS experiences came together to share with one another.
For the longest time, Jackie insisted she would never get a trach placed. A gentleman with ALS who also had a trach visited the meeting and conversed with her. Following that encounter, Jackie felt she could do it too. “Just seeing that hope, it was priceless,” Patricia shared. Among those in attendance was Amanda Stephens, a local speech language pathologist.
Providing Educational and Emotional Support
Amanda Stephens treated Jackie during her battle with ALS. Through that encounter, Amanda grew to find a passion for caring for those living with ALS in the area. “We really don’t have a lot of support here in Lubbock when it comes to professionals who are really experienced with ALS and who can provide comprehensive care,” she shared. She accompanied Jackie and Patricia to an ALS clinic in Dallas. There, she met Dr. Heitzman and his team.
Seeing all the things that were available there that we don’t have here has inspired me to try to bring things here and develop a team in Lubbock, Amanda shared.
Unfortunately, Jackie’s ALS symptoms progressed quickly, causing her condition to decline. She lost her battle with ALS in March 2020. Patricia stayed in Lubbock for another year to handle her mother’s affairs before moving back to Oklahoma. “I will stay involved and do everything I can for this group and ALS in general because it is so near and dear to my heart. These people really are my family now,” Patricia shared.
Since Patricia’s departure from Lubbock, Amanda has stepped up to lead the group as it continued to grow. It started not only as a place for emotional support, but also a place for educational support. “I would bring in different professionals to talk about different aspects of ALS.” Amanda shared that she also does many of the communication device evaluations and encourages the participants to bank their voice.
A Growing ALS Community
People with ALS from all different backgrounds come together for this group in Lubbock. They all have one thing in common—they have ALS or love someone with ALS. Under this common experience, they’ve created unbreakable bonds. Some of those group members graciously shared their ALS experience with us and why this community is so important.
Ken Olson has lived in Texas since 1967. He and his wife Charlene have a background in law enforcement and emergency management. Ken was diagnosed with ALS in 2015 after experiencing drop foot and a complicated recovery from a bilateral knee replacement. “I’m the older dude with ALS in our group,” Ken shared with a chuckle.
Rebecca Talley was a runner who was very active in sports. She and her husband Tim met in university and were full-time missionaries in Kenya and Tanzania for 27 years. Rebecca also worked as an adjunct professor at Lubbock Christian University. She retired in 2019 after being diagnosed with ALS in March of that year.
Bruce Gilliam played softball for many years before being diagnosed with ALS in 2019. Today, the disease has progressed to his foot, legs, and it’s now affecting his right hand. That doesn’t stop him from coaching a senior softball team in Lubbock or spending time with his wife, Raquel, and rescue pup, Mia.
These are just a small handful of the many lives touched by this growing community in Lubbock. “By being in this support group, we are able to encourage each other. Because we may have been through it. We may not have been through that particular issue. But the greatest thing is that we all have one thing in common, and that is ALS,” Ken Olson shared. As the group continued to grow, they realized they could lead the fight against ALS in their community.
Leading the Charge for ALS Awareness
For many in the group, their first encounter with ALS was when they or a family member was diagnosed. They want that to change. The group discovered the Walk to Defeat ALS and decided that’s where they would get started.
There is a need to make awareness to the people of Lubbock and the south plains all around us…the only way we can get people aware is getting the word out there, and the Walk will help with that, Charlie Olson.
The Lubbock group joined the Walk in 2020 under the name Team Guns Up for ALS. They chose the name for ‘Guns Up,’ the slogan of Texas Tech. Many of the members have some affiliation with the university.
Last year, the group had plans to do a big BBQ cookoff to raise funds for the Walk. However, due to the unexpected circumstances of the pandemic, the team participated virtually. This year, they’re back bigger and better than ever.
The team hosted a BBQ cookoff in July to kick off their fundraising, raising $1,700 for their team. In October, the team has already passed their fundraising goal and is the top fundraising team for their local walk! They hope the funds they raise can aid in bringing awareness to the disease in Lubbock and beyond. “The more that we can bring awareness to ALS and everything involved in this is a good thing,” Amanda shared.
A Hope for Better Resources in Lubbock
Not only does the team hope to raise awareness, but they also hope to attract better resources in Lubbock. Amanda noted that while there’s a population of ALS patients in Lubbock, there aren’t many doctors equipped to treat ALS nearby. “I’d love to see more of our medical community involved in ALS.”
Many of the Lubbock group members travel far and wide for multidisciplinary care. Some travel to Dallas, Houston, or San Antonio. Others travel as far as the Mayo Clinic in Scottsdale, Arizona—all wanting to see doctors equipped to handle their disease.
Those that travel to clinics in other cities find better support. However, “travel is not always an option for people,” Patricia noted. Many factors affect this like financial reasons or because of disease progression. “There’s not a neurologist equipped to handle ALS in Lubbock, Texas. And my hope is we can get somebody there that can understand and can help.”
The group hopes that the efforts of the Walk will help encourage other medical professionals in Lubbock to join the cause. It’s important to have knowledgeable professionals who can guide those experiencing ALS as they navigate treatments and those who claim they have solutions.
“There’s a temptation to look for cures on the internet. Having a doctor who is aware and can explain why these cures don’t work or not help can keep false hope from absorbing emotions and money,” Rebecca Talley shared.
The Importance of the ALS Community
The group also relies on each other to share wisdom and tips for their ALS experience. “It’s been so important for us,” Tim Talley shared. “There’s something deeply spiritual that happens in our group. We all remember those times that have been very raw. We’ve laughed, but we’ve also cried…It’s very real.”
Ken agreed as he encouraged others with ALS to get connected with a support group. These people can understand where you are and where your disease will progress. “It’s that kind of comradery that I think the value of the group is to each of us as individuals.”
Guns Up for ALS Puts a Face to the Disease
Team Guns Up for ALS hopes to put a face to the disease in Lubbock, Texas and beyond. “Living in the moment of this is what we can do right now—share our stories…raise the awareness. The little we can do in the moment,” Tim shared.
While the efforts of the team may not bring a cure in their lifetimes, they are thinking ahead to those who will follow them. “Unfortunately, we are losing people to this horrendous disease, but we are also gaining new people every meeting,” Charlie noted. All the members of the Lubbock support group know that the moments they spend fighting this disease bring us one step closer to a world without ALS.
Join us and Team Guns Up for ALS on Saturday, October 30 for the Walk to Defeat ALS! You can register in your city, then walk wherever you want. When you support the Texas Walk, you support the fight to end this disease and bring better resources to Texans with ALS.