TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘short term memory loss’

Survivors SPEAK OUT! . . . . . Pam Richardson

Survivors SPEAK OUT! Pam Richardson

presented

by

Donna O’Donnell Figurski

Richardson, Pam McClurg 11. What is your name? (last name optional)

Pam Richardson

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

Louisville, Kentucky, USA    pamr1672@yahoo.com

3. On what date did you have your brain injury? At what age?

My brain injury happened in 2004. I was 46.

4. How did your brain injury occur?

I had a colloid cyst removed. It’s a benign brain tumor located in the third ventricle of the brain. Not much is known about a colloid cyst. It is thought to be something one is born with, but symptoms occur later in life.

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

I had headaches and dizzy spells for years. I went to all the appropriate doctors. I was diagnosed with sinus headaches and Meniere’s disease (an inner ear disorder causing dizziness).

6. What kind of emergency treatment, if any, did you have?

I was passing out and falling down. A CT scan (computerized tomography, also known as a CAT scan – computerized axial tomography) showed that the tumor was cutting off my CSF (cerebrospinal fluid) in my brain. I was urgently scheduled for removal of the tumor the next day. I had a ten-hour surgery with a craniotomy (surgical opening of the skull) for the complete removal of the tumor.

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

I was not in a coma. However, I had no memory.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had no rehab. After a year, I realized there had to be help for people like me, and I started getting on the computer. However, my short-term memory was terrible. I found the Brain Injury Alliance of Kentucky, and they changed my life! But I don’t remember. 😦

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

I have short-term memory loss, although my memory is (thankfully) getting better all the time. I made terrible decisions. I divorced my husband and don’t remember it. When people say, “Live in the moment” – that is what I did. It is a HORRIBLE PLACE TO LIVE! I have no concept of the past to be able to reference, and I have no ability to think of the consequences of my decisions for the future. I bought cars for both of my sons. I bought clothes I would never wear. I couldn’t remember what kind of food I liked to eat … and lots more I can’t think of right now. Oh, I tried to go back to work, but I couldn’t remember what I used to do.

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

My life is completely turned around. I was married to a physician. We would travel. We had a good time. We had a great life. I screwed everything up. I divorced him – don’t know why. I came to a realization a few years ago that I had to accept the NEW ME because that is the life I have now. No looking back. Accept where I am now. Live forward from today.

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

I miss being married. But it’s OK, and I’m still young. 🙂

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

I like that I have the ability to relate to others about traumatic brain injury (TBI). I love to help others. I am much more “healed” than I was when I started on this journey. Of course, each year I thought I was feeling much better. What I have learned is that it is a life-long journey.

13. What do you like least about your brain injury?

I dislike my short-term memory issues.

14. Has anything helped you to accept your brain injury?

God – and my family and friends

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

Yes, as mentioned above. Also, you really learn who your true friends are. People just don’t understand TBI.

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

My social life has changed completely. When you don’t “remember” to call your friends back time after time, there is a time when they don’t call you back.

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

At first, my main caregiver was my husband. But after I left, it was my sister. She still is there whenever I need her.

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

I don’t really know what the future holds for me. I now have grandchildren who are the love of my life. I take one day at a time.Richardson, Pam McClurg 2

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

I wish I would have known more about what would really happen AFTER my surgery. I was told I might have a few memory problems – but nothing like what I have experienced. Of course, I had no time to prepare, nor would I have remembered it. Nevertheless, my family would have been more educated and informed. Physicians need to be educated about brain injury!

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

YOU WILL MAKE IT! Think positive! Have a good support system! Go to support-groups. Get online to support-groups. There are resources in your state and in your community. Never, ever give up. YOU ARE WORTH IT!

(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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Survivors SPEAK OUT! Kristin Russo

Survivors  SPEAK OUT!  Kristin Russo

by

Donna O’Donnell Figurski

Russo, Kristin December 2014 After

Kristin Russo – Post-TBI Dec. 2014

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

Kristin Russo

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

Annandale, Virginia, USA

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

July 22, 2013 – I was 28.

