TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Survivng Traumatic Brain Injury’

Survivors SPEAK OUT! Mark Moore

Survivors SPEAK OUT!  Mark Moore

presented by

Donna O’Donnell Figurski

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Mark Moore – Bran Injury Survivor & Author

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

Mark Moore

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

McLean, Virginia, USA     mark@mbmoorefoundation.org

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

2007   At age 46

4. How did your brain injury occur?

I had two strokes.

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

I was coaching my son’s baseball practice, and I began to lose my balance.

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

I had a craniectomy (brain surgery in which a piece of the skull is removed, but, unlike a craniotomy, is not returned to its original location) to relieve the pressure on my brain.

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

Yes. I was in a coma for four weeks.

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?

Yes. I had physical therapy, occupational therapy, and speech therapy as an inpatient for two weeks and then as an outpatient for two months.

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

Initially I had significant diminished use of my left side and loss of peripheral vision in my left eye. I couldn’t walk or speak.

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

Having a stroke was the worst day AND the best day of my life. It was the worst day because it was scary and it was one of the first times I realized that I had no control over the outcome. It was scary for my wife and my family. When I found out that I had basically been “asleep” for nearly six weeks, I was scared all over again. I had to face the fact that I might not walk, talk, or think like Mark Moore ever again. In fact, I had to recognize that the “old” me might actually be gone. At that moment, it felt like the worst thing I could imagine.

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Mark & Brenda Moore with President & Mrs. Obama

As I struggled with those concerns though, I remembered my mother’s words – words I had forgotten, words she had spoken to me during her own health crisis. She said, “Mark, God will never give you more than you are able to handle.” Those words impacted me and turned me around. I was slowly able to stop thinking just of myself. I started thinking about God and what He could do and would do with my life now. He could pick up the pieces of this broken version of me and heal me – create in me the person he meant for me to be. That thought began to work in me, and though I knew it wouldn’t be easy, I also knew that, with God’s help, I could let go of the old Mark and become a new man.

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

Riding rollercoastersroller-coaster-thought-of-the-day-jewels-art-creation-clip-art

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

I enjoy my relationship to God.

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

I dislike the constant scanning to drive

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

Having a stroke meant I had to learn to surrender. I had to face the fact that my abilities as a “fix-it guy” were not going to come to the rescue. I had to do something that was hard for me to do. I had to be willing to give up my illusions of who Mark Moore was and hold on for dear life to who God is. That’s surrender! That’s where everything you thought you knew comes to a halt and God finally has enough of your attention to help you become what He planned all along.

When I first looked at what was going to be required of me in the recovery process, I did not want to do it. I thought it would simply be easier if God just shut me down, packed me up, and sent me back to His house. But, He didn’t do that! He kept me in the hospital for several weeks and then sent me back to my house. He showed me that recovery meant I had to totally trust Him and my wife, Brenda, and the therapists, who would bring me back to good health.

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Mark Moore – Brain Injury Survivor – 5K Race

Starting therapy looks daunting. It is daunting, and it’s even frightening! Everything in me resented that I had to be there and that I had to learn all over again things I’d known all my life. If you’re facing therapy and recovery now, all I can tell you is to do what you’re told to do. Make the effort. Try harder than you’ve ever tried in your life, and lean on the people who love you. Open your heart and mind to all that can still be possible for you. That’s what surrender requires. That’s what trusting God is all about. You’ll be in recovery for a long time (maybe the rest of your life), but you’ll be in good hands in the process.

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

One day (May 12, 2007), I had a stroke, which was followed by another one. I was fine one minute and fighting for my life the next. In the process of recovering from those strokes, I discovered something I had not fully realized before. God had a plan for my life. He had a purpose for me, and I was not on the path He preferred. In one day, my life changed, and my purpose changed with it. To be honest, when I discovered God wanted something more from me, I was relieved. Clearly, there was more I could do, and it didn’t always revolve around the work I had carved out for myself. I was relieved to know that I could step back from the life I designed and be far more comfortable in the one He designed.

basketball-clipart17My friends were amazed when I did not show any interest in simply going back to work. They thought it was strange that I did not want to play basketball, a game I had loved playing all my life. What I did want to do was to please God. What energized my spirit and resonated with my soul was to do the things God wanted – to fulfill His purposes in me.

