Possibility of Brain Injury Causing Kids to Shun Some Sports
Congresswoman Jan Schakowsky says that there are 300,000 sports-related TBIs annually in the US. Because many of our youth and their parents understand how much is at stake, even from mild concussions, some young players have walked away from a sport they love, rather than risk a life-altering injury. (Full story)
SPEAK OUT! – Francie Boothe
by
Donna O’Donnell Figurski
Francie Boothe
1. What is your name? (last name optional)
Francie Boothe
2. Where do you live? (city and/or state and/or country) Email? (optional)
North Attleboro, MA, USA francieb18@gmail.com
3. What caused your survivor’s TBI?
My 16-year-old son fell off the back of his cousin’s truck.
4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?
Nov. 27, 2013
My husband and I are the main caregivers. I was 41.
5. Were you caring for anyone else at that time? (e.g., children, parents, etc.)
My 14-year-old daughter
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
Yes, I was employed. No, I could not continue.
7. Did you have any help? If so, what kind and for how long?
I had help from my family.
8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)
Immediately
9. Was your survivor in a coma? If so, what did you do at that time?
Yes. I sat in the pediatric ICU praying with family and friends.
10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?
Francie Boothe’s 16 year old son.
All rehab was In-patient therapy at the Spaulding Rehab in Charlestown, MA. He had occupational, physical, and recreational therapies and speech-language pathology.
11. What problems or disabilities of your TBI survivor required your care, if any?
Washing, dressing, eating, etc.
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
It’s worse, but there are good days also.
13. What do you miss the most from pre-TBI life?
Normalcy. I miss my son’s being whole and healthy.
14. What do you enjoy most in post-TBI life?
I enjoy my son’s new outlook. His personality has changed – he’s much more personable.
15. What do you like least about TBI?
My son’s suffering and the family’s suffering
16. Has anything helped you to accept your survivor’s TBI?
Faith in God, prayer, family, and friends
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
No, not really, but it does get crazy sometimes.
18. Has your social life been altered or changed and, if so, how?
Yes, I don’t have much of a social life, but I don’t care.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I want my son to lead a normal life without infection or complications.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Francie Boothe and her son sharing special time.
Have faith. Be strong. Be patient. Take one day at a time. There will be good days and bad days.
Thank you, Francie, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
If you would like to be a part of this project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.
(Photo compliments of Francie.)
Disclaimer: The views or opinions in this post are solely that of the interviewee.
(Reposted from my other blog – Donna O’Donnell Figurski’s Blog Jan. 13, 2011)
It’s the mix of heavenly sweetness followed quickly by harsh reality. It’s pleasure mixed with pain. It’s happiness and regret. That’s bittersweet!
Bittersweet is today!
Today – six years ago on January 13, 2005, with no invitation, bittersweet moved in with David and me. He was an uninvited guest.
He ripped David’s and my lives apart. – Bitter!
We won’t let bittersweet beat us. We are building our lives up again – together. – Sweet!
David suffered a traumatic brain injury. He endured an operation that lasted about 5 to 6 hours. He wasn’t supposed to live – Bitter!
He lived! – Sweet!
David endured two more open-brain surgeries in less that two weeks and slept the sleep of coma for more than that. He wasn’t supposed to live. – Very Bitter!
After several weeks he began to respond to the world around him. He wiggled his toes and blinked his eyes. – Sweet!
For three months he was in hospitals learning to walk, learning to talk, learning to feed and dress himself again – learning to be a part of society. He desperately missed his job at Columbia University. He did not know when or if he would ever return. Bitter-very-bitter!
Columbia welcomed David back with an article about him in the newsletter of Columbia University called, In Vivo-CUMC At Large. Very Sweet!
And by conferrring upon him in 2006, at the Medical School Commencement, the Charles Bohmfalk Award for teaching in clinical years. Sweet! Sweet! Sweet!
David still has difficulty walking, talking, swallowing, and seeing. His right arm shakes erratically. He remains a prisoner of his body. Bitter-oh-so-bitter!
