TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury Survivor’

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

 

051916 Roberts, Crystal Caregiver for Son

Ethan – Survivor

 

Ethan (survivor)…submitted by his mother, Crystal Roberts (caregiver)…My son is

starting to crawl. He suffered a severe TBI (traumatic brain injury) and a stroke in an accident that happened two years ago.

This is my son’s first attempt.

 

 

 

Robert Williams (survivor)…Never thought I would garden again. I had a tumor surgically removed from my brain stem, and I was in a wheelchair for over five years afterwards. The doctors didn’t think I’d ever walk normally again (but God makes the impossible possible).

Pictures of me gardening.

Robert Williams 1

Robert Williams – Survivor

Robert Williams 2

Robert Williams 3

Robert Williams – Survivor

 

 

 

 

 

 

 

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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(Clip Art compliments of Bing.)

(Photo compliments of contributors.)

Survivors SPEAK OUT! . . . . . . Ina M. Dutkiewicz

Survivors SPEAK OUT! Ina M. Dutkiewicz

presented

by

Donna O’Donnell Figurski

 

Dutkiewicz, Ina M. Survivor 041316

Ina M. Dutkiewicz – Survivor

 

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

Ina M. Dutkiewicz, pronounced “Ena”

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

Milford, Michigan, USA     inadutkiewicz@gmail.com

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

I had my brain injury on February 3, 2010. I was 43 years old.

4. How did your brain injury occur?

While driving to work, I slid through a stop sign because of black ice. I was hit by a pickup truck.

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

I was immediately put into a coma.

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

I was in the Neuro-Intensive Care Unit for three weeks. A feeding tube was in my belly, and an incision was made in my forehead (to relieve the pressure on my brain from bleeding, I think).

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

Yes. I was in a coma for a total of four and a half weeks. My coma was not medically induced.

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 started inpatient rehab for six weeks at a head injury place where I had to live (Origami in Mason, Michigan). Then I was able to transition to outpatient rehab. I still have to return daily for therapies and doctor appointments. I have done physical therapy, occupational, speech, and language therapies, driving therapy, and vocational therapy

How long were you in rehab?

I did rehab for a total of five years. I still do counseling every other week.

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

I have gait issues, memory problems, and word-finding difficulty. My personality changed. (I’m more docile – easy going – now.) My pelvis was broken on both sides from my seat belt, which means I have daily pelvis/hip pain. I have also had a headache every day since my car accident. Some days, they’re only pressure; others, pounding.

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

My life has changed 100%. My husband divorced me a year after my car accident, so now I live with my mom. I do not work. I am on disability, which is barely enough to live on.

11. What do you miss the most from your pre-brain-injury life?Dutkiewicz, Ina M.car

I miss my friends.

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

I like that I am more laid back and not as serious.

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

I dislike that I feel lost some days. I’m not working, and I don’t have anything worthy to put my hand to. My kids are now grown and living on their own. They have their own families. Also, my ex-husband has moved on to a girlfriend. It’s like I was left behind. 😦

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

My Christian faith has been a HUGE help to me.

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

I have no friends from my past (pre-TBI) life. It is sad.

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

My life has totally changed. I now spend my days with my mom – going to things she enjoys at the Senior Center. I am not really with people my age. While I enjoy the time with her, I long for age-appropriate friends.

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

My mom is my main caregiver. Yes, I realize how my TBI has changed her life. I know that she has had to give up things to support me.

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

I really would like to get a part-time job in the future. My experience is with office work. I was an Executive Assistant before my car accident, helping with payroll and AP/AR (accounts payable/accounts receivable) on top of taking care of all correspondence that left the car dealership I worked at.

Dutkiewicz, Ina M. Survivor 2 041316

Ina M. Dutkiewicz – Survivor

I19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

My helpful hint is that it is okay to be different. In a lot of cases, brain injury truly is an invisible disability. In outward appearance, we look “normal” (whatever that is). That means that we can easily blend in, but oftentimes it is hard to keep up. We need to find our own group of people to hang out with who understand where we are coming from and what we deal with on a daily basis. A support-group is a good place to start.

