TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Memory loss’

Survivors SPEAK OUT! . . . Su Meck

Survivors SPEAK OUT! Su Meck

presented by

Donna O’Donnell Figurski

 

 

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Su Meck – Brain Injury Survivor & Author of “I Forgot to Remember”

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

My name is Su Meck.

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

I currently live in Northern Virginia (USA) outside of Washington D.C.

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

3. My brain injury occurred on Sunday, May 22, 1988. I was twenty-two years old at the time.

4. How did your brain injury occur?

A ceiling fan in my kitchen fell and hit my head, knocking me down. As I fell, my head hit the kitchen counter, and then hit the floor.ceiling-fan-clip-art-1160226

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

My husband, Jim, was sitting right there at the kitchen table reading the Fort Worth Star Telegram when the ceiling fan fell on me. He saw the whole thing.

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

Jim called 911 right away. The ambulance came and took me to the closer (smaller satellite) hospital. But it was quickly determined that I needed to be at the bigger downtown Forth Worth hospital because that hospital actually had an MRI (magnetic resonance imaging) scan machine.

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

Whether or not I was in a coma depends upon which pages of my (handwritten) medical records one reads. I was definitely in and out of consciousness for a few days, but I am unsure as to if I was in an actual coma.

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?

Rehab? In Texas? In 1988? LOL! The “rehab” that I had was terribly inadequate, especially by today’s standards. I was assigned a physical therapist and an occupational therapist, but it is unclear what specifically those people did with me.

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

The most significant loss for me was experiencing total retrograde amnesia, which means I lost all of my memories of roughly the first twenty-two years of my life. Initially, both short- and long-term memory were affected. I did not recognize my husband, my two children (ages 2 and 1), any other family members, or friends. I also couldn’t walk, read, count, brush my teeth or hair, feed myself, etc. My personality post accident is the opposite of my personality from before the accident.

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

My life totally changed. Better or worse? It’s way more complicated than that. I don’t personally know what my life was like before the accident. I have to rely on the memories and stories of others who knew me. Which, by the way, really kind of sucks.

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

I don’t have any memory of anything from my life pre TBI (traumatic brain injury): all of my childhood/teenage/early adulthood memories, learning how to ride a bike, birthdays, grandparents, learning how to play piano and drums, vacations, my first crush, my first kiss, pets, losing my virginity, college-looking (the first time), sorority rush/initiation/parties/friends, meeting and falling in love with my husband, my wedding, the pregnancies of my two boys and their first years, and so many, many, many more …

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

Advocating for my fellow TBI survivors. I love speaking to groups of survivors, caregivers, and anyone really about what it is like to live with a TBI.

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

Nearly everything else

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

Even though there are still some days that I feel as though I can’t do, or understand, or remember a damn thing, the process of writing my book helped me to come to terms with how far I have actually come since my accident.

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

Oh yes! I don’t feel as if I am part of my family (my parents’ and siblings’ family). I think of my kids as more like my siblings. And my husband? Well … We are still married (33 years) … But since my accident, there have been some genuinely shitty times!

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

I’m sure it has changed in many ways, but one thing that comes to mind (and the thing that was most noticeable when I was in college at both Montgomery College and then at Smith College) is the fact that I feel way more comfortable around people in their 20s and 30s than I do around people my “real” age (50s).

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

Jim, my husband, is my main caregiver now. But at times, my children often took on the caregiver role because Jim traveled so much.

3 Su Meck & Jim 10835181_659603147482572_2314662174685025134_o

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

Wow! This is a tough one. I would love to continue writing (and publishing) stories, essays, lyrics, whatever. I always wanted to be part of a working/performing rock band, playing drums as well as singing. I want to become more proficient on the guitar, uke, and piano. I’d love to travel around speaking and educating people about what it is like to live in this crazy world as a TBI survivor. I’d love to move back to New England. I want to ski, and hike, and learn to swim. I’d love to have a dog (a service dog would be great to keep me from wandering). I want to take long extended vacations to Australia, New Zealand, England, Ireland, and even Canada.

