Saturday, 4 April 2015


Regardless of fault, your loved one has a mountain to climb.
Brain injury is one of the most difficult injury to recover from.
Blame after the fact has no bearing on recovery except to retard it.
Blame can be on so may levels.
I should not have drank and drove, I should not have taken that illicit drug, if only I had not gone to the bar and gotten into the fight,
If I had only worn my helmet, and the list goes on.
In some cases like myself, my mom blamed herself for having me against doctor's wishes as all her pregnancies were risky.

By harbouring resentment will only manifest in a negative outcome.
It is like a disease that spreads to healthy members which only causes at the least an anger and break down of the family unit.
One need not bury the feelings but one must learn to work through them and to deal with them early on through therapy.
A parent who has an adult child is forced back into caregiver for example can be overwhelming.
A parent of a child struck down before they had a chance to blossom.
Yes blame is a powerful enemy.
However blame turned into a positive can be a strong asset.  It can become motivation and determination to overcome.
Is the glass half empty or half full.
The more positive the input the greater the recovery the healthier the family unit becomes.
Never deny your feelings.  
Air them and move forward.
Although this picture is about cancer it easily works for everyone.

Another link to explore

This link designed for autism shows hope for other learning disabilities.
Since Autism is a brain disorder I feel it may help with ataxia or aphasia.
Please let me know if it works so I may share with others.

How does one recover?

How does one recover?

In my last blog I asked but didn't fully answer the question that the title of this blog asks.

It's been 40 years of recovery since aneurysms changed my life forever.

At 14 they started leaking and at 18, they ruptured and required 7.5 hours of surgery to remove the AVM
(ArterioVenous Malformation) over my temporal region of my brain.

In those 40 plus years, I have found that unfortunately, for the majority, help is few and far between.
If you are rich and can afford therapists, neuropsychologists, neurologists and surgeons then the world is your oyster.
If you are not, then there is immediate help.
If you are severely compromised, then rehab will continue for as long as there is medical coverage or insurance.
If you are high functioning then the walls come tumbling down.
Welcome to Humpty Dumpty and all the Kings horses.
You are not only in a fairy tale but a nightmare where you may never awake from.

You need support.  Both you and your caregiver.
You need legal advice before you sign off from any insurance claim.
You need advocacy to guide you through this frightening place from which you find yourself in.
You need respite as a caregiver so that you don't burn out.

In all my years, I have learned more from one place than from any book, any therapist any neuropsychologist I have seen.
In fact I have probably taught them more than they are willing to admit.
The best answers and best insights I gleaned into understanding myself came from brain injury support groups.  
I learned so much from my local group I became President.
Online groups also are very therapeutic.
We know what you are about to go through and may suggest a therapy or a resource that helps.
Most rewarding is the acceptance and friendships that develop.  
You too may find, quite by accident, that you inspire or help with your knowledge.

So, my first, my only true recommendation is through those who have walked the walk and speak your language, the language of the brain injured and that of the caregiver.  
Join one today.

Here's one I recommend.

TBI Survivor Support/My Friends Who Know

Search for this private group in Facebook

You won't regret it.

Friday, 3 April 2015

Brain Injury Forever

Not all wounds are visible.

One could also say "Not all disabilities are visible."

Brain injury is like no other.
Brain injury is like no other brain injury.
Brain injury is like everyone.
It is unique and unto its own.
The treatment therefore needs to be tailor made.

Brain injury recovery may measure in years and not in weeks, or months.

Recovery may be a lifelong struggle.

How does one recover?

I have mentioned in previous blogs the difference between loss of limb, sight, hearing or mobility to that of brain injury.  
The glaring difference is when you have cognition, you can adjust to the physical limitations from other forms of disability.
When cognition and conversely when memory loss occurs the struggle back becomes more than learning to accept your new physical limitations.
More severe cases of brain injury include loss of mobility, loss of communication and even loss of comprehension of the spoken word.

At first glance a person with a shaved head, question mark scars, swollen eyes indicate the trauma.
After six weeks the hair is now 1/2 inch long and within six months the hair needs it first trim.

On the outside, we look uninjured.  We may present with a vocabulary sufficient enough for you to think we are fit for duty.

Inside we still have a broken brain.

We forget.

Yes, so do you.

We forget on a scale that would scare you.

We do not know when normal forgetting ends and disability begins.

We forget every single second of every day.  You may not notice it because we never make it known.

I have mentioned in the past that I have misplaced 8 wallets.
I fail 99 percent of the time to shut off the stove element.
You may not notice it, but I do.  Each day after preparing my lunch I sit down and begin consuming and a checklist starts running in my mind.  When I get to the question, "Did I turn off the stove?", my answer is "No".  I then arise to confirm my suspicions and then 9 out of 10 time turn it off.
It is the small things.  The keys to the car and going back in to get them.
The appointment, my phone, my smokes, my jacket and the list goes on.
I went to buy a toothbrush because I left mine in the camp where I was assigned.  I got to the store and bought Easter eggs for my grandsons and a loaf of bread and returned home without the brush.
Try doing this for 40 years and counting and try to acknowledge how trivial this is.
We all forget?  
You don't even register on our scale of forgetting.
Often we are accused of using our forgetting as an excuse to get out of work.
I want to be thought of as
A) Lazy?
B) incompetent?
C) unreliable?
D) stupid?
E) malingerer?

Now that's a great resume to be proud of.  It's my mission in life to forget names including my wife's, my grandchildren's, my friend's and the list goes on.

Now couple that simple function of forgetting and add anger and frustration brought on by memory loss.

But don't end there, let's add obsessing to the recipe and follow that up with a dash of Aphasia, an inability to find words, and now you begin to see how complex this disability is.
PTSD ensues this and of course there is the possible paralysis, vision impairment or speech issue before one begins to appreciate the full scope of brain injury.

Now, friends disappear, relatives give up and still the brain injured with a rewired brain are left to cope by themselves.

Please understand that we are not faking it.  
We have no control on when we remember one minute and not the other.  

A brain injury is forever.

It is never one simple issue but rather multiple complex issues affecting many functions of the brain.

Please stand by, regardless of our failures, our anger outbursts, our slow recovery rate. 
We need all the support you can give us.