The CARE-TBI List Members Bio Page
This list of people and their biography's are members of the CARE-TBI ® Mailing list which is a PRIVATE list. This page was created so all members can refer to it to familiarize themselves with the others situation with their BI loved one.
The information contained on this page and any links (Bios) are PRIVATE and are not to be viewed or accessed by anyone not subscribed to the CARE-TBI mailing list. This page is also not to have any Links to it from any other source. The User Name and password you use to access this page is to be kept strictly confidential.
Anyone on the CARE-TBI Support Mailing list is welcome to submit a Bio of their own, just follow the instructions for submission.
The CARE-TBI List was started in March of 1996. It's operated from a 500mhz Windows NT server.
It's membership varies weekly but averages about 300 people. The largest percentage are from the U.S. and almost every State is represented. Other countries represented are:
Australia, New Zealand, Canada, Great Britain, Spain, Netherlands, South Africa, Ukraine, Venezuela, Israel
Parent of Child (under 18)
/ Dede Marshall * Tara Burgess *
Donna Meyers * Lori Hart * Julie Flockerzi
Cathy Childs * Peter Dollery * Jessica Cougan * Cher West * Lisa Torres
Jody Silvey * Jan Lathrop * Judy Nigro * Piotr Paulo * Angel Pingley
Glenda Haygarth * Debbie Welborn * Donna Lamarche *
Debbie Trongo * Melissa & Chris Garvas
Parent of Adult Child
Neibuhr * Steve & Janna Little * Paula O'Connor * Eric Dietiker * Martha Burnham
Bob / Glenda Healy * Pat Stark * Dodee Davis * Tom /Lydia Larremore
Trisha Spivey * Marlene Wallace * Dee Pickering * Joan Landon * Jenny Dentzer
Ted Phipps * Pat / Lucy Nolan * Miles Affleck * Cindy Harrison * Donna Olds
Frances Toney * Donna Strugis * Barb Caramico * Pat Flores * Chris Collins
Peggy Dietrich * Connie Cannizzaro * Gail Getzendaner * Juanita Bayer
Ila Nofziger * Sandee Brauner * Faith Scheib * Duke & Ruthie Haney
Normand & Maria Cabral * Tammy Richardson * Tammy Zuccala
Debbie Miller * Tracy Spracklen * William Shirley *
Spouse/Partner of men
Kostis * Donna McCaffery * Carol
* Georgianne Wiersch * Barb
Donna M. Wolff * Donna Pollitt * Lorri Fisher * Yvonne Sexton * Brenda Jones
Siobhan Szakaly * Linda Williams * Julie Sladek * Kathie Waldron
Bonnie Mannen * Kate Gregory * Deann Dwyer * Melanie Bondera
Edie Belanger * Barbara Blank
Spouse/Partner of women
* Terry Brennan
Frank Ford * John Boyda * Len Beddows * Dan Roshon
* Beverly Siscoe
Child of Parent
* Becky Arnold * Adrienne
Leslie Jackson * Mary Casteel * Martha Wiley * Linda Offenhartz
Son: Sean Burgess
TBI Date: 5/8/95
Sean's TBI happened when he fell 16 feet out of a second story window, and landed headfirst on concrete. He was unconscious, and started to seize when the paramedics arrived. He seized the whole way to Children's Hospital. I didn't see Sean again, until about 2 hours after we got to the hospital. A priest came to the consultation room where we waited for news on Sean. He was finally able to take us up to the ICU, where we talked to 3 nuero-surgeons. We were told that Sean suffered a depressed skull fracture, and a subdural hematoma. They were able to stop the seizures, but Sean had small bleeds in his head and his brain was starting to swell. They told us that he would need surgery before the night was through, and the chance of him surviving was about 10%.
He made it through, despite the odds. His face and head swelled so big, that his ears disappeared. He was restrained to the bed on his right side, and his left side was paralyzed. While restrained he still managed to pull out IV's, and hid catheter. After 7 days of watching and waiting (hell), He was moved to the step-down unit, and eventually a regular room. On Mother's Day- my younger son, Adam was able to come visit- Sean was the happiest I had ever seen him. We came home on May 19, with a paralyzed, behaviorally unadjusted child.
We went to therapy 3 times a week at Children's Hospital, and in July, he started to make his first steps. In August, we found out that Sean's skull was not healing. So, in September, the neurologist did a craniotomy. They took out his skull, reconstructed it using plates and screws, and replaced sections of his dura. About 2 months later, he went for an EEG to prove that he was having seizures. He has been on a mix of Tegretol and Depakote.
Sean still has a noticeable limp and his left side is extremely weak. When he's tired, he only smiles out of one side of his face. He is also having short-term memory problems. Sean is one of the strongest people I know. At 5 years old, he has much more strength and courage than I do.
He is my biggest hero.
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Situation: Bill, husband, 39, ABI 7/88, currently fairly high functioning.
Bio: Bill had symptoms of lupus (a disease his sister has) early in July 1988. He was misdiagnosed and really had TTP (Thrombotic Thrombocytopenic Purpura), an acute and very deadly blood platelet disorder that causes bleeding and clotting at the same time. He had been hospitalized for 2 weeks and on 7/20/88 I arrived at the hospital at 7 a.m. to speak with the hematologist about what he planned to do next, since Bill was not improving.
Bill was sitting on the edge of the bed and said he did not feel well. Then he began grand mal seizures and neurological deterioration over the next few hours. He was life-flighted from our community hospital to University Hospitals of Cleveland, where the proper diagnosis was made and he began treatment.
Once he was treated with plasma-pheresis, chemotherapy, steroids, and blood products, the acute disorder, TTP, improved. However, all of the brain infarcts caused by hemorrhaging and clotting, were causing him to deteriorate.
Two days after he was flown to U.H., I was advised to remove life-support. He had only minimal brain function and I was told he weould be institutionalized if he survived. After months of treatment and rehab, he was able to come home, and has made great strides.
Now, 9 1/2 years later, he can fix simple meals for himself, do some light housework and occasional yardwork. He is on disability mostly because of his cognitive deficits. His short- term memory is poor, and other physical symptoms are worse on some days than on others. Over the past 9 years he also has had other physical problems: cancer, endocrine disorders, psychosis, eye surgeries, sleep apnea and cardiomyopathy; all of which may or may not be related to his having had TTP.
I am a librarian working full-time managing a department of 21 in a large public library. I love my work. It's probably one of the few things that keeps me from going bonkers!
Bill is well enough to know what he's missed. He's very angry about the illness and what's it's done to him. We also lost a medical malpractice suit against the community hospital. He is extremely angry about that, feeling that he at least would have had SOME compensation for his tragedy.
We try to lead as normal a life as possible. We have weekly routines (very important to Bill), try to do fun things on a regular basis, and vacation in Florida every February (his birthday). This is expensive, but it keeps HIM from going bonkers, which helps both of us.