He wont let anything get him down. Life has become as normal as it can with all of these disabilities. He exercises to strengthen his body. He works to strengthen his mind. Improvements are being made – slowly, but they come. Sweet!
David has lived six years longer than any of his doctors expectations. Sweet! Oh-so-Sweet!
I have my best friend with me. Sweet! Sweet! Sweet!
Bittersweet move over. There is not enough room in our lives for you.
(Picture compliments of ME)
SPEAK OUT! – Carmen Kumm
by
Donna O’Donnell Figurski
Carmen with a T-shirt from the firefighters who helped to save her life
1. What is your name? (last name optional)
Carmen Kumm
2. Where do you live? (city and/or state and/or country) Email (optional)
Pittsville, WI, USA cjkumm87@gmail.com
3. When did you have your TBI? At what age?
July 19, 2010 Age 41
4. How did your TBI occur?
I was T-boned in a car accident.
5. When did you (or someone) first realize you had a problem?
When I was in the hospital
6. What kind of emergency treatment, if any, did you have? (e.g., surgery,
tracheotomy, G-peg)
I was airlifted to Marshfield hospital. I was treated for broken bones, but I’m not sure about surgery. I had a tracheotomy, and I was in a drug-induced coma.
7. Were you in a coma? If so, how long?
I was unable to respond or know who I was for about 2 ½ months.
8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)? How long were you in rehab?
I did In-patient and Out-patient therapy. I had occupational, physical, and speech therapies. I think it was about 8 months after my accident.
9. What problems or disabilities, if any, resulted from your TBI? (e.g., balance, perception, personality, etc.)
Memory, personality, temperament
10. How has your life changed? Is it better? Is it worse?
I worked so hard to be a high-school Spanish teacher again. That’s what I believe got me to how well I’m doing now. On May 2, 2013, I hit a student (sophomore boy) because he was “egging” me on, and he knew it. Then he reported me to the administration. Rather than let them fire me, I resigned after 25 years – 2 ½ years post-accident. I was so very angry afterwards. I believe up until about 6 months ago I was still angry, but now I love my life. There are days when I struggle, but, if I choose to take care of myself first, I get better.
11. What do you miss the most from your pre-TBI life?
My ability to do more than one thing at a time
12. What do you enjoy most in your post-TBI life?
I enjoy my family much more.
13. What do you like least about your TBI?
Fatigue
14. Has anything helped you to accept your TBI?
Honestly, God has done so much in my life as of late, or maybe I’m listening now.
15. Has your injury affected your home life and relationships and, if so, how?
My youngest daughter was 10 when my accident happened, and I wasn’t a very nice person for a long time. Our relationship struggled, but as of late it has improved. My eldest daughter had taken much of the responsibility for my three other kids, so I had to make sure she was reminded that she no longer needed to be the mom. That has greatly improved as of late – I don’t think I’ve had to tell her that in about 3 months. My youngest son was only 4 at the time, and we struggled too. I was so mean for a couple of years that he didn’t trust me, but that is returning too.
16. Has your social life been altered or changed and, if so, how?
No, I still have all the friends I had before and maybe more.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
My husband is my main caregiver. My parents even moved for about 4 months to be closer to me.
18. What are your future plans? What do you expect/hope to be doing ten years from now?
I am working part-time at a local post office. In 10 years I will be 55. I’m not sure what my plans are. I hope to have an almost empty nest.
19. What advice would you offer to other TBI survivors
Accept that you now have a new life to start and rejoice in it. Plan your days and plan for disaster and what you will do if it doesn’t go as planned. Have a back-up plan. Always assume it won’t go well so that you will know what to do if it doesn’t work.
20. Do you have any other comments that you would like to add?
Depression is something that I didn’t allow myself to acknowledge. Now I know it’s an issue for me, so I’m constantly working to keep it at bay. I try not to worry about things that I don’t have control over. I can’t waste my energy on that. It’s a commodity that needs to be saved. I know when I’m struggling too much that I need to stop and put myself first, and others will follow suit. For example, I’m too tired tonight, and my morning will be hard, so I’m taking care of myself tonight and my son is making his lunch for tomorrow.
