Answers to Your Questions and Comments
May 14, 2009
My husband and I were reminded of your site while attending the TBI Support Group last night at TMH. It was wonderful to see familiar faces and meet a new couple surviving TBI. The stories and blogs offered confirmation of the trials and triumphs of Traumatic Brain Injury. My story is of a mid-life hit and run resulting, among other things, in my retirement with a disability in June 2009. Thank you for posting this information and keeping this resource current. Your efforts are most appreciated.
Hello Terry –
Thanks so much for writing. Feedback is important to us, and even more so to the community of TBI survivors. Please continue to access the website, as we try to update it frequently.
Thank you again, Terry. We’d love to hear more of your story.
Brain Injury always has trials and triumphs. No matter what, we with brain injury can always achieve different triumphs. It is always great to see, meet and talk with other individuals who have and are dealing with TBI. It was great hearing from you. Any time you have questions or comments regarding brain injury, we would love for you to discuss them on the TMH Brain Injury Advocacy website.
May 14, 2009
My son, Giles, was in a motorcycle accident last September. He was in the Neuro ICU at TMH for 36 days. He had a closed head injury and has recovered well enough for him to return to FSU as a summer school student. He will arrive this weekend. While his recovery has been wonderful, he needs a support group to meet with in Tallahassee. His is also looking for a therapist to continue his weekly visits with a psychologist. I am writing you to see if your advocacy group could help us. He says that he is particularly helped when he speaks to people who have been through a similar experience.
Thanks so much.
It is always great to hear about others who have already, and still are moving in a positive direction after a brain injury. If Giles would like to, he can e-mail us at any time at our blog.
As a student at FSU, I’ve been affiliated with several departments that have provided me assistance. If your son is experiencing any difficulties with school, and possibly needs assistance in class, he should go to the Student Disabilities Resource Center (SDRC). As a student, the FSU SDRC gave me extensive help with school over the past 2 years. Also, if he needs help with any difficulties he’s experiencing with communication or performance in class, the Speech & Hearing Clinic at FSU at the FSU Regional Rehab Center, may also provide more assistance. He can contact the FSU Speech & Hearing Clinic at (850) 644-2238. This department has also given me help, and facilitated me in being able to get my degree. Both the SDRC and the RRC at FSU have contact with a few student groups at FSU who have different disabilities.
Let us know if your son has any question. You and Giles are welcome to contact us at any time.
May 13, 2009
My name is Chuck. How can I serve your group? I would like to help in any capacity.AnswerChuck,
It is always amazing to hear from others who would like to help individuals with Traumatic Brain Injury. Have you had a TBI?, how did it happen?, have you done anything in the past in hospital and rehab settings for people with TBI?
If you have any comments about TBI, or things you see on our blog, e-mail your response.
Hope you are having a great day,
Response from Sheree
Hi Chuck –
Thanks so much for contacting us. We welcome your participation on the TBI blog. Our hope is that others will be reached and thereby helped by reading exchanges on the blog site. Your posts and comments will be available for all to read. The exchanges on the website are beneficial in helping others to potentially gain insight and courage.
Thank you again for writing. We look forward to hearing from you again.
May 11, 2009
I suffered a non-TBI in October, 2006. I have seen your website and blogs re: TBI but didn't know if there is a more relevant group I could go to for support. I am 39 and had a brain hemorrhage due to a malformation. Thanks.
~AmyResponseHi Amy –
Thanks for writing. Since a brain hemorrhage is usually clinically classified as a hemorrhagic Stroke, you might be interested in our Stroke Wellness program at TMH. This group of individuals meets weekly for a couple of hours of intervention with Speech, Occupational & Physical Therapists. It is free to the public, although we do have a waiting list at present.
The Stroke Wellness program is designed for Stroke Survivors who have completed all traditional therapeutic interventions, but still have a desire to address any remaining issues. Let me know if this sounds like something you would be interested in and I'll give you more details.
What issues are you experiencing, if any?
Thanks again for your interest.
May 7, 2009
I've been dealing w/my TBI much longer than most of you. I drove my girlfriend home the night of 7-26-80. And after getting her there just in time for her curfew of midnight on a hot steamy summer night. I lived just outside of Austin TX, she lived in Round Rock. Just down a country 4 lane road. I didn't wear my helmet (TX didn't have a helmet law) when I wouldn't be around traffic.
