TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Stroke’

Survivors SPEAK OUT! . . . . . . . Bill Gasiamis Stroke Survivor & Podcaster

Survivors SPEAK OUT!     Bill Gasiamis

Stroke Survivor & Podcaster

by

Donna O’Donnell Figurski

Bill Gasiamis

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

Bill Gasiamis

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

Melbourne, Australia

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

My stroke happened on February 12, 2012. I was 37.

4. How did your brain injury occur?

It was caused by bleeding of an AVM (arteriovenous malformation).avm-clipart-1

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

It was seven days before I took any action about it.

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

I was in hospital for seven days. After six weeks at home, my brain bled again (March). It bled again in November 2014, and then I had surgery.

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)? How long were you in rehab?

I had inpatient rehab for one month and out-patient rehab for six months. I had to learn to use my left side again and learn how to walk.

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

I have numbness on my left side. Fatigue is a problem. I have minor balance issues when I am tired.

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

Life is better. It’s more complicated because of what happened but my personal growth has been huge.

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

I miss playing running-sports, like soccer.R-2

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

I have a new appreciation for working on things that are hard and take a long time to complete.

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

Sometimes, I wish I had more energy.

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

I was helped by lots of counselling.

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

It has, but for the better. By my own standards, I am a better person than I used to be.

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

No

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

I don’t have one. (I am my own caregiver.)

03 BILL GASIAMIS mage-1024x998-118. What are your plans? What do you expect/hope to be doing ten years from now?

I intend to continue to interview stroke survivors on my podcast, to speak on stroke-related topics, and to write books on stroke recovery.

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.

Survivors need to understand that emotional recovery is a very important part of recovery. It is often overlooked. Emotional recovery supports both the physical and mental aspects of a survivor’s recovery.

R20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Take responsibility for your own recovery, and learn to put your energy into solutions instead of focusing on the problem.

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Survivors SPEAK OUT! Karina Seda

Survivors SPEAK OUT!     Karina Seda

by

Donna O’Donnell Figurski

03 Karina Seda

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

Karina Seda

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

I live in Orlando, Florida, USA.     Email: livingwithoutlimitswithkarina@gmail.com

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

My brain injury was in 2008 when I was 15 years old.

4. How did your brain injury occur?

After surgery, my intracranial pressure rose and caused a hemorrhagic stroke. (An artery popped.)

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

Regarding the stroke, everything happened in the hospital, so the nurses were the ones who identified it. But if we go a few years back, my journey began when I was 12 years old and was diagnosed with an aneurysm.

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

I was rushed back to the operating room, and they used the defibrillator twice to bring me back. They also opened my cranium again to stop the bleeding. R

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

Yes. I was in a coma for two 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?

I took in-patient rehab for one month and out-patient rehab (occupational therapy, physical therapy, speech therapy, and health guidance) for around four years – until my insurance reached its limits.

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

I had lost all movements of the left side of my body, including speech, and my eyes were stuck facing a single direction.

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

Everything changed, including career, eating habits, social activities, and desires. However, everything changed for the better: I am living with a purpose, married with my soul mate, and helping others to be the best version of themselves.

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

I miss my social life and my friends.

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

I enjoy being able to see life at a young age with a completely different point of view. I like living with gratitude, admiration, compassion, and wisdom.

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

I don’t like the headaches.144-1447424_migraine-cartoon

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

I realized that everything happened with a purpose.

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

I’ve been affected by seeing how my situation changed the people around me and by how they treated me.

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

24 Karina SedaYes. In the past, if anyone called up to do something or to go somewhere, I could easily say “Yes.” It was hard to adjust to a life where I could not. Also, I try to do everything myself, but it is a bit hard whenever people try to help when I really don’t need it.

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

At the beginning, my mother was my caregiver. But now, I am my own caregiver. Yes, it takes a lot of passion, patience, and dedication to help some who, at the time, cannot help themselves.

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

I hope to keep living in the best version of myself and to be living my purpose. And I expect to keep working on my recovery. I also want to be helping others in a transformational way so they also can do the same.

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 very frustrating to be living in suffering for a long period of time by myself. Having the right support, accountability, and system can be a tremendous help in working towards recovery.

15 Karina Seda Banner Living Without Limits20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Never give up! It is never too late to reintegrate into life in a healthy way and work towards recovery.

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Stay Safe and Healthy!

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Brain Injury Resources~Book Review “Now One Foot, Now the Other”

Brain Injury Resources …

“Now One Foot, Now the Other”

by author/illustrator Tomie dePaola

presented by

Donna O’Donnell Figurski

 

Now One Foot, Now the Other

Now One Foot, Now the Other by author/illustrator, Tomie dePaola

Now One Foot, Now the Other by Tomie dePaola is one of my favorite books. I love all of Tomie’s books, but this one touches the heart.

My husband, David, had a traumatic brain injury in 2005 and, like Bob, had to relearn to walk. I guess I was my husband’s “Bobby” as I helped David to learn to walk again.

