• August 9, 2020

PERMIAN BASIN PROFILE: Local football official diagnosed with rare brain disorder - Odessa American: Sports

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PERMIAN BASIN PROFILE: Local football official diagnosed with rare brain disorder

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Posted: Saturday, June 27, 2020 6:40 pm

For most of the last three decades, Gary Speed has been in the middle of the action on Friday and Saturday nights as an official on the football field.

He was even on the officiating crew as part of the movie “Friday Night Lights.”

These days, Speed is involved in a battle far away from the lights.

The 56-year old was diagnosed in May with Creutzfeldt-Jakob Disease, a rare, incurable degenerative brain disorder.

It was a shock to his family and friends throughout the Permian Basin, many who know Speed through his work as an official.

“It’s been a stunner for us,” said Mike Speed, Gary’s older brother. “When this originally popped up, they had diagnosed that he had a stroke because he was having some chest pains, slurred speech and numbness.”

Appointments with local doctors and neurologists in March indicated that Gary Speed did not have a stroke, but doctors weren’t sure what was wrong.

Speed got a referral to be examined at UT Southwestern Medical Center in Dallas in May where they conducted a brain biopsy and a spinal tap, among other tests. The results of those tests came back positive for CJD.

Only one out of every one million people are diagnosed with the disease annually, according to the Centers for Disease Control and Prevention (CDC), and there are few doctors around the globe who currently are working to study or treat the disease.

Since the diagnosis, Mike Speed has started a Go Fund Me account to help Gary and his wife, Barbie Lane Speed, pay for upcoming health expenses at home. As of Tuesday evening, the campaign has raised $23,480, nearly halfway to the $50,000 goal.

If there is extra money raised, the rest of the funds will go to the CJD Foundation based in Akron, Ohio.

Barbie Speed said that her husband had not shown any symptoms prior to March and that her goal is to create more awareness about the disease.

Since his diagnosis, she says that she has done as much as she can to educate herself on the disease and what it entails.

She and Gary are both part of a study at University Hospitals Neurology in Cleveland, Ohio, to learn more about potential treatments and causes of the disease.

“Most people don’t really understand what it is,” she said. “There’s no cure for it and it’s a scary and terrible disease.”

“They’re trying to trigger out in very healthy people. It’s really hard and heartbreaking to be told that there’s really nothing that can be done.”

Both Mike and Barbie described Gary as kind and caring no matter what he was doing.

Aside from his work as an official, Gary was also a juvenile enforcement officer for 30 years. He and his wife had both recently retired and were ready to start the next chapter of their lives together.

“Nobody deserves this no matter what you’ve done in your life,” Barbie said. “Knowing what kind of heart he has for young people and football is probably the hardest part of all of this.”

Since his diagnosis, Speed’s family and friends are trying to make the most of the current situation.

This included a recent road trip with two long-time friends who are also officials to Yellowstone National Park and Mount Rushmore.

Family and friends also got together to raise money and create “Speedo Strong” shirts as a benefit and Gary and Barbie recently came back from a trip to Las Vegas.

Having Barbie by Gary’s side is something that Mike says has been paramount in his brother’s fight and that he’s also learned a lot about his younger brother during this time.

“Quite honestly, I’m learning a lot about Gary as we go through this,” Mike said. “He’s very entwined in the community in Odessa.

“He knows everybody and I’m just amazed by the names that he can drop on me. There are a lot of people who think Gary is the best and that’s really heartwarming to see.”

Barbie added that she’s been trying to stay positive through this trying time.

“The silver lining in this terrible thing is that most people don’t get that time to take the trips, see the family and do all that stuff because of how this disease acts,” she said. “We’ve been blessed that we’ve been given this time.”

Odessa, TX

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