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

Don’t give up on yourself. Others can turn away and leave you, but your strength comes from you – no one can ever take that away from you. AND, you can rely on yourself to struggle through your low days and celebrate your victories!

 

(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.

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SPEAK OUT! Guest Blogger . . . GeorgeAnna Bell . . . . . . . . . . . . . How My Brain Injury Affected My Life

How My Brain Injury Affected My Life

by

GeorgeAnna L. Bell

presented

 by

Donna O’Donnell Figurski

 

Girl Blogger cartoon_picture_of_girl_writingI was diagnosed as being moody at nine years old. I still have that diagnosis to this very day: “mood disorder due to brain injury.” I also have anxiety and panic attacks. I still have today most of the same problems I had back then, just in an expanded manner.

GeorgeAnna Bell - Survivor

GeorgeAnna Bell – Survivor

I remember one thing that always frustrated me – Before my head injury, I was able to read, comprehend, and retain what I was reading. I remember having A to A+ grades and never getting into trouble. But, as soon as I had my head injury, I remember being hit a lot with a ruler by the nuns, being called “demon child,” not being able to read out loud, and having issue after issue trying to remember what we just learned or read five minutes ago and being told that I was lazy. (Oh, that one always got my goat.) I could not keep quiet or shut my mouth for more than five seconds, and I would speak out of turn. I could not sit still in my seat, and I was constantly moving around and around. These are some of the things I personally remember.

Kids_smiling_girl_cartwheelI know my parents wondered why I acted out, and they took me to multiple specialists during my youth. I was diagnosed with optic nerve damage, but no other problems resulting from my head injury were identified. Each doctor gave my parents the same answer: “There is no logical explanation as to why she is doing this now when she did not do it before the head injury.

I was extremely impulsive and still am to this day. In addition to the moodiness, this has been one of the hardest things for me to overcome. I experience emotions very quickly and intensely. As a child and into my teen years, I was very moody and got aggravated very quickly over the littlest things. I always felt anxious without exactly knowing why most of the time. It still happens to me to this very day. I will have an anxiety/panic attack, and I cannot explain why it happened. Recently, I went to a friend’s house, and I had to leave soon after I got there because I started to have an anxiety attack. I get anxious easily still today because I am so afraid people are going to make fun of me and tease me because I am different. I do not tend to keep friends very long because they tend to find something that is strange or I say something weird and they run from me.

I have absolutely no tolerance for change. I have no patience when it comes to waiting – I have to have everything NOW, NOW, NOW. I am always told I have indiscreet ways for making my feelings known to others. So many people take my statements out of context. I feel that I am acting appropriately, but others do not see me that way. When I change my way of saying something or going about something, I am told I am coming off as hostile or aggressive. I do not see it that way, nor do I mean it in that way either. I try to explain my head injury to others, but they tell me to shut up and act normal and stop giving excuses. Yet, it is not an excuse; it is the truth.gg66852714

As a child, as a teenager, and even in my adult years, I lacked awareness of my own personal deficits. It was only about five years ago that I started to realize the things I do that cause these issues, and I personally have tried to change them.

I would verbally lash out, cry, become depressed, and literally throw temper tantrums. This went on into my early 30s. I realized that, if I do not change, I will never have anyone in my life because all I do is find a way to push everyone out of my life. It wasn’t until maybe a year ago that I started to try to change things on my own.

I have also tried to seek professional help, even going as far as intentionally getting myself diagnosed as being “severely mentally ill” just to get the help. But, nothing worked. Actually, getting that diagnosis set me back years.

