This morning, Facebook sent me a memory from June 2010, five months before Corey’s accident. I posted a family motto my parents used to recite to us: The difficult is easy; the impossible just takes a little longer. At that time, I was just past the first year of my divorce, as well as starting to feel the groove of my job change. Little did I know then, the meaning of that motto would define more than both of those major life changes?
It is human nature to look outside ourselves and gauge the successes and/or struggles of our friends and family to our current challenges. That imaginary barometer needle fuels a myriad of emotions for each individual. What can follow are comparison questions, doubts, and insecurities. During that time it happened for me in the business world and then continued for us as we navigated the new world of TBI recovery.
Do the answers we choose motivate or do they derail our future directions?
When we were in the acute care rehab, our nurses Brian and Nick used to say their motto was ‘wheel them in, walk them out’. Along with watching every nuance Corey displayed, I would look at each survivor newly admitted for the ‘level’ they presented. I felt great frustration when I saw a person wheel in, to what appeared to be worse shape than Corey, and watch them speak, eat and walk out; yet, there she was; healing at her pace, not close to my hopes or expectations.
Fast forward to February 2019, 8yrs 4months post injury. I was concerned about Corey’s left foot. She had increased tone and appeared to begin foot drop. I am no longer physically capable of stretching her foot in an upward motion. My body is aging, too. Her foot felt as if it were locking again. I spoke about this concern with her orthopedic surgeon and to her pain management doctor. They both agreed and suggested we use the house harness to support Corey, take off her brace for short periods and stand flat footed to let gravity stretch her. If her ankle appeared secure and did not pronate, continue the weight shift exercises from side to side. This could be a viable home approach to correct what I could not do for her. Based on the above recommendations, we also consulted with a new physiatrist hoping he would advocate for another admission for out-patient Physical therapy to help assist us and prevent Corey’s foot from regressing further. Unfortunately, we were told that the acute-care setting is not a long term solution for Corey. That statistically, most survivors plateau after 3 years and there’s limited progress past that point. Shocked by this ‘40 something’ physicians perspective, it once again gave me the emotional step back to reframe OUR progress. Rationally, I understand the insurance game. Corey costs the insurance company too much money. The Acute Care rehabs fight for their reimbursement to allow treatment coverage. The rehab is not to blame; Insurance companies are a ‘for profit’ not ‘for patient’ industry and hospitals need to get reimbursed for their services. What the insurance companies do not understand is a person with Corey’s level of injury needs 18hrs of rehab at the acute care level from Day 1 through the rest of their life. The brain needs that continuity of exercise. However, the national average of coverage is 21 – 100 days of inpatient care and typically 90 – 150 days outpatient care before they are discharged. In order to qualify for addition services approved by insurance, Corey’s physical condition must worsen in order for her re-admission to ‘get better’. Outside the acute-care walls Neuro-trained therapists that can help prevent and advance a survivors progress does not exist for many families. It is up to the survivor and their families to learn, create, invent, and research the resources needed to help regain their quality of life outside those walls. This is not an easy task.
As I write this, it is 3,180 days since Corey’s accident. I read today’s Facebook memory and it still rings true. The first week of April we began to wean the brace from Corey’s left foot. The brace she wears has a flexible hinge at the ankle that should allow the foot to bend giving her greater flexible range; however, brain injury often conflicts with reasoning. Corey (subconsciously) thinks of her brace as a cast. That thought over-rides the reality that she can walk heel to toe as the brace stabilizes the foot and ankle. Instead, with each step, she lifts a stiff knee and swings her foot out to the left (we call it the Franken-leg). An additional challenge comes with the fact that Corey has not been without the brace in more than 8 years, so her foot and leg have muscle atrophy. When she lifts her foot it shakes just prior to her next step (we call that the dead-fish foot). Corey’s toes don’t flex due to tone and her foot and leg turn a purple-blue when she sits too long. Hard to believe this ‘doesn’t qualify’ for long term care right?
April progressed. We alternated brace days with her appointments and outings giving her the ability to safely manage her long term walking. On the days we were home, we maintained her exercise on the recumbent bike, added a foot bike, increased her E-stim and stretching with weights and started to walk short distances with NO brace (don’t worry, we are still holding her gait belt). By the end of May, Corey was walking full-time with NO brace. Her long-distance walking has increased to 200’. Her orthopedic surgeon witnessed her stepping straighter (only a slight outward swing), and she has less jiggle with her foot as she steps forward. Her blood flow to her foot is significantly lessened in color (red and marbled) because, as he explained; now, when the heart pushes the blood to her foot, her muscles have gained strength to push it back up and circulate the flow. As if this is not enough good news, this week we witnessed her toes starting to flinch and bend, and she’s flickered her foot in an upward motion flexing her ankle! She is nowhere near ready to walk independently; in fact weaning the brace has set her back especially with long distance walking; however, she has advanced in redeveloping muscle mass and strength.
“Statistically a person will plateau after 3yrs”
“She doesn’t qualify for long-term rehab”
8 years, 8 months…3,180 days and counting…THE IMPOSSIBLE JUST TAKES A LITTLE LONGER…xoxo