What a difference a day makes! What joy it is to my heart that God was with me through the strokes and is with me now to guide me into being the Mark Moore He always knew I could be. What a joy it is to live more intentionally and more fully awake to the places He would have me go.

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

Not really

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

I don’t have or need a caregiver.

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

When God had my attention as I lay in a hospital bed, He asked me a new question. Whose job is it to help others? Whose job is it to make a difference? Whose job is it to spread the gospel? The answer was the same in every case. It was MY job! God had blessed my work and made it possible for me to bless others. He took me out of the race in which I’d driven laps for twenty years and said, “I have something new for you. I want you to slow down and hear what I have to say.” I stopped then and listened.

God didn’t “give me a stroke.” He used the stroke to give me a new purpose. He used the situation to help me hear His voice more clearly and to understand the job He had in mind. Whose job is it … to do good, to help others, to lend a hand? It’s mine, and it’s yours! Let’s use whatever resources we have been blessed with to help those around us. It will fulfill our life-purpose like nothing else can do.

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.

It was interesting to me after my stroke experience to discover that I did not want to be “naked” in front of my family – in front of the people who knew me the best. Like Adam and Eve, I wanted to hide so they would not discover my fear and sense my weakness.

As I looked back at my initial reactions to my strokes, I realized we can’t hide from the people who know us well and love us any more than we can hide from God.

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Mark & Brenda Moore

My wife did not want me to hide from her. She was ready to help me – ready to stand beside me and offer me her strength. My friends were like that too. Caregivers and hospital personnel were set to help me, but I had to be willing to be “naked.” I had to be willing to let them see my weaknesses and my vulnerability. I was not the person I had been; I needed their strength.

Another thing that was extremely helpful during my stroke recovery was that I began to regularly put on my headphones to listen to gospel music. The effort to re-establish my fine-motor skills was sometimes grueling, and I wasn’t always sure I could do it. Gospel music comforted me and helped me get through the ordeal. It reminded me over and over again of what Jesus did to give me life, to lift me up, and to restore my soul. It also reminded me that there was nothing I was going through that Jesus did not experience. He paid the price so that I could be restored eternally, spiritually, and physically to this day.

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

One thing I tell everybody is that you can’t recover from a stroke or any debilitating illness without the help of your family, your friends, and your faith. It can take days, weeks, or months to see any real change in the things you are able to do physically. That means that mentally and emotionally you have to lean on the things that boost your morale and make a difference in your attitude. When it comes to the kind of help your family, friends, and faith can give in your recovery, it all depends on YOU!

I say it depends on you because you are the only one who can let others in to help make a difference. Your spouse can come to your aid every day and cheer you on and encourage you, but it won’t do any good unless you’re willing to receive it. I can admit that there were times when I didn’t really let my wife, Brenda, in. I was scared, and I didn’t want her to know it. I didn’t want to have to tell her that I didn’t think I could do what it took to recover. She had known me as a guy who was a go-getter – someone who rose to the occasion to get things done. After the stroke, though, I didn’t always believe that I had that same courage.

Friends stood beside me as well and helped me get the message that a lot of people cared and were rooting for me. They wanted me to get better and to become the old Mark again.

 

(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 SPEAK OUT! Survivors Interview Questionnaire for a copy of the questions and the release form.

