Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

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Shared – The Effect of Brain Injury on Caregivers

caregiver-stressThis is such an important topic — for caregivers, for survivors who rely on them, and for everyone else who interacts with caregivers under stress. It’s also important for employers to know. Or maybe I’m asking too much…?

On the third Thursday of every month, Laura Nordfelt inspires and uplifts caregivers in the Salt Lake Valley at the Intermountain Medical Center in Building 1. I met Laura and her husband, Greg at the 2013 Annual Brain Injury Conference. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the desire to return to a familiar way of life are very similar.Our hearts knitted together as they shared their story with me and their goals for helping those affected by brain injury.

At the last caregivers’ meeting on March 17, 2016, Laura shared some of her feelings on how brain injury effect’s the caregivers. I was unable to attend, but Laura emailed me the handout she’d put together. I was impressed with how accurately she’d expressed my own feelings. When I called to tell her how well she pinpointed my thoughts, she said many others at the meeting told her the same. With her permission, I share them with you.

Read what Laura says here: The Effect of Brain Injury on Caregivers … and pass it along – share with others

Most Americans can’t get Giffords’ therapy

But that may be changing…

Shot congresswoman’s staff urges HHS secretary to push accessibility

Wounded Rep. Gabrielle Giffords is benefiting from world-class treatment in Houston that most Americans don’t have access to, and her office knows it.

Her staff on Thursday called on Health and Human Services Secretary Kathleen Sebelius to change that, asking her to apply the Patient Protection and Affordable Care Act in a way that would make similar coverage to what Giffords receives more accessible.

Sebelius and her staff will be defining an “essential benefits” package that insurers participating in insurance exchanges will be required to provide by 2014.
Federal workers’ benefits

Giffords currently benefits from broad coverage through federal workers compensation because she was shot in the head Jan. 8 while meeting with constituents in Tucson, Ariz. The type of acute rehabilitation she receives – involving speech, occupational and physical rehab – costs about $8,000 a day, according to the Brain Injury Association of America. Post-acute rehabilitation can range in cost from $600 to $2,500 daily. The expenses leave the treatment options well out of reach for most patients whose insurers won’t pay for the services.

While some insurers cover traumatic brain injury treatment, their limits on some rehab services often leave patients stagnant at times when they could be rapidly recovering, advocates say.

The benefit to Giffords from those services have been clear in recent months, said Pia Carusone, the Arizona congresswoman’s chief of staff.

“I’ve got an up-close-and-personal understanding now of how speech and physical and occupational rehab really makes a difference, and I just can’t imagine a patient in a similar position who wouldn’t be able to receive the care because an insurance company would argue that it’s not needed,” Carusone said.

Read the full article here… >>

While it is discouraging to think about the state of how things are, still, it’s encouraging that people in positions to make a difference are actually speaking up.

If only these kinds of changes could happen without someone getting shot in the head.

You’re not alone

Here are almost all the search terms people used to find their way to this blog in the past week. As you can see, people want to know about this subject. If only I had more time to speak to all of these…

