As Aphasia Awareness Month is coming to an end, we are sharing stories of some inspiring, recent clients at UMAP. Barry Costello joined the UMAP family on April 28, 2014 when he traveled to Ann Arbor, Mich. for a session. We had followed Barry’s story as well as his friends and family’s incredible fundraising efforts online. We were lucky to meet Barry and his family. Carly Costello, Barry’s daughter, was an integral part of Barry’s recovery and attendance at UMAP. She has shared the story of her dad’s aphasia with us.
Imagine losing your ability to drive wherever you want or talk as much as you want. Imagine losing your ability to walk to the mailbox, eat by yourself or even brush your own teeth. Imagine your whole world changing in a matter of minutes.
This became a reality for my dad, Barry Costello, on January 25, 2012.
The Day that Changed Barry’s Life
On that day, my dad suffered a massive stroke, leaving him paralyzed on his right side and unable to speak, stealing his independence.
On the morning of that day, Barry felt a strange feeling in his right arm and leg. Next thing he knew, he was kneeling on the ground, his coffee spilt on the chair next to him.
He was conscious and answered my mother when she called his name. When she asked what was wrong, he said he lost his balance and that his leg was numb and he could not get up. Within the next minute, the feeling in his leg and right arm came back and with my mother’s help he was able to get up. His facial features and coloring were normal and he was speaking without any problem. He just said ‘that was strange.’
My parents continued on with their plans for the day and headed out to lunch with some friends.
When they got to lunch, they told my dad’s story to two friends who are nurses. They were greatly concerned and decided that my dad needed go to the urgent care down the street immediately. They knew something was not right.
My parents and a friend, Shawn Hanson, walked into the urgent care at 2:15 p.m., saw the doctor at 2:30 p.m., and at 2:35 p.m., my dad had a massive stroke right in front of the doctor.
They called an ambulance and by 3:15 p.m., they were arriving at Northside Hospital in Atlanta, Ga.
I got the news as he was being loaded into the ambulance and rushed to be by his side. I tried not to think of the worst-case scenario and focused on contacting my other siblings who live in the local area as well as out of state. One by one, I reached them and they all hopped in their cars and made the journey to the hospital.
When we arrived at the emergency room, my dad was talking and moving like nothing had happened. They ran some tests and noticed a blockage in the left side of his brain. The hospital staff knew they had to act fast, but as they were assisting my dad into a hospital gown, he had the final stroke that stole his independence.
The Final Prognosis
As the night and days went on, it became a waiting game. My family and I had questions, but the doctors did not seem to have all the answers. It was frustrating. It wasn’t until a few days later that we got the hard diagnosis. My dad was paralyzed on his right side and unable to speak.
How could this be? My dad is the strongest man I know. He is never sick or hurt. How would he go on? His favorite things to do were talk, tell stories, socialize with people and drive his truck. Would he ever be able to do these things again?
After learning of his new disabilities, my family was in disbelief and unsure of how my dad would be able to live a normal life again.
We tried to be positive. After all, he was still here with us. Being paralyzed was one thing, but it was something that we thought he could deal with. The loss of speech was something else and my family was unsure if he would be able to cope.
Due to his stroke, my dad suffers from expressive aphasia, also known as Broca’s aphasia. It results from a left middle cerebral artery cerebrovascular accident, meaning blood flow through an important artery of the brain was interrupted. This causes a lack of oxygen in a specific part of the brain called Broca’s area, which is very important in the production of speech. Luckily, the stroke did not affect his memory and it did not cause a lack of intelligence, but we knew that not everyone would see this and that it was only one more struggle for us to add to our list.
The Beginning of a Long Recovery
The doctors explained that the best thing for my dad’s recovery was therapy and a lot of it. Within a few days of being at the hospital, he started speech, physical and occupational therapy to help him relearn how to swallow, walk, talk and complete daily tasks, things that can become very frustrating to those dealing with this kind of situation and someone who is used to being independent.
It was hard for him but we never thought he would give up. That is just not his personality. He has a great support group of family and friends and even strangers who were cheering him on. And, it seemed that the more people, family and friends around, the better he did. He loves an audience and a cheering crowd.
My dad continued physical, occupational and speech therapy in a rehab setting for eight months after his stroke, but due to medical insurance benefits running out, he had to stop physical and occupational therapy. But this never stopped his drive to get better.
My dad has always been a hard worker. He is a man of many trades having been a police officer, a repo man, a business owner, a salesman and a bus driver, just to name a few. And his hard-work ethic has continued on despite his life’s changes.
Since his stroke, my dad has had to relearn what many would consider simple tasks like feeding himself and some new tasks like maneuvering a wheelchair.
Once his insurance benefits ran out, I knew we had to do something. I was looking for anything that could help my dad: clinical trials, test studies, anything. During my research I found the Georgia State University (GSU) Speech Clinic, which is located at my alma mater, Georgia State, in downtown Atlanta.
We quickly enrolled my dad into the GSU speech program since it was located close to home and was very reasonably priced. He was able to continue speech therapy through this program, where he received formal therapy twice a week for an hour each session. My dad made great strides with this program, but I knew it was not enough. In order for him to get better, he needed more.
