Hi Everyone,
A new personal best…
693 Meters in 20 minutes = 6 Home Runs and/or 7 ½ Football Fields
Corey is looking stronger and more fluid in her super suit. The Lokomat moves Corey’s legs for her but it also has the ability to track the movement the patient initiates during a session. Today Natalie allowed Corey’s right leg a moment of independence to test her muscle strength to perpetuate the robotic motion. We were thrilled to see Corey’s upper thigh naturally “step into” the rhythmic pace of the treadmill. It was fascinating to watch as well.
This was a very good ending to a difficult start to the day. Corey woke up at 2am and hadn’t fallen back to a sound sleep for the rest of the evening. As you can imagine her fatigue wasn’t helpful when it was time to get ready to go to Bryn Mawr. She was NOT happy.
Truthfully, the anxiety is based off her short term memory loss. The good news is our behavior plan is working. As Corey begins her tirade, I sit quietly and patiently, unaffected by the tantrum. When she pauses, I calmly ask her “are you finished”? She will either say yes, or continue flailing for a few more minutes (this is a huge improvement. It used to be 30-45 minutes)
We then talk about what’s bothering her. When Corey is tense, I have a habit of trying to break her mood with some comedic statement to distract her from the anxiety. It has now grown into a family joke between Corey, Caitlin and me.
C – “Why are we going to Bryn Mawr”?
M – Are you Forgetful Fran?
Corey smiles…I repeat the rehearsed statement for traveling 3 days a week for therapy
C – “I don’t want to go”, “I’m fine”, “I don’t need to go anywhere”
M – Uh oh, did Forgetful Fran bring Nervous Nelly with her?
Corey starts to giggle…I ask her why she’s nervous
C – “I want to stay home”, “I know home”, “Do these people know I don’t know them”?!
Her mood escalates becoming more violent.
M – Oh boy, Nelly can’t handle the nerves so she brought Crazy Corrine?!
Corey starts to laugh.
Caitlin watched our exchange and became quite concerned; “Mom, I think you’re creating a multiple personality disorder that didn’t exist before”…
Corey and I both laugh out loud.
As silly as this process is, it’s working. Corey can relate to her alter ego’s and is finding a way to describe her anxiety.
We left the house on time. We had been driving for about 35 minutes when she became irate in the car, asking where we were going, kicking her foot until she could kick off her sneaker and throw it towards me as I drove. Fortunately, I was in an area I could pull over and park. I calmed her down and asked her what was wrong. “I’m Nelly” she said as she frowned. (It was a huge break through…she initiated the description of her emotion). We took out the IPad, previewed our therapy videos and when she was calm, we continued to Bryn Mawr. We were only 15 minutes late and she participated in both her sessions!
This is one of a thousand moments in a day that is typical for a family trying to “live with” TBI. I have been working with the Brain Injury Association of PA answering calls for the resource line. The resource line provides direction to State and Government agencies as well as services that can support the recovery issues for TBI.
It has been enlightening to speak with other families. Although we are in different boats, we’re all traveling the same body of water…some are bobbing, others just keeping their heads above water and most calling because they need a life ring; their voices quiver terrified that it’s not tethered to a rescue ship.
Although we are at the 2 year mark, we certainly are NOT at the helm of our ship; on the contrary, there are days we are still looking for a paddle! What has been helpful is our experimentation and attitude. (Please don’t misunderstand, just because we right proactively doesn’t mean there haven’t been plenty of pity parties you all weren’t invited to!)
Experimentation and Attitude are critical chapters in our survival guide. We look at our world and each detail of our daily life as an opportunity to convert it to a form of therapy that may help Corey. Why not take the risk, what’s the worst that could happen…it won’t work? There in lies the attitude…how will we know if we don’t try? How do we teach Corey to communicate her anxiety? Is it silly names that reflect emotions? Why not? Well guess what? It worked today; tomorrow we might have to try something else.
We are in uncharted waters. Some days it’s beautiful and calm, other days we are blindsided by a Tsunami. Even though we have to pay attention to the details of the course set for us, the direction of the sails must be flexible. It’s our only hope not to capsize.
Draw your strength and inspiration from the purpose you’ve chosen to follow and from the value you intend to create. Focus on the destination, and you’ll work your way there no matter what ~ Ralph Marston
…and that’s what our girl does every day. Home Run or Touch Down…Corey just keeps swimming, swimming, swimming…xoxo