TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury’

SPEAK OUT! Guest Blogger Joel Goldstein

SPEAK OUT! Guest Blogger Joel Goldstein

What Veterans Need………….and Deserve

 

Boy Blogger thChristmas 2001 my wife and I were plunged into a parent’s worst nightmare – a car accident resulting in our teenager’s traumatic brain injury.  After a month long coma, he gradually emerged with severe and disabling cognitive, emotional and physical deficits.

Eight months of grueling hospital therapies and the school district agrees with the hospital – Bart is not ready to return to class and would be better served by placement in an institution. We railed against warehousing our 17-year-old son in a convalescent home and fought time and again to win Bart a chance to struggle, heal and progress.

We were determined to keep the bar up, set with difficult, but attainable, goals, and then raise the bar again and again. Who knows for sure how far anybody can go? It takes a little faith. These officials were not mean-spirited so much as driven by economics and statistical models of probable outcomes, without taking into account the character of the boy or his family.

We began exploring nonconventional therapies, cobbling together an unofficial “medical board” of trusted physicians. “Members” didn’t know each other or that they served on a “board.” If we found a promising therapy, we’d ask each of them whether it might do any harm. Some exciting approaches failed this Hippocratic test. Eventually we tried several therapies. Though harmless, some proved useless too. Others, including hyperbaric oxygen (HBOT), craniosachral therapy (CST), neurofeedback and high doses of Omega-3 fish oils, were remarkably successful, gradually transforming Bart’s life prospects. Successes were anecdotal, but a neuropsych exam several years after the accident reported that the examiner had hardly ever seen such improvement in someone so severely injured.

Today, with high school and even a semester of college under his belt, and a couple of years of cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own apartment. How different the outcome had we heeded the advice of well-meaning busy bureaucrats. Brain injury is far and away the leading cause of death and disability in young people. It leaves roughly 2% of the population permanently disabled, yet remains a stubbornly invisible epidemic. With the controversy surrounding concussions in sports and TBI, the signature injury of this generation of wounded warriors, that may be finally changing.

TBI will remain a tragic legacy of wars in Iraq and Afghanistan for a lifetime. According to the Woodruff Family Foundation Remind.org, there are 320,000 TBI survivors among combat veterans. Today the elements of the VA and DOD are experimenting with HBOT for severely wounded warriors. Sheer weight of numbers presents a unique opportunity to improve outcomes for survivors, military and civilian.

Like other nonconventional therapies that helped Bart, HBOT is relatively safe, inexpensive, easy to deploy and scalable. For the cost of a couple of F-16 fighters, one could outfit and staff 300 TBI treatment centers in existing VA and DOD facilities around the country. Technicians and therapists can be trained to deliver HBOT in months, not years; medics, corpsman, LPNs, and EMTs are all suitable candidates. As an alternative to setting up centers in VA facilities, one might issue vouchers directly to veterans’ families. Private clinics should spring up to meet the demand.

After wounded veterans have been treated, centers could migrate to the civilian sector, helping the wider fellowship of TBI survivors, most of whom have no access to these treatments. Thousands might leave nursing homes, cut back on their meds and live more fulfilling lives. Nothing we could do for so little could ease the suffering of so many.

Scientific proof is still the gold standard in medicine, but in its absence what risk is there in trying alternative therapies with well-established safety records? (Divers have safely used HBOT to prevent the “bends” for 200 years.) Of course, nothing is 100% safe and effective, not even aspirin or acetaminophen. In much of Europe, HBOT is already standard treatment for TBI. The obstacles to adoption here seem to be more bureaucratic – doctors, hospitals, the FDA and insurers have yet to sort out reimbursement protocols.

For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Best practices of conventional medicine only take us so far, often ending at the nursing home door or heavily medicated at home, facing long empty hours and overwhelming family resources. Survivors are already more susceptible to a number of conditions, including Alzheimer’s, Parkinson’s, suicide and subsequent TBIs. To do nothing – to ignore safe alternative therapies – is to make a decision fraught with risk. Faced with this existential dilemma, we chose to try for a better outcome. Military families of wounded heroes, who have already sacrificed so much, deserve no less.Joel Goldstein & Bart

 

Joel Goldstein, author of No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury, Potomac Books, has written about TBI for Exceptional Parent, Brainline.org, Adoption Today, and Military Special Needs Network. To learn more or to contact Joel: www.tbibook.com.513KpXRBWqL._SY344_BO1,204,203,200_

 

Thank you, Joel.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

SPEAK OUT! NewsBit . . . . . . . . . . . Rapid Transit for Some TBI Survivors?