I came upon 1 vehicle that night. And it was an 18 yo drunk kid stationed at FT. Hood. He was ahead of me and as I and my Honda 500 cc endro, w/my head light on, came up to him he was in the outside lane. I was in the passing lane. He pulled off the road and dug out in the gravel and clipped me as he pulled a u-turn.
I, guess I can't remember that day or the 2 weeks before. I'm going by the police reports. I had 45 feet in skid marks. When the police got there about 45 minutes later at our best estimate. Going by if I got Liz home at roughly midnight and the accident happened about 5-8 minutes from her house and the police report says they got there at such and such time.
The driver that hit me was found throwing parts of my bike off into a field. Again according to the police report. He was asked 'What happened?'. He replied he just stopped to help. When the alert officer could tell the guy was drunk looked at his truck and found my paint on his truck and asked him to explain that. He said he just hit the bike as he pulled up to help. That didn't make sense where the paint was located on the truck. And an arrest was made.
While all this was going on I was on my way to the hospital. My heart stopped 5 times on the way to the hospital. I know this through a friend who was a friend of the EMT that handled my accident.
My dad got a call lat that night asking if he knew a Rob F. To this day he does very badly with late night phone calls. First thing he had to do was call Liz's parents and make use she was home and not laying out in a field somewhere. She was home in bed.
He didn't feel he could drive so he called a friend, who just happened to be the mother of my friend that knew the CMT, to drive him to the hospital. Soon after he got there they took him to see a priest. He told me later they do this when they don't expect the loved one to live. My stepmother, Cia, who had just gone to FL to see her kids returned. And the next morning My dad didn't feel up to calling the hospital. Cia, a nurse called, and the doctor said to her in a voice of shock, 'The boy is getting better'.
It was touch and go for a while, besides of the TBI I shattered my pelvis and injuried my right elbow. I cut it deeply. I was in a coma for 2 1/2 months. I was spastic which caused my hip joint that I had broke off my pelvis had muscle attached and being spastic was pulled out of place. Healing about an inch and a half to high on my pelvis.
I had to lean to sit up, stand again. One of my nurses told my dad in September that I's never walk again, then she added 'Maybe with to canes'. 5 months after entering the hosptial I walked out using a walker. I used the walker for 2 days when I tossed it aside. I said 'If I fall I fall...'
Sometimes when I went in for out patient therapy one of the nurses from my floor would ask me to come talk to the parents of a patient with a head injury to show them that there was hope. I had always been an athlete. My doctor said I says in the best shape of anyone he had ever seen on his table. He said my body absorbed a lot of the impact and that probably helped save my life. And the cut to my right elbow likely would have torn off the arm of someone else.
I attacked my recovery, as a jock. I knew health was going to just come knocking at my door. I started lifting weights the day after I got of the hospital. I had lost 50 pounds in the hosptial. I was a very skinny 115 when I left. And I couldn't wait to put muscle back on. It took years. I wanted to put on quality weight and not flab.
After a year I returned to the University of Texas. I only lacked a few credits from graduating. But as I wasn't fully recovered yet when I returned I went only part time. I had trouble regulating my body temperature. I remember coming into a building on just a warm day and being asked if it was raining out.
It took me a couple of years to complete the year I had left at the time of my accident. But I graduated from the University of Texas with a 3. GPA. I'd be interested in joining your 'Traumatic Brain Injury Advocacy Group'. Sorry for rambling on so.
Rob F.ResponseThanks so much for joining our group by submitting your story. There is strength in numbers as stories emerge from the community of TBI survivors. Your story is compelling, and your courage & strength are admirable. Attacking your recovery “as a jock” served you well, and earning your college degree had to have been a high point for you after what you endured.
You bring up a good point regarding helmets. Just as there was not a helmet law in Texas when you sustained your injury, there is no current helmet law here in Florida. Part of the role of our TBI Advocacy group is to promote helmet use. Your story sends a strong message in support of this point. While a helmet does not necessarily prevent injury, proper use of a helmet can put a rider in the best protective mode possible. While this report includes data up through 2002, the link serves as a good resource for statistics of TBI, and related injuries since the Florida helmet law was repealed in 2000: http://www.nhtsa.dot.gov/people/injury/pedbimot/ motorcycle/FlaMCReport/pages/lawchange.htm
Thank you again for taking the time to tell your story Rob. Thank you also for spotlighting important points that promote prevention of TBI. Not only the use of helmets, but the disastrous outcomes of what could happen when a driver chooses to operate a vehicle while under the influence.
