TBI Resources
July 13, 2009 12:25 PM   Subscribe

Looking of resources to help a friend recover from a Traumatic Brain Injury. Where can I get started?

A very close friend of mine was in a bicycle accident 2 weeks ago. His health situation is stabilizing slowly, but, it looks like his recovery is going to be a long one. I'm looking for resources about his injury and ways to help him recover. Thanks in advance.
posted by trbrts to Health & Fitness (5 answers total) 4 users marked this as a favorite
I wish I had Coping with Mild Traumatic Brain Injury with my bike accident (took on a van doing 50mph when I was a kid). Knowing what was wrong was a big first step, though I suspect mild is an understatement for your friend. Hopefully this'll help anyway...

I don't know how close you are to the family and such, but finding a neuro who is up to date with neuroplasticity and central sensitization would be good. There's a ton of things happening right now (self link). The brain isn't nearly as static as we thought it was. Scott Adam's story was helpful in understanding how. It's like the road system. Sometimes highways get shutdown but other roads are available. The drivers just need some help finding them.

Probably the biggest lesson is patience. There will be good days and bad ones. Be observant, open, and understanding. Some of the funniest moments with my wife have been due to my dysnomia. On the way out in winter, wandering around the house looking for my "muffins"... I meant mittens - both start with m, have a double letter in the middle, and end in a sound like ens. Or asking if she had any gubble bum (bubble gum). It is a lot worse when I am very tired, but they've taught me a lot too. Verbs and nouns are never mixed... they must be in separate categories in the brain.

The other problems aren't quite as funny. I live in fear of my complaint during the day time of people's headlights being too bright. It's a sign of an impending earth shattering migraine. Same thing with the heat waves. Imitrex nasal spray is great for those. Two hour nap and I'm back to normal. My nose and tongue are also extra sensitive, which sounds cool but there's a lot of bad smells and tastes out there. There's other stuff, all in that book above. The whole experience is what we make out of it, whether we wanted it or not.
posted by jwells at 1:00 PM on July 13, 2009 [1 favorite]

I'm so sorry to hear this. TBI can be devastating and is life-changing for most people. While in university, I spent 3 summers working as an office assistant at the Ontario Brain Injury Association . I realize it's in Canada and you're located in the US, but perhaps it will be a start. I know we helped people from around the world, and at the time (11-12 years ago), OBIA was one of the larger brain injury associations in North America.

The website is not the greatest, but they have a wealth of information on hand at the office. Call them; they'll send you an information packet and will likely be able to point you to other resources in the US.
posted by yawper at 1:07 PM on July 13, 2009

Well, it's obvious, but the Traumatic Brain Injury Resource Center has a wealth of resources, including a brain injury FAQ and support group links. The website isn't well organised but there is a lot there.

Also the Brain Injury Assoc. of America for general resources and the Brain Injury Recovery Network, with separate sections for crisis phase and long-term phase.

Care Pages' Brain Injury section has lots of stories of those who've had (and have) brain injuries and their families and caregivers.

I found some of the message boards and forums online very helpful when I was looking for info when a friend's friend had a brain injury 2 yrs ago. I wish you and your friend the best.
posted by mmw at 1:08 PM on July 13, 2009

Check out BrainLine.org too.
posted by lullaby at 1:43 PM on July 13, 2009

I CANNOT stress this enough- pleaseplease PLEASE visit www.iahp.org . It is an absolutely amazing institution, completely different than anything you will see- it's been around for almost 50 years, i recovered from an early childhood brain injury with their help and then was raised in their school for well children, my brother was raised in the well children program, my adult cousin was in a car accident years ago that left her profoundly brain injured, doctors said she'd never function again and after their program she is functioning nearly perfectly again, i have seen many of the amazing things they do with children an adults my entire life, taken their "what to do about your brain injured child course", which is truly amazing- they see people from literally all over the world. take it first hand that you will truly miss out if you don't give The Institutes a serious look. Please contact me if you have ANY questions at all, i can give you the contact info of other people that have personal experience too.
posted by assasinatdbeauty at 7:10 PM on July 13, 2009

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