Thank you, Carmen, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
Stem Cells, MS, and TBI – Strange Bedfellows
Multiple sclerosis (MS) is thought to cause weakness and paralysis by an immune reaction that attacks myelin, which forms a protective sheath around nerves. A surprising result was found after implanting human neural stem cells into the brains of mice with an MS-like disease. As expected, the human cells were rejected and disappeared within a week. But, the treated MS mice could now walk and continued to do so. Scientists believe that the human stem cells released a protein that signaled the mouse neurons to repair their myelin sheaths. This is great news for people with MS. But, what other signals were released? Might a released signal help damaged neurons of TBI survivors? The excitement over a signal means that you don’t have to implant cells. Once the signal is understood, it should be possible to design a therapeutic drug that does the same thing. (Full story and video)
Brain Anatomy and Function and TBI
An informative video explains what each part of the brain does and the relevance to TBI. Good graphics, short (8 min. 20 sec.), and easy to understand. (Video)
SPEAK OUT! Guest Blogger Jeff Sebell
TBI Disconnection
Of all the behaviors and peculiarities I have adopted since my brain injury, one of the most infuriating is how disconnected I can become. Although I have improved substantially over time and have learned how to deal with them better when they happen, I have moments when I am just not there.
When I say “not there,” what I mean is that I am “not present” to what is going on. The end result of “not being present” is that, instead of living my life, I watch as others participate in theirs, or I stay strangely passive as things happen around me. It is the damnedest thing to be right in the middle of what is happening and yet to be so far away mentally and emotionally. Right then, I have this urge to call the phone company and tell them I have a bad connection – could they send a repairman right away?
Ah, if it were only that easy.
When I am in one of those states of either disconnection or passivity, I become accepting of what others say or do, and I nod a lot and I shrug. Afterwards, with the dust still settling around me, as I begin to recover my wits and I reflect on what just happened, I always wish I could live that little piece of life over again – this time with the wherewithal to participate or to make my wishes known.
Finding myself in a state of disconnection from what is happening around me is something that happens all too often. I feel as though I am a lamp that has had its electric cord disconnected from the socket. Where I was once shining brightly on the various conversations, activities and people in the room, I have had my juice turned off, and I am stuck in the corner as an afterthought. People I had once been speaking with move me to another corner and complain about my not being plugged in.
Being disconnected can be something that happens to me in a social situation, or it could happen to me when I’m trying to do something or accomplish something on my own. I’ve gotten used to having it happen to me in social situations, and I have gotten pretty good at being able to avert or mitigate those instances, mostly by using my nonsensical sense of humor – perfect for that kind of situation.
What throws me off most is when I am trying to perform some task and I become disconnected from a situation. This usually happens when I get confused or overwhelmed, or when I’ve done something a bunch of times and now can’t remember how to do it. Nothing seems to make any sense, and I sit dumbfounded, unable to put two and two together. Having the ability to put two and two together is a skill that enables you to understand why things happen the way they do, how one thing can lead to another, etc., and it’s important when figuring out problems on your own. Adding two and two is so easy, and that’s what makes it so infuriating when I just can’t do it – sort of like word-find problems.
You would think that by the time I reached 58 years old, I would be able to put two and two together in my sleep, but I’m not always able to. What could be causing me to be so removed from what is going on? Is it something I can control, or is that the normal way my brain behaves now?
The answer for me seems to be, as with so many other TBI-related issues, preparation. I do my best to prepare for situations that I know I’m going to find myself in, and my preparations include taking a futurist’s approach to what I am about to do by planning ahead for different conversations, outcomes and eventualities.
It takes work to not be disconnected. In addition to preparation work and getting yourself ready for different eventualities, there is the work it takes to be present in situational disconnects – doing your best to stay in the present by controlling your thoughts and emotions. One kind of work we haven’t talked about is the work it takes after a disconnection happens. Let’s face it – they are going to happen, so how do you get a grip on yourself when things seem to be slipping from you?