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I, my husband Allen, are the caregivers to a handsome 10 year son, Levi. He was injured in a MVC on Oct.22, 1992, one half block from his home. Levi, was 5 1/2 years old, and has remained in a coma from the date of the crash. He was an unrestrained passenger and sustained all closed head injury. Levi does not make any purposeful movements, except he does raise his hands to pain and typical boy, does not like his faced washed.
Levi, lives at home with us and goes to school everyday to the multihandicapped class with some main stream classes. We are told that the package we have now is what we have, but like others of you with loved ones in coma's, you never know. So I will keep pursuing school and other things for Levi.
I am very proud to say that Levi was instrumental this year in helping to persade legislators in passing Oklahoma's Primary Seat Belt Law. He has been honored by Safe Kids of Oklahoma and the State Highway Office for our efforts. This coming years Safe Kids calandar will be deciated to him, as he represents children all over. Thank you, Levi's Mom
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My name is Julie. I am the mother of a BI little girl, 7, and another little girl, 2. The girls are very fortunate to have a wonderful daddy, Mike. My daughter, Emily, suffered a severe TBI when she was 6 years old. Here is her story.
Emily's accident was on June 26, 1996. She was learning to ride horses. She fell from the horse, and was kicked in the head. She was unconscious from the beginning. The girl with her, gave her mouth to mouth and sucked out her nose, she was bleeding from nose, ears. They were on a dirt road back in the country, but someone came by and went to use phone to call ambulance. Local rescue arrived before ambulance. Emily was helicoptered to Pitts. Children's Hospital about 90 miles away. We live in very small town and they couldnt handle such a case and knew it. Emily died somewhere before arriving in Pittsburgh and was brought back to life. We know that Emily was being treated in Pitts. before we even knew that there had been accident!
Emily spend 21 days in PICU, 17 of which were in a coma with a nurse by her side 24 hours. She then was moved up to a regular floor for 7 days and then she was transported by ambulance to rehabilitation 150 miles. While in the hospital, it seemed like every part of her body was being invaded somehow. She looked so small and frail. Temperature control was quite a concern- brainstem controls temperature regulating. She had a pneumonia, a lung infection, and just about whatever else comes with the territory. Luckily, Emily never broke any bones (only one fracture in her skull). She only a few minor brush scrapes on her arms! Not even a bruise visible. (During her bath you could see that on her back she had a huge bruise.) Her hair was covered in blood for quite a while until we had one nurse, carefully comb and pick leaves out of it, until she could properly wash it.
During Emily's ICU Mike & I spent a lot of time talking and rubbing cream into her skin. I bought highly fragrant creams and lip balms. (Anything to stimulate). It was so hard to let someone else in charge of your childs life, after trusting hardly anyone in the six years we had her! We knew they knew what was best for her and tried to stay out of the way of all of the doctors, nurses and machines!
Being as uninformed about BI as could be, I thought she would just open her eyes (like on TV) and she'd be fine! Hey she lived, I thought it would be like a broken bone, and heal new! Boy was I wrong. We had wonderful doctors that were very caring.
On July 22, we arrived in rehab. (which is about 50 miles away from here) and I moved into Emily's room with her for the next 4 1/2 months. We live in a really small town 90 miles north of Pitts. (where hospital is) and 50 miles south of Erie (where rehab. is).
Emily laid on the bed and looked at the walls for the first 3-4 wks. She gave us no responses. Talk about scary. Well, that about where they thought shed stop getting better. She was fed through the nose because she had lost all ability to swallow (another brainstem function). It was a long hard fight but somehow she did it. Mike & I or whoever was there in the hospital with her, would attend therapies with her. It was a great place to be. One of us was with her at all times. We stayed right in her room, its a double hospital room, in the other bed. She totally amazed the therapists! At the time of discharge, she walked out of the hospital with a walker!!
Emily is now in kindergarten (would have been in 1st grade if accident hadn't happened) only a 1/2. Which is probably all she could handle. She has OT & PT here at home 3 days a wk. in the afternoons. School is giving her speech (5 times a wk.), OT (1 time a wk.), and PT (1 time with therapist, 3 times with gym teacher, and 1 time with her aid). By 5:00 she almost asleep at the dinner table! She works really hard and never complains. She has an aide at school that gets her off the bus and stays with her throughout the day and puts her on the bus to come home. We have a van that comes to the house to pick her up every morning and take her and her wheelchair and walker to school. She is doing pretty well. Balance & coordination will always be a problem for her. Hopefully someday shell be able to walk alone or with a small cane. She is doing what the other kids do in school, only she has to be told to pay attention (her mind wonders off). Her report card was really good, all satisfactory and one needs improvement. Not bad for a kid who wasnt supposed to live! We are so proud of all the hard work she does and continues to do daily! What a kid she is!! She is our Miracle Child!!
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Steve and Janna Little
Situation: Our oldest son, Curt (23) was injured in a single car rollover MVA on October 13, 1996. He was alone and had been drinking. Curt was ejected from the vehicle and was transported by paramedics to the nearest hospital...elapsed time from accident to hospital, 3 hours.
Injuries included a compressed skull fracture, severe laceration to head, C-5 vertebra broken (stable fracture, no damage to spinal cord), severe laceration to the back of the right leg just below the knee, broken right shoulder blade and damage to right rotater cuff and a few minor cuts and scrapes.
Surgeries following the accident were: Insertion of intercranial pressure monitor, repair of head and leg lacerations (10/13), skull fracture repair (10/21), Tracheostomy and stomach PEG (10/29) and repair of C-5 vertebra (11/15).
He had pneumonia twice, the first starting the day of the accident (caused by aspirating vomit) and the second bout starting after the vertebra repair on 11/15. He was in ICU 1 month altogether. (3 weeks following the accident and 1 week following the surgery on his neck).
Curt was given many drugs at first to control the pneumonia and bodily functions. (heprin, BP medicine, pepsid, etc.) He was initially given Dantrium and Catapres starting 10/26 for the abnormal muscle tone. Dantrium is a muscle relaxer that helps relieve the clonus or muscle groups fighting against each other. Catapres is a BP medicine that has been found to help control tone. Amantadine was started on 11/09 to increase Curt's awareness. Three days after it was started Curt started talking.
Based on Rancho Los Amigos Stages of recovery he was at a Level 2-3 for 2 weeks, a level 3 for about 2 weeks and went from a Level 3-4 or 5 while in rehab in December. He was at a level 4 when we brought him home from the hospital December 25, 1996. He had been started on Prozac and Tegretol in the last 2 weeks of his stay there. He was in a Brain Injury Rehab program from 11/22/96 to 12/25/96. The neuropsychologist said because of the difuse brain injury he crossed several Rancho levels and it was difficult to determine where he stood.
This guy had only seen him twice and had his associate do some neuropsych tests in mid December. They were inconclusive because of Curt's lack of awareness and yet this doc based all of his statements on the test results. (Some can't see past the end of their degree).