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Caregivers SPEAK OUT! . . . . . Lori Strauss Heckman

Caregivers  SPEAK OUT!  Lori Strauss Heckman

(caregiver for her son, Bartholomew Wayne Nathaniel),

presented by

Donna O’Donnell Figurski

lori-strauss-heckman-caregiver-012017Three years ago, our lives were turned upside down when my then 21-year-old son had his accident. It has been a long road with many hurdles to overcome, but I am so proud of him. He is my hero and my greatest blessing. And, proof to never give up. We were told that he would probably not make it that night. We were also informed that, if he did, he would not have any quality of life. But, he proved everyone wrong! Many prayers were prayed and many tears were shed, and my son is still with us – and doing very well. The first and second photos are of my son after the accident; the third is him wearing a helmet in recovery; and the fourth photo is of him with his car. (Yes, my son is driving, and his seizures are under control.)

Meet Bartholomew Wayne Nathaniel

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(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

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.

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

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

Feel free to “Like” my post.

Survivors SPEAK OUT! Bonnie Nish

Survivors SPEAK OUT!  Bonnie Nish

presented by

Donna O’Donnell Figurski

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Bonnie Nish – Brain Injury Survivor & author

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

Bonnie Nish

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

Vancouver, British Columbia, Canada

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

I had two: one in 2012 at age 55 and another in 2013 at age 56.

4. How did your brain injury occur?

For the first one – a child I worked with in a school was using a zip line, and, as he was coming off, he began to lose his balance. I put my head on his back to steady him, and his head came whipping back – the back of his head caught me just above the temple. For the second one, a basketball bounced off the rim and hit me in the same place that the first one did.boy-on-zipline

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

Immediately

basketball-clip-art-free-download6. What kind of emergency treatment, if any, did you have?

At first, I just went to a walk-in clinic, and they told me I should be better by Monday. (It was Friday.) About two weeks later, I couldn’t get two words out without stuttering, so I went to the Emergency Room. They did a CAT (computerized axial tomography) scan and sent me to see a neurologist. That neurologist thought I didn’t have post-concussion syndrome, even though I was stuttering and couldn’t move my right finger from my nose to his finger. The Workmen’s Compensation neuropsychologist disagreed with this and thought I did have it.

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

No

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)?

I had outpatient therapy as designated by the Workmen’s Compensation Board.

How long were you in rehab?

Four months

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

I experience nausea, dizziness, light-sensitivity, loss of appetite, an inability to retain what I read, an inability to write, stuttering, a loss of words, impulsivity, anxiety, and an inability to follow multiple conversations at once. I have a problem with my balance. I lost twenty-five pounds. I have an over-stimulated sense of smell, an inability to play piano and remember what I knew, a loss of executive decision-making skills, a constant buzzing in my head, and concentration problems.

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

It’s mixed. I still have buzzing in my head all of the time, and it gets louder if I do too much. And, I still have some memory problems. But, I also appreciate my ability to think like never before. I have published two books since my concussions.

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Bonnie Nish – Brain Injury Survivor & author

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

I miss not hearing buzzing and not feeling anxious.

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

I enjoy knowing when I can do things that I couldn’t do while I was in the middle of it all.

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

I dislike not being able to write or read. That is the scariest thing for me.

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

Yes. Time.

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

Yes. My children became my caregivers. That was hard for them, especially for my youngest daughter. It took some time for us to get past my being dependent on her.

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

Yes. I don’t go out as much as I used to. I still find it hard to be in large groups and crowds.

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

My youngest daughter was my main caregiver. Yes, I understand how hard and how demanding it was for her. And how scary.

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

I have returned to my academic work. I intend to finish my PhD and teach and write. I would like to get a few more books out. (I am currently working on two.) Also, I hope to live somewhere else in the world for a while.

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 let people around you know that one thing that might happen to you is that you might become very impulsive. It is best if you can get some help with this. Leave your cards at home and only take a certain amount of cash with you. Mention to your friends and family that if they see you buying something you would never normally buy, they might want to question this. I didn’t figure this out until I was in the concussion clinic and heard a few of the guys talking about how impulsive they were. For this reason, they kept only $20 in their pockets. This was after I bought a stationary bike when I couldn’t get it out of my head that I needed it. I also bought five dresses and have worn only two.

