TBI – Survivors, Caregivers, Family, and Friends

Archive for February, 2016

Survivors SPEAK OUT! Chelsea Rolph

Survivors SPEAK OUT! Chelsea Rolph

presented

by

Donna O’Donnell Figurski

 

chelsea rolph

Chelsea Rolph – Brain Injury Survivor

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

Chelsea Rolph

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

Toronto, Ontario, Canada

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

I have unfortunately had many traumatic brain injuries (TBIs). My first one happened when I was roughly 5. I have also had a concussion at 17 and two more at 18.

4. How did your brain injury occur?

My first TBI happened because I wasn’t wearing my seatbelt properly. Somebody hit my dad in a parking lot, and I flew out of my seat and hit my head on the seat in front of me. My later TBIs happened because of my favourite sport – basketball. You see, sometimes I get competitive. Sports were also my way of releasing any built-up anger I might have. I would let it all out on the court. One day, I was going for a ball, and I got an elbow in my temple. I blacked out for a minute, but I convinced my coach and the refs that I was okay. I kept playing until my coach noticed that something about me wasn’t right, and he took me off the court. After the game, I was taken to the hospital to get checked out. That was where they told me that I have a TBI and that I should relax – take time off from school and sports.08172116cc812061b05e6a42350f7002

My later TBIs were the ones that really affected me. I remember being in a basketball game (the second of the season), and we were down by 1 point with 44 seconds on the clock. I had a lane. I drove to the net, went up for my layup, and then darkness. I was out. I woke up lying underneath the net and feeling so confused. My coach and the ref were standing by me. I was immediately taken to the hospital. I remember that my eyes were doing weird things, such that the doctor called other doctors to take a look. I actually took time off from school that time. However, I was banned from sports for the rest of my life. I was told that, even with a helmet, I would still suffer from concussions.

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

I knew the injury was serious when I started blacking out. I was also really sensitive to light. I remember that the day after I hit my head, I woke up and I was blind. I opened my eyes, but all I could see was darkness. It was a really scary feeling. I called for my mom, and she took me back to the hospital.

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

I never had any emergency treatment. However, I was tested for anything and everything. I was given an MRI (magnetic resonance imaging), a CT (computerized tomography) scan, ECGs (electrocardiograms), an EEG (electroencephalogram), and a stress test. I had ECT (electroconvulsive therapy). I wore a heart monitor for a week. They did a sleep study on me, and I was given a neuropsychological test. Some of these tests gave me answers, and some did not.

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

I was never in a coma. I just had seizures and random blackouts.

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 outpatient rehab in Hamilton, Ontario. That hospital is the reason why I had answers. I went there for roughly one year. I was on a fast track because my goal was to discover if I was able to go to school. Basically I spent my summer in the hospital to do the tests and to get the results.

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Chelsea Rolph – Brain Injury Survivor

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

I had a lot of problems. The one that affected me the most was the fact that I would pass out if I got my heart rate up. I was no longer able to play sports with my athlete-friends. I also noticed a huge shift in my personality. I used to be a very happy-go-lucky person. I wanted to be a Social Worker and help others. After my TBI, I became a huge jerk! I was always moody, I stopped caring about things, and I altered my personality so I wouldn’t let things affect me. I kept myself from getting attached to things I care about. I loved basketball, and in one second all of that was taken away from me. I still suffer from this. I have made myself an emotionless robot. I also stopped wanting to be Social Worker because I realized that if I couldn’t help myself, then I couldn’t possibly help others. I had to get bifocals. (I was having a hard time adjusting from up-close visuals to things far away.) I also had a hard time with my memory. I used to be in acting, and I could memorize a script easily. However, I was not able to remember what I read. My short-term memory was severely affected. My doctor referred to me as “an old computer.” (I had the information needed, but it took a while to get to me. I kept buffering.) I lost my abilities to multitask, to focus, and to sit still. My fine-motor skills suffered. Sometimes I have a hard time understanding what has been said to me and how to answer. I also had difficulty sleeping because I was having mini-seizures in my sleep.

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

Has my life changed? Of course! Is it better or worse? Who knows? I have suffered, and I have dealt with things on my own that people shouldn’t. I remember coming home from school crying to my mom because all of a sudden I was unable to do the things I used to do. In contrast to the thoughts of many people, I was still able to complete University. I might have just gone to college (like I should have), but now I can proudly say I have my degree! That might not have happened without my TBIs because back then I wasn’t out to prove anything. Do I now have a bigger debt than what I should have? ABSOLUTELY! However, I will never regret it. My life isn’t “better” or “worse” than it originally was, but I feel I have been very fortunate.