Search Views
broken brain brilliant mind 7
different traumatic brain injury assessments 3
rigidity in tbi 3
post concussive snydrome + always tired 2
difference tbi and mtbi 2
medial temporal lobe damage blog 2
autonomic nervous system and panic 2
pineal cyst, safe to play sports 2
vestibular finding balance 2
anxiety poor memory 2
why is broken mind more interesting 2
“brain injury dialogues” 2
long term tbi treatments 2
lopsided brain mri 2
physiology of anger 2
brain mapping and brain injury 2
tbi rage 2
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adults “brain injury” or tbi factors life productive fulfilling success 2
i want to kill myself after tbi 2
concussion feel stupid 1
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i love my therapist 1
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mental disorders resulting from brain damage 1
post-concussion sleeping too much 1
head injuries causing mental illness 1
dabrowski rage like meltdowns 1
can concussions make you stupid 1
exoskeleton mind impulse 1
why talking to people helps 1
people who had tbi and went onto success 1
trouble sleeping after head injury 1
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brain injury like earhquake 1
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danger dog 1
i don’t think my hands and brain function together as one i’m always making mistakes when i write does anyone else have this problem 1
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texto there is no shame in asking 1
i’m losing bad memories 1
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brain feels like a broken gear 1
brain injuries and aggressive personalities 1
mental illness from tbi 1
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http://www.neuroskills.com 1
what cop comedy has people punching each other in the face? 1
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anger when overtired 1
i’m in love with myntherapist 1
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ptsd and exercise 1
tactile defensiveness shoes 1
i don’t want to work hard play hard 1
aggression and the brain 1
brilliant mind mental 1
tbi pain 1
post-concussive syndrome stairs 1
i feel like i only use my right side of my brain 1
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common ways people get concussions 1
is exercise good for ptsd 1
how to help impulsiveness 1
high functioning tbi 1
concussion recovery in elderly 1
case presentation ppt rehabilitation 1
difference between head trauma and concussion 1
can you lose intelligence after concussion? 1
what is the difference between a concussion and brain injury 1
adults “brain injury” or tbi factors sense of self 1
tbi stats 1
brain injury and mental illness 1
i cant relax with a brain injury 1
does tbi effect women differently than men 1
autonomic somatic nervous system map 1
minor head injury neuropsychological screen 1
mri brain slices 1
extreme sports – the brain 1
how to achieve every day samadhi 1
ptsd is a physical condition 1
perguntas pertinentes sobre o filme mentes brilhantes 1
broken brains or evil minds neuroscience 1
malingerers neuro exam youtube 1
anosognosia physiological 1
tbi screening tool 1
interventions for tbi and ptsd 1
memory loss and good mood 1
memory loss and happiness 1
scholarships for tramatic briain injuries boys going to college? 1
difference between a mild concussion 1
polytrauma complicated 1
knitting brain injury 1
tbi anosognosia 1
i’m in love with my therapist 1
glass jaw injury 1
vagus nerve 1
tbi found by mental evaluation 1
tbi and psychosis 1
music therapy do it yourself 1
hyperesthesia in humans 1
concussion make you dumber 1
what are the differences between a serious concussion and a mild concussion? 1
can you stimulate the vagus nerve through conscious breathing 1
headbanging injury 1
brain exercises for concussion 1
i’m in love my therapist 1
brain tbi and mental illness 1
“job interview” did not go well 1
how did the interview go 1
difference between concussion and tbi 1
assistive technology mindfulness 1
“personality disorder” confabulation 1
post concussion syndrome rehab 1
why does baby’s development take so long after brain injury 1
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you tube vietnam war injury 1
tbi and mental illness 1
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i don’t feel like myself after head injury 1
interview george prigatano 1
special education for tbi significant post concussion syndrome 1
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traumatic brain injuries psychiatric diagnosis 1
tbi and assessment 1
you have a brilliant mind 2011 1
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aggression 1
can a concussion make you feel stupid afterwards 1
difference between head injury and concussion 1
uniqueness of the human brain + remapping ability 1
what is the difference between concussion and brain inury 1
traumatic brain injury benadryl 1
things to avoid when you’ve had a concussion 1
what is the difference between the effects of a mild concussionand a severe concussion? 1
what comes after a concussion 1
you are not stupid 1
paranoid about concussion 1
the physiology of anger 1
brian head damage 1
diagnosis confabulation 1
chronic pain with agitation 1
sit kids 1
stimulate your own vagus nerve 1
keep brain calm 1
did i do well in my job interview’ 1
cognition and emotion memory 1
alpha mind power helps ptsd 1
spider monkey pictures 1
how do you know if someone will over come brain injury? 1
smarter after concussion 1
i have tbi and now i see no future in my life to look forward to 1
not crazy brain injured 1
pips dementia 1
the brain as it experiences anger 1
assessments for tbi 1
biaa 1
tbi and behavior 1
tbi and long term effects 1
rigidity mind 1
what is the difference between a mild and a severe concussion 1
subconcussive 1
ptsd exercise 1
deep breathing vagus nerve neurogenesis 1
what is the difference between the terms concussion and mild head injury? 1
overcoming tbi 1
mindsight exercices 1
how long do headaches persist after hard bang back of head (with helmut) during skiing 1
do concussions make you dumber 1
difference between concussion and closed tbi 1
tbi co-occurring disorders 1
traumatic brain injury temporal lobe recovery 1

Brain Injury Radio – and more

Just found a great online radio show – Brian Injury Radio – that’s full of great references.

I’m listening to a segment about “Lost Space“- the things that get lost along the way in the course of dealing with TBI. Good stuff! Check it out!

And there’s an online support network at http://tbisurvivorsnetwork.ning.com/