Curt could not walk when he got home. He was somewhat incontinent but had actually learned to use the urinal the week before he left the hospital thanks to a very understanding male nurses aide. He was able to walk well enough by the end of February that we took his wheel chair back and he used the walker and a cane and sometimes he just took off walking. He had problems with balance and abnormal tone. He had each therapy (PT, OT, ST) twice a week until mid-April. There were many times during that period that he would refuse to do the homework because he said he already knew how to do all that stuff. The ST finally admitted that she was basically testing him in each session because he never stayed at the same level of comprehension from one session to the other.
By the end of July (by now in outpatient therapy) he scored one point under normal on his balance tests which amazed everyone (including me and I'm with him every day). He is doing all of his own care at home, graduated from a shower bench in mid March and is doing his own hygiene. (I still check on him periodically to see if he is doing ok there). The only thing he forgets to do is shave but that could be because he had a beard before the accident and was not in the habit of shaving. He has grown a mustache. He can prepare his own meals although I still do the evening meal and he does help me with that most of the time. Hence, no need for an OT to teach him the basics.
His main problem is his short term memory loss. We know that he retains things because he can relate things that he has done since the accident. But to ask him point blank what he did that morning...he just can't remember. If we can prompt him he will remember most of the time but says its like he didn't really do anything just remembers being told he did. He asks constantly why he can't go back to work, why he can't live alone and why he can't drive. He denies that he would have any problems doing these things. We started him on Ritilan on August 12 and it seems to have given him a boost as far as initiative. We will try to keep up with this list and keep everyone updated.
Steve and Janna Little; parents
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My son, Patrick, is now 24 and 11 years post-tbi. When he was 13, he was hit by the large, extended side mirror of a truck that was going 45 miles an hour. The impact threw him 3 feet in the air and he landed on the sidewalk on his forehead. He spent nine days in varying stages of coma. When he first woke, he had to learn to eat, walk, speak, dress, and recognize family and friends again. Pat was given OT, PT and speech therapy while in the hospital. He went home after 3 weeks with only speech therapy ordered for 3 months. This is typical of what TBI survivors were being provided with at the time in our area.
We were totally unprepared for the enormous changes in my once-gifted, articulate, amiable, over-achieving son. A stranger came home in his body, and he is still struggling to recognize and come to terms with the losses. Years followed in which we searched for good resources and constructive answers, fought the schools and VR for services, and struggled to give meaning to his life. Somehow he found the strength to get his high school g.e.d., finish about 40 hours of college (having attempted well over 60), and work part-time as a bartender/waiter. The struggle took its toll. Pat is now on SSDI and SSI due to chronic fatigue syndrome and depression.
Patrick has a sister, Kelly, 22, who has acquired brain injury from a severe birth trauma which resulted in anoxia and infant bpd. Two arteries in the umbilical cord were ruptured and she lost 3/4 of her blood and had no heart rate before delivery. She has had a tremendous struggle with school, but she managed to garner awards as a public speaker, graduate in the top third of her high school class with half of her classes mainstreamed, and complete 3 college classes and get an "A" in two of them. Her VR eval said she shoudl go into a residential care facility and learn life-skills and how to be a cashier for the rest of her life if she was lucky! She is constantly amazing everyone. She has just moved to the same location I'm in and is registering for a local community college, majoring in sociology with a minor in women's studies. She shares many of the struggles Pat does, but has few behavioral problems and far more severe memory problems. It has been said that kids with bi from birth trauma don't have the struggle with the grief from the loss of their former selves, but Kelly grieves for the person she feels she could have been and the chance to prove who she could have been.
My father suffered anoxia from shock due to massive infections 11 years ago. He is in a wheelchair and has quadraparesia. We were told from day one that he'd never make it, and for two years that he'd be a vegetable. He has proven the doctors wrong on both counts. He enjoys reading and watching TV.
I also have a daughter, Kim, 23, who lives in another state. She has spent her life living in the shadows of someone else's trauma. She is a remarkably compassionate, self-aware, mature, beautiful, competent woman. (But, she was a corker in high school.) She also has her ghosts, worries about her siblings, and WILL NOT go into a hospital. She has a laugh and a smile that are as bright as sunshine [and a temper that's as hot as the sun].
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Web Page: None
Keenan is my eight year old son who suffered from encephalitis July 1995. He was put in a coma for a month to keep his brain from swelling too much. After the ICU, he spent five months in Oakland Children's inpatient rehab, before we brought him home Christmas 1996 - some of Keenan's greatest gains came in the first few months after we brought him home.
Since his coma he has had to learn to do everything over again. It has been very slow going, often compromised by various medical and drug-related problems. He has come a long way, but has a long way to go. He still does not eat or talk much due to severe apraxia, and he is fed through a g-tube.
He seems to have some problems with visual processing at times. And he often does not seem very "with it" - slow to respond or unresponsive, not able to concentrate, stuff like that. But (I don't want to end this paragraph on a negative note), it was clear from very early on that Keenan had lost none of his memory or original spirit/soul. He's still a sensitive & compassionate kid with a love for nature's creatures. And, though his recovery has been painfully slow, it has never stopped - even this week we are noticing improvements (and I hope that will be true almost every week).
Keenan is on depakote and lamictal for seizure control, and cisipride for reflux. We also give him DMG for its positive behavior effect and possible seizure improvement. Earlier this year we weaned him from phenobarbital, with no increased seizures, but a huge cognitive improvement. We also treated him with intraveneous immunoglobulin therapy (IVIG), which put an end to the myoclonus/seizures which were causing him to throw up his meals frequently. We just (7/97) started Keenan on the ketogenic diet for his drop seizures. Keenan has had botoxin injections for tone in his right calf/ankle. The botox, along with a splint, has helped quite a bit.
After looking at various classrooms for kids with disabilities - ADD, CP, autism, etc., we decided to fully include Keenan with an aide. After a few IEPs, it's clear that we have to learn more about what we can and can't demand, and what we need to do to prepare for an IEP. Next year we're fully included again with the same aide (we really wanted a more involved aide), and a teacher who said in the last IEP that she didn't go into teaching to teach special ed. We feel we have to walk a fine line between not getting good service and alienating the school staff - if we don't push them, get in their face, always ask for more, everything will fall apart.
Don't know if this is normal, but except for my mother, our parents have been absent pretty much since Keenan's return home. We had lots of help while he was in the ICU and rehab, but since then they have checked out. My father lives across the country from us, but still no visits in two years. Jill's mother lives across the bridge from us, but we've only seen her twice in two years!
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Web Page: http://www.teleport.com/~xman
Linda (fiancee/life partner/significant other) suffered ananeurysm/subarachnoid hemmorage on May 15th, 1996. Linda was in a coma for almost five weeks, in neurotrauma recovery for almost five weeks after that. She was then moved to a skilled nursing facility where she began rehab.
After about a month in that facility, we began to see the full effects of Linda's aneurysm. Aphasia (loss of language abilities), apraxia (loss of skilled movement abilities), homonymous hemianopsia (loss of visual efficiency - but that is a very basic explanation of this evil symptom).