Rapid Transit for Some TBI Survivors?

Newsboy th

Some TBI survivors have a walking disability that causes them to walk slowly. My husband does, but the primary reason for him is lack of balance. He could walk faster if he could hold onto something (or someone). Available this summer, a new product from Japan might help. It’s a tricycle scooter that is powered by an electric motor and can go up to 15 mph. The electric motor is charged by a standing rider stepping on special pedals. Note the handrails, which will provide a balance aid. Don’t forget to wear a helmet! (Full story)

 

Caregivers SPEAK OUT! Diane Caldwell

SPEAK OUT! – Diane Caldwell

by

Donna O’Donnell Figurski

1. What is your name? (last name optional)Diane Caldwell

Diane Caldwell

2. Where do you live? (city and/or state and/or country)     Email? (optional)

Columbus, Ohio, USA     ladydi147@yahoo.com

3. What caused your survivor’s TBI?

Car accident – Sept. 24, 2010

4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?

I started caring for my daughter after she was sent home from Dodd Hall, OSU, an In-patient rehabilitation facility, in December 2010. I was 53 years old. My daughter was 28.

5. Were you caring for anyone else at that time? (e.g., children, parents, etc.)

Yes. I was caring for my grandson – my daughter’s son.

6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?

Yes. I was employed and somehow managed to keep my job, mainly because I have had the same employer for a 20-plus years. My daughter still required 24×7 care, but I was able to work from home for about 6 months until she could be left alone at home. She was bed-ridden and wheelchair-bound during that time.

7. Did you have any help? If so, what kind and for how long?

No. Occasionally her brother would stay with her while I went to the store, but her behavior was a little scary to him (i.e., she would be talking coherently one minute, and the next she wouldn’t know who he was).

8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)

Immediately. She was life-flighted from the accident scene and was on life support in critical condition for several days. I went to the hospital daily.

9. Was your survivor in a coma? If so, what did you do at that time?

Yes. I went to the hospital every day, but at that time, the doctors thought she had a slim chance of making it. I still cared for my grandson. I prayed.

10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?

Yes. She had In-patient rehab (occupational, physical, and speech therapy), and then she had Out-patient rehab when she was sent home. Her rehab totaled about 5 months. I usually went with her to her appointments, as she required special transportation (due to the wheelchair) and was often left waiting for a return ride home. She was afraid to be left alone.

11. What problems or disabilities of your TBI survivor required your care, if any?

Short-term memory problems, emotional swings and instability, suicidal actions, personal safety issues

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

My life is just different now. Some things are better, some things worse.  My life changed dramatically, as I was living alone previously. We walked through some dark days together, so it was very rough at first. My daughter’s personality changed, and her IQ dropped into the mildly retarded range. My daughter knew she was not who she used to be, and she didn’t embrace who she was after the accident for about 18 months. Today, my life is better. My relationship with my daughter has reached a depth most people never get to experience. I learned a lot about myself too, and I became a much more spiritual person. I believe in miracles!

13. What do you miss the most from pre-TBI life?

Time to myself, freedom to travel

14. What do you enjoy most in post-TBI life?

Sleeping!

15. What do you like least about TBI?

How it impacts relationships. For a while, I felt like I lost my daughter, even though she was alive. Everyone works through it differently.

16. Has anything helped you to accept your survivor’s TBI?

Yes. I got connected with OSU TBI Network.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes. My daughter and grandson live with me and rely on me as a result of the TBI. It’s like being a single mom again.

18. Has your social life been altered or changed and, if so, how?

Yes. I am unable to attend functions where I will be away overnight. I don’t like leaving my daughter alone since she started having seizures.

19. What are your plans? What do you expect/hope to be doing ten years from now?

I guess I don’t really think about that too much. I would like to be retired by then and do some fun things with my daughter and grandson.

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?