This book is so important in helping a child understand what happened to grandpa (grandma, anyone) when they suffer a debilitating brain injury. It is even an eye-opener for adults.

I highly recommend this book to any audience.

P.S. I once had drinks with Tomie dePaola and my friend, Paula Danziger, (author of the Amber Brown books) at the Roosevelt Hotel in New York City while attending an SCBWI conference. (Society of Children’s Book Writers and Illustrators)

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Click Links under Book

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Survivors SPEAK OUT! . . . . . Steven A. Marderosian

Survivors SPEAK OUT! Steven A. Marderosian

presented by

Donna O’Donnell Figurski

 

Steven A. Marderosian Before TBI 20190429_120335

Survivor – Steven A. Marderosian Pre-TBI

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

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

4. How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, 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)? How long were you in rehab?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

surfer-boy-clipart-1It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

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

I dislike needing way too much sleep and always being tired no matter what I do or don’t tired-clipart-they-7do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

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

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisyno-noise-clipart-1 places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of income, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in m

Steven A. Marderosian After TBI 20190429_113920

Survivor – Steven A. Marderosian Post-TBI

y experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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 try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

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(Photos compliments of contributor)

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What is your name? (last name optional)

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, no

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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

What do you like least about your brain injury?

I dislike needing way too much sleep and always being tired no matter what I do or don’t do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

Has anything helped you to accept your brain injury?

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisy places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of oncome, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in my experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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 try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

 

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

 

SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . Jenni Palczynski (survivor)

SPEAK OUT! Faces of Brain Injury

Jenni Palczynski (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.

 

Jenni Palczynski (survivor)

Jenni Palczyinski 2

Jenni Palczynski – Brain Injury Survivor

Before my stroke, I was a medical malpractice litigation defense paralegal, which I loved. After my stroke, my doctor was nice enough to “prescribe” my pets – a dog and a cat – as “therapy animals.” However, because of my living arrangements, I could not keep them with me for two years, and they had to go into foster care until I was able to get a place of my own. My dog was placed with a family-friend, and my cat took up residence at an animal clinic owned by a close friend of my cousin. They stayed in foster care for two years. During that time, my cat developed fatty-liver disease. Before Christmas two years ago, we thought we were going to have to put him down. But, like his mama, he is a fighter! Because of his being placed where he was, the vet there caught the disease early, and we were able to save him. He is back to being 100% healthy. But during the time he was sick, on the advice of the vet, I would spend several days a week visiting him. He improved so much more when I was there with him.

After all that time, I got to know the vet and the staff at the clinic so well that I started volunteering time – going in and visiting other clinic animals. The animals were placed there and were looking for homes, or the animals were sick, or they had been boarded there by their parents. We soon realized that, by having me around talking to them and loving them as my own, they would also improve.

So, rather than doing a job that I had learned to love over the years, I now volunteer at the clinic tending to their animals. I have gotten to see them get better, and I have even seen some get adopted into permanent homes. If you asked me while I was growing up what I wanted to do,

Jenni Palczyinski

Jenni Palczynski – Brain Injury Survivor

I said it was to become a veterinarian because of my love of animals. Now I have found that my purpose is to give love to those animals, to see them move on to the next chapter in their life, like I am. Other than to see my kids grow up, my new purpose in life is to give love and care to animals in need. It is definitely very rewarding, and it has given me new life-long friends in the process. I also have finally moved into my own apartment, where my dog and cat are spoiled rotten, but they give me all the unconditional love I could ever want or need. It has taken me five years, but I love my volunteer-work in addition to my still being a single-mom to my youngest son (age 16), who is now also back living with me. Life is good.dog_cat_dancing

 

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Survivors SPEAK OUT! Mark Moore

Survivors SPEAK OUT!  Mark Moore

presented by

Donna O’Donnell Figurski

moore-author-photo

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.

Mark & Brenda Moore with Obamas.jpg

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.

mark-moore-brain-injury-survivor-dc-marathon

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.

mark-brenda-moore

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.

(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.

TBI Tales . . . . . . . . . . . . . . Smiling is Contagious . . . . . . Smile, Harry, Smile!

Smiling is Contagious – Smile, Harry, Smile!

by

Donna O’Donnell Figurski

harry-jordan-in-gym

Harry Jordan – Brain Injury Survivor – in Gym

Recently I published Harry Jordan‘s “Itty-Bitty GIANT Step” and a great photo of a smiling Harry on my blog. Afterwards, we exchanged messages by Private Message on Facebook. I told him that I loved his smile. However, he told me that he rarely smiles and that his mother would be shocked to see this smiling photo of him.

Well, that was enough incentive for me to challenge Harry. I told him I would publish his smiling photos on my blog if he would send me five more. He did – including one of him AND his mom.

smile

 

harry-jordan-and-mom-122716

Harry Jordan – Brain Injury Survivor & his Mom

 

 

You can read our chat below.