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

I miss my friends. All of my friends are athletes. Taking away my ability to be active took me from my friends. I was no longer able to do the things that I normally did. My friends kept playing sports, and I kept sitting on the sidelines. It wasn’t easy, but I found the ones who are able to understand that part and still be by my side. I really cherish that.

I also miss my ability to always be willing to go out and meet new people. I get exhausted a lot more easily than I used to. Before, I would never be home. I would always be working. If not, I would be playing a sport, and if I weren’t doing that, I would be with my friends doing fun, crazy things! My fiancé is a DJ, and a part of being the DJ’s significant other is going to his gigs and socializing with the other significant others. I still love doing that, but now I find it more exhausting than what it should be/used to be!

I would like to be able to go back and play sports the way I used to, but now I am a coward. I am scared of playing. I am scared of taking two steps backwards. I have moved on from what I wasn’t able to do, and I am now trying to find other things that I enjoy. I am slowly trying to get back into the shape I used to be in five years ago.

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

I enjoy the fact that I got to start over with a blank slate. I was able to take a step back and really see what and who made me happy. I love that my fiancé was in my life when I was first dealing with my issues. He has never left my side. I love that I was able to prove to doctors, friends, family, and the faculty at McMaster University that, despite what they thought, I could graduate without the accommodations I should have had. I am now out living my life. I am doing what every recent graduate does – looking for a full-time job, hopefully buying a car, and looking for an apartment. I am doing everything that most people do, except with an invisible problem.

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

I don’t like the fact that I lost something that I loved, which, I previously mentioned, was my love for basketball. I faced loss, even though nobody had passed away. I felt as though something I had strongly cared about was taken away from me. I also don’t like the fact that I have an invisible illness. I don’t want to make excuses. When I am having a problem with something, I don’t like to say, “I have had a concussion.” I don’t promote that about myself. I hated that I was so close to potentially receiving the grade 12 Athlete of the Year award and that it was taken away from me without a fighting chance.

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

A couple things have helped me on my journey to success. My rehab clinic helped me a lot! It helped me by giving me answers to the problems I was having. I don’t normally like talking about my feelings, but I do enjoy talking to one of my pets. My mom, my sister, and my fiancé have also helped me. The one thought that I always have is “My TBI happened. I can’t dwell in the past, and I can’t make excuses. What I can do is do what I love. If I have a challenge, problem solve. What can I do to make this work for me?” I realized that I shouldn’t have to give up on something because it is tough. I have to come up with my own solutions to deal with that problem.

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

Besides the fact that I am moody, my TBIs haven’t affected my relationships too much. It was tough dealing with my changed memory. If my parents asked me to do something for them, there is a good chance I would forget. When my boyfriend and I were originally dating, I hated that I had to ask him personal questions multiple times because I couldn’t remember. Other than that, not much has changed.

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

I have mentioned before about my social life. I felt like I had lost my friends because of my inability to play sports alongside them. I have become more of an introvert. I like coming home and relaxing. I get overwhelmed socializing for a long period of time. I need breaks from people – I need “me” time.

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

My mom was my main caregiver. It must have been really tough on her to have her baby daughter come home crying every day because of frustration. My mom has been my rock. She has been by my side every step of them way. I don’t know what I would have done without her. She was the one who supported me when I decided to go to University without any help, and she was there to see me walk across that stage.

Chelsea Rolph 1 Survivor 061415

Chelsea Rolph – TBI Survivor – Graduate McMaster University

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

I am always wondering what I want to do with my future. I would love to inspire some people. I have always thought about working at a juvenile detention centre. I would love to talk to the kids and show them that they can prove others wrong – “Don’t let others tell you who you are or who you’re not, and don’t let them control your future.” I want to write about the power of “Yes” and “No.” Other than that, I would love to get married to the love of my life and maybe start our own family!