That is when I found the University of Michigan Aphasia Program and was blown away that such a thing existed. It was exactly what my dad needed! I proposed the program to my mom, but quickly realized that it was expensive and there was no way my family could afford it. But this would not stop me. I now had a goal and that was to send my dad to get the help he needed.
A Daughter’s Dedication
When I discovered the program, I was recently engaged and commissioned into the U.S. Air Force. My (now) husband and I started filling out our registry when we quickly realized that we did not want a lot of stuff. We move every couple of years and live in a small apartment. We didn’t have the need or room for additional plates, cookware, towels, etc. It did not take us long to realize that we could use our wedding as a fundraiser for my dad, to send him to the University of Michigan Aphasia Program.
We started the fundraiser in June 2013, with a goal of $25,000, and within a day we had more than $400 donated from family, friends and strangers. By our wedding date on November 2, 2013, we had more than $12,000 raised.
We could not believe all the support we received from friends, family and strangers, but we knew we still needed another $13,000 before my dad could go to the program.
With the help of friends at our CrossFit gyms, CrossFit on the Square in Marietta, Georgia, and CrossFit Team Offutt Tactical Fitness at Offutt Air Force Base, Nebraska, we put on a fundraiser workout and raised another $1,000, and throughout the holidays, we received another $5,000! But we still needed another $6,000 to hit our goal.
My close friends Lea Levine, Kelsey Daniels, Johanna Isler and Kristin Hansen all love my dad. Barry is like a second father to all of them, and they wanted to help out. They started brainstorming and came up with the idea of holding a benefit concert. We have a close family friend who plays in a blues band and we know that most everyone likes beer, so soon after our first meeting, Blues & Brews for Barry was born.
After six months of planning, we had the event planned out. We had a date, location, bands, raffle items and t-shirts. We had been spreading the word and expected about 100 people.
March 29, 2014, the day of the event arrived. We had already presold nearly 100 tickets before the doors opened, and before the start time of the event, we had more than 50 people lined up to buy tickets. Before we knew it, more than 300 people came out for the event, some of the people we did not even know. And by the end of the night, we raised more than $12,000! We had surpassed our goal!
Within that same time period, my mother submitted my dad’s application to the University of Michigan Aphasia Program and he was accepted! He would leave just a month after the Blues & Brews for Barry concert!
Recovery Trip to Ann Arbor, Michigan
We knew this would be a big step for my dad and family for many reasons. We knew this was the therapy he needed to get his voice back, but we knew it would not be easy. He still got tired easily and he had never spent more than a day or two away from his rehab center in Marietta since his stroke, but we knew he could handle it.
My parents packed the car and headed to Ann Arbor, Mich. on April 25, 2014, and on the following Monday, he started therapy.
My dad can make friends with anyone, so it wasn’t a surprise that he adapted to UMAP within the first couple of days.
UMAP was exactly what my dad needed to get his speech in the right gear. By the time he arrived at UMAP, he had three semesters of therapy at GSU under his belt, which was a great kick start to his recovery. UMAP was the next step and the right step.
Within in a few days, my mom said she saw great improvement. He was writing more, something he had hardly done since his stroke. He was asking more questions, he wanted to speak more, and he was even arguing with my mom.
For almost a month, he received about six hours a day of speech therapy, which targeted not just speaking, but also reading and writing.
During his last week at UMAP, my mom saw his biggest improvement. She called me and said that she told my dad that she was going to pick up dinner. Usually, my mom would just guess what my dad wanted to eat since he had a hard time communicating, but it was different this time. He asked her where she was going, what she was getting and told her what he wanted! This might seem small to some, but to my dad and his family this is a true sign of improvement and a step in the right direction to him regaining his independence.
Continuing after UMAP
In the weeks since his return home to Georgia, my dad has quickly returned to the social scene, going to parties, out to dinner and to the local blues bar to listen to friends play. When I hear of him going out to see people, I make sure to call those friends or family members that he saw and ask them what they thought of my dad since his return from UMAP. The feedback has been overwhelmingly positive. When I talked to my grandfather to ask him about the brunch he had with my dad, he responded, “I had a conversation with him!” Others are saying that he seems much more aware and wanting to engage. He is asking questions and responding to group questions.
I am sure we will continue to have good and bad days going forward with his progress, but I see that my dad is getting stronger everyday, and I have friends, family, strangers and wonderful therapists to thank for his progress. They are what keep him going.
Still Barry Costello
For me, my dad will never be who he was before, the strong man who was always out walking around the baseball park, coaching and watching games, the guy who would volunteer at all the school events, they guy who would come pick me up when my car broke down, or the dad who would make me French toast on Sunday mornings, but he is still here, and he still likes to have a good time.
Since his stroke, he has always been the same person on the inside. He has always known what people were saying and what was going on. The only difference was that his arm and leg didn’t work like they did before and he could not always get the words out, but thanks to UMAP and all the dedication from family, friends and therapists, that has changed. Speech therapy, especially UMAP, has given my dad a new outlook on life.
Over the last couple of years, my dad has encountered many changes and challenges, but he has learned to embrace his new life. Obviously, if he could, he would return to his life pre-stroke, but he has learned to work with what he’s got. With the help of his family, friends and therapists, my dad sets goals and works hard daily to regain his independence. Even with his disabilities, he continues to live his life to the fullest. As my mom will tell you, “He still doesn’t like missing a party.”