Donna: I just love your smile.

Harry: I really don’t smile. My mom will be shocked.

Donna: Why will she be shocked?

Harry: ‘Cause I don’t smile.

Donna: Well, you SHOULD every minute. You smile with your eyes.

Harry: I don’t look at my pics – always mean – no real reason to smile.

Donna: Well, look at this pic, and maybe you can see a reason to smile.

Harry: I will try.

Donna: It made me smile, and it’s contagious. See how many people you can affect. Start with your mom.

Harry: If it can help ANYONE, I will smile.

harry-jordan-smiling

Harry Jordan – Brain Injury Survivor – Smile, Harry, Smile

Donna: Well, it helped ME!!!!! Pick your mom up and hug her and give her a BIG smile. Then let me know what she said.

Harry: And for that I will smile.

Donna: See … it’s working! Send me five NEW photos of you smiling, and I will publish them. Challenge is on.

Harry: Ha! Ha! Ha! Dang, now THAT is a challenge.

Did you know that smiling really is contagious? How many times have you walked down the street or through a store and someone, a stranger, smiled at you. What did you do? Chances are you smiled right back. It’s almost an automatic reaction. Did you know that smiling is healthy for you? It is! It releases neurotransmitters, like endorphins, serotonin, and dopamine. These hormones are produced in the brain and can help to relieve stress and lower blood pressure. Whoever thought that a smile could be your best medicine? Well, it’s certainly worth a try.

harry-jordan-and-friend

Harry Jordan – Brain Injury Survivor & Friend

So, as we so often hear, “Turn that frown upside down!” and see how much better you feel. Harry did! Just look at all the photos of his wonderful smile. He makes me smile, and I hope he does you, too.

harry-jordan-original-smile

Harry Jordan – Brain Injury Survivor

Harry Jordan - Brain Injury Survivor

Harry Jordan – Brain Injury Survivor

Harry Jordan - Brain Injury Survivor & Cousins

Harry Jordan – Brain Injury Survivor & Cousins

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

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

As I say after each post:

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

Please follow my blog. Click on “Follow” on the top right sidebar. (It’s nice to know there are readers out there.)

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.

(Clip Art compliments of Bing.)

Survivors SPEAK OUT! Kenneth Powell

Survivors SPEAK OUT!    Kenneth Powell

presented by

Donna O’Donnell Figurski

 

 

Kenneth Powell - Brain Injury Survivor

Kenneth Powell – Brain Injury Survivor

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

Kenneth Powell

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

Saint Louis, Missouri, USA

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

2010     I was 42 years of age.

4. How did your brain injury occur?

I’ve had three hemorrhagic strokes on the lower left side of my brain.

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

I fell out of bed after trying to stand up. My (then) girlfriend found me.

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

The first stroke occurred on April 30, 2010. I knew my name, where I was, and what I was told had happened. Immediately after sleeping that night, the second stroke occurred. I was put into a coma for the next 30 days.

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

Yes. 30 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)?

I had occupational, physical, and speech therapies as an inpatient and an outpatient.

9. How long were you in rehab?

One month

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

Aphasia, right-side paralysis, complete amnesia

Kenneth Powell - Brain Injury Survivor

Kenneth Powell – Brain Injury Survivor

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

My life is challenging.

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

I miss running and normal kidney function.

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

I enjoy sharing my experience with others and proving mind over matter.

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

I dislike people’s perceptions of “the disabled.”

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

My faith has helped me accept my brain injury.

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

The perceptions about “disabled” or “handicapped” individuals have been a hindrance. Romantic relationships are nearly nonexistent.

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

Perceptions about the disabled greatly affect my life.

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

I am my own main caregiver. I am helped occasionally by my sister.

Kenneth Powell - Brain Injury Survivor

Kenneth Powell – Brain Injury Survivor

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

I hope to be back to work.

20. 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.

Ask as many questions as possible. Know and interact with as many survivors as you can (via websites, support-groups, etc.).

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

Personal and spiritual FAITH is essential to the day-to-day survival of this injury.

 

(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

harry-jordan-survivor-120916

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.

 
itsnottoolate-2015-1

simon-limbrick

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!

Feel free to “Like” my post.

 

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.

 

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“We write to taste life twice, in the moment and in retrospect.” ― Anais Nin

VIVIAN KIRKFIELD - Writer for Children

Picture Books Help Kids Soar

Mindy’s Writing Wonderland

For authors, parents, teachers & everyone who loves children’s books.

Kaitlyn Leann Sanchez

Literary Agent

Surviving Traumatic Brain Injury

TBI - Survivors, Caregivers, Family, and Friends

Claire Stibbe

Thriller Author and Blogger

The Care Factor

Loving someone with a Traumatic Brain Injury

Brain Injury Support Group of Duluth-Extension

Brain Injury Information and SUPPORT

Brain Aneurysm Global Insight

Brain Aneurysm, cerebral hemorrhaging, hemorrhage stroke

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