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Heads Up! CTE Registry

Lets create a voice for our loved ones who are victims of CTE. Please sign the guest book and provide any additional information. Your email will only be provided to our web site and will not be made public or sold/given to any third-parties. Thank you!

There are currently 31 messages.
There have been 862 visits since 2012-06-07
This page was last accessed on 2021-10-20


Message Number: 31 - Wed, Oct 20, 2021 14:24:11
[IP = 76.234.138.207] -
Posted From: United States - us.gif
Name:  Bleaka
Location:  Garfield Hts Ohio
Athlete's year of birth:  1991
Undergoing any treatment for CTE:  No
How can we best help you:  Need medical help for son
Comments:

My son is now 30 years old, he did play football in high school for some years. He never had any type of signs or symptoms of CTE until about 5 years ago. It started with headaches, then its progressed to him self medicating with beer. Which the alcohol isn't helping, he went to ER dr and said his brain shows "black space" in the brain where there shouldn't be. This past year or so he doesn't sleep and is severely suffering from paranoia. He now lives couple hours away and is a loving father of 3. Please direct me in how to get help for him. Psychiatrist prescribed seroquel but he won't take it because it just makes him sleep most the day.


Message Number: 30 - Wednesday, February 13, 2019 16:38:41 EST
[IP = 173.239.72.94] -
Posted From: United States - us.gif
Name:  Gil de la Roza
Location:  San francisco ay Area
Athlete's year of birth:  1952
Undergoing any treatment for CTE:  No
How can we best help you:  Help find appropriate care in S.F. Bay area.
Comments:

I have had many concussions with full loss of consciousness throughout my life, and three in the last six years that I have not recovered from. Originally diagnosed by a brain surgeon with TBI, I am reasonably certain that I have CTE. I am now with Kaiser Medical, and they are awful. They are adding "insult to injury." Like going to a priest for solace and being molested. Although I realize that little can be medically done, I need to find some care or support group that is not detrimental and counter productive to my health. So far Kaiser covers themselves by basically marginally acknowledging TBI, denying CTE, and claiming "psychological problems," and then referring me to self-serving "medical bureaucrat" incompetent practitioners.


Message Number: 29 - Thursday, December 20, 2018 20:16:48 EST
[IP = 174.201.13.126] -
Posted From: United States - us.gif
Name:  Iris Castellani
Location:  Peckville,PA
Athlete's year of birth:  1973
Undergoing any treatment for CTE:  Trying to find help
How can we best help you:  Need help from doctors
Comments:

Hello,
I am a 45 year old woman, who is suffering from CTE. I know that I have this from my husband and my dear friend, who is a care giver & also a fitness trainer,
Yoga instructor, health guru,etc. they have both been researching this condition because of my headaches, memory loss, anger, everything pointing to CTE.
I am so grateful to them for their help. The doctors have told me I am depressed & it’s all in my head...I have waited for hours in Phila. to be told that they never even heard of CTE! And this was at University of Pennsylvania! Where they supposedly invested close to a billion dollars in their Neurology department! What is going on with our health care?? Why can’t I receive the care I/we deserve? Because I know it is not just me. There are thousands of people being misdiagognosed out there. I need help. The headaches & memory loss is unbearable. I need someone to tell me they can help me. Not that it is all in my head...
Thank you for your time....Iris


Message Number: 28 - Saturday, July 28, 2018 16:34:46 EST
[IP = 198.60.5.250] -
Posted From: United States - us.gif
Name:  HLMD
Location:  Utah
Athlete's year of birth:  84
Undergoing any treatment for CTE:  Private IWP
How can we best help you:  Keep Educating
Comments:

These are only a few things that may help others;

o Financial Management/Planning
o Psychologist/ Mental Health (Treatment, Coping Skills and Understanding)
o Cognitive Therapy
o Red Light Therapy
o Oxygen Therapy
o Environmental Therapy
o Sports Massage Therapist
o Physical Therapy
o Art Therapy
o Occupational Therapy
o Music or Sound Therapy
o Speech Therapy
o Decompression Therapy
o Complementary Treatments
o Alternative Treatments
o Nutritional Meal Prep
o Cleaning Staff (Clean Environment Necessary)
o Electronics with Helpful Apps (Keeps Track of Progress, Medical, Emotional, Physical, Etc…)
 Reminders of Tasks
 Reminders of Medication and Self Evaluation
 Reminders of Physical Activities with video guidance
 Reminders of Appointments
o Vocational Rehabilitation
o Monthly Travel Reimbursement for medical Treatments of any kind.
o Legal Team to Explain things accordingly