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Bonnie Nish – Brain Injury Survivor & author

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

This is a hard and difficult journey. You may feel as though you are a different person. You are in some ways. It takes time to grow into this new way of being. Have patience with yourself – the way you would for a dear friend.

 

 

 

To learn more about Bonnie Nish, please visit her website.

To order Bonnie’s book, click here.
 “Concussion and Mild Brain Injury: Not Just Another Headline” 


 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

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.

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

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

Feel free to “Like” my post.

SPEAK OUT! . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for BlogSPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your lastname to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

Here is this week’s Itty-Bitty GIANT Step

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Harry Jordan – Brain Injury Survivor

Harry Jordan (survivor) I’ve been blessed with many things in my life, but recently I was in tears. My left foot – on the side I had the stroke on – hasn’t moved since 2009 (pre stroke), but the other way-clipart-waycool2day, I was able to push down and move it! I know I’m being so emotional over something so small, but it’s HUGE TO ME! Maybe I am getting better. Maybe.

 
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Simon Limbrick – Brain Injury Survivor

 

 

Simon Limbrick (survivor) It’s been thirty-seven years since my TBI (traumatic brain injury), and I’m now learning that I should not have pulled out of my coma or made all the gains I did. I was determined to bring further improvement to my left eye, which sustained third nerve damage. I was told that I would eventually go blind in it and that I would definitely not be able to move it. In one of my annual eye checks, an optometrist remarked that he had never heard of someone with my condition having the eye improve year after year. In the last twelve months, there has been definite, noticeable vertical movement, as well.  My message to others? IT’S NEVER TOO LATE FOR HEALING!

YOU did it!

Congratulations to contributors!

(Clip Art compliments of Bing.)

(Photos compliments of contributors.)

As I say after each post:anim0014-1_e0-1

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 upper right sidebar.

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

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

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SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . . Carol Starke-Pyle (caregiver of her son, Thomas)

SPEAK OUT! Faces of Brain Injury – Carol Starke-Pyle

(caregiver of her son, Thomas)

presented

by

Donna O’Donnell Figurski

Brain Injury is NOT Discriminating!

bigstock-cartoon-face-vector-people-25671746-e1348136261718It can happen to anyone, anytime, . . . and anywhere.

The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.

On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.

The stories on SPEAK OUT! Faces of Brain Injury are published with the permission of the survivor or designated caregiver.

If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury.

Carol Starke-Pyle (caregiver of her son, Thomas)

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Carolyn Starke-Pyle – Caregiver for Brain Injury Survivor

 

This is my son’s story. Thomas was 43. He trained/rode horses for a living. He was very athletic, vivacious, funny, etc. He came to visit me one Sunday, and, as the day wore on, he became more and more delusional. I called an ambulance. My son knew his name, knew where he was, and walked to the ambulance. I followed to the Emergency Room. I was able to see Thomas twenty minutes later, as he was waiting in the cubicle. He could not talk – he babbled incoherently. He could not sit up or walk. He didn’t know me. He was admitted and was given many tests: a CT (computerized tomography) scan, an MRI (magnetic resonance imaging), and a spinal tap. The CDC (Centers for Disease Control) was called in. It was concluded that Thomas had brain damage. After two weeks, Thomas was transferred to a neurological center. He didn’t know how to swallow, he knew NO ONE, he was in a huge crib, and he was in diapers. More the-brain-hispinal taps and more MRIs. I was told his frontal lobe looked as if a bag of M&Ms had been tossed into it. Infectious/viral disease had been ruled out. It was determined that, due to numerous concussions from falls off horses, his brain had suffered too much damage – which was IRREVERSIBLE! I collapsed when his doctor said, “The Thomas you knew a month ago is no longer with us.” He continued to tell me that my vibrant son would need a nursing home for the rest of his life.

