Hi Joel, this is a wonderful, capsulated story of your family’s journey! Spoken with intelligence and honesty, this powerful recount has made my reading your book, more urgent. I have it here with me and plan to move it to “next on the list.” Simply put, I find it amazing how you and Dayle have dealt with this horrible accident. You all are to be congratulated!
My best to your family, and especially to Bart!
Thanks so much for the kind words Ann. I’ll pass along your greetings to Bart and Dayle.
My sons injury was one year ago. I am doing fundraising to help pay expenses and since his father passed away. I am really interested in HBOT . My sons injury was Right frontal and temporal with partial removal. How far out was your son when you tried it and how long or how many treatments.?
We began HBOT almost a year after Bart’s accident. He began to show marked recovery almost immediately. Logistic, financial and other constraints kept the pace down, so it took two and a half years to finish three courses of therapy, for a total of 120 dives. We’ve known many people who started a decade after injury, and continue it twenty years and more after, with some improvement even that late. Never too late to start. All the best of luck – don’t lose heart, it’s along haul, but there is hope for recovery. Your brother in TBI, Joel
Joel, My BF starts HBOT on Monday morning. We are excited about it. Darrel was hit by a fleeing car from the police as a pedestrian. He was hit at 65 mile per hour. He sustained several injuries; crushed left ribcage, left femor, left tibea, left forarm, ruptured spleen and punctured lung in addition to the TBI. Darrel was hit Oct 2010 and is still not walking. Although I have great faith he will walk again. I can’t let myself belive otherwise. It’s been a hard road, but finally found a faucility that will treat TBI with HBOT.
Can you give us any advise as to what therapies would be a benefit while doing HBOT?
WE did craniosachral therapy along with HBOT. Bart took 120 dives over a two year – plus period. He still takes CS therpay to this day. We are looking hard at LENS neurofeedback, but not quite ready to try it – though it seems that it does no harm.
All the best of luck and regards to Darrel. If you like, my wife Dayle will add him to our prayer list.
Your brother in TBI,
I was fortunate to read a review of Mr. Goldstein’s book a few months ago. That day I ordered a copy of “No Stone Unturned” which I received two days later. The day it arrived I stayed up all night reading his expose on Traumatic Brain Injuries, and his family’s story.
I cried throughout the book learning of Bart’s injury and his steps to recovery. I was reliving my own sons accident that occurred six months ago that led to a severe TBI.
Me Goldstein opened my mind to other therapeutic modalities, specifically Hyperbaric Oxygen Therapy (HBOT). My son started HBOT a month ago, and it has made a significant improvement in his cognitive function.
On behalf of myself and my family,
Thank you for you kind words and support. Bluntly put, getting the word out to the wider fellowship of TBI about alternative therapies is our way of trying to make sense of what has happened to our family. It’s food for the soul. Survivors can make progress indefinately…Bart still takes craniosachral therapy with small cumulative gains in cognition and impulse control. Anger is hardly an issue any more. He’s even got apart-time job! It’s a life-long condition, so we’re still searching. Very seriously trying to vet LENS Neurofeedback. And so it goes.
Your brother in TBI,
PS Too bad this program doesn’t have spellcheck.
How easy it is to warehouse someone instead of going on a journey with the RBI person towards an alternative lifestyle.
As word spreads that there really is hope for recovery throguh alternatives, things will change slowly but eventually. Best of luck,
Thank you for your story! I co-facilitate a support group called “Moving A Head” that is a two fold group for TBI survivors and their familyi members/loved ones. The TBI survivors group is facilitated by a co-worker of mine who has TBI, and she teaches life skills. I facilitate the family/loved ones group and we foxus on acceptance and positive healing. I”m not sure if you have heard of a computer software program called “Brain Train”, but where I work, we offer it as a support to TBI survivors. It is a series of activities and games that are designed to help with memory, recall and concentration, and it seems to be successful in many of our clients.
Thank you for bringing awareness to TBI! It is an often missed diagnosis, and early action after the incident can greatly improve chances of some recovery, depending on the injury of course. Thank you again for your story!
