TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Prisoners Without Bars: A Caregiver’s Story’

Survivors SPEAK OUT! … Jo Dalton

Survivors SPEAK OUT!   Jo Dalton

presented

by

Donna O’Donnell Figurski

Jo Dalton – Brain Injury Survivor

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

Jo Dalton

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

Switzerland

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

Age 28

4. How did your brain injury occur?

Traffic accident – head-on collision at 50 mph

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

My car was smashed up, and it was obvious that I was injured. My husband was driving his car behind me and was terrified that I was dead.

medical-helicopter6. What kind of emergency treatment, if any, did you have?

I was helicoptered to the Emergency Room. I became very agitated, and it took three men to get me into the helicopter.

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

Yes. Around 45 minutes

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 was released from the hospital after five weeks: three weeks in one hospital and two weeks in another. I remember very little of it. My physical therapy was five weeks with a couple of “islands of memory.” I had some neuropsychology, although I don’t remember it. At the second hospital, I believe I had some physiotherapy. At two months post TBI (traumatic brain injury), I saw the treating-neurologist from the first hospital. That doctor said that I “could go back to work and forget all about it”! The treating-doctor from the second hospital saw me as an outpatient, and she was not happy. She organized six neuropsychology appointments for me. That was the only rehab I had.

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

Initially, I had phobias about closed doors and the dark. My balance was a little out. I was told by one psychiatrist that my personality caused depression and insomnia; by another, that if I was tired, I would sleep. I found it incredibly hard to teach – I had forgotten everything I learned in college and in five years of teaching. I felt I had lost my identity. I was assessed by a neuropsychologist recently. I was told that I am slow to respond, that I have aphasia, that I get tired very quickly, and that I don’t deal well with stress.

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

I was an ambitious, full-time, Primary School teacher. I loved my job, and I was studying for a Master’s Degree in Education to achieve promotion. Because of my brain injury, it was impossible to continue either. I was confident and outgoing. I was enjoying living in a new country (I’m English, and I wanted some experience abroad). My life has changed entirely, but not all for the bad. I appreciate the small things in life (for example, fresh air, my dogs, reading (though it’s harder now to concentrate), clean bedding, and the beauty of nature (quite easy to appreciate here in Switzerland!). I also appreciate my friends and see the importance of supporting other people.

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

I miss quite a lot really! I miss the ambition and energy that I had, the love of my job, and my independence.

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

I enjoy getting outside with my dogs, exercising, and being involved in forums to help TBI survivors.

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

I dislike the fact that I am slow; that I have insomnia and depression, for which I’ve been taking benzodiazepines and antidepressants on and off for the last sixteen years; and the inability to have children unaided – my periods stopped and have only restarted since I stopped work. I’ve miscarried five times – presumably due to stress. I wanted to have two children, but I am lucky to have the one daughter whom I do have.

clock-clip-art-4ib4bm5ig14. Has anything helped you to accept your brain injury?

Time! To me, it’s the biggest healer. Time passing has put things into perspective and allowed me to accept that I cannot have my life back as it was. But, there are other things I can do. I am currently in the process of making a claim for help from the state, and if I receive an allowance, I would like to work with just one dyslexic student.

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

Thankfully, I am extremely lucky to have a supportive husband and family. I found out who my true friends are, and I am lucky that they have been so much help. The ones who weren’t were clearly not really friends.

Jo Dalton - Brain Injury Survivor

Jo Dalton – Brain Injury Survivor

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

For the first five or six years after the accident, I didn’t really have a social life – talking to more than one person was impossible. I became tired very quickly and had to leave, straight away. I was not keen to have too much noise around me. I spent quite a lot of time watching films in my apartment, as I was not keen on going out during the day. I live in a French-speaking area and lost a lot of confidence with language. In the last two years, I’ve rediscovered the need for a social life. I go out a couple of times a month, easier since I stopped work after a seizure in September 2015.

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

My husband is my main caregiver. We are both currently coming to terms with what this has meant for both of us at different stages in my recovery. He is now seeing a psychologist to give him some direction and help.

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

I would like to be doing dyslexia tutoring on a small scale, raising awareness of TBI by talking in schools, and perhaps doing some voluntary work.

18. 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.

