Excellent Resource Pages

In researching information for this resource section I have found that there are some phenomenal sites that have already aggregated links and information.  As that I am big on not reinventing the wheel I am going to list and link to them along with a short description of what they offer.  I have divided the sites into group by the main thing the site has to offer a person with a MTBI.  Many of the sites could be listed under a multiple categories.

This is by no means a complete list.  I have tried to select the best.  However, the more I searched the more sites I found.  I still have two folders full of bookmarks that I have not added in here yet.  If I find any in the folders that are steller I will add them.  But this list is pretty comprehensive as is. 

The comment section is open.  Please feel free to add your own favorites in the comment section and I will then add them to the master list.

Sites with:   Links, Publications, & Book Lists

The Brain Injury Survivor's Guide is the home of a great site and also the name of the book I have found to be most helpful so far.  Both the book and the site are written and maintained by a couple, Beth & Larry Jameson.  This is absolutely one of the best sites out there which is why it is first on this list.  The site is chock full of information, useful downloads, extremely helpful tips; in fact there is too much helpful information contained on that site to list here.  On a "sister-site" Brain Injury Online.com they have a fairly thorough resource list.

"The Brain Injury Association of America (BIAA) is the leading national organization serving and representing individuals, families and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI)." The BIAA has a network of more than 40 chartered state affiliates, as well as hundreds of local chapters and support groups across the country which they list in the BIAA Directory  They also have an excellent book list and provide short descriptions and reviews of the books.  However though I found some new books that sound excellent, I was surprised that most of the books that I have found helpful were not on their list.

TBI.org is the home of The Perspectives Network (TPN) whose motto is Survive with Pride.  They have an extensive booklist, a searchable archive of articles that appeared in a magazine they published.  I am saying that in past tense because I could find no place where they currently offered the magazine.  Their list of organizations is good but there are some better ones.  www.tbi.org

The Brain Injury Directory is an incredible labor of love by "A human being who happened to have an acquired brain injury (abi) long ago."  It is a very comprehensive cross-disciplinary directory intended to provide some resources for the many issues that people with brain injuries are confronting in their day-to-day lives.

Survivor Support  Sites There are more sites than are listed here. There are many for family members and caretakers too. A websearch and/or the links in the section above will take you there.

BrainInjuryChat.org purpose is to provide people who are living with brain injury a safe place to meet for support and information.  They host at least 6 chat rooms.  Support chatroom - serious talk, not for chit chat. Carechat chatroom - Caregivers only please. Survivor chatroom - Survivors only please. Faith (non-denominational) chatroom - for discussion of faith as it relates to tbi. Toybox chatroom - for fun with colours and graphics. The Main Room - tbichat - which is fairly chit-chatty.

TBI Home says they are "a peer support website for people living with brain injury, their families and friends to support each other by sharing their experiences."  I am told that the site is being updated and is current but the page that claims to list the updates has not been updated since January of 2008; over a year ago.  Still there's some good information here.  www.tbihome.org

Betsy's Support Site for Traumatic Brain Injury Recovery and Rehabilitation Information, to help and support for family members, caregivers, survivors, loved ones and all affected by TBI.  This is just one families story but it is very well done.

Research & Scientific Sites There is so much research going on regarding the brain that it is mind boggling.  Signing up for newsletters and other information can quickly become overwhelming.  I have therefore listed only a few of my very favorites here.

The DANA Foundation gets top billing here!  The Dana Alliance for Brain Initiatives is a nonprofit organization of more than 280 neuroscientists, formed to help provide information about the personal and public benefits of brain research.  This site is a treasure trove of all things brain.  They have a great newsletter and other publications which are free.  Normally they have a good search engine on their site but it seems to be malfunctioning at this moment of writing.

I have written about the Brain Trauma Foundation in relation to the work of Jamshid Ghajar MD, PhD.  He is the foundation's president.  The Brain Trauma Foundation works nationally with EMS, physicians, trauma centers and hospitals to create standardized care for traumatic brain injury survivors and provide education.   This is a good site to go to for statistics. The site is extremely well maintained and up to date.  The Resource page is mainly for medical practitioners though there are some great links to current research.