I also suggest looking into EHT


Message Number: 27 - Thursday, October 19, 2017 13:41:00 EST
[IP = 108.76.134.53] -
Posted From: United States - us.gif
Name:  William Glover
Location:  Flowood, MS 39232
Athlete's year of birth:  1950
Undergoing any treatment for CTE:  no
How can we best help you:  Point out treatments and/or find me a Dr. in my area who knows how to treat CTE.
Comments:

I have CTE but can find no physician willing to treat my problem other than to treat symptons (e.g., anxiety, depression, tremors.




Message Number: 26 - Saturday, September 9, 2017 11:30:18 EST
[IP = 69.146.185.243] -
Posted From: United States - us.gif
Name:  Kris
Location:  Colorado
Athlete's year of birth:  1965
Undergoing any treatment for CTE:  no
How can we best help you:  support group for spouses
Comments:

My, probably soon to be ex-husband, has suffered numerous concussions from street fights as a kid, martial arts- including UFC style, and car accidents. He is in denial about the possibility that his memory loss, erratic and irrational thoughts, and verbally/ psychologically abusive behavior, could be related to CTE. It is frustrating and scary for me, because I would stay by his side if he would admit to this possibility and seek help. But, he won't admit to the problem, and says I'm imagining things!


Message Number: 25 - Sunday, March 19, 2017 18:40:25 EST
[IP = 174.233.7.156] -
Posted From: United States - us.gif
Name:  Cindy Bartholomew
Location:  Wapakoneta Ohio
Athlete's year of birth:  Not an athlete 1986
Undergoing any treatment for CTE:  Yes
How can we best help you:  Sharing this story
Comments:

I am writing in behalf of my son .He is an inmate in an Ohio prison .I had noticed a change in his behavior when he would write me and call .
Sometimes he would be very depressed and and then very unpredictable.
I know he,has,had,past drug use but I knew there was something more going on.
He,finally told me that he was having excruciating
Headaches and forgeting simple things such as putting he shoes on before breakfast and phone numbers he has dialed for years.
The pain became unbearable and he was " self medicating " with suboxon strips that is smuggled in the prison .
He,finally went to the Dr. Who then sent him to the hospital for an MRI .his head also swelled up and his eyes were swollen shut from the pressure which finally got him to the Dr. .spinal fluid was leaking into his,brain and,the Dr. Said it was tau
protein .
He,ask my son if he,had,ever had,severe trauma to his brain he told him I'm in prison so yes I've had blows to my head ,after he,had,a chance to think it over he remembers a time he was


Message Number: 24 - Monday, January 23, 2017 20:15:04 EST
[IP = 142.196.74.184] -
Posted From: United States - us.gif
Name:  Howard King
Location:  lake mary fl
Athlete's year of birth:  1962
Undergoing any treatment for CTE:  seeing many drs that have been no help.
How can we best help you:  LAKE MARY
Comments:

DIAGNOSED 2016, AFTER TESTING WITH A NEURO PSYCHOLOGIST.
ITS A BATTLE IN YOUR OWN MIND.


Message Number: 23 - Private Message

Message Number: 22 - Monday, October 3, 2016 22:12:36 EST
[IP = 50.134.242.254] -
Posted From: United States - us.gif
Name:  Kathleen Gunn
Location:  Colorado
Undergoing any treatment for CTE:  Using medical cannabis
How can we best help you:  Share information/coping skills
Comments:

I am a 56 year old woman who was repeatedly beaten by my father continuously for over 10 years, his favorite thing was to smash my head against a cinderblock wall. I was then in a bicycle accident in '97 when I received a severe concussion. Since then I have been diagnosed with severe depression, temporal lobe epilepsy, atrophy of my frontal lobes. , and chronic pain. I have been committed twice and had 17 sessions of electroconvulsive therapy. Now I am having rage issues, constant thoughts of death and such feelings of sadness and guilt that I am not who I used to be. I need some information I can trust, and maybe someone who can help my husband/caregiver. Thank you.