Jeff Sebell
It is both easy and tempting to get on your own case and blame yourself or laugh at yourself for something you just did or didn’t do, but it is work to just accept it as reality and move on. The only way you’re going to learn not to do things is to do the following: first, accept the reality of where you are, and second, move forward with dignity and a clear head.
You can read more about Jeff on his blog at TBI Survivor: Support for TBISurvivors. You can follow him on Twitter or at @ttbisurvivor.
Thank you, Jeff.
Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.
SPEAK OUT! – Marleen Salo
by
Donna O’Donnell Figurski
Marleen Salo with her son, Marty Salo (TBI Survivor) and her husband, Al Salo.
1. What is your name? (last name optional)
Marleen Salo (Marty’s Mom)
2. Where do you live? (city and/or state and/or country) Email? (optional)
Lutz, Florida, USA marleensalogm@gmail.com
3. What caused your survivor’s TBI?
A car hit my son while he was crossing a street on his bicycle.
4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?
April 1982 36 years old
5. Were you caring for anyone else at that time? (e.g., children, parents, etc.)
No
6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?
I was employed as a Registered Nurse. I took several weeks off and then returned to work per advice from professional friends.
7. Did you have any help? If so, what kind and for how long?
My husband (Marty’s father) and I were co-caregivers. Physical therapists, school tutors, and friends assisted at intervals.
8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)
Upon Marty’s discharge from the hospital
9. Was your survivor in a coma? If so, what did you do at that time?
He was in a coma for 7 1/2 weeks. We stayed with him for long hours at the hospital. We went home to sleep, bathe, eat, etc.
We brought him home in semi-coma. We fed him, bathed him, and helped him do exercises in bed. He was bedridden for the first few weeks at home. He then used a wheelchair. Eventually he walked with assistance; then he walked unsupported. By fall, he was able to walk into classroom at a private school, with lots of school support.
10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?
Doctors told us to place him into a nursing home. His pediatrician advised us to set up a “hospital bed” at home and have the physical therapist make home visits. There was no In-patient rehab.
11. What problems or disabilities of your TBI survivor required your care, if any?
Feeding, bathing, moving from bed to chair, exercises to legs and feet
12. How has your life changed since you became a caregiver? Is it better? Is it worse?
It’s hard to answer. I learned that it is possible to come through such trauma stronger and more aware of the precious entity that is life. I learned how many people come around in support at times of crisis.
Worse, in that I worried more about every aspect of Marty’s life. Worse, when I saw him struggle in daily activities and when he had to prove himself over and over in every grade level of school. Heartaches, when he could not achieve a goal.
13. What do you miss the most from pre-TBI life?
I miss the freedom from guilt that I could prevent such pain. I miss Marty’s carefree independence with other kids his age.
14. What do you enjoy most in post-TBI life?
I like that all of us place more value in day-to-day experiences. We also feel a closeness for having survived as a family.
15. What do you like least about TBI?
Marty’s physical deficits – driving, etc.
16. Has anything helped you to accept your survivor’s TBI?
Internet TBI support sources
Friends’ acceptance
17. Has your survivor’s injury affected your home life and relationships and, if so, how?
We have been a cohesive family. Some marriages dissolve with such stress, but our lives came together.
18. Has your social life been altered or changed and, if so, how?
Vacations were put on hold for a few years. Now our social life is good.
19. What are your plans? What do you expect/hope to be doing ten years from now?
I hope to spend summers in the mountains and winters in Florida. I want to continue to be in a close relationship with Marty and his wife, Fran.
20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?
Don’t give up.
Appreciate the small increments of change.
Marty Salo (TBI Survivor) with his wife, Fran
Find external support, such as on the Internet or from other families.
Know there is something in you that does not exist until you pass through pain and suffering. It is then you understand.
Thank you, Marleen, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.