Don’t isolate yourself! Learn as much as you can about TBI. Reach out for help. (I didn’t do that enough.) Be patient, loving, and caring. Take it one day at a time.DIane C. daughter

 

Thank you, Diane, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

 

If you would like to be a part of this project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Photo compliments of Diane.)

Disclaimer: The views or opinions in this post are solely that of the interviewee.

Survivors SPEAK OUT! Joyce Hoffman

Joyce Hoffman – Before her TBI

SPEAK OUT! – Joyce Hoffman

by

Donna O’Donnell Figurski

 

1. What is your name? (last name optional)

Joyce Hoffman

2. Where do you live? (city and/or state and/or country) Email (optional)

New Jersey, USA

3. When did you have your TBI? At what age?

April 8, 2009

4. How did your TBI occur?

Hemorrhagic stroke, i.e., a blood vessel erupted

5. When did you (or someone) first realize you had a problem?

I started to convulse at 4 am. My partner saw it, and he called 911.

6. What kind of emergency treatment, if any, did you have?
(e.g., surgery, tracheotomy, G-peg)

Tracheotomy

7. Were you in a coma? If so, how long?

Yes. 8 days

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?
How long were you in rehab?

In-patient rehab for 15 weeks, and then Out-patient rehab 2 or 3 times a year

9. What problems or disabilities, if any, resulted from your TBI?
(e.g., balance, perception, personality, etc.)

Right-sided weakness. Paralyzed arm. I use a quad cane for walking.

10. How has your life changed? Is it better? Is it worse?

Better—I wrote my 2nd book, “The Tales of a Stroke Patient,” with one hand, all 265 pages, within 2 years.

Worse—I miss my career as a senior technical trainer and writer for legal applications, and I go slowly now – one step at a time.

11. What do you miss the most from your pre-TBI life?

Total independence

12. What do you enjoy most in your post-TBI life?

Reading and computing

Getting together with friends and family

13. What do you like least about your TBI?

My speaking slowly when I want to talk faster

14. Has anything helped you to accept your TBI?

Time heals all, but I’m not completely there yet.

15. Has your injury affected your home life and relationships and, if so, how?

My partner had to take over, whereas I did most everything domestic before.

16. Has your social life been altered or changed and, if so, how?

A few friends remain. Most of them headed “for the hills.”

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

Cece is my main caregiver. She understands my dilemmas.

18. What are your future plans? What do you expect/hope to be doing ten years from now?

Doing the same thing I am now—plus more time for lectures

19. What advice would you offer to other TBI survivors

Patience

20. Do you have any other comments that you would like to add?

I am starting to NOT resent people who have the ability to go the beach or to run fast. I used to be a runner. My book tells it all. Click the link to buy it

The Tales of a Stroke Patient (from the publisher)

The Tales of a Stroke Patient (from Amazon)

The Tales of a Stroke Patient (Barnes & Noble)

 

Joyce Hoffman - After her TBI

Joyce Hoffman – After her TBI

Thank you, Joyce, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

 

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

SPEAK OUT! NewsBits . . . . . . . . . . . . Could This Help TBI Brains?

Newsboy thA new study by Stanford scientists has shown that blood from young mice can improve brain function in old mice. This simple experiment produced a surprise result. The scientists haven’t identified the factor (or factors) yet, but it is inactivated by heat. Earlier work from this lab showed that, after receiving blood from young mice, old mice produced more nerve cells than they did previously. One of the scientists formed a company to look at therapy for brain dysfunction, including Alzheimer’s Disease. (Full story)

 

Two soon-to-be-published studies by Harvard scientists show that GDF11, a protein found in both mice and humans, can improve muscle and brain. One idea is that GDF11 improves blood flow. Another idea (not necessarily exclusive of the first idea) is that GDF11 helps stem cells. Stem cells from muscle can form new muscle cells, whereas stem cells from the brain can form new neurons. Both muscle function and brain function were improved in old mice after GDF11 injections. Maybe the result of this research will be new therapeutic drugs for humans. The scientists are hopeful that funds will be available for establishing pre-clinical trials to test GDF11 in humans. (Full story)

Caregivers SPEAK OUT! Trish Herzog

SPEAK OUT! – Trish Herzog

by

Donna O’Donnell Figurski

Herzog Trish 042314  photo

 

 

1. What is your name? (last name optional)

Trish Herzog

2. Where do you live? (city and/or state and/or country)     Email? (optional)

Platte City, Missouri, USA         herzogtrish@gmail.com

3. What caused your survivor’s TBI?

An auto-racing accident

4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?