As a survivor, you need to educate yourself, accept that recovery is a long, long haul, and find online support. We are talking years of recovery. And, hard as it is to hear, it is very unlikely that you will get back to how you were. On the other hand, the strength you gain from dealing with life after a brain injury is enormous and empowering. I would also say that you shouldn’t accept what every doctor tells you. Very few “get” brain injury, and you must not allow anyone to make you feel that it’s your fault in some way.

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

See my answer above. Also, know that [time] + [acceptance] = [ease in life]. Oh, and don’t push yourself too far, too fast. It doesn’t produce good results, as I’ve discovered!

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

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

me

 

Jennifer Stokley (survivor) … I recently met a stranger at my door who was sent to do bug home care. There was no notice, but I let him in to do his work. I asked questions – I had him explain things I needed to know. I have severe anxiety disorder and huge panic attacks. Strangers are a HUGE trigger; letting them into my home is even bigger. I handled it all – no anxiety, no nothing!

YOU did it!

Congratulations to contributors!

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(Photos compliments of contributors.)

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SPEAK OUT! NewsBit . . . . . . Repair of Brain Injury in Mice by Transplanted Neurons

Repair of Brain Injury in Mice by Transplanted Neurons

presented

by

Donna O’Donnell Figurski

Newsboy thThis is an incredible finding with strong clinical implications! There already is evidence that transplanted neurons can survive and grow in the brain. The newly introduced neurons can form synapses, and they sometimes improve function by partially compensating for a damaged brain circuit. What was not known was whether the original damage could be repaired. Now scientists have shown in a well-studied mouse model of the brain that transplanted neurons can replace the damaged neurons, make the appropriate connections, and repair the damage.ridkk855t

The research was done in Germany by scientists at the Ludwig-Maximilians University Munich in Planegg, the Max Planck Institute of Neurobiology in Martinsried, the Helmholtz Center Munich, and the German Research Center for Environmental Health in Neuherberg. Neurons in the visual cortex of the adult mouse brain were killed, then immature (embryonic) mouse neurons from the cerebral cortex were transplanted into the damaged area of the adult mouse brain. What the scientists found was remarkable. The transplanted neurons developed into mature cells – the same kind as the killed cells, and the new cells replaced the killed cells to give normal function. The process took several months.th-1

The visual cortex is one of the best studied areas of the mouse brain. The structures and connections of the nerve cells are known. So, the scientists, using sophisticated tools, were able to propose that the transplanted neurons used the same developmental signals that were used by the original cells. The transplanted immature neurons developed the proper structures, targeted the same areas of the brain, and made the same connections throughout the brain as did the original cells. The transplanted cells repaired the damaged circuits and allowed the visual cortex to function normally again.gray-mouse-hi-1

This basic research in mice has astonishing clinical implications for humans. (I wrote before about how the mouse is a good first model for the human.) Lost or damaged neurons can be replaced with incredible precision. That means there may be a future treatment, maybe even a cure, for all kinds of damage to the brain, including that which occurs from acquired and traumatic brain injuries, stroke, and neurodegenerative diseases, like Parkinson’s Disease and Alzheimer’s Disease. (Full story)

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Survivor/Caregiver ………… SPEAK OUT! Cyndy Davy Feasel, wife of Grant Feasel

Survivors/Caregivers  SPEAK OUT! 

Cyndy Davy Feasel, wife of Grant Feasel

presented by

Donna O’Donnell Figurski

Note: This interview is by Cyndy Feasel, the wife of Grant Feasel, who died of brain disease obtained from playing football. Some answers apply to Cyndy, and some, to Grant. I have made it obvious to whom the answer applies.

 

Cyndy Davy Feasel - spouse of Grant Feasel, a former Seattle Seahawks Center

Cyndy Davy Feasel – spouse of Grant Feasel, a former Seattle Seahawks Center

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

My name is Cyndy Davy Feasel, wife of Grant Feasel, who succumbed to brain disease.

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

Ft. Worth, Texas, USA

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

There was no single event that was responsible for Grant’s brain injury. It occurred from years of playing football. Concussions had a role.

4. How did your brain injury occur?

Playing football (See the answer to the previous question.)

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

We knew Grant had a problem about age 40.

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

Grant Feasel, former Seattle Seahawks Center diagnosed with CTE

Grant Feasel, former Seattle Seahawks Center diagnosed with CTE

None. Grant used drugs and alcohol to numb the pain.