4. How did your TBI occur?

My TBI was caused by a collision with a tractor-trailer. Read about it. “Kristin Russo accident.”

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

It was realized about 2-3 days into my stay in the ICU (Intensive Care Unit).

6. What kind of emergency treatment, if any, did you have?

I have no memory of the accident, the month in the hospital, and even the first 5-6 months at home under 24-hour care.

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

Yes. My coma was induced.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had occupational, physical, speech, and recreational therapies for a month as an inpatient. I had therapy as an outpatient until May 2014 when all but physical therapy ended. I’m still in physical therapy for physical injuries.

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

I have moderate to severe diminished visual memory, mild to moderate decreased attention span, diminished executive function, and mildly diminished speech and language function. Those are the significant findings as per my neurological addendum. It was also noted that I am likely to have significant permanent neurocognitive dysfunction due to the TBI. This problem with the physical brain injury is further complicated due the fact that I have significant PTSD (post-traumatic stress disorder). I have a college degree, yet I had to learn how to do things as simple as double-digit subtraction. My entire education has been wiped away. Since I graduated with honors, it was easy to get accepted to Liberty University. But, I can’t retain information anymore, so I’m not sure if I’m going to go back to try and learn everything all over again. My neurologist has diagnosed me with ADD (attention deficit disorder) due to the TBI. I’m not allowed to use anything hot without supervision, etc.

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

Some things are better because I now have an excuse for being directionally challenged or for when I mess up (haha). 😉 Things are worse because I am dependent and I HATE IT! (I am an independent girl.) I was such an intelligent woman. I was still paying off my degree when the accident happened. Not being able to use ANY of the knowledge really made me unhappy. Not being able to work has been horrible because that is all I have ever known. I have been working since the day I turned 14. (My first day of work was on my 14th birthday). I worked at the same place until I graduated high school and went to college. I hate that I can no longer drive. I miss being able to do what I want to do when I want to do it. 😦 I live about eighty miles from where I grew up, so it’s not often that someone comes to visit me. The accident caused me to lose my family because my own father was stealing my pain pills for his sick addiction. I’ve lost some of my friends because I’m a totally different person personality-wise. I’m 100% honest, and I have dedicated my life to Jesus Christ. The girl in the accident died. She wasn’t the best wife. (I’d give more details, but those things are better kept between husband and wife. 😉 ) But, that’s why my accident happened, and I know it. God was showing me what was in front of me, and the same, for my husband. God was bringing us closer together, and that’s exactly what my accident did. So, that’s what I do like about the TBI. Another thing that I like about the TBI is that I don’t remember the accident or being in the hospital or even the 5-6 months after it. I also don’t remember my surgeries up to July. I remember the ones on Black Friday and December 1st. But, yeah, the girl I was before was a girl who drank a lot and went to clubs and acted like she was a single 21-year-old female. Since I’m not her anymore, I’ve lost a couple friends who were just like that girl. I don’t need those girls anyway!

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

I miss being able to drink alcohol sometimes – at least to drink socially. I miss being able to drive. I miss being able to do what I want when I want. I miss working. What I do now is to constantly go to appointments – it’s nuts! I am still in physical therapy – several months post accident. I just got yet another MRI scan (magnetic resonance imaging). I had surgery number eight on January 27th. I began speech therapy in January since insurance started paying again. I miss sleeping like a normal person. I miss being skinny. (I was a size 2 when I was married on July 7th, 2011, and I’m not that size anymore.) I hate being on so many damn medications. I loathe people’s not understanding invisible disabilities. I also have CRPS (complex regional pain syndrome) that was caused by the accident. It’s a chronic pain disease that has no cure.