June 6, 1998     I was the main caregiver.     I was 33.

5. Were you caring for anyone else at that time? (e.g., children, parents, etc.)

No

6. Were you employed at the time of your survivor’s TBI? If so, were you able to continue working?

No. I was a housewife.

7. Did you have any help? If so, what kind and for how long?

Yes – in-home caregivers for 11 years, until my husband passed away in 2009 as a result of complications from his TBI.

8. When did your support of the survivor begin? (e.g., immediately – in hospital, when survivor returned home, etc.)

Immediately – in the hospital

9. Was your survivor in a coma? If so, what did you do at that time?

Yes – for 6 days. I cried, prayed, journaled, and read books and pamphlets about TBI to educate myself about the condition as much as possible.

10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab

In-patient for 3 months

Out-patient for over a year and off and on, as needed in the years

Where were you when this was happening?

I was with my husband during most therapies, except for speech. They suggested against my being there, as I was too much of a distraction for him. He didn’t filter things as well after he suffered the TBI.

11. What problems or disabilities of your TBI survivor required your care, if any?

My husband was full-care. He was paralyzed from the waist down and remained in a wheelchair for the remaining 11 years of his life. He suffered memory issues and speech dysphasia issues initially. His motor skills were also affected. He had significant spasticity in his legs. He had a shunt put in due to hydrocephalus. He suffered a few strokes after his TBI over the years. We spent quite a bit of time in and out of the hospital for various infections and health issues

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

My husband died in 2009. I cared for him and managed his care in our home from 1998-2009. It was exhausting at times, but I wouldn’t have had him anywhere else. After he passed, it was quite an adjustment period for me. Losing him and losing the chaos of daily life, with therapists and caregivers in your home, was quite the change

13. What do you miss the most from pre-TBI life?

I missed our intimacy. We were still able to cuddle and be affectionate, but I became the stronger role in our relationship after he was injured. I missed my protector, my confidante, etc. We still had that together, but the dynamic was somewhat changed. He was still my best friend.

14. What do you enjoy most in post-TBI life?

I can’t explain how, because my husband was my best friend and we were so close, but, in the years after he was injured, we became even closer at deeper levels. We were in this together, and we fought the battles of day-to-day TBI life together.

15. What do you like least about TBI?

It took away the husband I loved and married and left me with a different one. I loved him just as much, but in some ways very differently.

16. Has anything helped you to accept your survivor’s TBI?

We saw humor in so many things on a day-to-day basis. You have to find the humor in the basic things. Our general positive outlook on life and love for each other helped us survive and thrive in the shadow of TBI.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

It changed our dynamic completely. I took on more of a motherly role with my husband. My parents, seeing everything I was dealing with and managing, developed a greater respect and appreciation for me as an adult and not just as their little girl. I was making life-and-death decisions and handling rather scary things.

18. Has your social life been altered or changed and, if so, how?

Yes. It was isolating, to a certain extent. Life moves on for others after the initial traumatic occurrence, but you are still dealing with the day-to-day of your new TBI life. The real friends and family will hang around. You find out who your diehard friends are.

19. What are your plans? What do you expect/hope to be doing ten years from now?

I am doing it now. As I said, my husband died in 2009. I have been rediscovering who I am for over four years now. It’s still a process. I was a caregiver for so many years. It was who I was, and when he passed away, my entire purpose and reason for existence went away too. I had to figure out what I wanted to do with my life and re-invent myself…solo. It’s an ongoing process.

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?

You have to take care of yourself. If you are going to be in it for the long haul, respite is a must! In the years of dealing with a loved one with a TBI, there were ups and downs, sadness, laughter, eureka moments, and exhaustive moments. It was all worthwhile, every minute of it. I am a far better person today because of the hand my husband and I were dealt back in 1998. I have a much greater appreciation for many things we often take for granted – life, love, health, all of them. I miss my husband, and I wish I still had him with me…TBI or no TBI.

