TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘survivingtraumaticbraininjury.com’

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

 

Deb Angus Trike

Deb Angus – brain injury survivor

Deb Angus (survivor)…Well, look at what I’ve just done. I bought me a trike! And, I even assembled it. I’m hoping to take it out on its first ride tomorrow – it’s too late now. (I’ve been at it from 3:00 to 7:00 pm, including a jaunt to Canadian Tire to buy nuts and bolts for the front fender. Aaahhhh, quite the accomplishment! And, the best thing is that this is a folding trike. So, I’m hoping I’ll be able to store it and also transport it in my hatchback with no problem.
First ride

Deb Angus Trike 061616

Deb Angus – brain injury survivor

It was fantastic! I love my trike. I love being out on the trails again. I love the wind blowing through my helmet, hearing the birdies along the way, and stopping to photograph scenery and flowers. It was a great success all in all. I’m sure my legs will be killing me in the morning. It’s a good thing I have a hot stone massage booked soon. Here are the pics to show my efforts.

 

 

Michelle Markey

Michelle Markey – brain injury survivor

Michelle Markey (survivor)…Michelle says that she is trying to beautify her apartment with her creations. She crocheted this purple doily with crochet cotton, size 10.
Purple Doiley
Michelle says that she is so pleased that she finally finished a project. It took a long time, but it was worth it.

 

 

gofightygoldLee Staniland (survivor)…I fought like a bull to get my husband to see the surgeon for the nerves being pressed in his back. The office wanted us to see the surgeon on July 6. I fought until I got it scheduled for last week. It was with the surgeon’s partner, but it is done. I finally did it!

 

boy-driving-car

James Stroehlein (survivor)…I began driving again two years after my car accident and TBI. It’s been fourteen years, but I only drive in my small town. It still makes me nervous. But I do it!

 

(Clip art compliments of Bing.)

(Photos compliments of contributors.)

 

YOU did it!

Congratulations to contributors!

As I say after each post:

Survivors SPEAK OUT! . . . Abi

Survivors SPEAK OUT! Abi

presented

by

Donna O’Donnell Figurski

 

Abigail

Abi – brain injury survivor

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

Abi

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

Columbia City, Indiana, USA

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

I had my TBI (traumatic brain injury) at age 20.

4. How did your brain injury occur?

I was hit by a freight train in a suicide attempt.

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

I knew I had a problem when I started speaking, as my voice pitch changed quite a bit. Also, when I was asked to remember things from the day before, I had trouble doing so.

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

I was taken to a hospital right away. In addition to the problems noted above, I also had a messed up back and an amputated right arm, so those were tended to right away. I was also immediately given stitches to close up a wound on my head.

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

I don’t think I was in a coma, but I don’t recall very well the two days after my incident.

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 occupational therapy, physical therapy, and speech therapy both as an inpatient and as an outpatient. I was in the rehab inpatient therapy for at least six weeks. I was in outpatient therapy even longer, but the outpatient therapy focused more on my missing arm. I also had in-home therapy.

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

I have poor balance and slurred speech. I experience personality changes.

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

I believe my life has changed for the better, as I’ve met so many who are worse off than me.

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

I miss nothing from my pre-brain-injury life, as my personality changed for the good. But I do miss people understanding me.

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

Abigail 2

Abi – brain injury survivor

I like to meet others with a TBI and other disabilities.

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

I dislike my slurred speech and sounding different than I used to.

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

Yeah – meeting those worse off

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

I’m much better, as I’m more social.

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

Yeah. I went from being deathly shy to a social butterfly.

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

My mother is my main caregiver. Yeah, I do understand what it takes. It’s hard work.

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

I plan to have a family and to be a counselor helping suicidal people.

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 give up.Don't Give Up

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 Don’t give up, and be you.
(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!