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

I want others to know that something good can come out of this situation. I really had a hard time with this. I ran into one of my former high school gym teachers, and I was told that, because of me, the rules around brain trauma have been altered at the school level. The School Board has created guidelines with steps to follow if a student has a brain injury. I work at a recreation centre teaching sports to kids, and I walked out of the gym and saw the guidelines posted. A student must have time off, and when the student returns, he or she is to have a private room with no distractions. Even though I had to go through my TBIs with no support from my high school, except for some of my teachers, my journey helped create change for others.

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

Never lose hope! You are only as strong as you feel. Keep pushing forward, and make the best of every day. Seize the moment and life with no regrets. Things happen. If we dwell on the problems, we will never give ourselves room to grow and improve. If I decided not to go to University and just take the year off, I might not be in the state of mind that I am in today. I also might not have met the people who took me “across the ocean.” You are the main character in your life-story. You get to choose the paths you take. Don’t let barriers get in the way of your happiness. If something doesn’t work for you, make it!

 

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

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

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(Photos compliments of contributor.)

 

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So, Whaddya Think? Opinion: Rethinking the Design of Football Helmets

So, Whaddya Think?

 My Opinion: Rethinking the Design of Football Helmets

by

David Lloyd

presented

by

Donna O’Donnell Figurski

 

So Whaddya Think Brain th-4The reason for a hard helmet in American football is to prevent deaths from skull fractures. The attempts to make bigger and thicker helmets have been based on trying to absorb linear impact force, but that’s based on the faulty notion that linear impact force is related to brain injury (Condi, 2015).

It is the sudden rotation of the head that actually causes brain injury (Meaney, Morrison, & Bass, 2014). A bigger helmet “leverages” rotation, increasing the likelihood of brain injury (2016, January). We need to rethink helmet design entirely. I suggest using an artificial scalp (Aare, 2003), like the leather helmets from the 1930s (Stamp, 2012, October), with a springy, lightweight, carbon-fiber framework to absorb linear impact. The design should include guarding the mouth and chin.

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David Lloyd – Brain Injury Survivor

Another possibility would be a variation of the so-called “invisible helmet” (Haupt & Alstin, 2016), which is like the airbag in a car. Players would wear invisible-helmet-collars, which instantly expand to cushion the head upon impact. (While I think this could be a great idea for bicyclists, I suspect it would not work for football, but since it occurred to me just now, I thought I would include the idea.)

I would also put a couple of strategically placed, clear, and inexpensive disposable gelatin capsules in the helmet. These gelatin capsules would contain a bright-colored liquid dye in the center. When an impact is sharp enough to cause the gelatin capsule to release the dye, the capsule turns bright red (assuming a red dye was used) to indicate a possible brain injury. The moment a player’s dye-capsule breaks, that player is out of the game (possibly along with the opponent who hit the player). A light-sensor could trigger an electronic ID number to be broadcast instantly to officials, so an appropriate response could happen immediately. Every incident in which a dye-capsule is broken is recorded as a possible sub-concussive injury. Players with too many sub-concussive injuries can no longer play, regardless of apparent brain health.Gelatin Capsules.jpg

In addition, a smart phone-based application (Lathan, Spira, Bleiberg, Vice & Tsao, 2013) is used to test the player’s response times to a short series of tests, with scores compared with a baseline. Concussion is diagnosed on the field when the player’s test score is significantly different from his baseline. If a concussion is diagnosed, the player does not return to the field, and, at the discretion of the physician, the player may be treated with a neuroprotective drug, such as NeuroStat® (Campbell, Elmér, & Bronnegard, 2015), to prevent the death of neurons, which generally occurs before the symptoms of concussion are apparent.

th-1I think the Kevlar insert sounds like a very good idea. Put that layer next to the head, below the artificial scalp I suggested. This in turn is to be below a light weight, springy framework, which I imagined would absorb linear impact by rapidly changing shape and then dissipating the energy by vibrating. The artificial scalp layer, in addition to sliding to absorb rotational impact, would also insulate the player from damage due to the vibration energy.

The three most important issues are (1) detecting potential sub-concussive injuries when they happen and before they cause symptoms (via the gel-capsules), (2) protecting against skull-fracture, and (3) protecting against sharp rotation, which requires a helmet with a much smaller surface area.