I went onto Facebook and shared my anguish and pleaded for prayers. A prayer chain encircled the globe. Meanwhile, I attended TBI (traumatic brain injury) seminars and met with social workers and more doctors to find a special nursing home for Thomas. Two months later, on my visit, his nurse grinned and said she had a surprise. Thomas was standing up! The next week, he was walking, then talking (he made little sense, but … !), then recognizing us, and then eating by himself. As I was a teacher, I chose to stick up all sorts of stimuli – photos of family, friends, pets, and horses. horse_adoptable_bay_animated_by_hikari_yumi-d5hrf17Thomas slowly improved (contrary to the opinions of ALL specialists). After four months, with short-term memory loss and some loss of intelligence, Thomas was released. I asked his doctor to explain. He looked at me and quietly said, “It is a miracle!”

My son is back to work with horses, has absolutely NO memory of the hospital, has a touch believe-clip-art-at-clker-com-vector-clip-art-online-royalty-free-qep8hi-clipartof short-term memory loss, and is as bright as he always was. BELIEVE IN MIRACLES! I am praying for YOU ALL!

 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

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.

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

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

Feel free to “Like” my post.

SPEAK OUT! . . . . . . . . . . . . . Guest Blogger . . . . . . . . . . . . . . . Karen Dickerson

Never Give Up!

by

Karen Dickerson

presented by

Donna O’Donnell Figurski

Girl Blogger cartoon_picture_of_girl_writingOn March 2nd, 2014, I was involved in a car accident that changed my life forever. My speech was slurred; I couldn’t read; I couldn’t even write my own name.

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Karen Dickerson – Brain Injury Survivor

Two months after my accident, I was so proud to write my name again that I signed divorce papers I couldn’t comprehend. I also signed so that my brain injury wouldn’t be used to take my children away. For fifteen years, I was married – and in an abusive relationship. I had three children, and I was left with nothing. Not even child support. I had lived a fairly comfortable life, financially speaking. I just wanted out and couldn’t take the confusion of court proceedings, but yet I couldn’t understand why. Everyone said I looked “normal.”

I struggled to feed my children. I swallowed my pride even when I was standing in line at a food pantry. I walked dragging my left leg to my speech, physical, and occupational therapy sessions, thinking that my leg problem would just go away in a few weeks. A friend helped me buy a car with what little money I had. I spent a few cold nights sleeping in it, confused as to where I was, what I was doing, and when my next appointments were. I’d yell at anyone who crossed my path – losing friendships. Family left me all alone. I fought with my auto insurance company for my rights in a no-fault state, and, after several months, I finally received compensation for wage losses.

I’m not sure how it happened (as things are a complete blur at times), but I finally found a good doctor and a nurse case-manager to help me. I was put into a neuro rehab program an hour away from home. (I had to let my children go live with their dad.) Seven days a week, I learned basic living skills and tried to control my anger and frustrations and emotional outbursts. I had constant legal issues, as I was beginning to realize that what I had signed in my divorce was not what I thought. The settlement was not good for me. As a result, I had to fight for my children and for child support. After a few battles, I won their support! After getting through those struggles, I finally realized I needed to take this TBI (traumatic brain injury) head on and fight to get my life back.counsleing

I was angry that I couldn’t do the simple things a child could do, and I was frustrated that I had tested intellectually as lower than high-school level. As hard as it was, I learned coping skills to control my damaged frontal lobe and to try to focus. After my rehab program ended, I moved back home to be with my children. I went to all my therapies (three times a week) and to numerous tests and doctors. I got my kids to and from school every day. I learned how to cook again. After almost two years, I was finally beginning to live a somewhat normal life again. I was even able to meet a wonderful, humble, and understanding man. What were the chances that his own brother-in-law had a TBI? The new man in my life knew exactly what I was going through and accepted my flaws and deficits.