On the Air: . . . . . . . . . . . . “Another Fork in the Road” Guests: Joel (caregiver) and Bart (survivor) Goldstein . . . . . . . . . . Topic: Father and Son Tackle Brain Injury

On the Air: “Another Fork in the Road”

Guests: Joel (caregiver) and Bart (survivor) Goldstein

Topic: Father and Son Tackle Brain Injury

presented

by

Donna O’Donnell Figurski

 

images-1What better day than Father’s Day to meet, father and son, Joel and Bart Goldstein! Joel has been fighting and advocating for his son, Bart, ever since Bart was in a motor vehicle accident when he was sixteen-years-old. That accident caused Bart’s brain injury.

14 Joel Goldstein Speaker's photo

Joel Goldstein – caregiver & author of “No Stone Unturned”

 

Joel is the author of “No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury.” Both Joel and Bart shared their ups and downs as they continue to traverse the maze of brain injury.

Bart Goldstein 2

Bart Goldstein – brain injury survivor

Both father and son offered some good information about Hyperbaric Oxygen Therapy (HBOT), Omega-3 vitamins, cranial sacral therapy, and Reiki, an Eastern practice used for healing.

03 Joel and Bart Newspaper

 

You can learn more about Joel and Bart on Facebook at NS Unturned and at brainline.org. Read his article, “When the Dust Finally Settles: Strategies for the Long-Term Caregiver.”

11 Cover Photo No Stone Unturned

“No Stone Unturned” by Joel Goldstein

 

See you “On the Air!”

On the Air: “Another Fork in the Road”

Guests: Joel (caregiver) and Bart (survivor) Goldstein

Topic: Father and Son Tackle Brain Injury

(Clip Art compliments of Bing.)

(Photos compliments of guests.)

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

Sherrie Crusha son

Sherri Crusha

Sherrie Crusha – Survivor

 

Sherrie Crusha (survivor)…My biggest accomplishment is raising a young man who will be a Marine in a few days. 🙂

Marine Corp Emblem

 

 

graduation02

 

 

 

 

Rayne Patterson (survivor)…In early April, I graduated high school at age 30.

 

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 contributors.)

Caregivers SPEAK OUT! . . . . . . Joel Goldstein

Caregivers  SPEAK OUT!  Joel Goldstein,

(father of survivor, Bart Goldstein, and author of “No Stone Unturned”)

presented by

Donna O’Donnell Figurski

 

 

14 Joel Goldstein Speaker's photo

Joel Goldstein – Caregiver of son, Bart & author of “No Stone Unturned”

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

Joel Goldstein

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

New Paltz, New York, USA

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?

Our son Bart was sixteen when he suffered a severe TBI (traumatic brain injury). He was a passenger in an auto accident.

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 became Bart’s caregiver on January 29, 2001, the day of his accident. My wife, Dayle, and I were and remain Bart’s main caregivers. We remain involved in Bart’s life, but he has now progressed to semi-independence. He resides in his own apartment an hour and half away. We visit and break bread with him every Sunday and on holidays. We participate actively with his “team,” made up of a Benefit Coordinator (a certified specialist or a social worker who is an advocate for the survivor, a CIC (Community Integration Counseling) counselor, and an ILS (Independent Life Skills) trainer.

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

My wife and I were responsible for our eleven-year-old daughter, Cassidy.

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

I was Director of Human Resources at a medium-sized company. I was lucky enough to be able to take whatever time was needed to care for Bart, especially while he was in the acute phase. My wife, Dayle, worked at home as a Reiki Master. She stopped most work to care for Bart.

Joel Goldstein & Son, Bart

Joel Goldstein – Caregiver for Survivor son, Bart

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

Friends and family helped look after our daughter while Bart was an inpatient (four months). Close friends and a wider “conspiracy of decency” in our community helped for several years, post-injury. Here is a short YouTube video, “No Stone Unturned: Traumatic Brain Injury and the Conspiracy of Decency,” that addresses that issue:

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

My and my wife’s support began immediately in the hospital.

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

Yes. Bart was in a coma for 30 days. Dayle and I were at his bedside.

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?