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

Grant was never in a 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?

No

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

Grant had some speech difficulties. He stuttered often and repeated himself as the CTE (chronic traumatic encephalopathy) worsened. Grant also had problems with his vision and balance. His personality changed over the years. He had difficulty thinking and completing tasks. He showed impulsive behavior, irritability, and aggression towards me!

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

(No answer)

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

Cyndy: I miss my normal family life.

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

(No answer)

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

Cyndy Davy Feasel and spouse, Grant Feasel former Seattle Seahawk

Cyndy Davy Feasel and spouse, Grant Feasel former Seattle Seahawk

Cyndy: Grant died in 2012. I miss who he was when we met in 1982.

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

Cyndy: Raising awareness is helping to ease the pain of a lost life.

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

Cyndy: My family was destroyed.

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

Cyndy: I was sad for years about the life I lost in the midst of Grant’s brain damage.

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

(No answer)

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

Cyndy: I intend to be an advocate who increases awareness about concussions and brain injury.

After the Cheering Stops by Cyndy Davy Feasel

“After the Cheering Stops” by Cyndy Davy Feasel

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.

Cyndy: Educate yourself! Please ask your doctor for his or her opinion about your child’s safety before your child plays a head-banging sport.

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

Cyndy: Seek knowledge! Find a group for support.

 

(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!

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Caregivers SPEAK OUT! ……. Ann Castro Baker

Caregivers  SPEAK OUT!  Ann Castro Baker

presented by

Donna O’Donnell Figurski

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

Ann Castro Baker

Ann Castro Baker - Mother and Caregiver for Son, Jesus Castro Hanson

Ann Castro Baker – Mother and Caregiver for Son, Jesus Castro Hanson

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

Plainview, Texas, USA

Email? (optional)

sadeyez1969@yahoo.com

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?

My TBI (traumatic brain injury)/stroke survivor is my 23-year-old son, Jesus Castro Hanson. Undiagnosed high blood pressure was the cause of this nightmare. His injury left him with severe brain damage and a limp, and his arm is still numb and just hangs. He spent 29 days in the ICU (intensive care unit). He was in a coma for almost two weeks … and he “died” three times.

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

I have been by Jesus’ side since the day it started, which was this past April 3rd. I am the main and only caregiver. I turned a year older in July, so now I am 47.

Jesus Castro Hanson - Brain Injury Survivor

Jesus Castro Hanson – Brain Injury Survivor

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

I was helping my mother care for my 84-year-old father, who has dementia. I am no longer able to give her breaks. Now we both are exhausted.

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

(No answer)

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

My son has a nurse who comes to see him about once or twice a month. But the nurse only checks vitals and asks questions.

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

I have been by my son’s side since the day it began.

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

My son was in a coma for two weeks. I had received my BA degree in ‘14, but I have had serious health issues of my own. My son was taking care of me until this happened.

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 your survivor was getting therapy?

Jesus was a patient at a place known as Trustpoint Rehabilitation Center, and I got to stay with him. (When I stated I never left his side, I meant it!) There he received physical, occupational, and speech therapies. On the day we left, he took his first steps on his own. It was a proud and emotional moment for all.

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

Jesus needs help doing particular tasks, like holding things, opening things, and sometimes pouring things. He can dress, feed, and shower himself after relearning how to. His brain damage is severe – you can’t make instructions long and hard. Sometimes even if the instructions are short, he is still not able to do it. His short-term memory is non-existent, but surprisingly his long-term memory is on point.24-7-clockface-md

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

I hate saying “for the worse,” but my life is at a standstill. I watch over my son 24/7, with no breaks. We had been quarantined to our home for two months because of his catching C. diff (the bacterium Clostridium difficile – one of the most important causes of infectious diarrhea in the U.S.) again. He is finally done with the Dificid (Fidaxomicin – an antibiotic), so we are now beginning to go for walks – nothing too far because he will get tired and will trip a lot.

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

I miss leaving the house and not worrying about leaving Jesus alone. Now I have to make sure he is with me at all times. We can’t stay long because he either gets tired or annoyed from all the lights and noise. So I guess you could say I miss my freedom.

