The same holds true in the spring of 2021 for the 1996 Catholic Central High School graduate and former Irish boys basketball coach, who was diagnosed with amyotrophic lateral sclerosis on Dec. 26, 2019. He and his wife Brooke, who live in Batesville, Ind., with their daughter Kerrigan, 7, and son Andrew, 4, continue to spread spread awareness of ALS and will do so even more in May.
Today starts ALS awareness month. All month we will share information about ALS. As always, any and all questions are...Posted by Andy Murphy on Saturday, May 1, 2021
That’s why Andy didn’t hesitate to agree to an interview and share his story. While ALS has robbed Andy of his ability to talk to most people, Brooke can still understand him and helped translate. She also provided her own perspective on what Andy’s battling and why they have been so public about his journey.
“We’ve become really passionate about sharing our story and bringing awareness to this because people just don’t know,” Brooke said. “It is such a fast progressing disease. There’s not a lot of time to make people aware of it because of the duration of the disease, and it’s really personal for people that have it. Some people don’t want to share their story because it’s a tough disease to watch. Some people who have loved ones pass don’t want to be a part of that anymore because it’s a horrible thing to watch. And other people continue to be advocates for awareness. We’re just trying to really make people aware of what ALS is and just be transparent with our journey.”
A special group
The story of Andy’s journey can’t be told without revisiting his days at Catholic Central. Twenty five years ago — March 23, 1996, to be exact — the Catholic Central High School boys basketball team made history, beating Van Wert Lincolnview 75-52 to capture the Division IV state championship.
The players still keep in touch, occasionally chatting in group messages. Facebook makes it easier these days. Nathan Weber, one of the 11 players to see action in the final game, shared a team photo on the 25th anniversary in March.
Eighty four people clicked like on the photo, including Jason Ronai, who scored 18 in his final game with the Irish and was outscored only by the team’s star, center Jason Collier, who had 22 points.
Murphy was tagged in the Facebook post even though he was not in the photo. He wasn’t able to play his senior season and battled injuries throughout his high school career, undergoing three surgeries between his sophomore and senior years.
“I actually tore my ACL and missed the season,” Murphy wrote in a text message Thursday. “I didn’t feel like I should be in the picture since I hadn’t played, so I scheduled a doctor’s appointment the same day as the picture. I caught hell for that from the coaches and the other guys.”
That didn’t stop Murphy from enjoying the state championship run.
“It was a really special group of guys,” he said Wednesday as Brooke translated for him. “lt was one of those things where everybody was always picking up everybody else.”
Murphy was especially close to Collier, Ohio’s Mr. Basketball that year. They were roommates at Indiana University, where Collier played two seasons before transferring to Georgia Tech. When Collier died from an enlarged heart in 2005, just before the start of his sixth season in the NBA and about a month before Murphy coached his first game in his one season at his alma mater, the News-Sun spoke to many of Collier’s former teammates and coaches, including Murphy.
“Jason was so much more than basketball,” Murphy said then. “My fondest memories of Jason were of Jason as a person.”
Sixteen years later, Murphy’s feelings remain the same.
“He was a better person than he was a player,” Murphy said.
A new perspective
Collier was 28 when he died. Murphy, 43, has now lived 16 months with the knowledge there are no effective treatments for ALS and most patients live two to five years. He and Brooke received that news with shock on Dec. 26, 2019, about five months after Andy started experiencing symptoms: slurred speech and difficulty swallowing.
“I remember the day so vividly,” Brooke wrote on Facebook. “We stopped for lunch on our way to his appointment, excitedly making plans for our house and things we wanted to do. The neurologist we were seeing came highly rated. We were feeling happy and relieved. After months of questions, symptoms and doctors visits with nothing concrete, we were finally going to get some answers. Twent minutes into our visit, he told us he knew what was wrong with Andy. When he told us it was motor neuron disease my first thought was OK, we know, now we fix it. He got us up to speed on what to expect and how little is known about what causes ALS and the lack of treatments. Our relief, in an instant, turned into disbelief.”
In the last 16 months, they have become ALS experts and have been candid on social media when asked about the disease.
“The disease progresses to a point it paralyzes you and eventually suffocates you,” Andy wrote last week in response to a question from a friend on Facebook.
Some ALS patients beat the odds. Former New Orleans Saints safety Steve Gleason, now 44, has lived with ALS since 2011. Ezzard Charles, a world champion boxer from Cincinnati, survived for seven years after his diagnosis in 1968. Physicist Stephen Hawking lived for decades with the disease. On the other hand, the person most commonly associated with ALS, Baseball Hall of Famer Lou Gehrig, died two years after his diagnosis.
“There are some people he is friends with that have had it for 15 years,” Brooke said. “There are obviously exceptions to the rule. We don’t really know what the timeline is. Two to five years is just the average. There are people living much longer. On the flip side, there are people that once they are diagnosed don’t make it six months or a year.”
That’s why Andy said he tries to appreciate every day. In April, he shared a photo on Facebook of himself wearing a shirt the letters “NDCQ” and the words “Not Dead Can’t Quit” below them.
On the final day of ALS Awareness Month last May, he wrote on Facebook, “Today is how ALS has changed my perspective on life. To be honest the thing you always hear about how people appreciating things more and just being more open and honest has been true for me. I feel like I don’t have any secrets. If there is something I want to try to do for or with my family, I’m going to try to do it now. There is no longer a some day. That is today.”
ALS has made life a daily challenge for Andy. He has an Eye Gaze Device that helps him type by using a tracking camera that follows his focus, so he can choose letter after letter just by looking at them on a computer screen. This has allowed him to continue working from home as a compensation consultant at Cincinnati Children’s Hospital Medical Center.
Brooke takes care of Andy at home, and they said they’re fortunate their kids have been in school throughout the pandemic and not doing classes virtually.
Andy was still working in the office in Cincinnati when the pandemic began in March 2020. He traveled with friends and family to Indianapolis for the Big Ten basketball tournament that month, and they all ended up stuck in a rental house when the tournament was cancelled. They did manage a trip to the Hoosier Gym, where scenes from the movie “Hoosiers” were shot, in Knightstown. One photo shows Andy draining a jump shot — in the style of Jimmy Chitwood, the “Hoosiers’ star — from near the free-throw line.
Since then, the ALS has progressed. Andy can not get up on his own and has a lift chair to help him. They recently had a wheelchair ramp installed outside their house. He sleeps with a ventilator at night because has trouble expelling carbon dioxide on his own. He had surgery to implant a feeding tube last September and then had a second surgery to adjust it in December.
While doctors can try to make Andy more comfortable, the lack of progress toward finding a cure or more treatments for ALS patients is frustrating for the Murphys. What’s especially troublesome for them is medications that might help ALS patients go through the same trials as medications that treat diseases that aren’t as serious. They saw exceptions made for COVID-19 vaccines and hope that leads to change on the ALS front.
“There’s no push to get the people that have ALS these treatments faster,” Brooke said.
The Murphys visited Ohio State in March with hopes of getting Andy into a clinical trial but found out Andy didn’t qualify because his platelet numbers were just a bit below the requirement. They found another trial through the Mayo Clinic but then discovered Andy would have to get on a wait list and by the time he became eligible he would be too far removed from the date his symptoms began to qualify.
“I fully believe everything happens for a reason,” Brooke wrote on Facebook in April. “Even when it is hard to understand how or why this is the path we were given, we’re still hopeful something good is coming our way.”