Many studies (Kis, Saunders, Hove, & Leslie, 2004) over the years have concluded that protecting against linear impact is equivalent to protecting against rotational impact. If one reads only abstracts and conclusions from these studies, one may be led to believe rotational factors don’t need consideration. However, only recently have there been any attempts to measure rotational damage, and even in those cases, the tests actually measure linear impact from various angles. They assume it is possible to infer information about rotational impact from this information (Kis, Saunders, Irrcher, Tator, Bishop, & Hove, 2013).Concussion

I don’t believe a linear impact test provides any significant data regarding rotational injury to the brain. I think a meaningful test of rotational impact is with my dye-in-gelatin suggestion. It is simply not possible to design a laboratory test that can reliably measure all possible angles of force (Hernandez, Shull, & Camarillo, 2015) created in a multi-vector, real-situation impact. I have yet to see a meaningful test of damage caused by compression waves (Laksari, Wu, Kurt, Kuo, & Camarillo, 2015), which, depending on frequency, can be augmented by hard objects, such as helmets or even the skull itself. Create a clear-gel facsimile of a brain, add a few grapes to the gelatin to simulate denser areas of the brain, put it in a structure like a skull, wrap the skull in something analogous to skin and hair, and put THAT in a helmet. Then spin it, and drop it onto a fast-moving conveyor belt. Now count the fractures in the gelatin per cubic millimeter (using a microscope), and you will have BEGUN to create a meaningful model of what happens in a brain injury. It is likely that one cannot realistically study impact on the brain unless the artificial brain is connected by a neck to a body (Hernandez, Shull, & Camarillo, 2015).

I think attempting to reform the game would meet such extreme resistance that all kinds of misinformation would get published – obscuring the facts and preventing change. A better approach is to detect and track sub-concussive injuries before they compound to a level that threatens lives or affects mental performance.

Some are suggesting the elimination of football, but this “solution” makes no sense unless we eliminate all contact sports. I know boxing is much worse than football, in terms of the risk of brain injury. I’m pretty sure I could find evidence to indicate thatth-2 hockey and soccer are statistically more likely to cause brain injuries than football, but even basketball, track, wrestling, swimming, skating, ice skating, and even bicycling present similar dangers. [Actually, football is second only to cycling, followed by baseball and basketball for associated brain injuries (Sports-related Head Injury, 2014, August)]. In my mind, the greater danger to the collective health of the nation would be the elimination of these various sports (Devine, & Zafonte, 2009). Humans need to be active, and there is no way to eliminate the potential danger of living a healthy life.

 

So, Whaddya Think?

Let’s get a dialogue going. Post your comments in the Comment Section. Directions are below.

So . . . what do you think? Is there something you are passionate about in this Brain Injury (BI) world? Do you want to be heard? Your opinion matters! You can SPEAK OUT! on “So Whaddya Think?”

Simply send me your opinion, and I will format it for publication. Posts may be short, but please send no more than 500 words. Send to Neelyf@aol.com

I hope to HEAR from you soon.

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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 last name to be posted, please tell me in your email or Private Message.)

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

 

Here is this week’s Itty-Bitty GIANT Steps

 

shaveBarbara Dan (caregiver)My husband came out of the bedroom with th-1his shaving kit and cell phone, and he gave me the biggest smile. He said, “My mind is getting better. Do you know why? I wanted to get my cell phone, but when I went into the bedroom, I couldn’t remember what I went in for. Then I started doing my shaving stuff, and when I saw your cell phone on the night stand, I remembered what I went into the room for – my cell phone.” He was so excited. The little stuff counts so much!
12674091_940851459283737_1880330839_nCarmen Gaarder Kumm (survivor)…Yesterday I left to go to the Mall of America, which is about a three-hour drive from my home, with a 16-year-old, a 15-year-old, and a 10-year-old. (My 15-year-old family+cardrove 80% of the way, and my 16-year-old was a Peruvian exchange student.) Halfway there I realized I forgot my pill for sleeping and my “happy” pill. I was concerned Mallbecause we were spending the night in a hotel, and then the next day would be spent shopping and driving home. Not only was I able to do it all with no anxiety, no bursts of anger, and no frantic rushing, but I also came home and attended my husband’s fire department banquet. (Note: I planned to sleep all the next day if I needed to.) Yay me!

 

Evan Joseph Powers (survivor)I just got incredible newcollege-student-studying-clipart-good-student-clipart-196s :), and I have to share the joy. College_Clip_ArtI got approval to go to a university – covered (thanks in part to my test scores ;). I get to fulfill my dream of working with TBI survivors. I’ve had this dream since my accident in August 2014. I am beyond happy right now!