SPEAK OUT! – Marty Salo
by
Donna O’Donnell Figurski
1. What is your name? (last name optional)
Marty Salo
2. Where do you live? (city and/or state and/or country) Email (optional)
Tampa, FL, USA msalo@verizon.net
3. When did you have your TBI? At what age?
April 7, 1982 Age 11
4. How did your TBI occur?
Bike/motor vehicle accident
5. When did you (or someone) first realize you had a problem?
Immediately. I was medivacked to Children’s Hospital of the Kings Daughters in Norfolk, Virginia
6. What kind of emergency treatment, if any, did you have? (e.g., surgery,
tracheotomy, G-peg)
I had an intracranial pressure monitor and I assume some other tubes. The divot in my head is still visible after all these years when the hair is cut very short.
7. Were you in a coma? If so, how long?
I was officially in a coma for something like 53 days. I was brought home on Day 49, but I had been in pediatric ICU for 14 days.
8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)? How long were you in rehab?
I did most of the recovery at home. I was tutored by a 5th grade teacher over summer, and I progressed through Catholic primary school. I had some speech therapy at public school. I had help from vocational rehabilitation to get training leading to a job.
9. What problems or disabilities, if any, resulted from your TBI? (e.g., balance, perception, personality, etc.)
Fortunately, I had been brilliant as a child, and much of the brilliance continued. There were memory problems, I guess, as well as balance problems and the need to re-master skills from traumatic amnesia. I read more online. I’ve been excited about the Internet from my days in college – even before then. I had been excited about my Apple 2c with a 300-baud modem, which allowed me to communicate to others through asynchronous communications.
10. How has your life changed? Is it better? Is it worse?
I adapted. I chose easier courses, changed majors at the university, graduated with an undergraduate degree in Religious Studies, and continued to get my Master’s Degree in Library and Information Science. There are still situations where I can get overwhelmed, I suppose.
11. What do you miss the most from your pre-TBI life?
I don’t really have much memory of my pre-TBI life. I have only vague, fleeting memories of childhood.
12. What do you enjoy most in your post-TBI life?
I like having fun. I like going to EPCOT and Disney World. I enjoy being around other happy people.
13. What do you like least about your TBI?
I’ve been different from others, but I didn’t really understanding how different from others I was. I just knew that things were not as easy for me. I have adapted by not driving, after an accident at age 19 or so.
14. Has anything helped you to accept your TBI?
My father is in AA. He exposed me to the Serenity Prayer: “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
15. Has your injury affected your home life and relationships and, if so, how?
From childhood, there is no comparison. Fortunately, I met a woman who would later become my wife. She has been very beneficial to me and my experiences.
16. Has your social life been altered or changed and, if so, how?
Again, childhood and adulthood are largely incomparable, but I’d venture to say that as a financially minded individual, I don’t spend a lot of money on alcohol or cigarettes. We have a pretty happy life, even if not much time is spent out drinking with fellas, or whatever. Other usual socialization patterns exist.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
My mother, then my wife. My wife is not so much of a caregiver as a partner, but she does drive.
18. What are your future plans? What do you expect/hope to be doing ten years from now?
It’d be very nice if I were somehow able to get something going where I work at the VA Hospital – doing something to help others with computers and expanding awareness. But, I’m happy enough continuing to work with computers, getting them ready for issuance to providers.
19. What advice would you offer to other TBI survivors
Keep on progressing. Life gets better if you allow it to get better. Most people probably want to see you succeed. Some bosses might not have patience, but your progress is more important. Do not compare yourself to peers who are doing more than you are. Compare yourself to where you have been. Appreciate what you have overcome to get where you are.
20. Do you have any other comments that you would like to add?
So many things. Realize that you are not alone. Realize that others have had similar journeys. Realize that others probably would like to see you succeed. Your success builds collective good will, and helps people feel better. http://martysalo.wordpress.com/ is a website I maintain. I have some TBI-related stuff there as well.
Thank you, Marty, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
SPEAK OUT! Guest Blogger Joel Goldstein
What Veterans Need………….and Deserve
Christmas 2001 my wife and I were plunged into a parent’s worst nightmare – a car accident resulting in our teenager’s traumatic brain injury. After a month long coma, he gradually emerged with severe and disabling cognitive, emotional and physical deficits.