After 15 months, Linda's speech is very slowly coming back. She still shuffles around like a 90-year old and tires very easily. Although she has trouble vocalizing her wants, she always knows the word and can draw the first letter "in the air" so we can play a modified version of 20 questions to figure it out.
These days, Linda lives in an adult foster care home during the week and comes home on the weekends. I'm hoping that she will be able to come home full-time but don't think this will happen anytime soon. The funny thing is that, for the most part, Linda is pretty healthy. Linda is getting feeling back on her right side and her hair and nails are growing like crazy. This BI is an evil thing but she's alive and we get to spend time together and that's what makes both of us happy.
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Husband, Mitchell, 55, sustained TBI in fall down stairs in September, 1981. He required immediate brain surgery, spent 2 months in ICU followed by 6 months at Kessler Institute for Rehabilitation. Spent an additional 3 months as an outpatient at Kessler and later went through a cognitive rehabilitation program also at Kessler. After that, Kessler felt that he would never be able to handle real employment and helped me place him in a sheltered workshop. They terminated him after a year.
He has recovered quite well physically (he was in a wheelchair for a little over a year.) He has no real insight into his condition, feels there is nothing wrong with him, and still hopes to return to work one day. His main deficits include no left field of vision (hemianopsia), impaired hand/eye coordination, impaired abilities for logical thinking or reasoning or problem solving, and behavioral problems.
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Loc.: Toronto, Canada
My 3 1/2 year old daughter, Alexandra, suffered an anoxic brain injury on May 12-97. She was in a hospital, under a general anesthetic for some minor dental work, as she was afraid of dentists. At some point her heart stopped, and the monitors began alarming, but they turned them off, believing it was false. They kept repairing her cavities even though at this point she was clinically deceased. Finally, an O.R. nurse noticed she was turning blue, and getting cold, so she tried for a pulse with no success. They called a "code blue" and that team got the heart going again. Total time was said to be 5 to 6 minutes, but our law firm now say's up to 15 minutes based on the hospital records Alexandra was rushed to PICU at Sick Children's Hospital in Toronto for about one month.
She opened her eyes after 4 days, but with no reaction, or tracking. She was on full life support at that time. One week later they asked us if they could take out her vent tube. She was not expected to live. I had to make funeral arrangements. At this point she was in a vegetative state, and they were telling us it was going to be persistent. Well, she started breathing on her own and we haven't looked back since.
The doctors conducted many tests, including 2 CT scans, 2 Evoke Potentials, EEG's, etc., and they were ALL negative. The top Neurologist in Canada works at that hospital, and he was checking her every other day, again, negative. Because they " had to " they sent Alex to the Bloorview Children's Hospital in Toronto for a three month evaluation period. It is a rehab clinic, world renowned. Alex has made progress you would not believe. She can talk, has memory, recognizes you voice, is semi-continent, has some limb control, and has a full range of emotions. Currently she is blind.
We have a swallow test coming up the last week of July, as well as another round of Neuro. tests. Alex is a fighter, and has proven everyone wrong. She will never be quite the way she was, but I don't care. Compared to what we had 2 month's ago, her condition is nothing short of miraculous. Alexandra also has two brothers, Ryan (6), and Kelly(2).
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October 1994, my husband Tom was in a semi-truck accident. It was a rollover, he had a head injury and a lot of bruises all over.
Bio: We have been married 16 years in August. We have 3 children, ages 15, 13 & 8. Tom is high functioning, he is on medication to help with his headaches and dizziness. He has some long and short term memory loss. He also has some problems with his speech (minor), anger control, mild depression and light sensitivity.
We are still fighting with the doctors, lawyers and W/C, to get the best treatment available. Tom wants to be able to go back to work, so he can provide all of us with a good future. We pray that the Lord will help us make it come true.
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Married 10 years and have 3 boys ages 8,6, and 3, share cargier duties with my dad for my mom 3 yrs post BI . I take care of her while he works . She is usually here from 6ish am to 8 or 9ish pm and everyother weekend. I am trying to convince them to move in with me so he cn retire and still have help. Mom is fifty five and dad is sixty seven.
my mother, age 55 fell ill with encephalitis/meningits at 52. She went from doctor to doctor for months and months comlaining of an itchy rash all over her body(but especially on her arms) and a feeling of broken glass in her head and a severe headache among other symtoms. Toward the end she had a very high temp, extreem tiredness and diarehha and very stiff neck, it was attributed to stress and a bad case of the flu, one doc thought she might have cancer (the last one she saw) and so had her come into the hospital for tests...it was there that she passed out and had a temp of 104+. Needless to say the test was forgotten and she was admited immitiately.
Doctors didn't recognise what the ailment was until after her brain had become too swollen and compressed inside her skull to relieve the pressure . She has severe Brain damage: spotty damage in areas and death in other areas. She has damage from the leisons on her brain and from the compression. She only has use of a fraction of what is "normaly used" Her front left lobe is basically gone from death and damage and she has damage in the center and spotted damage/death thruout the brain.
After a grand Mal siezure she went into coma. While in the coma she continued to have "mini" seizures.(and possibly a stroke) Just prior to going into coma she lost all ability to swallow and talk. We had to stay the night at the hospital draining the fluid from her mouth so that she didn't drown in her own saliva.... all the while we waited for the doctor to arrive ANY DOCTOR (he had been paged ) Her lung collapsed, a trache and peg tube were put in place.She awoke from the coma on the way to the hospital we had her transferred to. She still could not communicate her needs and siezures were still a problem as was the swelling of her brain and the tissue surrounding it as they caused other complications. I was very pregnant with my last child and drove 2 hours up to the hospital and 2 hour back home daily so that my father and myself could be with her.
She recieved rehab after begging and cajoling the rehab and insurance company to accept it. They felt she was at too low of a functioning level. The insurance wanted her put in a nursing home-I am a certified Aid....I felt that is I couuld take care of strangers in situations similar to hers then why couldn't I take care of my own mother! (I do and have been since she was released from the rehab)
Fast forwarding to present day:Mom can now walk and run(tho she has a "lurch" to her gait) She no longer has the PEG tube and eats what the family eats (somewhat messy but she is in fact eating normal foods now) She is no longer on the trache and can talk "in her own way", unfortunately it is not always consistant or understandable. She does not understand many things- tho I believe she understands more than the doctors give her credit for. She needs constant 24/7 surpervision as she will eat in appropriate things(anything from a button to fecal matter, to baby socks or anything in between) We have to ration her food or she will eat until her stomach literally cannot hold anymore and she will get sick. She will wander off and not know how to get home or where she is and not be able to communicate her needs; she is incontinet of both bladder and bowel. She cannot read or write or hold a conversation, she needs help in dressing and only gives minimal help in bathing.