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

I enjoy the fact that the Trauma Survivors Network Next Steps program taught me to find the positive in everything, so I do. When my legs hurt, I remind myself that I shouldn’t have any, so I thank God for letting me keep my legs! When I have my chronic headaches, I thank God for not making the swelling be so bad that I need to have surgery!

13. What do you like least about your TBI?

I don’t like that I sleep every other day sometimes. I dislike the chronic headaches and the fact that a headache is invisible. I don’t like having memory issues and being confused so often.

14. Has anything helped you to accept your TBI?

God

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

My husband gets rather upset when I forget that I’m not supposed to use a curling iron, and I fail to remember to turn it off. I no longer speak to my parents – my father makes fun of my TBI and acts like I’m making it up. (A*^#@~! ! I guess that’s what drugs do to ya.)

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

I don’t really have a social life anymore. Things are so much louder now. People annoy me more. 😦 I have NO filter. I just want to be home with my husband or alone with my dogs. I haven’t watched TV since the accident.

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

My husband is my main caregiver.

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

I’ll be running a photography business. 🙂 And, I better be a mommy to more than just my fur babies!

Russo, Kristin Before Accident

Kristin Russo Pre-TBI

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other TBI survivors with your specific kind of TBI.

I urge people to try to make a positive out of everything. Depression is so ugly. I wish that I never hit that stage. Having a positive attitude has helped me SOOO much.

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

I give back now by volunteering at the hospital where I did my outpatient therapy. I got one of my dogs certified as a therapy dog, and we visit patients. I also visit patients in the trauma unit. My visits help others, and they also help me!

 

Thank you, Kristin, 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.

(Photos compliments of Kristin.)

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

Feel free to follow my blog. Click on “Follow” on the lower right corner of your screen.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

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Caregivers SPEAK OUT! . . . . . Trisha

SPEAK OUT! – Trisha

by

Donna O’Donnell Figurski

 

Trisha

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

Trisha

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

Rural western Oklahoma, USA

3. What is the TBI survivor’s relationship to you? How old was the survivor when he/she had the TBI? What caused your survivor’s TBI?

My son fell asleep while driving to work. The pickup left the roadway and rolled several times, and he was thrown through the window. It was ten days after his 20th birthday.

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

I began immediately – the morning of November 3, 2011 – as soon as I got the phone call from the Highway Patrol telling us what had happened and that my son was being medevacked to a hospital in Oklahoma City. I called my husband; he left work, and we headed that way. I stayed in Oklahoma City the entire four months. I am still his main caregiver, but my husband, my son’s girlfriend, and my other sons help.

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

I had two younger sons, ages 16 and 11, at home. (They’re still at home.) My stepdaughter, her husband, and their four children had just moved in with us about three weeks before the wreck. They moved out about three weeks after we came home from the hospitals. And I was about six months pregnant.

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

I was running my own photography business, and I still am.

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

Every church, countless people in our area, and family not only prayed, but also made it financially possible for me and my sister to stay in Oklahoma City the entire time my son was in the hospitals and also for my husband to be there whenever he had time off work. My husband’s bosses also were also able to get him extra time when it first happened, so he was able to stay for several weeks before he had to go back to work.

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

Immediately, at all the hospitals

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

Yes. My son was in an induced coma. We stayed by his side and prayed, until they’d make us leave at night. Then we’d be right back in the morning.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when this was happening?

My son was at Oklahoma University Medical Center first. Then he went to Select Specialty Hospital for a few weeks. From there, he was at Valir Rehabilitation Hospital from the middle of December until we came home in February. He had about 8 weeks of therapy at Elk City Hospital as an outpatient after we came home. Since then, we’ve continued doing therapy ourselves at home. I was with him the entire time, except at night, when we’d go to the motel.

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

Trisha's Son after TBI

Trisha’s Son after TBI

My son suffers from short-term memory problems, lack of balance and coordination, problems with fine-motor skills, and incontinence. One of our biggest battles has been depression. He is in a wheelchair, but he is able to use a walker for short periods of time.