I had NO assistance from the mental health system. They were actually making my problems worse. Now I try to address the fact that there is an issue, and I doggedly try to understand what the physical, emotional, and psychological effects are upon my daily day. I try to rectify those effects that I deem as a hindrance to my social well-being by forcing myself to change the way I interact with others. I started by intentionally going to bars, not to drink, but to interact with others so I could watch how people reacted to certain behaviors. Honestly, this was hard and long. I lost people from my life, but those people were not the people I truly wanted in my life anyway.family-clip-art

I have a problem keeping people in my life as a result of my inability to function properly in certain social situations. The majority of family and/or friends that choose to maintain their relationship with me either ignore or downplay any behaviors that I portray. Only a select few recognize and respond well when my behaviors are considered outside social normality. When people start to see the social abnormalities in my personality, most either ask what is wrong with me, why I am acting like a crazy person, or just never speak to me again by cutting me out of their lives. (Almost always, they cut me out little by little.)

sad-teenage-girl-clipart-teen_girlDuring my teenage years and into my 20s and even 30s, I had depression on and off. It got better after I had a hysterectomy. When my behaviors started to level out a lot, I was able to control myself better and move past other issues by actually learning not to do this or that.

Amber GeorgeAnna Bell's Service Dog

GeorgeAnna Bell’s Service Dog, Amber

Within the last year, I have found one of the best outlets to cope with the changes in my behavior. I now fall back on crocheting. I make things for others who are in need of certain things more than I. For years, I would fall back a lot on my dogs and my boyfriend. Honestly, one of the dogs – my service dog, Amber – helped me break free from my isolation. The attention that people placed on her made me break free of the isolation I had restricted myself to. I interacted with people just by talking. I learned how to cope with my anxiety and my expression around other people.

 

Thank you, GeorgeAnna Bell.

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

(Clip Art compliments of Bing.)

(Photos compliments of GeorgeAnna Bell.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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On The Air: . . . . . . . . . . . . . “Another Fork in the Road:” . . . . Substitute Hosts, Lisa Dryer & Cam Compton – M.S. Meets Stroke

On The Air: “Another Fork in the Road:” with substitute hosts, Lisa Dryer & Cam Compton “M.S. Meets Stroke”

presented

by

Donna O’Donnell Figurski

 

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Brain Injury Radio Network (BIRN) hosts, Lisa Dryer of “Mess with M.S.” (Multiple Sclerosis) and Cam Compton of “Cam’s Corner” step up to the mic on “Another Fork in the Road” while I, (Donna O’Donnell Figurski) traveled to Michigan for my nephew’s wedding. Party Time!

Lisa and Cam discussed the similarities and differences of each of their brain injuries and how they approach life from slightly different angles. Both hosts emphasized how each brain injury is different and how each survivor responds to the difficulties presented to him or her.

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Lisa Dryer – Survivor – Host of “Mess with M.S.”

03 Cam Compton Photo for Banner copy

Cam Compton – Survivor – Host of “Cam’s Corner”

 

 

See you “On the Air!”

On The Air: “Another Fork in the Road:” with substitute hosts, Lisa Dryer & Cam Compton “M.S. Meets Stroke”

 

(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.

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

Feel free to “Like” my post.

 

 

 

On The Air: . . . . . . . . . . . . . “Another Fork in the Road:” . . . . Panel: Behavioral & Emotional Problems After Brain Injury

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

Panel: Behavioral & Emotional Problems After Brain Injury with

Lisa Dryer and GeorgeAnna Bell

presented

by

Donna O’Donnell Figurski

images-1One of the most difficult aftereffects of brain injury is losing oneself. Depending on the injury and which part of the brain is impacted determines the type of emotional and behavioral change in one’s personality. A person who was agreeable, complacent, reasonable, and calm before the injury may change drastically to one who is violent, depressive, or struggles with anger management. These effects are not easy for others to understand – BUT, have you thought about how difficult it must be for the survivor?

Dryer, Lisa Survivor

Lisa Dryer – Survivor & BIRN Host

 

My panel, M.S. (Multiple Sclerosis) survivor, Lisa Dryer, and brain injury survivor, GeorgeAnna Bell, will join me to discuss this sensitive topic.