This all sounds very negative....but there are things she enjoys and is happy doing: She loves to "draw" and to look at picture books and to play with my children. She loves rides in the car and enjoys "helping me clean" she will happily fold clothes or wash a table or sweep. She loves to go for walks and too often I am tired and ready to stop much before she is. She loves our pets, a cat and dog and will play with them or simply sit and stroke them and nuzzle and talk with them for hours. She likes her games. She will sing songs and talk to you in her own way...I only wish I understood what she was saying more often. Sometimes things are Very clear as we talk just as any two adults might but it only lasts a few minutes and then she is back to repeating and babbling incomprehendable sounds. She knows me, my father, my husband and my 3 boys and will call us by our names(consistantly correctly) but she gets frightened of visitors and doesn't know her other 5 children or thier spouses or thier children. I am told this is because she is with us on a daily basis and she only sees them once ort twice a year on holidays and so doesn't remember or recognise them .
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Home Page: http://www.linkline.com/personal/fordf/index.html
Yvette, Wife, 29, MVA 11/21/96, Severe TBI, now High-Functioning . Her car was rear ended then lost control and hit two trees. She was in a coma for about three weeks, then gradually started to wake up. She was hospitalized and in rehab for 5-1/2 months, and has returned home. She has long and short term memory loss, and limited use of one arm... but both are slowly improving with therapy.
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Bob and Glenda Healy
Situation: Son, Glen, injured in MVA 6-28-94, age 22, Brain stem injury and
anoxic injury. Glen responds by squeezing your hand or blinking although he
is not consistent yet. He can move his arms and legs a little sometimes on
command but the response is delayed.
Brief Bio: We live on the Oregon Coast and have had a hard time finding
resources in our area. We just won a major battle to get Glen more physical
and occupational therapy. He is currently in a residential care facility
but we are working on getting a new house so we can bring him home.
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Friend of Paul (31yrs of age). TBI from MVA 20/06/96. Induced coma for three days. Broken bone in right occipital socket. Paul was initially diagnosed with severe traumatic brain injury. He was very fortunate insofar as his other injuries were minimal, no other broken bones. He tore muscles in both arms (trying to hold onto his motorcyle and put it through the car!), his shoulders, neck, stomach and back. Initial symptoms included disorientation, short term memory deficits, slurred speech, difficulty co-ordinating right and left hands, gait problems (left leg drags), executive function deficits, imbalance, anxiety attacks. He was extremely photosensitive, but looked doubly cool running in two pairs of sunglasses. Paul has absolutely no recall of the accident.
Over time the slurred speech has diminished, about 6-months. His short term memory has improved but is still problematic. Other symptoms prevail. Paul is unable to work. He is on maximum recommended dosages of Effexor to help manage his anxiety attacks and Tamazepan to help him sleep.
My interest in TBI has arisen because of Paul's condition. I am completing my final year in a degree in education (high school) and want to be able to develop teaching strategies for children with TBI. I am interested in all aspects of TBI but hope to be able to help others with information I accumulate over time.
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Situation: Walter, husband, 44, cerebral hemmorhage 6/27/90, he was in coma for 3 weeks, trach, PEG tube, etc. sent home for good 10/11/97. He's recovered beyond their wildest expectations. He can drive an adapted car, speech is still not good, right side paralysis. Emotional, cognitive defects remain. He does volunteer on the local hospitals rehab ward most days.
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Owen, son, 19, mva 6-2-95. 6 weeks in coma, 2 months in rehab. anoxic BI, shear injury, mid-brain and brain stem most affected. Considered high function w/ some physical impairment to left side due to tone. slow speech, but very cognitive.
Owen went to sleep and rolled his truck, was ejected and lay in a field for 2 hours before he was found. He finished high school post injury and is now attending college, still living at home. Driving a car again which is my nightmare. Looking for ways to reduce the tone so he has better mobility and balance. Hope this is what you have in mind. If not, just let me know and I will fix it.
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Tom & Lydia Larremore
Email : AFO@webtv.net
Daughter Melanie Wright post tbi 2/yrs. April 14 1995. Suffered severe closed head injury not expected to live thru the night after being thrown out of a truck early that Good Friday morning. Melanie was the passenger. She was in a deep coma for 10 days with no response whatsoever.
After 10 days she just laid with her eyes open looking at the ceiling. No response to anything. October 95 started responding and spelling her responses to us on a sheet of paper we had written the alphabet on. She remembered all of us except she had a bad case of short term memory.
After 1 1/2 years of nursing homes, doctors decided she didn't anything else except to come home. We brought her home and our lawyer found a rehab center in Austin Texas where she was accepted and sent for extensive therapy that she had not ever had. In just 4 months there was tremendous improvement with this extensive therapy but we had to bring her home because we ran out of money. This was on a self pay basis and our small rural community had raised monies for her to go there plus the $30,000 that had been awarded to Melanie from the insurance companies, being the driver's and ours. Now we are waiting for Medicare to start in October for more therapy in Texas. We will see how that turns out.
Tom & Lydia Larremore
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Overland Park, Kansas
Loved one: Rob
When TBI: July 1993
Motorcycle accident, his fault, hit a tree, severe right side and brain stem damage. His present condition is he walks with the assistance of a gait belt, very little use of right arm, very limited in his ability to read due to tracking problems, talks but is difficult to understand, has almost no motivation, his lots of memory problems but continues to improve, is totally disabled but we hope to find some kind of limited work for him soon. He is happy, fun to be around, very, very affectionate, but is also very literal. If you say a minute, you better be ready in a minute.
I really don't know if this is way too much, but feel free to edit this however you want to. This is a wonderfun thing you're doing for all of us.
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Breanna (Bree), daughter, 12, TBI 8/18/94, still in Glascow level 2, eats normal food, no speech but mimics sounds, some communication via facial gestures and right hand use of button switch. Bree was hit by a van while riding a friend's new speed bike that had no footbrakes. She didn't know how to use the hand brakes. She was thrown 80 feet and landed on the back of her head on the pavement. She sustained a closed head injury with clots in the Midbrain and Thalamus and then received secondary anoxic injury from the swelling throughout the brain, total loss 30% of the mass of her brain.
We brought her home at 8 months post due to home remodeling and she was still in level 4 (non-responsive). We started a volunteer driven therapy program six days a week that is administered through "A Chance to Grow" organization in Minneapolis. We have 100 volunteers who work on Bree every week doing patterning and several other physical exercises that keep her fit and constantly stimulate her. She has a 72 degree scoliosis that is now being treated by a TLSO (body brace) when she's not in therapy. We are doing the final tests for the Interthecal Baclofen Pump on 7/31/97 and will be scheduling surgery for the pump insertion soon thereafter. This is for ongoing muscle spasticity.
Bree has become a delight with a sly grin and outright smile when she's teasing or enjoys the humor in something. She has become very adept with her right hand and we're ordering a communication board that will be used by a speech therapist, her home-bound school teacher, and her family to help her be able to get her thoughts out finally. She's still boy-crazy and will track a boy all around a room!