 

Thank you, Trish, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

 

If you would like to be a part of this project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Photo compliments of Trish.)

Disclaimer: The views or opinions in this post are solely that of the interviewee.

TBI Tales: …………………………………. A Fork in the Road to Recovery

(Reposted from my other blog – Donna O’Donnell Figurski’s Blog May 14, 2010)

A Fork in the Road to Recovery

I woke up a few weeks ago with an astounding revelation. (Aren’t they all?) But, this one really was. Though trying to sell my brilliant idea to my husband, David, would take some fancy footwork.

As our family and friends know, David is still on the long road to recovery after suffering a Traumatic Brain Injury (TBI) more than five years ago at 7:06 AM on January 13th, 2005. His TBI left his body compromised. His recovery is a balancing act – literally.

Though David’s balance has improved somewhat through the years, it is still seriously impaired. Each step David takes is deliberate, well-planned, and thought out. He is consciously adjusting his balance at every footfall. His brain constantly generates new neurons and reconnects the old in an attempt to reestablish alternate pathways to help him relearn what he already learned easily and quite well when he was a mere fourteen-month-old toddler. It’s amazing how those little tykes can balance atop their plump, squatty legs. Even more amazing that they can move them from place to place – but they do. And if they can do it … well so can David – right?

David works hard every minute of every day to relearn to walk. It’s not as easy as the two-year-olds make it look. So I had an idea to make the process easier – at  least, I hope it will.

The germ of my idea was unwittingly sown in October 2009 when I first began my salsa lessons. I admit, it was a slow-growing seed, since it took six months for it to finally hit me over the head.

On a recent morning as I pondered my first days of salsa, I recounted how difficult it was for me to make my feet and my body go where my instructor guided. He made it look easy, and I wanted my mind to comply, but my feet simply would not cooperate. I tried and tried, but the only thing I was successful at was tripping and stumbling over my own feet – not to mention my dance partner’s feet. I felt like a total  klutz. I was convinced I would never be able to do the steps. I would never learn salsa – let alone become proficient at it.  As the weeks went by and my instructor introduced the right and left turn, the hammerlock, and the cross-body lead, my mind went into swirl. No, I would never learn – I was sure of it. But, as more weeks passed, I did learn. It took time and it took practice, and after six months I can do each of those steps and I’m not too bad at it. I have even moved on to the advanced class.

What I understood on that morning of my revelation was that as I concentrated so intensely on learning each step, nothing else occupied my mind. I was entirely focused. During my lessons, it seemed that my brain rewired to accommodate the strange and foreign steps I was being asked to do. Realizing this, set the light bulb flashing. I reasoned that if my mind could overcome my dance challenge, why couldn’t David’s overcome his walking challenge?

That’s when I had my astounding revelation. It made sense to me. I had to choose the perfect time to present my idea to David, though I knew no time would be good. I knew that as soon as I uttered the words, I want you to take dance lessons. David’s immediately answer would be, “NO!”

So, I started my conversation like this … David, I have a really, really good idea. (I thought two reallys might be more convincing.) I need you to listen to my whole idea before you say anything. I don’t want you to make up your mind before I finish.” He looked skeptical. Well anyone would with that opening, but he nodded and I went on. “David, I want you to take dance lessons.” His immediate reply was “NO!” No surprise there.

I presented my ideas. He listened. One by one I ticked off all of the reasons that I thought dance lessons would be beneficial to him. He listened. I explained how I thought that the process of intense concentration might help him to overcome his balance issues as it had helped me to conquer my dance steps. He listened. I threw in the neurons and the brain-rewiring ideas. He listened. Then I told him I wanted to speak with my instructor to arrange for private dance lessons. I held my breath as I waited for his reply. He said, “Okay!”

It took a few weeks to set the lessons up, but last Monday night David had his first dance lesson with Oscar. I took the lesson with David. As we clung to each other, (He was holding on to me for dear life.) we waltzed around the room 1, 2, 3.- 1, 2, 3. Okay … so we didn’t really waltz around the room. We stayed in about a three-foot square. But at least it is a start!

When the lesson was over, I figured David would bolt. So I was really surprised when he asked to schedule the next lesson. He actually liked it. Yeah!

 

If you have a story to tell, please contact me at donnaodonnellfigurski@gmail.com

(Clip Art compliments of Bing.)