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

I am relearning my son. I often say I lost my son in the ICU, and this young man is Jesus in the outer shell, but on the inside, he is a stranger … who I am beginning to know. Sometimes, my son wakes up, and he seems like he is six years old – and those days can be refreshing because of his sweet innocence. Other days, he will wake up as his 23-year-old self – some days are good, while others are just plain horrible because of his temper (which is new; he never really had a temper like this before).

15. What do you like least about brain injury?

ridkzo85tI mostly have a hard time with my Jesus’ temper. I do not like arguing with my son … but, then again, it is his frustration as well. It tears at my heart. This brain injury really altered my son’s life forever. It is tough on him and on me.

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

Yes – his scar. I know that may be a weird answer, but those days when he is either clueless or starts to yell at me, I look at his scar and automatically soften. I know he doesn’t mean it. He has been through so much for his age.

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

I really do not have friends. I think some people are afraid to approach him because of his scar and his mentality now. Family members are good about it. But some people just sit back and stare. It has been different for all of us. I am still single. I recently started a long-distance relationship (very long distance, another county as a matter of fact) and it is going well. My son is happy to see the light back in my eyes.

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

Social life? What is that exactly? I go nowhere. I only go out once a month to pay bills … and then back home to my son. I did mention we are starting to go on walks, so the fresh air is wonderful for both of us.

Jesus Castro Hanson - Brain Injury Survivor

Jesus Castro Hanson – Brain Injury Survivor

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

I have faith that in ten years my son will be much better. I hope it will not happen again. I monitor his vitals three times a day. I make sure he eats right and exercises, gets plenty of sleep, and drinks enough water. I would hope that ten years from now my son will be able to be on his own. That is a long time … if he needs my help, I will be at his disposal. I gave him my word that I would not leave him until he was back to somewhat normal. He still has a long road ahead of him.

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

If there is a support-group in your town or close enough for you to go to, GO! I do not have that option, but I would love it if there were a support-group for the both of us here. If you must cry, cry in the shower … no one can tell! (Just say you got shampoo in your eyes.) Never lose your temper or let your survivor see you get that way. Even if you need to walk away for a minute or two to collect yourself, then do so and go back. Many people find God and pray – that seems to help them. SING! SING! SING! Music does wonders!

(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.

dickerson-karen-survivor-120315-1

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!

SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . . Natalie Collins (survivor)

SPEAK OUT! Faces of Brain Injury – Natalie Collins (survivor)

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.

Natalie Collins - Brain Injury Survivor

Natalie Collins – Brain Injury Survivor

Natalie Collins (survivor)

I am officially two years away from the day of my car wreck. My “new birthday” was a few weeks ago. So much has changed in my life. I see life so differently than most people. I know what it’s like to face death. That changes who you are. Not only do I have memory problems, trip all the time, have constant headaches, and have less proficient reading and comprehension skills, but also emotionally I’m a different person. I’m less tolerant of things that don’t make me happy. There’s a dark side as well. Total recovery isn’t ever expected to happen. I’ve lost many friends, found out who my real friends are, and have been in roseneed more times than not. (I try to do things on my own, but I have accepted that I need assistance with some things. I attempt to hide that part of this traumatic change in my “new” life.) I understand life isn’t always pleasant. It’s “a bunch of roses,” and roses have thorns. I get stuck many times, but I simply walk away. This is part of the change. Overall, I’m just me.

Thank you Natalie Collins for sharing your story.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Trike Treks – David Figurski

Trike Treks – David Figurski

presented

by

Donna O’Donnell Figurski

David Figurski 2004 Pre-Brain Injury

David Figurski – pre-brain injury

My husband, David, bought a Catrike 700 in April 2015.  He rides three days each week, 15 miles each day. David loves his trike. Despite not being able to walk outside unassisted because of a balance problem, he feels “normal” when he rides. He has found that people have a lot of curiosity about the trike. People have stopped him to ask questions. One woman talked to him from her car when they were at a Stop sign.

David is excited because he just broke 2,500 miles. But he still has a ways to go before he equals the 5,390 miles ridden by Dan Zimmerman and Catherine Brubaker on their cross-country trek.