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.

Be happy with who you are now, even if you are one hundred percent different from the person you were before. Be honest with yourself and others. It is okay to ask for help. Graduating from Smith College in 2014 was a huge accomplishment for me. In fact, Smith almost did me in physically, mentally, and emotionally. But Smith also gave me a tremendous gift: An enthusiastic love of reading and learning. Keep learning!

I forgot to Remember Book Cover20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Please buy and read my book, I Forgot to Remember: A Memoir of Amnesia. (I’m shameless!) And, if you like it, please write a positive review on Amazon and/or Goodreads. (Yes, I’m truly shameless!)

 

 

Please check out Su Meck’s book. It’s a great read!

 

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Brain Injury Resources . . . . . Movie Link – “Inside Out”

NOTE:     Although this link was active at the time of this posting, it no longer exists. Apparently, Disney has pulled the content due to copyright. I apologize for any inconvenience or disappointment. The updated link will take you to trailers.

Brain Injury Resources – Movie Link – “Inside Out”

presented by

Donna O’Donnell Figurski

Inside-Out-2015-Animated-Cartoon-Movie-HD-Wallpaper

Recently I published a short review of the Disney movie, “Inside Out.” The movie examines the inner-workings of the brain, and in particular the core memories of a youngster named, Riley.

Core memories are the essence of what makes up an individual.

thThe movie also explains, in its animated form, how both long-term and short-term memories are stored, retrieved, and sometimes lost forever.

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Although I watched the movie (twice) on Netflix, I’ve located it on the web for your easy access. I hope you will take the time to watch it. It’s fun … and informative!

Enjoy “Inside Out.”

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Survivors SPEAK OUT! Natalie Collins

Survivors SPEAK OUT! Natalie Collins

presented

by

Donna O’Donnell Figurski

 

 

Natalie Collins - Brain Injury Survivor

Natalie Collins – Brain Injury Survivor

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

Natalie Collins

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

Shreveport, Louisiana, USA

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

I was 34.

4. How did your brain injury occur?

In a car accident

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

Immediately after the accident

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

None

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

I wasn’t in one.

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 outpatient physical therapy for six months.

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

I have problems with balance, perception, and personality, and I suffer from mood changes.

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

My outlook on life is better, but I still grieve the “old” me. The worst is knowing I will be forever changed.

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

I miss being able to read a book.

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

I enjoy people more and “stopping to smell the roses,” as that old cliché goes.

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

I dislike needing constant assistance because of my memory.

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

I found it helpful to take Sticky Notes everywhere.

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

Yes. My current husband didn’t understand how big of a job it is to take care of me. As a result, I hide a lot of my disability. I also have to stay in the kitchen while cooking.

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

Absolutely. I really don’t have a social life now. Before the accident, I had all sorts of people to hang out with.

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

My mom has been a great help teaching me how to do stuff and not doing it all for me.

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

I honestly don’t know what I’ll be doing in the future. It depends on if this head injury allows me to continue my education in counseling.

Natalie Collins - Brain Injury Survivor

Natalie Collins – Brain Injury Survivor

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.

My advice is to take notes everywhere, especially doctors’ offices. (I had a friend who made me make a daily list, so I would remember even to take a bath. If you’re like me, you won’t remember why the stove is dinging.) Keep a set routine. Stay in the kitchen when cooking.

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

All I can say is “Notes everywhere.” Sticky Notes are fairly cheap in comparison to forgetting really important stuff.

 

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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(Photos compliments of contributor.)

 

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On the Air: . . . . . . . . . . . . “Another Fork in the Road” Panel: Cognitive & Memory Deficits After Brain Injury

On the Air: “Another Fork in the Road”

Panel: Lisabeth Mackall and GeorgeAnna Bell

Cognitive & Memory Deficits After Brain Injury

presented

by

Donna O’Donnell Figurski

images-1Memory loss and cognitive deficits are both prevalent for many survivors after brain injury. Memory loss literally leaves many folks feeling a loss of control over their lives. Cognitive deficits can leave one feeling less than whole.