(Photos compliments of ME.)

 

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SPEAK OUT! NewsBits ………. Future TBI Therapy?

Newsboy th

 

 

Future therapy?  Imagine that a future surgeon can make a new neuronal circuit that will compensate for one damaged by a brain injury. New research by Chinese investigators has shown that liquid metal can allow neurons to communicate. (Full story)

 

SPEAK OUT! NewsBits ………………. Stem Cells from Teeth

Newsboy thStem Cells from Teeth Can Make Brain-like Cells

Exciting basic research from Australia could be relevant to TBI survivors. Scientists have isolated stem cells from teeth that can be induced to form neuron-like cells. Stem cells, which everybody has, have the potential to make new tissues and organs. Already stem cells are being used to repair damaged hearts in animals and to grow new cartilage in the laboratory that should eliminate joint pain in humans. It is thought that human life expectancy may be related to the number of stem cells in the body. The Australian scientists believe it is only a matter of time that the stem cells from teeth can be made into true neurons. The ability to insert into the body neurons or neuron complexes in the form of neuronal circuits could alleviate some of the problems brought on by TBI and stroke. (Full story)

 

 

Survivors SPEAK OUT! Julie


SPEAK OUT! – Julie

by

Donna O’Donnell Figurski

Julie Pre-TBI

This photo was taken on Julie’s 16th birthday – one month before her accident.

 

1. What is your name? (last name optional)

Julie

2. Where do you live? (city and/or state and/or country) Email (optional)

Atlantic Canada

3. When did you have your TBI? At what age?

 1995 (16 years old)

4. How did your TBI occur?

MVA (motor vehicle accident)

5. When did you (or someone) first realize you had a problem?

Right away

6. What kind of emergency treatment, if any, did you have?
(e.g., surgery,

tracheotomy, G-peg)

ICU (intensive care unit)

7. Were you in a coma? If so, how long?

Yes – 2 weeks or more.

8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)?


Yes – pain clinic, chiropractor, acupuncture, physio, massage, meditation, etc.

How long were you in rehab?

It has become a part of life…Keep your body and mind healthy.

9. What problems or disabilities, if any, resulted from your TBI?
(e.g., balance, perception, personality, etc.)

I have balance, perception, personality, and memory problems (to name a few).

There were physical, chronic pain, arthritic, and TMJ (temporomandibular joint)problems from the accident.

Epilepsy (grand mal and petit mal) formed 10 years later.

10. How has your life changed? Is it better? Is it worse?

I was 16, so I don’t know how my life would have gone. I know I had a plan for myself, and the MVA changed it all.

11. What do you miss the most from your pre-TBI life?

Feeling normal

12. What do you enjoy most in your post-TBI life?

My family and trying to stay positive

13. What do you like least about your TBI?

It changed everything about me… but on the outside I still look the same.

14. Has anything helped you to accept your TBI?

 After almost 20 years, I suppose time made me accept it.

15. Has your injury affected your home life and relationships and, if so, how?

 I lost friends. I became extremely moody, very hateful, and difficult for a very long time. My parents split shortly afterward. The accident was just the last thing to tip things over the edge for them. Depression and anxiety ganged up on me, and everything piled up, feeding off one another, leading to an unhappy life for a very, very long time.

 16. Has your social life been altered or changed and, if so, how?

 You name it…

 17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

 My husband and I work together. He helps me with learning, any physical obstacles, during/after seizures, and over the past five years or so things seem to have improved in many ways.

 18. What are your future plans? What do you expect/hope to be doing ten years from now?

 Working and enjoying life with my family

 19. What advice would you offer to other TBI survivors?

 No one knows what you are going through. No one knows how long it will last. Everyone has a different story. You are no less important than anyone else. You are still a person and still count.

 20. Do you have any other comments that you would like to add?

 Don’t let yourself get depressed. That dark place will take you nowhere fast and can keep you for a long time.

Julie Post-TBI

More recent photo. Post-TBI

Write about your feelings, draw, paint, sing, do anything you can…but be sure to get your feelings out and make peace with life and how it has gone for you.

 

Thank you, Julie, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

(Disclaimer: The views or opinions in this post are solely that of the interviewee.)

 

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

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