David’s cumulative mileage as of 10/13/16               2,580 mi

Miles to reach 5,390* miles                                          2,810 mi

UPDATE:

David’s cumulative mileage as of 09/04/117               3,727 mi

Miles to reach 5,390* miles                                          1,663 mi

*done by both Dan Zimmerman and Catherine Brubaker on their cross-country ride

Figurski, David Trike

David Figurski – post-brain injury on his Catrike 700

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Survivors SPEAK OUT! Shelly Millsap

Survivors SPEAK OUT! Shelly Millsap

presented

by

Donna O’Donnell Figurski

Shelly Rupert Millsap - Brain Injury Survivor

Shelly Rupert Millsap – Brain Injury Survivor

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

Shelly Millsap

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

Glendale, Arizona, USA

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

My brain injury happened on January 17, 2013. I was 46.

4. How did your brain injury occur?

I was in a freak accident at home – a bottle of homemade ginger ale exploded in my face.dcredykoi

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

I realized I had a problem approximately 1-2 weeks after my accident.

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

I was taken to the Emergency Room for CT (computerized tomography) scan.

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

I was knocked unconscious for about twenty minutes.

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 to do rehab to relearn to walk correctly and talk correctly. I still do home therapy – I’m trying to regain abilities for a lot of things that I once could do easily and now cannot.

How long were you in rehab?

A few months

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

gg61447820I have severe PTSD (post-traumatic stress disorder) and cannot be around loud noises or big crowds. I have issues with being in new environments. I tire very easily. I don’t understand people when they talk too quickly. I can’t remember new information very easily. I get lost easily or become disoriented. I have balance issues. I have a bit of anger inside that wasn’t there before … the list goes on and on.

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

I can’t say that my life is better, but I refuse to say that it is worse. It is a work in progress. Life is full of ups and downs. I have always been a person who likes to take care of people. It is hard for me to let anyone take care of me. My life has changed in the mere fact that I need help with certain things … I used to be very independent. I still am, but I know that I have limitations now.

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

I miss being out-and-about without worrying that the noise will be too much or that I’ll be in a situation that will mentally paralyze me. I miss the ability to get into my car and know that I can drive myself anywhere I want to go.

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

I enjoy seeing the changes that have happened to my immediate family. They have become more compassionate.large_familylovetitle

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

I dislike my new limitations and the loss of who I once was intellectually.

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

God. I’ve always had a strong faith, and I know that God isn’t looking down and laughing at me. This didn’t happen because of some sick joke. God is going to use me and my experience to help someone else. I believe that we all have the choice to have a good day or a bad day. When I wake up, I choose to have a good one. There are things that come into my path at times that aren’t always pleasant, but I try to not focus too much on that and move on.

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

Yes. I have friends who have a hard time with this and really don’t call or communicate much anymore. I understand. It’s hard for some people. I don’t worry myself too much about what is out of my control with people who don’t understand. I just try to focus on the people who are still around and cherish them.

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

I can’t go out a lot because of the noise. I don’t handle situations very well when I don’t know what is going to happen. I can’t be spontaneous. I have a hard time going to movies because of the noise. It’s hard going out to eat at times. But I do get together with my good friends a lot.

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

Shelly Rupert Millsap - Brain Injury Survivor Bob Millsap - Caregiver

Shelly Rupert Millsap – Brain Injury Survivor
Bob Millsap – Caregiver

My main caregiver is ME … with some help from my husband.

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

I’m not sure. It’s hard for me to look that far into the future. So many things have changed in my life that I kind of take it day to day. My main goal in life is to help people, and I plan on continuing to do that. I think that we should all give more than we take from this world. That is how I live my life. I’m not a “people-pleaser.” I could care less sometimes if I please someone. I hate that term. I do things because they need to be done. I just try to treat people the way that I want to be treated.

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.

Gosh, that is a hard one. I am tired and can’t think of anything right now.

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

No matter what your circumstance, there is always someone else out there who probably has it worse. If you are having a bad day and are feeling hopeless, remember that tomorrow is just around the corner and that most likely it will be a better day. You can pick yourself up and make the most out of what you still have. Life is a precious thing. Live it, love it, and be around people who love you as you are.

NOTE:surviving-brain-injury-stories-of-strength-and-inspiration

Shelly is a contributing author on”Surviving Brain Injury: Stories of Strength and Inspiration,” which will be available in mid November 2016. You can order the book by clicking the title. The book includes stories from about 80 brain injury survivors or caregivers.

 

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.

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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:

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!

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