TBI – Survivors, Caregivers, Family, and Friends

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)

carol-starke-pyle-1

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.)

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Survivors SPEAK OUT!    Richard Schooping

presented by

Donna O’Donnell Figurski

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

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

Richard Schooping

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

Orlando, Florida, USA     apebblethrown@gmail.com

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

I was 44.

4. How did your brain injury occur?

A mysterious brain infection from AIDS attacked my entire brain and spinal cord.

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

My functions in my mind and body began to slow down. Typing and talking slowed to zero over the period of a month. I watched it happen from a shattering mirror of identity.

6. What kind of emergency treatment, if any, did you have?patient-in-hospital

I was put in the hospital on liquid experimental medications to slow the attack of the mysterious virus. Also, I was on oxygen therapies to raise my blood-oxygen level. Doctors had never seen anything like this. I was also informed I had aphasia.

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

No. I was awake and asleep intermittently for days.

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 in a nursing home for three weeks of intense rehabilitative therapy. Then I had occupational therapy for as long as insurance would cover it – about three months.

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

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

I seemed to lose everything. I had no idea who I was during the infection. I lost my ability to swallow, my speech functions, and all motor functions. I atrophied so quickly over a few weeks that I became immobile and rail thin. Bladder control also became an issue, as well as balance and perceptions. But, I am blessed – most of everything has returned. I also worked incredibly hard to survive and shine for others.

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

My life is truly hard, but it’s also amazing. I am not able to work. I take care of my mother, which could not have happened without this stroke. My days are unpredictable – my energy can wane quickly without warning. Arthritis and neuropathy and HIV dementia fill my days, as well as domestic duties while my husband works. I am creative daily in some aspect. I add inspirations to Facebook. I am grateful. I know I am more than this body. I am an eternal spirit. I feel aware and know that I am more.

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

I miss writing music, freedom of body and mind, fluidity of speech, my handwriting, and self-reliance.

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

My compassion has deepened and expanded in my life in ways unimagined. I embrace and deepen into being a source of inspiration and hope for others. I enjoy volunteering; creating digital pieces of heART; having quality time for my sister, Laurie; and having time with my cat, Autumn. I also enjoy singing.

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

I dislike feeling caged in my body, not being able to do what I once could do effortlessly, and my speech and motor functions being so affected, but I have faith.

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

Several things have helped me: meditation, Qi Gong, chanting, forgiveness, singing, playing, and serving others.

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

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

Yes. I feel it confused and bewildered all of my friends. Many fell away, and I do not blame them. This is my journey. My marriage to my amazing husband is withstanding the strain this stroke has brought into our lives. My family is very supportive. We have all become stronger and more caring people.

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

Yes. My social life is only what I make happen now. It still takes effort to talk and think, but many new friends have opened their hearts to me and accept me as I AM.

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

My husband, Cal Kalaf, is my main caregiver. I do know what caregiving means. I understand in that I helped three previous husbands pass over from AIDS.

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

"From Suffering to Soaring" by Richard Schooping

“From Suffering to Soaring” by Richard Schooping

I will share my story of hope through my first book, “From Suffering to Soaring.” I will offer insights and strength to as many souls as possible. I plan to tour and to write more books. I will finish my second book, which shares both my and my husband’s perspectives of the stroke. I hope to write more albums as well. I want to make the most of my time while I am still here.

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

Don’t judge the stroke or disease. Things happen. There are huge patterns at play. Respond with caring and self-love. Nutrition is important. We are what we eat. This is good advice for all of our senses.

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

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

Find a creative outlet.

Get out in nature more.

Simplify your life.

Honor the entire process.

When emotions rise and attempt to capsize you, become aware of your breath and breathe through them.

Emotions are only energy.

Energy is neutral.

Look into mindfulness meditation.

Keep the faith.

Don’t blame.

Do whatever calms you.

This too shall pass.

Share your story.

 

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

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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!

(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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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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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!

Feel free to “Like” my post.

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.

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No memory of the day that changed my life

My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

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