We look forward to having you as part of our online forum. Thank you again.
May 14, 2009
Like you I had a traumatic injury. I was getting my PhD in Clinical Psych in Ohio and was struck by a truck on a crosswalk. I was in a coma for 13 days, and then it took about 2 and a half years for me to be able to return to school. I lost all of my abilities for memory, learning, and speaking. It sounds like you had a longer time than me to recover enough to return to school and get your degree. It is always good to see or hear from others who have have traumatic events and injury, but never give up. No matter what we have to change in our lives after the accident, we can change it for our great future. So congratulations for striving and reaching goals you had and have. I always love to say, "never give up'.
You can respond to our blog at anytime, and if you see a comment by someone who is dealing with a situation you know about, or have dealt with, respond and we can give the note so others can read it.
Thanks for talking,
Hello again, I just noticed that you're a Speech Language Pathologist. The main residue of my accident is my voice. It distorts sometimes especially if nervous. It's made getting a keeping a job hard. Had a supersivor at Good Will tell him that some of the managers had a hard time understanding me and to work on it. Now I've been working on it for over 20 years, but because she didn't think I was making enough improvement in 2 months she acted like I was intentionally disreguarding her request and I was let go 2 months later.
I've taught school and been a substance abuse counselor and once my sstudents/clients get used to my speech patterns there is no problem. But sometimes it requires a tiny bit more effort on the listener's part. I feel I have a lot to give, if only I was given the chance. It's amazing how many people will not put any extra effort. There are times I know I'm getting tongue tied, but most of the time I sound fine in my own head.
Rob F. ResponseHi Rob –
Your mention of an issue with voice since your accident is a familiar story from many TBI survivors. Your determination in continuing to work on your voice is the best action possible. You are right, if only you are willing to put forth extra effort, the payoff is usually positive. Kathleen, one of our Advocacy group members, also is left with voice challenges. She, like you, does not let that stop her. She can tell you that a good strategy for her is to tell folks up front: “Because of my injury, my voice may sound hoarse. Please let me know if you don’t understand me, and I’ll be happy to repeat if for you”. This simple statement puts everyone, including Kathleen, at ease during an interchange.
If you would like to continue to formally work on your voice, my recommendation would be to speak to your primary care physician to obtain an order for continued Speech Therapy. Here in the Tallahassee area, there are several resources available to provide that service. In addition to the Neuro Rehab Outpatient clinic, and the NeuroScience Center here at Tallahassee Memorial, the Communication Disorders Department at Florida State University is another great source for providing Speech & Language services in our community. Of course, these are not the only clinics in our area, but it is a starting point to discuss options with your physician.
Hey Rob, I have the same difficulty with my voice. Like Sheree said, when I'm talking to people, I tell them to stop me if they didn't catch what I said. I've been told A LOT that people can understand me a whole lot better when I'm relaxed & not tensed up, aggravated about something. I've also been told that singing, mouthing in my case, along with the radio helps your voice out. My bosses, and others, encourage me to talk & to use my voice as much as I can, that too, has helped!
Have you heard of inner-ear crystals? I heard on NPR that they are, in-part, responsible for your sense of balance.
Apparently, they can kind of fall out of place, when you jar your head really hard. The great news is that it is correctable. Can someone in your PT department give my head a good shake and try to get them in their proper place again? Response
What a great question. Yes, these "crystals" can be partially responsible for balance. One of our Physical Therapists who specializes in this area answers your question as follows:
What you are describing is something that is commonly known as positional vertigo or BPPV (benign paroxysmal positional vertigo). This can occur after a fall, blow to the head or head injury.