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Donna M. Wolff
Situation: Husband, Rob (now 50),anoxic brain injury due to cardiac arrest in his sleep Nov 93. Cause of arrest is unknown. Doctors have settled on a "mystery" virus. Has a defibrillator. Coma for two months, hospitalized for six months , facility for brain-injured adults for another six months. I brought him home in Nov 94. On the Ranchos scale he is mostly 6 with some 5. He requires 24 hr care (an attendant cares for him while I'm at work) and from moderate to maximum assistance with all activities of daily living. He can talk, eat (with some swallowing difficulties), walk a little with a walker and an attendant, and see a little (his field of vision is 20 degrees). He retained bits and pieces of his long-term memory. His short term memory seems to be non-exsistent. My primary concern now is perseveration. General Bio: Rob has Ph.d in astrophysics. At time of cardiac arrest was senior scientist at Apple Computer specializing in visualization. Typical type A profile, published fiction and non-fiction author, musician (we have a recording studio at home),and athlete (scuba, golf, tennis, ice hockey).
We have been married for 16 years and have two children, Tricia age 10 and Sam age 5. I manage the group of people at JPL who develop the future missions for NASA's planetary program.
Donna M. Wolff
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Daughter Kristy, age 15, MVA TBI 5/10/97. Her injury was extremely severe. She had surgery that night to remove a blood clot from the left temporal lobe. We were told that she would not survive and that her left temporal lobe was "obliterated". She also had small blood clots in her frontal lobe and cerebellum, as well as diffuse brain injury. No other injury to the rest of her body.
She spent 9 days in ICU, the first 5 leaking cerebral-spinal fluid. Her ICP was high, ran high fevers, developed pneumonia. She was on a vent. She had all the tubes and was unresponsive. She was posturing. Her right pupil was dilated and the right eye was off in a totally different direction.
She was then transferred to neuro IMC where she spent the next 3-4 weeks still unstable. She was weaned from the vent but had to have a trach inserted. She also had a G tube inserted. She developed MRSA, a hospital acquired staph infection, and had more pnemonia. She pulled out 3 foley catheters, IV's, and an endotracheal tube. Her respiratory status was touch and go for a long time.
Finally she was considered medically stable and going to survive, and was moved to the rehab unit. She had one-on-one care the entire 2 months on rehab. She was in a Craig bed at first, then a Vail bed. She went through an agitated, irritable stage for about 6 weeks where she was alert but not really aware and assaulted everyone.
All of a sudden one day, around the end of July, she smiled, laughed, and recognized us. She "woke up". She gave hugs with her strong left arm, and started to eat a little bit. Now she is home and attending outpatient therapy at a head injury clinic 3 days a week. She is strong enough to walk but does not have the balance, so is in a wheelchair. She is still fed with a G tube, and only takes milkshakes and soup by mouth. She understands everything going on around her, but cannot speak at all. She can play cards - Uno and War, but nothing more complicated than that. She is continent all the time now. She has had a major personality change from her former self - for the better, in her case. She now has empathy and concern for others, and is very loving, which she was not like before. She is usually happy and content but going through normal grieving because she is realizing her losses. She takes Dilantin, Ritalin, Zoloft and Reglan.
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Hi, I would like my story to be put so that all can read, so if there is anyone out there with a near drowning child, that we could talk.
Bobby and his twin sister drowned two years ago on Easter Sunday 1995. We lost Tasha that day, but Bobby is fighting the fight of his life. Bobby lives with his grandparents and is showing the Doctor that there is no word as impossible.
We have come a long way, but still have a long way to go. We do alternative Meds and have found that it really helps Bobby. We do cranial scaro therapy, acupressure therapy. We are also using herbs for Bobby. We have him off most of the medicine that the doctor sent him home with. Would like to talk to anyone who has a BI child, or a near drowning child.
Update: March, 1998
Well, it has been almost Three years since our world came tumbleing down on us. We have made alot of improvments since the accident. We have Bobby of off all his Medicines, except his Dantruim. We came home on sixteen. It has been a long hard road, but we have done it.
We have had tendon releases, a case of RSV., and a case of the good old flu. But we have won all of those battles. We started with a Org. called A Chance To Grow, out of Mpls. who gave us the chance see a light at the end of the tunnel. We also use them for our PCA services, they have also given us the hope that know one else would even thing about.
Bobby is eating soft foods, like puddings, mashed taters, and Cream of Wheat. We do a ROM excercise program on Bobby for three to four hours per day, and we also doing speech therapy three times a week, and physical therapy once a week out of the home.
Bobby is doing GREAT with the speech therapy. We have him working a (Big Mack) talking switch with his left and right foot, and also some with his right hand. This is being done on command. This was a BIG break thru for us, because we now know that we have both side's of the brain working together.
Bobby is also trying to say some words, like thanks, we just get the "th" but it's better than no sound, and we are also getting ma. We have also started to use Subliminal tapes with Bobby, and they really do help him relax alot more. I know that with all of our hard work that we as a family can keep moving onward and upward, to help our little Bobby become all that he can be.
I also want to say that without this list that I know that our walk would have been much harder. Thanks again for being there for us. You will never know how much it has meant to have someone to talk to, someone who understands.
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Hello, my name is Cher. My husband, Gene and I have two daughters. Bree is 18 and leaving for her first year of college. Her sister, Gwen, is 14 and will be a freshman in high school.
On March 8, 1996, I picked Gwen up from school and headed over to pick up her sister. I was in the office about 5 to 10 minutes and when I got back out to the car, Gwen looked to be asleep in the front seat of the van. I tried to wake her up. She didn't open her eyes, but was incoherent in her speech. She would not respond directly to me. I got Bree into the car and we headed to the Dr.'s office, just 2 minutes down the road. During that brief ride, Gwen started to vomit. I knew then that something was seriously wrong.
We pulled into the parking lot, and Bree managed to carry Gwen into the Dr.'s waiting room. The nurse called for an ambulance, which was just returning from a run, so they were there within 2 minutes. She was immediately transported to Columbus Childrens Hospital, which is about 20 miles from our town, Pickerington.
We arrived at the hospital about 3:30 pm and by 6:30 pm, a CAT scan showed a large tumor on the left side of her brain.Over the course of the next few hours, we learned that it was a tumor that had hemorrhaged, which was what evidently caused her to lose consciousness. To some extent, it was similar to having a stroke.
Plans were made to do surgery early Monday morning. During the weekend, she was in ICU and was very agitated in her movements. They were giving her medications to keep her brain from swelling and felt that there was no reason to do surgery right away. From the beginning, the nurses urged us to get as much rest as possible and encouraged us to go home to sleep. The policy was that a parent could stay all night, but if they fell asleep at the bed, then the parent would have to leave ICU. As we were 20 minutes away, we went home about midnight each night.