Eight months of grueling hospital therapies and the school district agrees with the hospital – Bart is not ready to return to class and would be better served by placement in an institution. We railed against warehousing our 17-year-old son in a convalescent home and fought time and again to win Bart a chance to struggle, heal and progress.
We were determined to keep the bar up, set with difficult, but attainable, goals, and then raise the bar again and again. Who knows for sure how far anybody can go? It takes a little faith. These officials were not mean-spirited so much as driven by economics and statistical models of probable outcomes, without taking into account the character of the boy or his family.
We began exploring nonconventional therapies, cobbling together an unofficial “medical board” of trusted physicians. “Members” didn’t know each other or that they served on a “board.” If we found a promising therapy, we’d ask each of them whether it might do any harm. Some exciting approaches failed this Hippocratic test. Eventually we tried several therapies. Though harmless, some proved useless too. Others, including hyperbaric oxygen (HBOT), craniosachral therapy (CST), neurofeedback and high doses of Omega-3 fish oils, were remarkably successful, gradually transforming Bart’s life prospects. Successes were anecdotal, but a neuropsych exam several years after the accident reported that the examiner had hardly ever seen such improvement in someone so severely injured.
Today, with high school and even a semester of college under his belt, and a couple of years of cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own apartment. How different the outcome had we heeded the advice of well-meaning busy bureaucrats. Brain injury is far and away the leading cause of death and disability in young people. It leaves roughly 2% of the population permanently disabled, yet remains a stubbornly invisible epidemic. With the controversy surrounding concussions in sports and TBI, the signature injury of this generation of wounded warriors, that may be finally changing.
TBI will remain a tragic legacy of wars in Iraq and Afghanistan for a lifetime. According to the Woodruff Family Foundation Remind.org, there are 320,000 TBI survivors among combat veterans. Today the elements of the VA and DOD are experimenting with HBOT for severely wounded warriors. Sheer weight of numbers presents a unique opportunity to improve outcomes for survivors, military and civilian.
Like other nonconventional therapies that helped Bart, HBOT is relatively safe, inexpensive, easy to deploy and scalable. For the cost of a couple of F-16 fighters, one could outfit and staff 300 TBI treatment centers in existing VA and DOD facilities around the country. Technicians and therapists can be trained to deliver HBOT in months, not years; medics, corpsman, LPNs, and EMTs are all suitable candidates. As an alternative to setting up centers in VA facilities, one might issue vouchers directly to veterans’ families. Private clinics should spring up to meet the demand.
After wounded veterans have been treated, centers could migrate to the civilian sector, helping the wider fellowship of TBI survivors, most of whom have no access to these treatments. Thousands might leave nursing homes, cut back on their meds and live more fulfilling lives. Nothing we could do for so little could ease the suffering of so many.
Scientific proof is still the gold standard in medicine, but in its absence what risk is there in trying alternative therapies with well-established safety records? (Divers have safely used HBOT to prevent the “bends” for 200 years.) Of course, nothing is 100% safe and effective, not even aspirin or acetaminophen. In much of Europe, HBOT is already standard treatment for TBI. The obstacles to adoption here seem to be more bureaucratic – doctors, hospitals, the FDA and insurers have yet to sort out reimbursement protocols.
For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Best practices of conventional medicine only take us so far, often ending at the nursing home door or heavily medicated at home, facing long empty hours and overwhelming family resources. Survivors are already more susceptible to a number of conditions, including Alzheimer’s, Parkinson’s, suicide and subsequent TBIs. To do nothing – to ignore safe alternative therapies – is to make a decision fraught with risk. Faced with this existential dilemma, we chose to try for a better outcome. Military families of wounded heroes, who have already sacrificed so much, deserve no less.
Joel Goldstein, author of No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury, Potomac Books, has written about TBI for Exceptional Parent, Brainline.org, Adoption Today, and Military Special Needs Network. To learn more or to contact Joel: www.tbibook.com.
Thank you, Joel.
Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.
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