Lisabeth Mackall Book 061215

Lisabeth Mackall – Caregiver, Author, Speech Therapist

 

My panel, caregiver, Lisabeth Mackall and survivor, GeorgeAnna Bell joined me to discuss how memory loss and cognitive deficits affect them personally and how the deficits hinder their family dynamics. They offered suggestions that have worked for them.

Click on the link below to listen to the show.

GeorgeAnna Bell - Survivor

GeorgeAnna Bell – Survivor

 

 

See you “On the Air!”

On the Air: “Another Fork in the Road”

Cognitive & Memory Deficits After Brain Injury

(Clip Art compliments of Bing.)

(Photos compliments of panelists.)

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SPEAK OUT! NewsBit . . . . . Mental Decline Causes a Hero of Super Bowl XL to Regret Playing Professional Football

Mental Decline Causes a Hero of Super Bowl XL to

Regret Playing Professional Football

presented

by

Donna O’Donnell Figurski

 

Newsboy thAmerican football wide receiver Antwaan Randle El, who played for the Pittsburgh Steelers, is fondly remembered for doing a reverse and then throwing a touchdown pass to ice the National Football League’s Super Bowl XL, played February 2006 against the Seattle Seahawks. The final score was 21-10.

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Antwaan Randle El #82 former Pittsburgh Steeler

Randle El retired early in 2010. Now 36, he has trouble with his memory and has difficulty on stairs. He fears what the violence of football has done to his brain and regrets playing professionally. An all-around athlete, Randle El had been drafted by the Chicago Cubs, a U.S. professional team in Major League Baseball, but his life-path brought him to football. He said in an interview by the Pittsburgh Post-Gazette, “If I could go back, I wouldn’t (play football.) I would play baseball.”

 

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Antwaan Randle El – former Pittsburgh Steeler

Randle El wants to see his kids grow up and to know his grandkids. He is aware of recent brain research and the problems associated with playing football, so he is worried about his own neurological health. He said, “It’s a tough pill to swallow because I love the game of football. … It just comes down to it’s a physically violent game. … I wouldn’t be surprised if football isn’t around in 20, 25 years.” (Full story)

 

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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.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

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Survivors SPEAK OUT! Hayley Nichols

Survivors  SPEAK OUT!  Hayley Nichols

presented by

Donna O’Donnell Figurski

Hayley Nichols Survivor 0727151. What is your name? (last name optional)

Hayley Nichols

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

I live in Valparaiso, Indiana, USA. My accident occurred in Lafayette, Indiana.

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

I had a traumatic brain injury (TBI) on November 16, 2014. I am 23 years old.

4. How did your brain injury occur?

Some background: I went home to Lafayette, Indiana, for my brother’s birthday dinner with my family on November 16. My brother does motocross as a hobby, and I had never been on a dirt bike before. So, that day I went for my first ride. We made it down the road, and then we wrecked. An eyewitness of our accident said that we were not speeding at all, but the bike started to teeter back and forth. My brother was able to dodge a mailbox. The bike then hit a drainpipe head in a ditch. The eyewitness said that the force propelled my brother and me ten to fifteen feet into the air. We were so high that we were in the tree branches before we landed on the ground.

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

As a result of our possible head traumas, my brother and I were rushed to two different hospitals. My mom told me that it was horrible to have us separated but that one hospital wouldn’t be able to handle us if we both needed emergency surgery for head trauma.

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

I did not have any emergency surgery the day of the accident. I did have surgery to repair my nose. I hit my face so hard that my nose was completely flattened.

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

I was not in a coma, but my mom told me I could only respond by moaning whenever a doctor or nurse performed a sternum rub. My mom told me that, after a few days went by, I was able to wiggle my toes and fingers. I was in the Intensive Care Unit for almost a week.