Bart had all the standard therapies, plus many unconventional ones. Here is an article, “Fighting the “TBI Wars”: New Alternatives for TBI Survivors,”published by Brainline, that addresses this question succinctly:

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

03 Joel and Bart Newspaper

Joel Goldstein (caregiver) and son, Bart – brain injury survivor

Bart’s injury was very severe – 30-day coma, nine-month rehab, and then years at home reintegrating. He struggled with the full gamut of intellectual, physical, and emotional deficits that come with a severe TBI. Gradually, with time and alternative therapies, these struggles have eased very considerably. Today Bart lives semi-independently, in his own place, with a part-time job, and with new fiends. He is moving on with his life.

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

Our focus for over a decade was almost entirely Bart-centric. Pastimes were eliminated (e.g., Taekwondo) and volunteer activities were diminished. (I was president of our local branch Y at the time of his accident, but I resigned shortly after.) People we were accustomed to seeing regularly (especially Bart’s friends and their families) dropped away. We were angry about the friends moving on with their lives, but eventually we forgave and moved on too. Life is both better and worse, in different respects.

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

I miss old hobbies, sports, travel, and activities that have been shelved in order to be more focused on essentials.

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

My life is more simplified and focused. I have a new sense of mission and compassion. We have founded the BART Foundation (Brain Alternative Rehabilitative Therapies) – a 501(c)(3).

15. What do you like least about brain injury?

I dislike the timeline – Bart’s recovery from his TBI will be a lifelong challenge. Some issues, like perseveration, are terribly stubborn.

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

18 Joel Goldstein & Bart

Bart Goldstein – Survivor with Father, Joel Goldstein (author of “No Stone Unturned”)

I have been helped by the usual suspects: faith, hope, love, humor, music, family, friends, and fun.

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

We’re all walking-wounded in some ways – reminiscent of PTSD (post-traumatic stress disorder).

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

The caregiving life can often be isolating.

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

We have formed the BART Foundation (Brain Injury Rehabilitative Therapies), a 501(c)(3) educational charity. The mission of The BART Foundation is to promote better outcomes for brain-injury survivors by answering three questions – which alternative therapies are likely to work, where can they be found, and how can they be afforded?

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

Our best advice to caregivers is succinctly summarized in this article. “When the Dust Finally Settles: Strategies for the Long-Term Caregiver,” published by Brainline.

11 Cover Photo No Stone Unturned

“No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury,” by Joel Goldstein

 

To learn more about Joel Goldstein and his son, Bart, read, “No Stone Unturned – A Father’s Memoir of His Son’s Encounter with Traumatic Brain 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.)

(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 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.

 

Survivors SPEAK OUT! . . . . . . Bart Goldstein

Survivors SPEAK OUT! Bart Goldstein

presented

by

Donna O’Donnell Figurski

Bart Goldstein 2

Bart Goldstein – Survivor

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

Bart Goldstein

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

Delmar, New York, USA

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

My brain injury happened on December 29, 2001. I was almost 17.

4. How did your brain injury occur?

I was riding with friends in an auto, and we had an accident. I was in the back seat. We were just teenagers clowning around. There were no drugs or alcohol.

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

I was in a coma after the accident.

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

I was airlifted to emergency surgery. Later I was given a trache and a G-peg (feeding tube inserted directly into the stomach by percutaneous endoscopic gastrostomy).

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

Yes. I was in a coma for a month.

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?

Bart Goldstein & Dog

Bart Goldstein – Survivor

I had speech therapy, physical therapy, and occupational therapy as an inpatient for three months at Helen Hayes Hospital. Then I had five more months of therapy as an outpatient at the hospital.

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

I have problems with walking, my speaking sensibly, control of anger, partial blindness, and memory.

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

I am much more of a planner now than I was prior to accident. An article, “The Journey Back,” from Brain Injury Awareness Month a couple of years ago answers this question and most of the others: http://spotlightnews.com/uncategorized/2014/03/20/journey-back/

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

See the Spotlight article (address given in the answer to the question 10).

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

See the Spotlight article (address given in the answer to the question 10).

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

See the Spotlight article (address given in the answer to the question 10).

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

I’ve been helped by my Christian faith, my parents, and my sense of humor.