We were supposed to meet with the neurosurgeon on Sunday morning, 9 a.m. to discuss what surgery would be done, and give us a chance to ask all those questions we were starting to have. However, at 7:15 a.m., as we were preparing to leave for the day, the phone rang. There had been subtle changes in Gwen's activity level and they were taking her to surgery at that moment. I was the one to answer the phone. I don't remember doing or saying anything when the resident told me, just that he made the one comment that stuck in my mind. "Mrs. West, don't lose it now. Everything will be fine." The subtle changes we found out later from the ICU nurse, was that Gwen started to get lethargic and then quit breathing.
Surgery lasted about 3 hours and we finally were able to see Gwen about 1:30 that afternoon. She remained in ICU for another week, then was transferred to the surgery wing for another week. During that time, she was evaluated for acceptance to the rehab unit at Childrens. She was in rehab for 10 weeks.
Probably one of the worst moments of my life occurred when I walked into the ICU two days after surgery. They had removed the bandage from Gwen's head. I was not prepared for the incision. Since we never had that talk with the neurosurgeon, and the resident had drawn a picture for us as to where the tumor was, and how he briefly explained what they would be doing, I just had assumed that the incision would be on the side of her head and not very large. Maybe a small circle. What was reality was her head was 2/3 shaved and the incision was a large question mark that started at the top center of her head, moved to the back at a left slant, then looped back around to in front of her ear and ended just at the hairline in front of her ear. And such big black stitches!
Looking back, I have to say that all the doctors and nurses at Childrens were really positive. They all kept saying how Gwen would recover, though they prepared us well for any possible speech or communication problems. Never did anyone think or say that Gwen wasn't going to recover and walk out of there. But what they didn't say was what has hurt us the most. As we progressed through the rehab process, it was becoming evident that there were changes and problems with Gwen that we were not prepared to handle. A neuropsychologist was working with us and her. He has done a lot to help us ever since then, but looking back, I believe everyone was skirting around the issue of TBI and the affects on the person and the family. When we finally brought Gwen home, I was not prepared for the violence and aggressive behavior. Those first 3 months were a nightmare. I didn't know what to do, how to do it, and was struggling with the thought that we would have to have Gwen placed in some sort of facility.
Luckily, I found the CARE-TBI list. What a godsend! Just at one of my lowest moments, thinking that I was alone dealing with this child, I discovered a group of people who had experienced many of the same things I was going through. The list has provided me with information and support that I could not find anywhere else. It also allowed me to start pushing myself to asking for answers to questions that I had been holding back. When I was a witch, the group was there for me, when I'm blue, all I have to do is read some of the postings and I know I'm lucky.
Now we are dealing with the behaviors and cognitive problems that most TBI survivors have to deal with. And this will be a long road. TBI is a way of life and this group is helping each other to forge the way and show others that this lifestyle doesn't have to be a burden to carry alone.
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Megan Silvey, daughter, age 15, sustained severe TBI due to MVA caused by drunken driver on 6-21-90 when she was eight years old; comatose in excess of six weeks; she is high functioning now.
Bio: I'm a single mom raising Megan in a suburb of Kansas City, Missouri.
Megan sustained a severe traumatic brain injury, multiple fractures and BI due to anoxia. Her lungs collapsed and her heart stopped in-flight, but she was resuscitated by the LifeFlight crew. In the ER Megan was given massive doses of a diuretic, placed on a ventilator, given Manitol to chemically paralyze her and taken to surgery for the placement of the ICP monitor. Upon admission, Megan's coma was rated 3.
I was told her condition was very critical, others were told she would probably not make it through the night. A priest came to her side and performed the Sacrament of Extreme Unction, more commonly known as The Last Rites, a Roman Catholic sacrament given to those who are dying. I kept telling everyone I wanted to be with Megan when she woke up, and a medical student who witnessed the crash and returned with us to the ER later told me that it was so sad to hear me say that...that no one thought Megan would ever wake up.
She ran extremely high temperatures, developed sepsis, phlebitis and a bleeding ulcer during her first week in PICU and it was still touch-and-go. After the roller coaster ride of the first week post-TBI, her ICP readings and her temps settled and we were told she would probably live, but it was not known what quality of life Megan would enjoy, that she may never again be able to walk or talk, that she might remain as she was, in a coma, for the rest of her life.
Three weeks later Megan had been weaned from the vent and stabilized enough to be flown in an air ambulance to the rehab hospital back home.
The initial rehab hospital assessment stated that Megan would probably be able to sit up on her own in a wheelchair within six months from her admission there, which was July 16, 1990. On August 24, 1990, she was released from in-patient care to day patient status; on September 21, 1990, (my 35th birthday!) she was completely released from the rehab hospital. Spectacular progress!
We were totally unprepared for the real world, however; the hospital did not provide any school re-entry program at all nor was I told about the cognitive difficulties, mood swings, depression and violence which often accompanies TBI. Megan became so violent toward me at times that I had to hold her on the floor to restrain her. I have scars on my arms from where she had clawed me with her fingernails.
Megan has learning and behavior problems she never had before. If one looks at her school records one would believe the records of two different children got mixed up.
Meg's suicide attempt in 1996 is attributed to her problems with impulsivity and disinhibition. However, she can be a very loving and caring person despite all the other problems.
It indeed has been a long road full of potholes, bumps, seemingly insurmountable hills, switchbacks, detours and some smooth, lovely, placid stretches as well. I'm thankful to all of you who travel this road with me.
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Michael and I were living together and engaged for about 2 years when the accident happened. On October 8, 1992, Michael was erecting the steel structure of an Ikea Wharehouse when the steel collapsed from underneath of him. He fell 4 stories, or approximately 40 feet. His injuries were as follows: Left temporal and right frontal contusions to the brain, subarachnoid hemorage, frontal and maxillary sinus fractures,cheek bones fractured, fracture of the left orbit (eye socket), fractured right forearm, both radius and ulna, degloving injury to the left forearm, pelvic bone dislocated and shattered in several places, hip sockets fractured, and left heel bone completely shattered. He arrived by helicopter at Cooper Medical center in NJ sometime around 1 o'clock that Thursday afternoon.
His conntecting partner called me from the hospital and said that Michael broke his arm and I would need to come pick him up. I knew it was a little white lie. So I head for a place I've never been before in my 1964 Falcon stationwagon (man do I ever miss that car!). The whole way there I tried to prepare myself for the worst, yet I didn't want to believe that it was anything other than a broken arm. After what seemed like an eternity in the lovely city of Camden, asking 3 of the safest looking people I could find, I walked into the hospital and to the nformation desk. I told the woman I was there to pick up Michael McCaffery and she said, "There must be some mistake, I don't think you'll be taking him home for a while." And sent me through the maze to the place where I might find out more information.
I had never seen Michael's connecting partner before, but when I saw him crying in the corridor, I knew right away it was him and began crying myself. I never expected to hear the horror of what happened to him. I hurt and ached all over for the pain Michael was enduring. When I finally got to speak with a doctor, the first question she asked me was if he had a living will. That really made it all sink in.