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

Everything is pretty much centered around my son. He can be home alone, but only for a couple hours at a time. If I have to leave, I need to make sure either someone else is here or will be here.

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

The active and outdoor lifestyle we had

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

This is actually a difficult question to answer. Post-TBI for us is also the start of our daughter’s life. She was born one week after my son and I got home from Valir.

15. What do you like least about TBI?

Even though it is going on three years, there are still times that I feel like it’s a bad dream, and I’m waiting to wake up. I’m distressed by the fact that my son had a ton of friends before, and now he will go weeks, sometimes months, at a time without seeing or hearing from any of them.

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

I honestly don’t know if I have actually accepted it yet. To me, acceptance pretty much means we give up, and he hasn’t given up. In fact, this week, for the first time ever, he has walked on a treadmill. For the first time since the day before his wreck, I saw him make full strides with both feet! He didn’t do his normal “step with one foot, catch up with the other” like he does when he uses his walker.

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

Yes. We had to remodel one of our bathrooms to make it accessible for a wheelchair. His younger brothers help out with some of his needs.

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

My son and I both have friends who no longer come around. People, including his own grandfather, get upset with us because he refuses to go to their houses. Yet, their homes don’t have access for a wheelchair – let alone have a bathroom that he could get into if needed.

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

I take things day-by-day, with a lot of prayers going up.

Trisha's Son before TBI

Trisha’s Son before TBI

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

Fight for answers from all doctors or “teams.” Insist on seeing each one. When the accident first happened, my son had “teams” of doctors for his different injuries. We never saw the neurology team. They always came through before we were allowed into his room. His brain injury was made out to us like it was a secondary injury – not that bad. In reality, it was his worst injury, but that’s not what we were told.

 

Thank you, Trisha, 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 Trisha.)

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

TBI Tales: Can Music Rewire Brain?

Playing a Mandolin

 by

 Richard Johnson

(presented by Donna O’Donnell Figurski)

 

mandolin-for-gloggtserMy traumatic brain injury took place in October 2003. I did survive (fortunately), but one of the main side effects from my injury is short-term memory loss.

Years ago, I was in a local coffee shop drinking a cup of coffee and thinking – not “Why me? Why me?” but “What can I do to help my short-term memory loss?” The coffee shop had two people playing guitars. One person put down his guitar and picked up a mandolin. They then played three of my favorite songs. What they triggered was like a bolt of lightning had gone through me! I knew right away that learning how to play an instrument, how to read sheet music, and, most importantly, remembering what I just practiced would be the best memory therapy in the world.

When the musicians took a break, I asked about the mandolin. I told the mandolin-player that I had never played any instrument before. I asked if I could chord with less than four fingers (I only have about two-and-a-half usable fingers), and on and on we talked. He showed me a couple of mandolin chords and said to search on Google for two-finger mandolin chords. He told me to buy a beginner’s mandolin to start and to have fun. And that’s exactly what I did. I bought a good-enough beginner’s mandolin from a friend of a friend, found a great local music store that gives mandolin lessons, bought a couple of books and DVD’s, and started playing.

Well, it’s been a few years now, and I play at least one hour every day. It seems to take a month to learn a song. I’m taking the old “practice, practice, practice” route. I’m able to remember and play (most of) those songs without reading the sheet music. If I haven’t played one of those songs in a couple of weeks, I may need to read the sheet music to remember a measure or two.

I wake up in the morning thinking about the songs I practiced and played the day before. I think about the songs I will practice and play that day by “singing” the songs in my head (not the lyrics, but how they’re fretted and picked). When I’m playing, I’m in a whole different world, and the daily toils just slide away.  I’m sure I could refer to my playing-time as “therapy,” but, for me, it’s pure bliss.