I then started to get interested in learning about this misunderstood injury. I attended the BIAMI (Brain Injury Association of Michigan) meetings in Lansing, Michigan. Using social media as a tool, I advocated and educated others. Hearing good vibes from all over the country and the world, I began to realize how many people just like me were out there. I had to do something about brain injury, as I was so misunderstood and I was tired of being called “crazy.”social-media

I began to excel in all my therapies, which moved me into vocational training. I was asked to put my résumé together. I did – I looked at it and saw that I never had the opportunity to go to college. I was a single mom at nineteen, and I married someone who wouldn’t allow me to grow. I could have gone back to real estate, but how was that helping people? I could have returned to the ophthalmology career that I had for years, but I was limited by the small area I live in. I had already worked for the one surgeon, but he told me that he didn’t trust me with his patients anymore because of my TBI.

th-1As hard as occupational therapy was for me, it was also fun. I gained friendships with my occupational and speech therapists. Even if I couldn’t do their tasks that day, they were still there for me to talk. They comforted me and encouraged me to keep on going. I looked into the OTA (occupational therapy assistant) program and thought Why not see if I can try it? With my disability, there should be some accommodations, and, after what I’ve been through with so many occupational therapy sessions, I thought I might just know a little about it!

I took the test and was accepted to Baker College! (Two years and five months post TBI.) I went to orientation yesterday and teared up as I walked on campus.

Karen Dickerson - Brain Injury Survivor & College Student at Baker College

Karen Dickerson – Brain Injury Survivor & College Student at Baker College

As I sat in a loud room with others picking their classes, I struggled to drown out the noise, as audio is still a daily struggle. The abbreviations and so much on the class schedule – even with military times, were problematic. I thought for one second I can’t do this. Then I remembered all those times I did “do it,” and I focused and got my class schedule done. At 39 years old, a TBI survivor, a domestic-abuse survivor, and a mother of three, I am a college student!

This program is offered near Grand Rapids, Michigan, over three hours away. As I checked in, I met the president of the college, and he noted where I was living. All I could say was, “I’m going to do this.” It is in my heart. God has gotten me this far. I will NOT give up!

Survivors SPEAK OUT! . . . Gretchen

Survivors SPEAK OUT! Gretchen

presented

by

Donna O’Donnell Figurski

Gretchen - Brain Injury Survivor

Gretchen – Brain Injury Survivor

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

Gretchen

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

Louisiana, USA

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

I had just turned 20.

4. How did your brain injury occur?

My brain injury is from a car accident. My best friend was driving. I was sitting on the console and flew into the backseat. The driver was ejected, and she was killed instantly. Another friend with us, who was sitting in passenger’s seat, just had stitches.

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

I was medevacked to a hospital right away and stabilized. I was then flown to a larger hospital. I knew one of the emergency responders, and he said he recognized my brain injury from the way I was breathing. I was also erratic and trying to move and fight and get up, but I had a head injury. Another responder told me that he had to almost lie on me to keep me still.

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

I had a PEG (percutaneous endoscopic gastrostomy) tube (to add nutrition directly into the stomach), a halo brace (a metal ring attached to the head and shoulders to immobilize the spine) because I had a broken neck (fracture of the C2 vertebra), a tracheotomy, and the usual IVs and ports.

Gretchen with Halo Brace

Gretchen with Halo Brace

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

Yes. I was in a coma for three and a half weeks.

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)?

Yes. I had some physical therapy, but mostly I had cognitive therapy. I had both inpatient and outpatient rehab.

How long were you in rehab?

Inpatient rehab was about a week. Outpatient rehab was for several weeks (a couple of times a week).

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

I have no physical problems; they’re mostly cognitive. I have some personality changes. My family has voiced this to me. I have no control over it, but I do feel it, and I feel so uncomfortable with it. I’m not happy and confident and wonderful. That doesn’t come naturally to me anymore.

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

Worse. I am almost always anxious and uncomfortable.

