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Resources

Here are some resources I have found that I wished I had known about a few months ago.  I’ve organized them in a way that I think makes ‘sense’ and as ‘next logical steps’.  Please review them in a way that makes sense for you.  If you have any other suggestions or resources to share, please contact us.

1) LEARN ABOUT CONCUSSIONS AND TRAUMATIC BRAIN INJURY: see the HEADS UP! CTE Symptoms page for high level information and additional resources for self-study.  Also, here is a useful resource about concussions  from the Sports Concussion web site that provides an overview of the facts and myths about concussions.  NEW — I recently found a fantastic resource:  The TBI Survival Guide.

2) WHAT DO YOU DO NOW – GETTING HELP:

We have a list of resources we are interviewing and researching from holistic practitioners to Hyperbaric Oxygen Treatment (HBOT) Centers.  We are also compiling a list of practitioners/sports medical specialists who can help.  Please email or call us if you need a contact immediately.

3) ACCESS SUPPORT ORGANIZATIONS BRINGING AWARENESS TO CTE AND ATHLETICS: 

Sports Legacy Institute: The mission of the Sports Legacy Institute is to advance the study, treatment and prevention of the effects of brain trauma in athletes and other at-risk groups.

CTE Peer Support – An incredibly powerful blog site managed by Billy a former VA Tech football player:  “I had a coach that told me football would define the man I would be when I grew up.  He was right. My kid will never play football.”

PAST –   A non profit organization providing pro bono treatment options for former athletes:

“The P.A.S.T. Retired Athlete Medical Group that provides fully integrated medical care to retired athletes including NFL, NBA, NHL and MLB players announced today the launch of a comprehensive concussion treatment program that will be made available to all retired NFL players and other former athletes. The program is solely focused on the reduction of symptoms and restoration of quality of life.”

The Concussion Blog: Author Dustin Fink, a certified athletic trainer and former athlete provides great insights and resources geared toward supporting awareness about concussions, CTE and sports.

Dustin has a tremendous list of resources on his blog site including:

Hockey’s Future Discussion Board: This link is specific to CTE and Hockey.

Sport Concussions Organization: This is a blog site/journal of a 32 year old named Jesse – a former athlete who suffered from multiple concussions, the most recent this past February (2012) when one of his students accidentally hit him with a very large rock.  I will be sharing our site with him in the near future and want to spend much more time reading about his ‘Brain Camp’ and treatment protocol which includes Acupuncture and Cranio Sacral Therapy.  Based on what I have read so far, his journal is incredibly informative as he goes through various treatments and quite honestly it is devastating to read at times.

College Football Assistance Fund is a non profit that helps pay for medical bills resulting from football related injuries including neurological/brain injuries.

4) PREPARE YOURSELF AS A CTE SURVIVOR: Managing the guilt, the questions, the loss of your loved one whether you are experiencing a physical loss as the result of suicide, or even just the loss of the person you knew as your son, brother, daughter, sister, partner, spouse, parent, friend, patient is tough.

About Depression and Traumatic Brain Injury (TBI) – this is a great resource that provides some insight into what depression is as it relates to CTE/TBI.

The resources provided on this site was incredible helpful to me throughout my journey with my brother’s illness and death.

Survivors of Suicide was incredibly supportive and helpful for me especially during the first week following Sean’s death.  Even just their web site resources were invaluable in those wee hours of the night/morning when I couldn’t sleep or breathe.

5) BUILD YOUR OWN PERSONAL COMMUNITY OF SUPPORT: Please know that the most valuable resource has been my ‘tribe’ – I wasn’t a huge supporter of Facebook until March 25, 2012 when I found myself online (after all of the ‘visitors’ had left so my parents could finally get some sleep), chatting with friends of Sean, friends of mine – people I had never met before but were clients of Sean’s… when the tears wouldn’t stop and I thought my heart would just collapse, I was loved and supported by so many.

Surround yourself with ‘same minded’ individuals who ‘get’ what you are going through.  Let’s  support each other as we educate, comfort, and help our loved ones who are facing an uncertain future as victims of CTE.

6) SPREAD INFO AND AWARENESS: Please help us bring awareness about CTE.  What parents, coaches, physicians and others choose to do with the information is their decision, but at least we carried on the message that CTE is preventable and/or treatable… that our loved ones are not forgotten.

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