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

See the Spotlight article (address given in the answer to the question 10).

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

See the Spotlight article (address given in the answer to the question 10).

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

My folks are my main caregivers. Caregiving takes a lot of love and more.

Bart & Joel Goldstein

Bart Goldstein – Survivor with Father, Joel Goldstein (author of “No Stone Unturned”)

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

I hope to continue to heal and to find a good woman and settle down.

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.

Learn patience. It’s a long haul.

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

Keep your faith and your sense of humor. Try alternative therapies.

 

(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!

On the Air: . . . . . . . . . . . . “Another Fork in the Road” Panel: Cognitive & Memory Deficits After Brain Injury

On the Air: “Another Fork in the Road”

Panel: Lisabeth Mackall and GeorgeAnna Bell

Cognitive & Memory Deficits After Brain Injury

presented

by

Donna O’Donnell Figurski

images-1Memory loss and cognitive deficits are both prevalent for many survivors after brain injury. Memory loss literally leaves many folks feeling a loss of control over their lives. Cognitive deficits can leave one feeling less than whole.

Lisabeth Mackall Book 061215

Lisabeth Mackall – Caregiver, Author, Speech Therapist

 

My panel, caregiver, Lisabeth Mackall and survivor, GeorgeAnna Bell joined me to discuss how memory loss and cognitive deficits affect them personally and how the deficits hinder their family dynamics. They offered suggestions that have worked for them.

Click on the link below to listen to the show.

GeorgeAnna Bell - Survivor

GeorgeAnna Bell – Survivor

 

 

See you “On the Air!”

On the Air: “Another Fork in the Road”

Cognitive & Memory Deficits After Brain Injury

(Clip Art compliments of Bing.)

(Photos compliments of panelists.)

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

 

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.

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 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.

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(Photos compliments of contributor.)

 

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Another Fork in the Road Behavioral and Emotional Changes After Brain Injury

Fork in the Road copy“Another Fork in the Road”

This category is an extension of my radio show, “Another Fork in the Road,” which airs at 5:30 pm (Pacific Time) on the 1st and 3rd Sundays of each month on the Brain Injury Radio Network. (See the “On The Air Show Menu” category for a list – with links – of all my shows, which are archived and thus always available.)

On the 1st Sunday of each month, I host a panel of brain injury survivors, caregivers, and/or professionals in the field. On these shows, my panelists and I examine topics pertaining to brain injury.

On the 3rd Sunday of each month, I host guests – brain-injury survivors, caregivers, or professionals in the field.

Since I spend countless hours in preparation for each show, I decided to share the knowledge that I gather with my readers.

 

Behavioral and Emotional Changes After Brain Injury

by

Donna O’Donnell Figurski

 

BrainAs many of us know, all brain injuries are different. When an injury has happened to any part of the brain, there is going to be a change. The part of the brain that was damaged will determine the kind of symptoms that will be experienced. Because the brain is a complex organ in which different areas communicate, some damage may cause unexpected behaviors or emotional changes.

There are several sections of the brain, and each is responsible for many different aspects of daily life. Here I will discuss some of the behavioral and emotional changes that can result from damage to the cerebellum and to the cerebrum, which consists of the temporal lobe, the occipital lobe, the parietal lobe, and the frontal lobe, a major part of which is the prefrontal cortex.

The cerebellum, which is at the base of the skull, controls coordination, balance, equilibrium, and motor-skill memory. Some of the problems that result from damage to this area are compromised balance or the inability to walk, problems with fine-motor skills, and slurring of speech.

Damage to the temporal lobe can cause problems with hearing, memory, and motor-skill memory. Injury in the temporal lobe may also result in aggressive behavior.

The occipital lobe has to do with vision and vision-related activities. Reading and writing will be affected by damage to this area of the brain. Vision impairment can occur, which includes blurry, tilted, and double vision.

The parietal lobe is responsible for touch perception and the interpretation of visual information. Problems that may occur with damage to this lobe include difficulty in naming objects, difficulty with reading and/or writing, and spatial perception problems that can affect coordination.

