TBI Advocacy Group

I wrote the story of my son's 1st- yr post TBI. in this lens squidoo.com/TBIspeaksToTheSenate in preparation for my testimony to our State Senate, one year after my then 21-yr old son suffered a massive Traumatic Brain Injury, on the evening of his last Final for Fall Quarter 1988, at the University of Washington, in Seattle.

The state Head Injury Foundation recruited me to testify at Senate Healthcare Committee Hearings. The Committee was considering revoking the repeal of the Law that required motorcycle riders to wear helmets. My son was a college student who had always worn a helmet in the rural region where we made our home, and he never rode on a highway, but because of the dearth of parking spaces near his university apartment, he talked his dad into escorting him on his 300 mile drive to Seattle. Since no law mandated the wearing of helmets, and he only drove around the campus vicinity, I guess he decided it was safe to shelve his helmet. I can only guess, at that, since he was aware that I was adamant about the subject.

He and a friend decided to loosen up for guitar-playing/singing session at one of their university apartments. Parking was always a scramble, and so they hopped his little cycle, which could always find a parking space (where his little Dodge Dart could use up half a tankful of gas, just cruising around trying to find a place to park; he ditched the car and opted for the economical cycle).

On their way back from the six block drive to the supermarket, they were hit by a car heading through the intersection on 45th. I pray that my son never felt the hard landing on the pavement. He cracked his occipital bone, and his brain bounced back and forth inside his skull - front-to-back, and back-to-front, repeatedly.

Hard bony skull masses along the temporal lobes have a shearing effect on the tethers that normally stabilize the brain inside the skull, and it is let loose to ricochet to smithereens.

I crossed an iced covered mountain pass, and arrived two hours later, and stayed at my son's bedside for weeks, no more than a block away for three and a half weeks. I asked the neurosurgeon what he would do, when I was faced with "cut out some skull within thirty minutes, or die." And when the doc said "I'd operate." I agreed, ill prepared for an on-the-spot advocacy education, that continues, to this day.

Little did I know that even if my son woke out of what turned out to be a three-month long coma, it would get to the point where police came to my home with guns drawn.

Soon after the first year post-TBI our local TBI Association sent family members to me, for coaching on how to achieve their goals for services for their brain-injured family members.

Honestly, for the first several years I was so immersed in climbing the mountains of service-access that it wasn't clear to me just how I achieved our goals.

Even when I was recruited to present a family advocacy training workshop at the brain injury rehabilitation program where my son was making admirable progress, it took concerted study of my files to get a firm grasp on the "Hows" of successful advocacy. I created CogentAdvocate to serve novice TBI Advocates. CogentAdvocate.com

I've abbreviated the main CogentAdvocate.com website right here on Squidoo. The lens is illustrated by my TBI artwork. Take a walk with me. CogentAdvocate.com

Learn what I did to access inpatient rehab for my son, and the strategies I used to keep him there past discharge dates. It shocked me to have the rehab doctor directors tell me that because my son was so badly injured, he couldn't make speedy enough progress, to merit rehab.

What they meant, of course, was that the insurance company would not continue to pay, if my son could not meet their predetermined rate-of-progress. This sparked intense advocacy: because he needed rehab services so badly, he was denied them?!?

Sometimes, after a TBI, the world doesn't make any more sense. Everything a patient sees may look upside down or out of order, colorless, and pungent! Loving care and advocacy can make a big difference in bringing sense to the patient.

Lensmaster anticloud writes lovingly of her husband's plight, and of how his mother fought for him in what she calls "the first half of his amazing recovery - prior to their meeting.

Without advocates most persons who sustain a Traumatic Brain Injury are left to the whims of the health insurance industry. Doctors are limited by the claims' managers' decisions to-pay or not-to-pay! This young man's mother dedicated herself to her son's welfare at a time when he really needed it, and he flourished.

Here's her story:my-husband-has-a-traumatic-brain-injury

julyris_p_and_d shares the early story of her mom's Traumatic Brain Injury in 2007. She was on a cycle when a truck ran into her, leaving her in a coma.

The lensmaster was 26 at the time of her mother's accident and injury. Suddenly she was thrust into the position of parent to her parent.

Who is really prepared for that? After my son's TBI his younger brother became his caregiver for several months - a huge challenge.

My son was also on a cycle in the accident, and he, too, was helmetless, because the state law requiring the wearing of helmets had been repealed the year before the injury. julyris_p_and_d created a sharing place for families of TBI. Here it is:relativescopingwithTBI

photograph from flickr.com via wickipedia commons.

huntnpeck's wife left the house to go to her job, and life for the family was turned on it's head! Brain injury left nothing untouched, for this husband, who writes their story.

Successful advocacy resulted in exceptional care at a time of threatened stoppage. His wife's treatment took place in Texas, where my son's best TBI program also was hosted.

Read the story at tbi

photograph by Rehman T, Ali R, Tawil I, Yonas H at en.wikipedia.org

netventurer writes the story of his wife's injury, with concern and compassion.

Most victims of Traumatic Brain Injury do without post-acute rehabilitation, unfortunately. And most do not have a powerful advocate to fight the necessary battles for services and other needs. Life after receiving a TBI presents it's own set of varying challenges. Story at braininjuryguide

illustration from http://www.alzheimers.org

kingkurt2001 presents his philosophy, and his story about how his life is always affected by the fact that when he was only a child he suffered a TBI.

The story exemplifies a common struggle for those with brain injuries, the ever present need to pick oneself up, day after day.

kingkurt2001 demonstrates the value in retaining a sense of humor. head-injury-bio.com

image Credit:
"Smiling can imply a sense of humour and a state of amusement, as in this painting of Falstaff by Eduard von Grützner." from wikipedia commons in the public domain. en.wikipedia.org