Be Armed with Information

I started the recovery road with what still feels like sketchy guidance given by a young doctor appearing to have only basic textbook knowledge and little, if any, real world experience treating someone with a severe brain injury.  My neurologist didn’t inspire a lot of confidence either; it felt like I was just the next 20 minute appointment in his already long day.  The result was both doctors told me this was a “wait and see” process – basically I was told, “Let’s see what heals on its own over the first two years, then we can look at your options.”

My challenges with memory and aphasia were severe enough that I was referred to a cognitive therapist early on, an incredibly valuable experience for me and undoubtedly a key factor in being able to keep my job.  It wasn’t until I hit the two-year mark that I was finally referred to the local brain injury clinic.  After a thorough evaluation at the clinic, I was referred to occupational, physical, and speech therapists.  This is where I finally started to learn the real facts about my condition, because the therapists interviewed me, put me through comprehensive testing, and then actually talked with me about what was happening and the most likely reasons.  My therapists not only provided treatment, they gave me new tools and helped me better understand both what I was experiencing and the things I could contribute to help achieve the best recovery possible.

First, a word of thanks for Google, BBC and Synapse…

My therapists would always document what we talked about, so I didn’t, for obvious reasons, need to rely on my memory.  I’d frequently have to use Google to look things up, and one of the terms that I searched for after a therapy session led me to a great article about brain injury on BBC.com.  Looking up things I read in that article led me to Synapse.org.au, where I found an amazing collection of resources all about brain injury symptoms, considerations, treatments, and more.

This was how the journey of a lifetime began, one that has made a tremendous difference both in my day‑to‑day quality of life and in my hope for the future. 

Don’t Believe Everything You Read

One of the key things we must always remember about the internet, is that there are three types of information available… I group them into these categories: 1) Good Information, 2) Questionable Information, and 3) Misinformation.  There are sites you can trust, generally speaking, but even then, it’s wise to confirm what you learn from more than one reliable source.

Informational Resources

One of my favorite places to go for information has long been a resource found on the US National Library of Medicine site: the National Center for Biotechnology Information (https://www.ncbi.nlm.nih.gov/). And as a note, while I trust most of what I find there, I’m never opposed to looking for another reliable resource for additional validation.

Searches on the NCBI site will present two key areas of interest: the Bookshelf shows a library of publications (some public domain, some not) and the PubMed area (https://www.ncbi.nlm.nih.gov/pubmed/), (where I spend most of my time) shows a list of published papers on the specified topic.  For example, I recently saw a post on Twitter about the benefits of hyperbaric oxygen therapy for brain injury survivors.  Doing a search here today for “TBI hyperbaric” produces a list of 107 published papers representing scientific studies relating to TBI and hyperbaric therapies.  Searching for “TBI supplements” produces a list of 51 studies.  I don’t read very well since my injury and such studies can include a lot of terminology beyond my ken, but an attentive scan or two often leads to valuable information worth researching further.

Beyond this, many organizations that work in brain injury related fields will have valuable information on their sites and links to other resources.  There are organizations around the world that offer resources, services and more.  Always remember that although we have access to resources across the globe using the internet, our focus points should be identifying local resources and learning what questions we should be asking.

My search for global resources to share here is far from comprehensive and is limited to those easy to find for a native English speaker, but this list identifies a few good resources to start with:

USA

Brain Injury Association of America [https://www.biausa.org/]
A state by state search tool for local resources is found here: https://www.biausa.org/find-bia/

Canada

Brain Injury Canada [https://www.braininjurycanada.ca/]
A provincial search tool for local resources is found here: [https://www.braininjurycanada.ca/abi-associations/]

Mexico

Federación Española de Daño Cerebral [https://fedace.org/]

Great Britain

Headway: The Brain Injury Association [https://www.headway.org.uk/]
Headway has many locations across Great Britain, and locations in Ireland and Scotland…
Ireland [https://headway.ie/]
Scotland [https://www.headway.org.uk/supporting-you/in-your-area/groups-and-branches/scotland/]

Australia

Synapse: Australia’s Brain Injury Organisation [https://synapse.org.au/]

New Zealand

Brain Injury New Zealand [https://www.brain-injury.nz/]

Europe

This site has a number of links to sites in several European countries:

European Brain Injury Society [http://www.ebissociety.org/links.html]

In closing…

Being part of this modern “information age” means that we have easier access to information than any generation before us has even known.  Always remember, however, that self-diagnosis just isn’t a good idea – but being able to ask better questions can make a tremendous difference for us.  Being aware of available therapies, treatments, supplements, etc. can empower us to ask better questions of our medical providers.