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 did rehab as an inpatient for about four weeks. I had occupational, physical, and speech therapies Monday through Friday. Once released from rehab, I had to continue therapy as an outpatient.

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

When we had our accident, I landed on the left side of my body, so my left knee is always painful. I am able to walk on my own, and I am even driving. But, I only drive down the road – I haven’t been on the interstate yet. When I was first released from rehab, I had trouble with depth perception. I still have trouble with balance. One of the biggest problems that have resulted from my TBI would be dealing with personality changes. (I become upset easily. I could be crying my eyes out over something someone said to me, then five minutes later, be completely happy.)

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

My life has changed tremendously. A good thing that has resulted from the accident is that my family is much closer. The worst thing that has happened to me is that my entire memory of my life has been erased. I am now able to remember things if someone triggers the memory by a song or by giving pieces of the event. It is honestly scary not to recognize people whom I have known my whole life and who have known me. It is frustrating not to recognize people from school. I hate not remembering things that have occurred in my own life. The only way for me to learn about my life is through pictures. Sometimes, I feel like a stranger in my own life.

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

I miss being able to run outside. I love to do activities outside – like playing kickball with my family or walking my dog. I also used to be a cheerleader and a ballroom dancer. I don’t see myself being able to do those things anytime soon.

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

I appreciate life. I do not allow little things to bother me or make me upset. I pay attention to the tone I use when I say things and to the words I choose. I have had people in a joking manner say, “Your accident was months ago. Isn’t that memory-excuse getting old?” They say it in a joking way, and, in the context of the situation, it was not a direct attack. But, it was hurtful. My TBI is a silent disorder, just like PTSD (post-traumatic stress disorder), Alzheimer’s, depression, and so many others. I never want to offend anyone, so I have learned to be compassionate of anyone with any disorder.

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

Memory loss is the worst outcome of my TBI. Some days, I look through pictures and feel like I’m looking at a stranger – and the girl in the picture is me. It’s an odd feeling to have everyone around you know more about you than you do.

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

Honestly, what works for me is to have a positive attitude and to be able to rise above the negative things people say. I am also helped by reading blogs online to learn how other TBI survivors live everyday life. My family has been my motivation to keep going.

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

I live with my boyfriend, Travis, now that my family has allowed me to return to Valparaiso. He is my primary caregiver. He does everything for me. He is my whole world. He drives me to my doctors’ appointments, to therapy, and to school, and he even helps me with my homework. I would not be able to go back to school or even try to get back to a normal life without him. My mother and I are very close, and my accident brought us even closer. She helps me calm down when I get upset and frustrated. She is a great listener, even when I call to tell her the same story for the third time in the same day. My mother is a hospice nurse. Her background and experience working with patients who need her to do everything have helped her to help me. My mother has a positive attitude, even when I say I can’t do something. She says, “Not yet, but you can do….” She will then list all the things that I have learned to do again.

16. Has your social life been altered or changed and, if so, how?Screenshot_2015-04-29-22-30-34-1-1

My friends are wonderful. But, I would love for them not to be so protective of me nor to change plans because they think that I can’t do something. I want to try and be normal like them. If I can’t do it, I just think, “I know they mean well. I think they need more time to get used to it all.”

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

My main caregiver is my boyfriend. I live with him, so he helps me get to school and to doctors’ appointments. Travis is my everything. He has made possible going back to living my old life. My mom is also my caregiver. She helps me with all of my doctors’ appointments and life-decisions. She and Travis work as a team to help me.

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

My future plans began with graduating in May from Purdue North Central with a bachelor’s degree in Biology. Ten years from now, I plan to attend veterinary school.

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.

Don’t become overwhelmed with your current state. Don’t be afraid of the future. No doctor has all the answers, so don’t become discouraged if he or she can’t understand your TBI. No TBI is the same. Have faith.

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

Talk to those around you. Education about TBI to those who don’t understand will help spread the knowledge. Also, not being afraid to explain your TBI will help those around you understand and help you.

(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 Hayley Nichols.)

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