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

I miss my friend and my carefree and happy self.

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

I guess I just have to enjoy living life. That’s all I have. I take it one day at a time.

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

My brain injury took a part of me that I was happy with – my confidence and my peace. I hate that about it.

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

I just do. I have to accept it.

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

My relationships have definitely been affected – both romantic and friendship. I fought the change with my boyfriend at the time, but he recognized it. We ended up breaking up after several years. My friendships are also different. I find it difficult to talk and keep in conversation. It’s hard to find stuff to say to people I was so close to before. It makes me so uncomfortable, although it could also be from our drifting apart naturally. It’s like I feel cold to them, but I don’t intentionally try to act that way.

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

Yes. I’m so anxious all the time. I’m very uncomfortable with myself.

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

My aunt was my caregiver right after I got out of the coma. I am my own caregiver now. I live on my own. My dad has to work, and my mom didn’t feel comfortable doing it. We live right next door to each other, though.

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

I want to be happy. I have a degree in English. I hope to write more. I have been published twice, but I haven’t gotten back an email or a response. I was a French major, but I lost it all after the accident. I was heartbroken.

Gretchen - Brain Injury Survivor

Gretchen – 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.

Nothing I can think of

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

Take it one day at a time, and don’t be hard on yourself. Love yourself. Again – don’t be hard on yourself!

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:

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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.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

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

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.anim0014-1_e0-1

If you like my blog, click the “Like” button under this post.

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

If you don’t like my blog, “Share” it intact with your enemies. That works for me too!

SPEAK OUT! . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

 

Itty-Bitty GIant Steps for BlogSPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at neelyf@aol.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your lastname to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

 

Here is this week’s Itty-Bitty GIANT Steps

georgeanna-bell-survivor-091016GeorgeAnna Bell (survivor) … For the first time, I took a shower sanding up! Normally, I use a shower-chair because of dizziness, but I was fine standing. I was supposed to get a Disability Room. I guess what I had was one to some degree. gg57881072I was looking forward to a walk-in shower, so I could place my walker into the shower and use it as a chair, but my room had a tub. I was extremely cautious, but I did it! I am so happy!

 

cat-brubaker-survivor-090916Cat Brubaker (survivor) … Today I used the oven – TWICE – all by myself! And I didn’t burn anything down. I got a little “fancy” (I added my own thing). I kept the timer with me at ALL TIMES.

cats-quiche

crustless, veggie butternut quicheTIMES.

 

 

 

 

 

sallie-stewartSallie Stewart (survivor) … Big win in life for me! (It may sound small and trivial to many.) I have said it before – I have this swallowing challenge. Nerve damage is some of it; synching of the epiglottis and trachea is also a problem. Then there is this crushed-disk issue with my jaw. Orthodontic braces were put on two years ago in hopes that things might change. They did. There are still challenges, but today was a great day! I ate ALL of my Eggs Benedict, ALL of my lunch, and ALL of my dinner. thAnd several snacks in between. I can chew – on BOTH sides of my jaw. It’s a giant win in life for me! I feel strong. It’s been a true challenge to try to find the majority of my nutrition in a blender. It was so nice to really be able to chow-down food. These braces come off soon. And for that, I am happy. But I’m not nearly as grateful for that as I am for being able to chew pain-free. My heart is full! A strong full!

 

YOU did it!

Congratulations to contributors!

(Clip Art compliments of Bing.)

(Photos compliments of contributors.)

 

As I say after each post:anim0014-1_e0-1

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 upper right sidebar.

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

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

Feel free to “Like” my post.