The inner ear is responsible for measuring and reporting the position and movement of the head to the brain with the goal of keeping one balanced at all times. In the inner ear are "canals" as well as a variety of other structures. There are "rocks" or "crystals" that are really microscopic calcium carbonate crystals that are attached to hair cells to make them more sensitive to gravity. At times, these crystals make come, or be knocked, loose allowing them to move around in areas of the inner ear (i.e. the canals) where they don't belong. This creates a situation that causes that section of the inner ear to suddenly become more easily irritated/stimulated. This often results in a sense of vertigo,or spinning, when the head is moved in certain directions or place in certain positions. A common complaint is one of feeling a rapid sense of spinning when getting in or out of bed, looking up at top shelfs, or rolling in bed. Some people don't actually feel a spinning but do complain of being off balance and dizzy with these same movements.
The good news to all of this is that there is a fairly quick fix for this problem. Eighty to eighty-five percent of people with this problem are successfully treated with a repositioning maneuver also known as an "Epley" maneuver that can physically move the crystals back into the section of the inner ear in which they belong resulting in a fairly rapid improvement in all of the symptoms of dizziness with improvement in balance as well.
That being said, not all dizziness, vertigo or balance problems are caused by the crystals. Often, people who have had head injuries may injure the inner ear itself or the sections of the brain that receive and integrate the balance signals. So, it is important that you be evaluated by a specialist who can identify the cause(s) of any balance problems or dizziness that you may be experiencing. Once the cause is identified, the treatment can be rapidly initiated!!
My husband and I attended the TBI Survivor Support Group meeting at TMH last night where the TBI Advocacy group presented about this website & blog. A quick (?) summary of our story:
September 19, 2004, Baton Rouge, LA:
We were doing our Saturday errands (my husband Dave, my then 4-month-son Joey, and I). We were turning left at an "orange" light, the pick-up coming in the opposite direction increased speed to make it through before the light changed to red.... We were "T"'d on the rear passenger side. I prefer to imagine I was there, hovering protectively over my son's car seat. In reality, I don't remember what I was doing - then - or up to a week beforehand. My husband, who suffered burns from the air bags, was not seriously injured, other than the mental anguish of being the driver in a life-altering car accident. My son, thankfully, was healthily screaming at the top of his lungs, uninjured except for some bruising caused by his seat belt straps. After they extacted me from being pinned between the pick-up truck and Joey's carseat, I was rushed to ICU, comatose and hypoxic.
My prognosis was dire. The neurosurgeon got an organ donor team assembled and ready. He pronouced that, due to my severe brain injury, I likely wouldn't survive the night. My husband heard in rushed, whispered tones, terms like, "nearly sheared brain stem", "little brain activity", "broken neck", "broken ribs", "broken collar bone", "wow...pelvis broken in three places", "severely hypoxic"....I survived that first night and spent the next three weeks in a coma. Rebooting. Like a computer that had its plug suddenly pulled.
I "woke" up, was transferred to Tuoro Rehab in New Orleans, and until the beginning of November was unable to speak and in a state of post-traumatic amnesia. November 7, to be exact...I regained my faculties and was able to sing, "Happy Birthday", to my husband. Then began the hard part, the LONG (fully conscious) recovery. Like many of you, I learned to sit up in my bed by myself, graduated to wheelchair, then walker, then cane, then finally, 1.5 years later, to walk unaided.
I was in effect, reborn at the moment of my accident. There were a lot of firsts. I had to potty train, regain my damaged short-term memory, and learn to use the right side of my body again (the accident left me hemi-palegic). I suffer from diplopia (double-vision); my brain is unable to supress one of the two images I see. But, as before the accident, I have perfect 20/20 vision. I joke that I can see two of everything...perfectly! Luckily, I retained all my frontal-lobe skills, along with my ability to read, write, speak, and solve problems. But I have the emotional control of a four-year-old (no tantrums, thank goodness, just "melt downs"). And I'm tired...so tired...all the time. And I can no longer drive (my reaction time is too slow). And I have to take an anti-seizure med, because about 8 months after the accident, I suffered a grand-mal seizure. But the good news there is that I have not had one since.
Notice I said "our" story, because my husband was not only in the accident, but has been steadfastly by my side throughout my recovery. I joke with him that he had the harder job. Because while he had to juggle work, raising our young son, visiting family and friends, his emotions over the accident, his comatose wife, and (let's not forget the biggie) dealing with the hosptial and insurance company, I merely slept. But the truth is, on some sub-conscious level, I was fighting for my life. I just thank God Dave was there to take care of the rest.