In short, playing a musical instrument is one of the main keys I have gained for rewiring my brain. I truly think that beginning and learning a new hobby or new skill is very important, as it makes us think, think, and think. I also believe that playing music, any type of music, all the time helps my brain find those broken nodes and, with its neuroplasticity, “fixes” them. And most importantly, my short-term memory problem is less and less pronounced. Sure, I can still forget what I had for lunch an hour after eating it, but I can bring that memory back a few seconds later. I can still forget who called me earlier today or why, but again it’s easier to make that connection again.

I would like to continue talking, but my mandolin is calling me.

(Richard Johnson’s experience is an excellent example of something I thought might be true – using the playing of a musical instrument to stimulate the brain and thereby help heal an injured brain.)

 

RJohnson-PortraitThank you, Richard, for sharing your story in TBI Tales. I hope that your experience will offer inspiration to my readers.

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

 

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at donnaodonnellfigurski@gmail.com. I will publish as many stories as I can.

(Pictures compliments of Richard.)

(Clip Art compliments of Bing.)

 

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

Please follow my blog. Click on “Follow” on the lower right corner of your screen. (It’s nice to know there are readers out there.)

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If you don’t like my blog, “Share” it with your enemies. I don’t care!

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Survivors SPEAK OUT! . . . . . . . . Kevin Middleton

SPEAK OUT! – Kevin Middleton

by

Donna O’Donnell Figurski

Kevin with his granddaughter

Kevin with his granddaughter

 

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

Kevin Middleton

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

Courtenay, British Columbia, Canada     
5gemm9@gmail.com

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

Circa 1973

4. How did your TBI occur?

Birth defect

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

1977

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

tracheotomy, G-peg)?

I had 7.5 hours of surgery to remove two blood clots and to clip off several aneurysms. An AVM (arteriovenous malformation) and a haematoma were removed December 05, 1977.

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

No

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?

No. I was just sent home and told “No school for a year.”

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

Neuropsychological tests in 1978 and 1994 showed identical results. Short-term memory and recall in the 7 percentile mean that I am disabled. Anger issues ensued, born of frustration over continually forgetting.  Editing oneself is challenging.

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

Since I was quite young, the loss of a photographic memory was a challenge. I withdrew from society. I have no close friends. I have many acquaintances, but I don’t like to socialize. The plus side is that my intellect increased from the removal of the blood clots. The downside is that by then I resented school. Learning took four times longer, and it was difficult to write an exam. My greatest joys are my five children and ten grandchildren.

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

My memory

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

Family

13. What do you like least about your TBI?

I dislike the fact people say they forget too. They don’t understand the frequency or the fact you lost your kids more than once or your wallet eight times.

14. Has anything helped you to accept your TBI?

Time helped. Being involved with a brain injury society has been beneficial. Even having friends who understand is helpful.

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

I experienced a divorce. I attribute partial blame to my not being rehabilitated professionally.

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

Yes. Though I have been married 23 years, I like being by myself with my dogs. My wife socializes without me.

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

My wife is my main caregiver. It was she who said, “There’s something wrong here.” Due to her, I sought out help, which she supported.

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

I’m 54, so retirement is my goal. I’m so done with my brain injury. I like to help online those who are just beginning the healing journey.

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other TBI survivors with your specific kind of TBI.

It’s not your fault that you forget…it’s the fault of the brain injury. In other words, don’t take forgetting personally. I beat myself up for this all the time. However, why am I apologizing for something I have no control of?

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

Don’t get caught in the trap of chasing your past self. Before you know it, it’s 40 years later, and still your former self is bigger than life itself. My 18-year-old self had not fathered, had not grandfathered, had not held a job for 14 years, nor owned several businesses, yet he still was bigger than what I have accomplished. How ludicrous is that? Embrace who you are…a survivor…and move forward because that is where the future lies. Leave your past self in the rear view mirror where he/she belongs.

 

If you’d Like to learn more about Kevin Middleton, please visit his blog at My Broken Brain.

 

Kevin's brain.

Kevin’s brain.

Thank you, Kevin, 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.)

(Photos compliments of Kevin.)

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

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