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Spreading awareness and positivity

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Submitted photo Shane Ankeney, local Guillain-Barré syndrome survivor, has used his story to inspire and motivate others with disabilities. He also started an organization, GBS/CIDP Global, and is having a kick-off event on Saturday, May 11.
KateLynn Slaamot, NLJ Reporter

Most people may not know what Guillain-Barré syndrome is, but for one local man, it’s all too familiar. His bout with the disease in 2016 was an experience that forever changed his life.

Shane Ankeney grew up on a ranch outside of Upton and graduated from Upton High School in 2002. The music enthusiast has been playing guitar for over 20 years and loves music, he said.

In early 2016, he had just moved to Colorado Springs, where he was working and pursuing music. One night, he went to bed frustrated because he had noticed weakness and tingling in his hands that hindered his guitar playing that evening, and when he woke up the next day, he couldn’t even sit up in bed. He was taken to the hospital, and by the end of the day he was paralyzed from head to toe and on a ventilator.

According to the Mayo Clinic website, Guillain-Barre syndrome is a “rare disorder in which your body’s immune system attacks your nerves.” This disorder usually starts with tingling and weakness in the hands and feet and can progress quickly to paralyzing your whole body. While there are treatment options, full recovery can take several years.

Ankeney spent the next few months in and out of an induced coma and was on a ventilator for six to seven months.

He spent over 16 months in a hospital and was confined to a wheelchair for even longer. He eventually moved back to the area to be closer to family and support, and he continued outpatient physical therapy to relearn to walk, along with other motor skills.

Even now, Ankeney is not completely back to full strength. He lost his ability to play the guitar, a depressing reality for the music lover. Now, with only 20% of use in his hands, he’s been able to get back to the instrument he loves, although it’s taken a lot of work to get there.

“When I got out of the hospital, I couldn’t even hang on to a guitar,” Ankeney said.

He has used the hardship to inspire others, and after his move closer to home, Ankeney started a pilot car business that took him all over the United States. During that time, he stopped at local rehabilitation facilities to talk to people and help motivate them through their disabilities, and eventually, hospitals started calling him and asking if they could give his number to GBS patients who needed some hope.

“The biggest lesson I’ve learned is, your mental strength is the most important thing. That’s been the motivator, that’s been what’s gotten me through everything, is looking at things in a positive perspective. … That’s been a life changer,” Ankeney said.

His desire is to help others learn how to have that same positive perspective to overcome the obstacles in their lives, and out of that desire, the idea for a nonprofit organization was born.

In October 2022, Ankeney incorporated GBS/CIDP Global Support Organization to support and advocate for other GBS and CIDP patients. CIDP stands for chronic inflammatory demyelinating polyneuropathy, which is a somewhat similar disease to GBS.

Through this organization, Ankeney has consulted on about 300 GBS cases around the world, advocating for patients and providing information and support, he said.

Recently, Ankeney has had the opportunity to expand the work of his organization to include raising awareness for the disorders.

And that’s where music comes in.

Ankeney plays music with his friend and fellow musician, Lance Bergstrom. The two have organized multiple open mic events and decided they wanted to do something a little bigger — a singer-songwriter competition. Because Bergstrom is also involved in Ankeney’s organization as a board member, they decided to combine music with their cause by putting on a music event that would promote local musicians and raise awareness for their organization.

This event, the Black Hills Singer Songwriter Competition, is a kickoff event for GBS/CIDP Global Support Organization.

“Being able to tie it all together and still kind of promote a musical edge, but also bring awareness to this disease. … It kind of ties it all together. We can promote the local talent,” Ankeney said.

“This is an opportunity to bring a lot of people into one room and put the words Guillain-Barré syndrome into their ears, and CIDP, and just give a fast education,” he added.

During his hard times, music was an important motivator, Ankeney said, and he thinks it’s only fitting to use that for his cause. His fight to be able to play guitar again was a tough one, he said, but music never stopped being important in his life.

“I always try to promote music. … “It’s been a medicine to me for a long time,” Ankeney said.

Bergstrom has been a huge asset to the cause, according to Ankeney, and has an unparalleled passion to see the organization succeed and be effective. This competition is one such effort by Bergstrom, because he’s spent a lot of time and effort to make it happen.

“I’m dedicated to it,” Bergstrom said.

“I’d have to pump the breaks on Lance quite a bit,” Ankeney added. “He’s just that motivated.”

The singer-songwriter competition, set to take place on May 11 from 1-10 p.m. at the Newcastle Lodge and Convention Center, will feature a number of singer-songwriters from this area and beyond. People can even enter the competition on the day of, and food will also be provided. Two grand prizes are to be awarded at the end of the event.

Ankeney and Bergstrom said they are so thankful for the support of their sponsors and the community at large. They are excited for this kickoff event and to raise awareness for the cause that is so near and dear to their hearts.

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