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GeorgeAnna Bell – Survivor

See you “On the Air!”

On The Air: Brain Injury Radio “Another Fork in the Road” Panel: Behavioral & Emotional Problems After Brain Injury

(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.

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

Feel free to “Like” my post.

SPEAK OUT! . . . . . . . . . . . . . . Faces of Brain Injury – Evonia with her Mom, Amber Baxley

SPEAK OUT! Faces of Brain Injury –

Amber Baxley (caregiver for her two-year-old daughter, Evonia)

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.

 

 

Evonia

Evonia – Brain Injury Survivor

(Note: Today, May 19th, 2016 marks Evonia’s first anniversary of her brain injury. She has a long road ahead, but she has a very loving and supportive mother who will help her through)

Baxley, Amber 2 Caregiver of Evonia

Amber Baxley – Mother of Evonia – Survivor

I’m feeling emotional. Today is the one-year anniversary of my daughter’s brain injury. (My daughter, Evonia, will be three next month.) Evonia’s life was forever changed a year ago today. At 3:00 pm on May 19th, 2015, my now two-year-old daughter was shaken and got her traumatic brain injury (TBI). There is not a day that goes by that I don’t wish I could go back to that day and stop it from happening. I made a huge mistake that day. I chose to leave my daughter and her big brother with a man I thought I could trust – a man I thought loved his family, especially his children, more than anything in the world. Man, was I wrong! I wish I had taken my children with me. That day, not only did my daughter’s life forever change, but also I learned that you cannot always trust those who are supposed to be the ones you can trust.

Baxley, Amber 2 Caregiver of Evonia 3

Evonia – Brain Injury Survivor

Evonia spent three weeks in a coma fighting for her life because of him. She spent three months in the Pediatric Intensive Care Unit trying to recover some. My daughter had bleeding of the brain caused by her having been shaken. The blood tried to clot and caused a stroke. As of now, my little girl has had a total of five brain surgeries. She’s also had surgery to place a feeding tube into her stomach and another to remove it. Evonia will likely need to have other surgeries as she gets older. Before everything happened, Evonia was a bright, bubbly little girl – full of life. Because she was always exploring, she was always getting into things. Evonia was perfectly healthy. Now she has to fight to regain every milestone she had already surpassed.

Baxley, Amber Caregiver of Evonia 1

Evonia – Brain Injury Survivor

I so wish I could go back and do that day over again. She would have never had to go through this. If I could, I would do it in a heart beat.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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.

If you don’t like my blog, “Share” it intact 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 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

#2 Shaw, Jenny Niday Survivor 050116

Jenny Niday Shaw – Survivor

Jenny Niday Shaw (survivor)…I am happy after three years this April. SmilesI finally smiled again – I mean a real smile. It is the simple things, folks … the simple things.

 

Viera, Meg Survivor 051716

Meg Viera – Survivor

 

 

Meg Viera (survivor)…I just got my grades back from my last college semester. I’m usually on the Dean’s List, but I took a harder class this time. Dean's List

 

My mom said I probably wouldn’t get on the Dean’s List this semester. But, I got an A in the harder class (!) and a B+ in my other one. Here I come, Dean’s List – TBI and all!

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.

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.

 

(Clip Art compliments of Bing.)

(Photo compliments of contributor.)

SPEAK OUT! . . . . . . . . . . . . . . . Faces of Brain Injury Beth Kidd Koziol (survivor)

SPEAK OUT! Faces of Brain Injury Beth Kidd Koziol

presented

by

Donna O’Donnell Figurski

 

 