I didn't get to see Michael until 11 o'clock that evening and he was completely unconsious. When he arrived at the trauma unit his Glasgow scale was a 9, but he dropped to a 5/6 soon thereafter. During the next 2 weeks he was operated on 6 times. First was the eye socket which they put plates in. Next, they made an insicion across the top of his head, from one ear to the other, and literally pulled his face off to repair all the sinus fractures and cheekbone fractures. Next was his right
arm, steel plates. Then his heel, now constructed of steel. Last, but almost the hardest aparatus for me to deal with at the time, was this enormous triangular external fixator coming out of his hip bones and protruding out about 1 foot. Approximately one week after the final surgery, he was diagnosed with a subdural hematoma and they drilled a hole in his skull to extract it. This is when his progress began.
He was transferred to a Brain Injury Rehab in November 1992 and remained a patient there until March 1993, when he became an outpatient. He attended the rehab until May of 1993. He remained a level 5/6 coma for about 6 weeks and another six weeks emerging from it. He didn't become fully aware of his situation until after Christmas of 1992.
When he finally came around and was claimed mentally competent, he and I married on one of his weekend passes from the rehab. We both felt threatened by his mother's insistance on petitioning for power of attorney. She was secretly fixing up a room for him at her house and deliberately excluding me from meetings with the doctors. I can look back now and say we married in haste because of this, but I was not aware of the subtle changes that would surface months later.
He has come a long way since the days when he couldn't remember who I was, couldn't read, couldn't write, couldn't walk, etc. He is now attending college full time and receiving A's and B's. His intelligence was not affected by his injury, but his emotions and behaviors were.
He was sent home from the rehab and told he was "fully" recovered and there was nothing more they could do for him. I'm both angry and sad that no one told me I'd likely deal with his depression, mood swings, memory loss, inappropriate social behaviors, increased aggitation and frustration,illogical thinking processes, and general lack of affect. I'm angry that they didn't send him home to me with some type of resource, like the number for the BIA, or even the acknowlegement that such an organization exists. Perhaps this information was given to his mother, and since I was just considered chump change, it didn't seem to matter that he was coming home with me. Our after care needs were ignored, and in my opinion, the homecoming was the hardest part of this entire ordeal. The only thing I was ever told about his brain injury is that his personality would likely be different. WHAT AN UNDERSTATEMENT!!!!
There was a time when I thought I might be absolutely insane regarding Michael's changes. Then I stumbled upon this list and found, for the first time, comfort and complete understanding. We here know more than the doctors, more than the therapist, more than the insurance companies. We live and learn from it everyday. The things I've learned about brain injury will haunt me forever. One of my greatest wishes is that I will see Michael in heaven and he will hug me and tell me he understands.
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Situation: 46 y.o. husband. We have been married for one year. Steve is my soulmate, best friend, companion - everything we ever wanted we found in each other. Tuesday eve, August 26, 1997 a day I wish I could forget, because I wish it was a nightmare and I could wake up. My husband fell off his horse, landing on his head on a rock. He lost consciousness for five to ten minutes, got up and came home. He seemed a little out of it, and wasn't sure about the details of the accident. At that point, I didn't know he had lost consciousness. He said he was ok, and refused to go to the hospital - very typical of him.
In the weeks that ensued , he was plagued by severe headaches that were not relieved or even touched with 800mg of motrin, he had nausea, vomiting, dizziness. We knew it was a concussion. he refused medical treatment. His symptoms did not abait. It seemed like he turned into a wild and reckless teenager overnight. He wrecked his car and called me at 8pm one weekday night to pick him up. He was 5 hrs. from home. He wasn't injured. He started drinking alcohol to self-medicate his headaches, this was happening with increased frequecy. He was going to work, would call me when he was about an hour from home, because his headache was so bad, he couldn't drive the rest of the way home. He was having memory lapses at work. I finally convinced him to go to the E.R. and get a CT scan of his head. It was negative.
His gait, I noticed, was a little off, especially when he was tired. He was very argumentative. We never used to fight, we'd always discuss things. What was going on? I was in a whirlwind - I had no clue about what was going on. I felt like he had turned into an alcoholic overnight.
He seemed depressed, and was getting into all kinds of trouble. I took him to a neurologist one month after the injury, and that was only because he couln't take the head pain anymore that he was finally willing to go. The neurologist diagnosed him with mild traumatic brain injury, ordered some mild headache medicine, told us patients frequently get depressed with this, that many of them can't work, and that he would like to follow up in one month. I asked the doctor to please give my husband a note not to go to work. I was very worried about him, and he had been refusing to stay home, for fear that he'd lose his job.
After a few days at home, he started to realize how sick he really was. He became more depressed, and was admitted to a psychiatry unit for depression. They then diagnosed him as being an alcoholic. How can a 46 y.o. who never had a drinking problem in his life turn into an alcoholic overnight? I was so upset and confused. He saw a neuropsychologist who did some testing, but didn't get to the bottom of it, and never talked to me to find out what Steve's baseline was before the head injury.
He came home 6 weeks later. He started acupuncture hich really helped his headaches. I went online and found out about TBI, got the name of a Neuropsychologist who is an hour away, and took Steve to see her. She was wonderful. She understood what we were going through. Steve has poor judgement (I won't allow him to use the stove when I'm not home) he has poor impulse control, difficulty with numbers, dialing the phone, is a bit ataxic, at times, his memory is impaired, he has lost all of his coping skills, and is very concrete he is no longer able to think on an analytical level. He is quite simple- minded now.
When he first came home from the hospital, he would follow me around the house and repeat the same story at least five times. I tried to be patient, but it was driving me crazy. He would also ramble, and interrupt my daughter when she was talking. What a change in his personality. He was also needy and self-cenetered. He was very independent and selfless prior to his head injury. He has also lost his sense of humor. The neuropsychologist said that all of these things are from the tbi, they were all to be expected. She said his drinking was very common, too. She told us he should absolutely not be working or driving.
The hospital had told him he coud return to work and all other duties when he was discharged! I knew they were missing something, i just didn't know what to do. He hasn't had a drink in three months, and has no desire for one. He is very depressed, partly because he now realizes his deficits, and partly because that's part of tbi, and mostly because he cannot return to work. He is an administrator and also a physician assistant. He loves emergency medicine. You have to think very fast for that. He can't right now. He also used to be on the national disaster team - desert storm, oaklahoma city bombing - he was there helping the victims. He can't do that either.
It has been four months since the injury. I definitely see improvements. He did so much for so many people, I pray and hope that he will be able to do that again. I quess we all suffer in life, at different times and in different ways. I quess we should be grateful - things could always be worse. We are hopeful that with cognitive rehab and biofeedback, he will again be able to be in crowds, go to parties, work, drive, ride his horse again. I know that he will never be the same as before the injury, but I will and do still love him very much. I wish there was some way of educating the world and the doctors about TBI. He really slipped through the cracks of the medical system, which could have cost him his life, as mild tbi patients are in great danger of another injury because of their impaired judgement, balance, etc.
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