I had a neoro-psych eval right after I left the hospital, during which I was pronounced mildly retarded. Now I am working full-time in the career path I had chosen before the accident (I have my M.S. in Wildlife Biology) as an aquatics ecologist for the state of Florida. I sit back and marvel at this feat, that I 've come so far, so fast, but more often than not, I feel overwhelmed and in over my head, drowning in the very waters that I am working to protect.
Attending the meeting last night helped me come up to the surface. Finally, a group of people who knows how it feels like to go on this journey, to have grieved the loss of your former self (even if, begrudgingly, you are a better person for having had the TBI). Finally, I am not alone.
1. How do I survive this full-time schedule?
2. What is the best way to get around town without driving (we just moved here in December, I cannot walk for extended distances, and I am not coordinated enough for a bike)
3. Can anybody recommend a good neurologist who deals with CHP (in Tallahassee)? In fact, that would be my recommendation for this blog site, to post TBI-friendly and/or TBI-experienced medical staff... Response
Hello Rebecca -
Thank you so much for taking the time to tell "your story". I read it with tears in my eyes as I never cease to be amazed at the power of motivated human beings to defeat life's obstacles. It's so nice to meet you and Dave -- you, are another "miracle", and Dave, that rare person who unselfishly & lovingly fills the role of lifeline and supporter.
Your story is quite similar to Kathleen's & Chas', as far as severity of injury goes. I am also reminded of the Discovery Channel documentary I saw a few weeks ago, entitled "Marathon Love". Hope you get the chance to see it sometime.
If you are amenable, I'd like to post your story and questions on the Blog. I can answer some of your questions, but maybe others will post some responses as well.
1. Managing the full-time schedule: Well, this is a challenge for many, especially with a young child in the home. If you are in the position to "ease" into a full-time schedule, that may help with adapting to the fatigue. Or perhaps, identifying your "best" & "worst" time of day, and adapting your schedule as possible around those times. I would also recommend minimizing the "work" within the home -- that is, identifying a simple meal plan that is not labor intensive, arranging for help with childcare and housework if possible. Developing and adhering to a structured sleep hygiene routine may help as well. Getting to bed on time, and ensuring a full 8 hours of sleep may help you through the work day.
2. The best way to get around town: Taltran is the local transit system with buses serving our region. In addition, Big Bend Transit offers a program as well.
3. A neurologist who specializes in TBI: We have several qualified Neurologists in our region. Specifically, Dr. Charles Maitland is a Neuro-opthamologist who is also the Medical Director of the Tallahassee Memorial Neuro Rehab unit.
Hope this information helps, and I look forward to seeing you again. Thanks again for coming last night and for contacting us today. Please keep in touch and let us know of any other support we can offer through our services. Please let me know if you are okay with posting this exchange for others to read.
Have a good day.
Rebecca’s story is nothing short of amazing. I too had tears in my eyes towards the end. The last few sentences struck home with me in particular. As terrible as all of our injuries are we are most certainly better, stronger people because of them. If I could go back in time I wouldn’t change a thing : )
Is there an online support group of people who have had TBI can communicate in? My injury was a long time ago but was permanent and I have never been able to talk with anyone with similar difficulties.ResponseYes, our TBI advocacy group is available to field your questions or communicate with you online. The process involves you emailing me with your questions or comments, and I will post it on our website for the group to respond to.
If you have not read the stories of our group members, or read the posts to our blog, here is the link: http://www.tmh.org/neuroscience.cfm?id=511.
Have a great day, and thank you for your note. We look forward to communicating together with you.
I heard about TMH’s efforts to provide support to TBI patients on the news. As a disability services support coordinator for a local college, I see your groups as a possible resource for our students. As a TBI survivor, I recognize the need to provide support and information for people dealing with this often frustrating condition. Our office works with several students who have had car accidents resulting in TBI. In the next 12 months, I believe our population of veterans returning to school with TBI will be significant. I am interested to learn how I can connect these students with your services and support group. Thank you so much for any information you can provide to me! ResponseThanks so much for contacting us. You bring up some good points regarding students who may have special needs. One of our advocacy group members has faced multiple hurdles in his quest to reintegrate into a college curriculum. Our hope is to identify some of those hurdles and through education, help to cut through some barriers. If you would like our group to visit your facility here in Tallahassee, and perhaps speak on TBI prevention, please let me know. We welcome opportunities to collaborate.
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