Beth Kidd Koziol

Beth Kidd Koziol – Survivor

My brain injury happened in 2005 from being a passenger on the back of a motorcycle. I had a traumatic brain injury (TBI)/closed-head brain bleed, a fractured clavicle, five fractured ribs, a lung contusion, many fractures in my left hand, including a fractured scaphoid bone. (I was told that, if the blood supply could not get to it, I would lose the use of my hand. Thank God, it healed!) I also had a badly fractured pelvis and several torn ligaments in my left shoulder. I was airlifted to a trauma unit, where I stayed for three days. I was then transferred to a rehab hospital for about two months. There I got extensive occupational, physical, and speech therapies. I had a neuropsychologist, a neurologist, an orthopedic specialist, and a pain-control specialist. After I left the rehab hospital (in a wheelchair), I visited three times a week for an additional three to six months. I had to learn how to eat, swallow, talk, and walk. I had taste and smell issues with food, plus I couldn’t swallow normal foods. I got dizzy when I moved my head. It was determined that I had shattered microscopic bones in my left ear (the side of all my injuries). After about three weeks of physical therapy, I had a treatment that corrected that problem and reset those little microscopic bones.

I left the rehab hospital in a wheelchair. It took me another three to four months before I could walk with a walker and then with a cane. Now I use nothing. After six to nine months of continued outpatient sessions of physical therapy and occupational therapy, I was called “Wonder Woman” and “Miracle Child” because no one knew how determined I was in my recovery. I was my own caregiver because I was 3,000 miles away from family. Rather than alarm them, I did not tell them of my accident until I was well enough to travel back to the East Coast and tell them in person, so they could see that I was OK on the outside. My family still doesn’t understand the damage and changes on the inside that I endure daily. I have short-term memory problems, I can no longer multitask, and I have to talk in detail as if I were writing a book or describing a picture. I’m told I talk too much; that hurts. If I am doing anything, including talking, and I am interrupted, I cannot remember what it was that I was going to say or do. This is commonly the new normal for many brain injury survivors.

Beth Kidd Koziol 2 survivor 051616

Beth Kidd Koziol – Survivor

The best thing I can suggest is to find materials – books to read to get informed or educated and websites that help you understand what a TBI-person goes through. It helps the survivor when you understand and are patient with him or her. After ten years for me, I still find areas in which I am still healing.
My motto is “Never Give Up!” [smile emoticon]

 

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

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

 

SPEAK OUT! . . . Guest Blogger Tanya Dallas

One Day at a Time

by

Tanya Dallas

presented

by

Donna O’Donnell Figurski

Girl Blogger cartoon_picture_of_girl_writingI am new to this diagnosis of brain injury. For the last few years, I have had several unexplained symptoms – my life was spinning out of control. No one was listening to me. No one was asking the right questions. A few weeks ago, my father took me to the Emergency Room. He was desperately seeking help because I had no control of my emotions. I was placed in a locked-down psychiatric unit.

Dallas, Tanya Survivor 2 050716

Tanya Dallas – Brain Injury Survivor

A very nice doctor asked me if I’ve ever had a head injury. I began to tell my story. At 11 years old, I had a bike accident. I had no helmet, and I was unconscious for two minutes. At 12 years old, I took a softball to the face. I was unconscious for a few seconds. At 18 years old, I was in a car accident. I was unconscious for an unknown amount of time. Once I was struck in the head with a rock. I was also hit in the head with a ten-pound dumbbell (working with juveniles means risks). I experienced five years of domestic violence. I have no idea which of these things caused my brain to work differently.

Dallas, Tanya Survivor 1 050716

Tanya Dallas – Brain Injury Survivor

It’s hard for me to process. I was always so independent, and now I am unable to even hold a job. I learned what “flooding” was yesterday. I cried as I watched the video. For the first time in years, I felt understood. I felt like I wasn’t completely losing my mind.

It’s hard because my family still doesn’t understand. And they can’t see the injury, so they don’t think it’s there. I’m just taking one day at a time at this moment.

 

Thank you, Tanya Dallas.

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

(Clip Art compliments of Bing.)

(Photos compliments of Tanya Dallas)

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.

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

Feel free to “Like” my post.