 

YOU did it!

Congratulations to 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.

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On The Air: . . . . . . . . . . . . . . Brain Injury Radio . . . . . . . . “Another Fork in the Road” with Jessica E. Taylor – Brain Injury Survivor & Author

On The Air: Brain Injury Radio “Another Fork in the Road”

with

Jessica E. Taylor – Brain Injury Survivor & Author

presented

by

Donna O’Donnell Figurski

images-1Jessica E. Taylor learned about brain injury the hard way when she fell down a flight of concrete stairs. That event changed her life forever. Jessica had to pick up the pieces and glue them back together. She details her life with brain injury in her book, “From Tragedy to Triumph: Journey Back from the Edge.”

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Jessica E. Taylor – Brain Injury Survivor & Author

She will share her story and tell of how she advocates for brain injury survivors now.

If you missed this show with Jessica E. Taylor on “Another Fork in the Road” on February 21st, 2016, don’t fret. You can listen to the archived show here. Click the link below.

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” with Jessica Taylor – Brain Injury Survivor & Author

(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 intact with your friends. It’s easy! Click the “Share” buttons below.

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Survivors SPEAK OUT! Jessica Taylor

Survivors SPEAK OUT! Jessica Taylor

presented

by

Donna O’Donnell Figurski

 

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Jessica Taylor – Brain Injury Survivor and Author

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

Jessica Elizabeth Taylor

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

Vancouver Island, British Columbia, Canada

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

Age 31

4. How did your brain injury occur?

A fall down a steep staircase head first into a steel-plated door

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

My husband knew I was sick, but he did not know I had a brain injury. (I was not told that I had brain injury until six years after the injury!) I didn’t know who I was, who my husband was, and who my children were. I became a child again. I had to relearn everything. My personality was greatly changed. My balance was off for some time. My left hand curled inwards, but I trained it to straighten. I also had contusion of the back, a hemorrhage behind my right eye, and scalp laceration.

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

Intensive care

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

I was in a semi-coma for several 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)?

I had rehab only in a psychiatric ward as a day patient for some months at a time in two different countries. I trained myself by learning again and also by becoming positive and never giving in to depression or my disabilities.

How long were you in rehab?

I had no proper rehab. I was just given many IQ tests and psychiatric care. This did not help matters!

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

Recent recall was and still is a problem. I cannot take on too may projects at a time. I have to avoid stress at all times.

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

My life has been enhanced through training my dormant brain neurons myself and by having spiritual knowledge. As a result, I am a happier person.

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Jessica Taylor – Brain Injury Survivor and Author

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

I do not look back.

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

I enjoy being who I am.

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

I don’t think about the past. I just put up with my disability as a part of my life.

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

No

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

I had distant relationships with my husband and my children, as well as with all who knew me.

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

My new and holistic view of life has changed all that I do and think.

17. Who is your main caregiver?

ME

Do you understand what it takes to be a caregiver?

I know what caregivers should be aware of with regards to brain injury.

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

I hope to keep sharing my knowledge through the publication of my books and by giving talks.

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?

11 Taylor, Jessica Book Cover copy

From Tragedy to Triumph: Journey Back From the Edge by Jessica Taylor

I only wish that I had been taught by specialists how to retrain my brain in the early years, as opposed to doing so later.

If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Know that we can train and activate dormant neurons through studying a subject that is of interest. This has to be done frequently.

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

My advice is to study spirituality and to read as much as possible about the subject. I do not mean in the religious sense – study people like Deepak Chopra and watch Super Soul Sunday on TV. Stay positive and learn not to give in to negative thoughts. Try hard to rise above fear, jealousy, hatred, greed, envy, etc., and your vibration will increase in frequency. All this happened to me through my self-rehab.

To learn more about Jessica Taylor, click on the following links.

Jessica Elizabeth Taylor website
Jessica E. Taylor Facebook
Jessica E. Taylor Twitter
Jessica Elizabeth Taylor Linked in

Jessica’s book

“From Tragedy to Triumph: Journey Back From the Edge”

 

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

If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

 

As I say after each post:

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

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

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

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

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

TBI Tales . . . . . . . . . . . . . . . . “Don’t Stop Believing” by Marilyn Seuffert

Don’t Stop Believing

by

Marilyn Seuffert

presented by

Donna O’Donnell Figurski

 

Sueffert, Marilyn Caregiver

Marilyn Seuffert Found Her Love Again

Eleven years ago, I fell in love with the most beautiful gentleman I had ever met. I was 32, and he was 47. I was elated when I met him.