National Institute of Neurological Disorders and Stroke (NINDS) is a division of the National Institutes of Health.  As evidenced in the title, it covers a broad range of Neurologic Disorders.  TBI is one of them.  The NINDS TBI page has some useful information including links to publications and current research studies.  The main NINDS site has the most exhaustive list of "Partner Organizations" out there.  Its a little overwhelming but you are probably sure to find whatever you are looking for.

I have to put the TBI Modeling System on here because I am doing some volunteer work with the University of Washington branch.  The TBI Modeling System is the first prospective, longitudinal multi-center study ever conducted which examines the course of recovery and outcomes following the delivery of a coordinated system of acute neurotrauma and inpatient care. The program is for much more severe neurotrauma than MTBI but the sites have good information and resources on them.  The study is being carried out at 16 centers nationwide.

Brain Games to Improve Cognitive Functions I am just beginning to research this area.  See SmartBrains.com for reviews.

SharpBrains is (according to their own website) the leading market research and advisory services firm covering the growing cognitive fitness market. This is a useful site because Cognitive Fitness is a mushrooming market.  SharpBrains.com, the firm's educational blog and website, is a member of Scientific American Partner Network.

Brain.com also known as CognitiveLabs.com appears to be a great place for products on brain health and fitness, as well as articles on recent research, dietary and other means to mental improvements.

Brain Train is a software company that has products for home use as well as ones geared toward professionals in a rehabilitation setting.  Their products focus on retraining cognitive abilities in people with brain injury or other cognitive deficits. They also have a good list of current research in cognitive rehabilitation.

Brain Fitness was one of the first cognitive rehab products out there.  It is the one my doctor recommended but he was quick to point out that the competition is also very good.  Brain Fitness has just been around the longest.

Online Stores with Assistive Devices for MBTI survivors This is not a list of assistive technology for more severe TBIs

www.bindependent.com is a sort of cool site.  It is an online store of items to help people be independent.  Of special use to people with a TBI is the page B-Organized page.  Pill holders with programable timers.  No excuse to miss your medication again . . . that is, as long as you remember to take the holder and timer along with you!  Please note, I am not endorsing any of the items on the site nor have I purchased from them (yet).

This is a place holder. More to come.

Miscellaneous Other Sites The following list is sites that are good but semi specific to a certain TBI population; usually more severe than MTBI.  I am listing them here in case they are helpful to others.  Some of them are very good sites in their own respect but service a more narrow clientele than the ones above.

The Center for NeuroSkills (CNS) is a well respected method of treatment for severe TBIs.  They have facilities in Texas and California.  The website is quite good and worth poking around but most of the information is a little beyond the needs of the majority of people with a MTBI. Be sure to check out the CNS store.  It has a plethora of interesting items from educational CDs to graphics and animations all available for purchase.  www.neuroskills.com/ In spite of its generic sounding name www.headinjuryassoc.org actually appears to be a collection of facilities and also support services for people in the Ottawa, Ontario region of  Canada. The Association for Positive Behavior Support is an international organization dedicated to the advancement of positive behavior support. APBS has a section on their site specific to the use of PBS for people with Brain Injuries.  I did not explore the links on this site but it looks like there are case study reports and links to research.  I am not sure how much this site applies to people with MTBI. I am always leery when a site is run by lawyers and sadly, www.traumaticbraininjury.com bore my trepidation out.  I am putting it into this list because they do have a fairly good list of resources.  Problem is, many of the links are broken.  I think they may even mean well because it looks like some work went into the site at some point.  However, I also have no doubt that the site was set up to funnel people into the sponsors legal practice.  www.braininjurysurvivors.org is a  website contains a thesis that was completed in 1996. I DID NOT delve into this site at all in part because the information is over 10 years old and so much has changed in the treatment of TBIs.  It might be useful to someone who is doing similar research.  The title of the thesis was Traumatic Brain Injury Rehabilitation and Compensation: Survivors' Perspectives. The research component of the thesis involved a year long study of people with traumatic brain injuries.