Thank you for your great work with what we’ve come to calll “the wider fellowship of TBI.” Sounds like you’ve put together a great team. Will look into “Brain Train” Most of the best ideas for therapies for Bart came from people like you, sharing your experience and wisdom. We’re currently getting ready to try neurofeedback – originally suggested to us by the father of a survivor. And so it goes. Please extend my warm wishes to your “Moving A Head” members. God bless,
Your brother in TBI
This is a powerful story. Thank you Joel, you have inspired me to maintain the same diligence in helping my mother who suffered a stroke one and a half years ago. My mom received HBOT earlier this year and is now getting ready to start a series of sensory learning sessions. I will most definitely order your book.
Thank you again, very much for inspiring me.
Thanks for the kind words of support Rose. If you’re working with Dr. Joe, you’re working with the best. Remember, your mom can make good progress in her recovery for many years – even conventional wisdom is beginning to embrace the fact of neural plasticity. Wish you and your mom all the best in the New Year. God bless.
Dear Joel, Thank you so much for your advocacy, and information re: TBI. I would like to add another class of people to your list…when you say “no one is safe”; my TBI came about not by a car accident, or a fall down the stairs, or any such accident. I suffered TBI due to three brain surgeries to remove an intra-ventricular brain tumor. I continue to improve, but am now…3 years post op from my third brain surgery. I thank God every day for allowing me to stay here and take care of my twin 9 year old boys, and my husband…And my husband does most of the care taking of me and my boys. I have been helped so much by Internet connections with others who have been affected by TBI, as we are now living in Greece, and it is hard to get info any other way, or for me to have any other type of support group. And I thank God every day for a phenomenal brain surgeon, who managed to remove the brain tumor that I had. I continue to improve, I believe; and I pray that I will completely recover my pre-injury capabilities…I have improved a lot, but I don’t think I am yet my old self. Again, thank you for your advocacy, on behalf of all TBI survivors.
Small world – my wife and kids are Greek Orthodox. We’ve been to Greece many times – inlcluding for the Olympic Games. Our people are mostly from Corfu. Where in Greece do you live?
Glad you’re making progress. One can make significant recovery for a long, long time. Our son Bart is still making progress 11 years after his accident. We’re just about ready to start neruofeedback, which is supposed to help with memory, concept formation and impulse control. I hope some of the alternative therapies -especially HBOT, supplements, (especially Krill Oil), – are available over there. Many places in Europe, Germany being one have affordable HBOT, i.e. if you’re a candidate for it.
Thanks for your kind words of support – advocating for the wider fellowship of TBI is our mission in life. Best wishes for continued recovery. God bless you and your family.
Hi Joel, Thanks for your reply…sorry it took me so long to reply…I get overwhelmed, and have a lot on my plate…twin 9 year old boys, for two of the things on my plate…and then just running a household…and all that entails…We live on the island of Hydra…I’m encouraged to hear that your son is still making progress! I’m glad for him, and also happy that it means my healing and progress will likely continue…I would love to try some of those alternative therapies that you mentioned…unfortunately they are unavailable here…I will just have to continue doing all I can to “get better”…and perhaps, one day, if/when we move back to The States, I will be able to try some of those alternative therapies. Being a fellow TBI Advocate has become my secondary mission…as taking care of my home and my three guys is my primary mission! All God’s Blessings to you and your family–Trina Chambers-Bradlee
I am bringing home my 28 year old tbi son Wed. Jan. 22, 2014, we have a 14 year old daughter who has had to sit with me untold hours at ICU UF Shands in Jacksonville, Florida everyday from Sept. 27th just 9 days after her 14th birthday. His ins. went out and we received 2 weeks charity from BROOKS Rehab. We have got to get the word out this is hell for the families I have not even made it home yet and have faces some of the worst of everything from no help to disability, to family who do not see why you are taking him home….. (that being the worst) Families PLEASE join together this is a time when others need you. My daughter still wants her brother to come home even seeing the pain and hearing what others think she is stronger than me I sometimes think but she is fast to point out mama we don’t get rid of any of our family no matter how mad we get at them. Family take care of each other, God Bless.
Very sorry for your troubles. Your daughter, though very brave and admirable, will need support and counseling to get through this long hard journey. You may wish to explore alternative therapies, such as high-dose Omega-3 fish oils. No guarantees, of course. Take a look at Dr. Michel Lewis, retired Army doc. Our son is currently following his regimen. Good luck and God bless.: http://www.brainhealtheducation.org/category/dr-lewis-blog/
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