Caregivers SPEAK OUT! . . . Lynn Sandoval

Caregivers  SPEAK OUT!  Lynn Sandoval

presented by

Donna O’Donnell Figurski

 

Lynn Sandoval - Caregiver

Lynn Sandoval – Caregiver

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

Lynn Sandoval

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

Brady, Texas, USA

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

The brain-injury survivor is my husband. He was 39 years old when he had the brain injury. He was in an automobile accident. His car was hit twice, once head-on. The first car hit my husband’s car at ~95 mph. This hit spun my husband’s car around, and a second car, following the first car, hit my husband’s car in the rear at ~85 mph. My husband’s car was spun back around and finally came to a rest in the middle of the road.

4. On what date did you begin care for your brain-injury survivor?

I began care the day after my husband’s accident – when I was able to get to the hospital where he had been flown.

Were you the main caregiver?

In the beginning, my husband had hospital care in addition to mine.

Are you now?

I have been my husband’s only caregiver since he came home from the hospital.

How old were you when you began care?

I was 52.

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 brain injury? If so, were you able to continue working?

Yes, I was employed. I have been able to utilize FMLA (Family and Medical Leave Act) and sick leave. I have continued working whenever I am able to.

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

I have not had any help at home caring for my husband.

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

My support began in the hospital, and it continues to this day.

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

My husband was in a coma the first few days. While he was in a coma, I stayed by his bedside and talked to him. I touched him on the areas that weren’t bandaged to let him know I was there.

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)?

My husband had physical, speech, and occupational therapies in the hospital. They continued when we got home, once I got him set up for evaluations.

How long was the rehab?

k20116138My husband is still in physical therapy, and he recently started occupational therapy again. (He had “graduated” from occupational therapy about a year ago, but his neurologist requested that he do it again.)

Where were you when your survivor was getting therapy?

I was there with my husband during the beginning therapies, but after some time, he went to the therapies alone. Now we work together on exercises at home.

 11. What problems or disabilities of your brain-injury survivor required your care, if any?

Now my husband is able to do things for himself, but I still have to get his medications together for him every day because he doesn’t remember if he’s taken them or not.diabetes_medications

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

Since I’ve become a caregiver, I have discovered that people will withdraw from situations because they don’t understand TBI (traumatic brain injury). It has its ups and downs, but we are now seeing more positive steps and are hopeful for the future. I have found that I am more depressed and feel alone because I am more involved with making sure everything is OK for my husband, but I am learning to take time for me.

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

Life before my husband’s TBI was a lot less stressful – being able to leave the house and not worry if he is OK. Now I keep my phone with me continuously so that, if he needs something, he can call and I’ll be there for him.

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

I am grateful that I still have my husband with me.

15. What do you like least about brain injury?

I dislike the frustration and confusion that my husband feels when he is trying to remember something and he can’t.

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

Yes – support-groups and reading – and more reading – on anything and everything I can find about TBI and about what can and can’t be beneficial – not only for him, but for us and our relationship.

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

Yes. I find I am hyper-aware of anything and everything my husband does in an effort to keep him safe. The relationships with his family and friends have become nonexistent. It hurts my husband so much to feel that no one cares about him.

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

Yes. We don’t go out much anymore because my husband doesn’t like being in large, noisy crowds and because it is difficult for him to stand or walk for extended periods of time.

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

My husband’s plans are to hopefully get approved for disability insurance and then to return to his job (that they are holding for him) part-time so that he can financially contribute to our family. My plans, if we are able to get some additional income instead of just mine (which has been our income for almost the last two years), would be to find a job to use my Master’s Degree. I just completed my degree program this past year in psychology. I’d like to work with other traumatic-brain-injury survivors and help advocate for them. Here in our small town, nothing is available.

Lynn Sandoval - Caregiver

Lynn Sandoval – Caregiver

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

I would say that, despite the difficulties in being a caregiver, caregiving can be rewarding – when together you see the progress your survivor is making because of his or her drive and determination and because of the support and love that you give him or her. It is tiring, it can be frustrating, and you may feel like screaming – these are all normal responses. The key is to remember to take a moment, to try to take care of yourself (this is the hardest thing), and to believe in each other.

 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

 

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.

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

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

Feel free to “Like” my post.

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