Two weeks into our wonderful love affair, we rode our bikes to my place. He turned to look for me and fell off his bike. He lost consciousness and sustained a subdural hematoma. I lost him in that moment. I tried to get him back for two years, but unfortunately his injury split us apart.

I never again met anyone whom I loved as much as him. On the ten-year anniversary of the accident, he contacted me, and we met up. I was so happy to see that he had made a great recovery.

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Marilyn Seuffert and her Love

I was still in love with him. We got back together; we live together; and now we are engaged. My message is to have faith because miracles happen. Things may take time. Don’t stop believing!

 

(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.

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(Clip Art compliments of Bing.)

SPEAK OUT! Guest Blogger Heather Sivori Floyd . . . . . Thoughts from a Caregiver Mom

Thoughts from a Caregiver Mom

by

Heather Sivori Floyd

presented

by

Donna O’Donnell Figurski

 

Girl Blogger cartoon_picture_of_girl_writingThere is nothing sweeter or more rewarding in life than spending time and helping those with special challenges.

I do not like the word “disability,” so I use “special challenges.” Why define people by what they are or are not capable of? While some days my heart hurts from my knowing the challenges that TJ (now 13) will face in life, my heart is actually very full from my spending the time with him that I do.

Heather Sivori Floyd 1

Heather Sivori Floyd – Caregiver

As I tucked TJ in the other night, I just sat there in a moment of silence and reflected back on everything we have been through. He has an innocence about him now. But I was overcome with a moment of sadness thinking about all that was ripped from TJ at such a young age (7 years old) and the special challenges that he will be faced with in adulthood.

I try not to think like that, but sometimes a parent does. I would say that it is quite normal. The burden a parent carries when advocating for his or her child with special challenges will at times take your breath away. You constantly question if you are doing the right thing or if you could be doing more. You realize that, even into adulthood, your child’s ability to have a voice is gone. You will forever be your child’s voice. You accept that, and you do what you have to do to make that voice heard – even if it means roaring.

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TJ – Brain Injury Survivor

Over the years, people have told me not to worry about the future. But it is never a possibility. I know my mom-friends in a similar position will understand this. When in a position like this, you have to think about it. It’s really not an option. You are the sole caregiver, and if you do not make a plan for the future, no one else will. Also many programs to help children like TJ as an adult have a mile-long waiting list (meaning years).

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TJ – Brain Injury Survivor

Being TJ’s sole caregiver has been challenging and exhausting but, at the same time, very rewarding. I have learned so much about myself and my desire to help others. I have learned from TJ about the human spirit and not giving in. He amazes me daily. Yes, things are very elementary for TJ now. His day consists of food, cartoons, therapy, etc. – very basic needs. In-depth conversation has never been a possibility with my son since his brain injury so mercilessly ripped away his dignity and his ability for independence. The list goes on. But that doesn’t mean we give up. TJ certainly has not.

With love and persistence, TJ has defied the odds. After all, 60-80% of patients typically do not survive an acute subdural hematoma, even with surgery. TJ did. He continues to defy the odds and what we were told would be our “new normal.”

Heather Sivori Floys TJ 4

Heather Sivori Floyd, caregiver for her son, TJ

I am often asked how I do it. (It is a general question, and it is the most-asked question from many family members and friends over the years.) I just do it. You do not have a choice. Many times your heart hurts like no other, but you keep going because you are it for them. There is no one else. You learn to draw on inner strength. You learn to keep it together because you can’t afford to break down.

In my case, I learned from my son how to love life and still laugh. TJ does daily. If he can, then so can I. It doesn’t make the special challenges any easier or the decisions to be made any

Heather Sivori Floyd & TJ

Heather Sivori Floyd and her son, TJ

less hurtful. What it does is fill your heart with an overwhelming love. I am honored to know a person like TJ in my life. He is the definition of courage, strength, hope, and love. I’ve said it before, and I will say it again: He is my hero. To overcome daily adversity with a smile on his face makes him downright amazing. No matter where he ends up intellectually, TJ will always be pretty amazing to me.

 

Thank you, Heather Sivori Floyd.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of Heather Sivori Floyd)

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