today - the next step

I considered purchasing a tin sign, complete with instructions that I saw in a store the other day. There was a circle in the center and “Bang Head Here” written in bold lettering. Resistance personified.  Resistance? OMG! You don’t even know but we’ll get to that later…

The next step… Michael’s intelligence still fully intact (thank you God) scoring with an above average intelligence, which is awesome but unfortunately also leads to a large measure of his frustration and honestly adds to much confusion with family and friends. Traumatic brain injury is so complicated. When your brain stores so much of the same pre-injury information how could he see the variety of cognitive impairments? How would he acknowledge the impaired memory ability, the compromised executive functioning, and decreased fine motor speed? The brain controls everything - and self assessment or the lack of, is a part of the injury.

But if we’re talking about Michael’s desire to move forward, his primary focus of going back to school, his determination to stop this “busy work” and get back to business then we should probably start at the beginning.  You see Michael is tired of this rehab stuff with me - TI ERD (that’s country for really tired).  He’s impatient, antsy, ready to move on.  He just doesn’t realize how far he’s come, or what a short distance we’ve traveled on this road to recovery. 

Remember the Glascow Coma Scale and the Rancho Los Amigos?
Glascow Coma Scale
Eye opening
4 = Spontaneously
3 = To voice
2 = To pain
1 = None

Verbal response
5 = Oriented
4 = Confused
3 = Inappropriate words
2 = Incomprehensible sounds
1 = None

Motor Response
6 = Follows commands
5 = Localizes pain
4 = Withdrawal to pain
3 = Abnormal flexion
2 = Abnormal extension
1 = None

The scale is also used to determine chances of recovery from head injury:
Mild (GCS 13-15)
Moderate (GCS 9-12)
Severe (GCS 3-8)

The Glasgow Coma Scale is the most widely used method of defining a patient’s level of consciousness and neurological status, or brain health. Michael was Code Blue on arrival with no movement, eye opening or verbal response to pain - his GCS of 3 was the lowest it could be without being dead.  He remained at a GCS of 3 for a month.  We believe that prayer and the grace of God were responsible for the miraculous healing and this second chance to live. 

During the year following his decision to get behind the wheel after drinking with friends, Michael moved his way up the GCS and on to the Rancho Los Amigos measure.  After 17 exhausting months of daily physical and cognitive training, I would love to say to Michael that he doesn’t have to work at this anymore, that I won’t push him to be everything that God intends him to be, but I can’t. A traumatic injury to the brain changes your life forever.  I won’t ever be able to say to my son “you’re healed”, “it’s done, you can relax now”.  BUT what I can say is with persistence and dedication every single day for the rest of his life, his brain can be re-trained, it can and will learn new pathways. But it will NEVER, EVER be the same.
 

Rancho Los Amigos

Today Michael probably sits between and Level VII and Level VIII

Rancho Los Amigos
Level VII
Automatic, Appropriate: Minimal Assistance for Daily Living Skills
* Consistently oriented to person and place, within highly familiar environments.      
* Moderate assistance for orientation to time.
* Able to attend to highly familiar tasks in a non-distraction environment for at least 30 minutes with minimal assist to complete tasks.
* Minimal supervision for new learning.
* Demonstrates carry over of new learning.
* Initiates and carries out steps to complete familiar personal and household routine but has shallow recall of what he/she has been doing.
* Able to monitor accuracy and completeness of each step in routine personal and household ADLs and modify plan with minimal assistance.
* Superficial awareness of his/her condition but unaware of specific impairments and disabilities and the limits they place on his/her ability to safely, accurately and completely carry out his/her household, community, work and leisure ADLs.
* Minimal supervision for safety in routine home and community activities.
* Unrealistic planning for the future.
* Unable to think about consequences of a decision or action.
* Overestimates abilities.
* Unaware of others’ needs and feelings.
* Oppositional/uncooperative.
* Unable to recognize inappropriate social interaction behavior.

Level VIII Purposeful, Appropriate: Stand-By Assistance
* Consistently oriented to person, place and time.
* Independently attends to and completes familiar tasks for 1 hour in distracting environments.
* Able to recall and integrate past and recent events.
* Uses assistive memory devices to recall daily schedule, “to do” lists and record critical information for later use with stand-by assistance.
* Initiates and carries out steps to complete familiar personal, household, community, work and leisure routines with stand-by assistance and can modify the plan when needed with minimal assistance.
* Requires no assistance once new tasks/activities are learned.
* Aware of and acknowledges impairments and disabilities when they interfere with task completion but requires stand-by assistance to take appropriate corrective action.
* Thinks about consequences of a decision or action with minimal assistance.
* Overestimates or underestimates abilities.
* Acknowledges others’ needs and feelings and responds appropriately with minimal assistance.
* Depressed.
* Irritable.
* Low frustration tolerance/easily angered.
* Argumentative.
* Self-centered.
* Uncharacteristically dependent/independent.
* Able to recognize and acknowledge inappropriate social interaction behavior while it is occurring and takes corrective action with minimal assistance.

The next step is to continue training, continue rebuilding, continue setting daily goals that lead to achieving weekly goals that build the new foundation for the future. Michael’s hopes and dreams for his future are not so different than they were pre-accident.  But the road he’ll travel to get there is profoundly different. He wants to be a leader, he wants to have a lifetime of learning which equates to getting back into the class room every now and then, he dreams of having someone by his side for love and companionship, he hopes to have children, he wants a life. He wants to be the driver of that life, not the passenger. 

The only limitation I see for Michael is him getting in the way of himself; concrete rigid thinking and stubborness.  And Michael knows that no matter how difficult it gets, I am there to push him through the concrete. He will not have an easy time of getting in the way of himself.  My prayer is that his and all of our hopes and dreams come true. This is what we’re doing to get there:

Michael is rebuilding with tools for life after and with a brain injury.  He meets with a neuro-pyschologist on a weekly basis and together they are developing plans for Michael to take control of his own recovery.  Does that mean he does it alone?  No, it means ultimately he is in control with the understanding that needing help, doesn’t mean you are helpless. Together they are building a base of strategies for success to compensate for cognitive losses that may or may not return.  A very positive hour that also allows Michael to share and to work through his frustrations and concerns with a professional. Someone outside the family who has the knowledge and experience to light the way when all we see is darkness.

Michael’s application has been accepted and he has been assigned a case manager through Brain Injury Services.  The first official meeting is this coming Tuesday (St. Patty’s Day) when we will learn about social activities, cognitive therapy and perhaps even vocational training.  We are looking forward to opening many more doors with BIS and hopeful that this will assist Michael in his journey forward. We welcome their assistance.

We greatly appreciate the recent order for physical therapy from Michael’s primary care physician.  She will work with him to improve his gait and to strengthen his prior dominant right side so it will take over for his now dominant left side. 

From my perspective, as his mother and TBI caregiver this is more than a bumpy ride. It is emotionally draining, physically exhausting and (remember the tin sign?) often times very frustrating. The bridge connecting my relevance to Michael’s rehabilitation efforts are increasingly lost with him. Each day he is less likely to actively participate in our cognitive exercises and some days refusing to participate altogether. It’s a very tough place to be emotionally even for him, but we’ll get through it.  I do respect the fact that Michael is exerting his independence again and I am thrilled that he has reached this level of recovery.  I understand that I am the constant reminder (the general he jokes) and sometimes he just doesn’t want to be reminded of what needs to be done. Sometimes he just want to be a normal twenty six year old guy, wanting to get on with his “normal” life. 

The next step… one foot in front of the other,  breathing in, breathing out, one step at a time, one day at a time.  We persist. 

LIVESTRONG Michael

xxoo