Survivors SPEAK OUT! . . . . . . Heather Love Leffel

Survivors SPEAK OUT! Heather Love Leffel

presented

by

Donna O’Donnell Figurski

Leffel, Heather Love MS survivor

Heather Love Leffel – Multiple (M.S.) Survivor

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

Heather Love Leffel

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

Toledo, Ohio, USA     heatherleffel419@gmail.com

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

I have multiple sclerosis (MS), which essentially is brain damage. I had my first symptom at 19 years old.

4. How did your brain injury occur?

Well, my mother and twin sister also have MS. I do believe MS has a genetic aspect to it, but as of now, they don’t know the cause of MS.

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

I first noticed my MS in 1999. I was at my son’s T-ball game. I looked into the sky, and suddenly my left eye saw white flashes, and a black lace went over my vision. This was my mother’s first symptom too. I knew in my heart I had MS.

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

None. I went directly into denial without passing GO (LOL) (a Monopoly reference). I didn’t want to know I had MS, so I ignored every symptom I had. I was in complete denial.

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

No, I was not.

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 have done a brief treatment of physical therapy for my balance and walking, but I stopped going. I shouldn’t have, but I did.

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

Oh my symptoms list is a mile long! I can name some major ones. I have issues with balance and memory. I have nerve pain that results in a burning limbs sensation. I also have excruciating headaches, blurred vision, vertigo, the “MS hug” (a tightening around the waist), spasticity, speech issues occasionally, and more.

10. How has your life changed? Is it better? Is it worse?multiple_sclerosis_believe_dream_hope_sticker-r9050a576f9804d99a628b40913eb66e5_v9waf_8byvr_512

In some ways, my life is better, and, in many ways, it’s worse. I have met some of the most amazing and wonderful people through this disease. I’ve also learned to slow down and appreciate life, but MS has taken so much from me. I lost my job, my fiancé, friends, financial stability, and the energy needed to be the mother I always was.

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

I miss working and having the money to fully provide for my children all the things I needed and wanted to.

gg6402838012. What do you enjoy most in your post-brain-injury life?

I most enjoy spending any time I can with my sons and also being an MS advocate.

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

I least like what my having MS has done to my family, and I dislike the fear I have daily that I’ve passed the monster to my children.

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

Honestly, acceptance happened fast for me – maybe because I knew in my heart for so many years that I had it, but was denying it. (I showed my first symptoms in 1999, but I didn’t break down and see a doctor until 2012.)

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

Yes. I lost my fiancé. The first year after my diagnosis was challenging. I had to stop working just three months after my diagnosis. That crushed me. I was going through depression. I was also having issues with trusting my fiancé, since he lived in another state due to the military. Long story short – my trust issues were justified. He cheated on me, got the girl pregnant, and secretly married her while with me (one year after my diagnosis and after seven and a half years together).

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

Oh my, yes! I have no social life. The only social life I have is Facebook really. I’ve definitely isolated myself.

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

I am my own caregiver at the moment. My 18-year-old son helps me a lot, but I wouldn’t call him my caregiver. I absolutely understand what it takes to be a caregiver. It’s a hard and selfless thing for someone to do. Caregivers deserve the utmost respect.

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

I hope to be married to a good man – someone who can look past my MS and see me for me. I hope to have a grandbaby. I hope my son is happily married and has an enjoyable life. I hope my youngest is enjoying college and living life to the fullest. Most of all, I hope and pray that neither of my children has multiple sclerosis.

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.

The most helpful thing I can say to you if you have MS is to allow yourself to grieve for the “old” you when you need to. Let it all out, and then pick up the pieces and move forward. You must allow yourself to grieve for who you once were and to grieve when things change because with this disease you are ever-changing. Allow yourself to feel it, and then accept it and continue to be the MS warrior that you are!

58df9ecb6c5b1b58ba8911d21946404420. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

My advice to others like me is to speak out. We need to understand that we didn’t choose MS; it chose us! MS is nothing to hide or to be ashamed of; neither is your MS story. To create awareness about this disease, we must speak about it. We must all raise our voices and be heard. One person can make change – it only takes one. Be the difference you want to see!

 

(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.)

 

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