Emotional responses and expressive language are housed in the frontal lobe. Emotions and the skills for problem-solving are dealt with there. The frontal lobe helps folks make sense of the world around them. It’s needed to understand others and be empathetic to them. Essentially, the frontal lobe is the emotional and social control area. It also determines and steers personality.

The prefrontal cortex of the frontal lobe controls analytical thinking, thought analysis, and behavior regulation. Executive functions are controlled here too. The prefrontal cortex is the gateway for making good decisions. When this area is injured, the thinking process is affected in such a way that inappropriate behavior is often the result.

 

I asked the following three questions of brain-injury survivors on the brain-injury support-group sites on Facebook to which I belong:

How have your emotions or your behaviors changed after your brain injury?

How do you cope with the change?

How do family members and/or friends cope with the change in your personality?

Several site members answered. The answers below are typical of the comments I received. (I used first names to protect the privacy of the contributors.)

 

Sherrie (survivor)

Happy SadIt’s been a long time since my brain injury. My emotions can be extreme or opposite to what they should be. Change is hard, and I don’t like change. Friends left, and family has never accepted my brain injury.

I have been known to laugh when someone gets hurt, like mashing a finger, and my emotions can be so overwhelming that I cry no matter the feeling. Happy, sad, proud, mad, love. It doesn’t matter.

 

Toby (survivor)

Toby told me that it’s hard to cope with his migraines with brain injury because a lot of meds don’t work very well.

He has been put on many meds for depression and anxiety disorder.

MemoryHe also says his memory is damaged, and he can’t remember a lot of things.

Toby’s family has a hard time with him and his brain injury because it changes many things in their lives too. A lot of people don’t know what to say, so they hold back, or they do not talk with Toby anymore.

Toby tries to cope by getting his head in a better place, but when the anxiety kicks in hard, he has no idea what to do. He tries to get some things set up in advance, so he can take the Migraineright meds before another migraine comes on. (He usually experiences over twenty migraines a month.)

When I asked Toby how his family and friends cope with him and his brain injury, he said, “They stay away from me. If I make a mistake on the computer or the Internet, they will call my wife and give her a heads-up on my condition. I don’t really have any friends after what happened to me.”

 

Jason (survivor)

k0184684In a nutshell, Jason said, “Lack of love.”

 

 

I thought an article by Janet Cromer in “Psychology Today” was very informative, especially for caregivers, who often struggle with emotional and/or behavioral changes in the survivor. The article can be found online (see below).

Janet Cromer, who is a Registered Nurse, has written the “Dark Side of Personality Change.” She tells of how her husband’s personality changed after his brain injury. Before his brain injury, Janet recalls her husband (Alan) as being kind and loving with a keen sense of curiosity and humor. Calm ManAfter his injury, Alan experienced intense anger and confusion. His bizarre behavior and sudden change from calm to fiery led Janet to believe her post-injury husband had two personalities. She likened Alan’s behavior to that of Dr. Jekyll and Mr. Hyde, which she found very frightening. (I’m sure Janet is not alone in her fears. I have heard comments such as these in my brain-injury support-groups too many times to count.)

As I mentioned above, injuries to the frontal lobe, especially to the prefrontal cortex, often result in emotional and behavioral changes in survivors. Survivors of any brain injury may find themselves in states of agitation and in unstable emotional chaos. These states can cause outbursts of unintended verbal aggression and raging attacks on family or friends, which can be very hurtful. Though family and friends may try to understand and to be empathetic and helpful, dealing with an unexpected outburst can be an overwhelming task because it is so hard to comprehend.

Violent outbursts and aggression by the survivor can result in the lack of trust and possibly fear of personal injury by the caregiver, family, or friends. But I think it’s the lack of trust – knowing that the survivor can become volatile at any time – that is the scariest and most hurtful. That loss of the sense of security is likely to be the most devastating.

 

How can caregivers, family, and friends help? I guess understanding would be at the top of the list. I know that’s not easy, especially if one feels that he or she has been unjustly attacked. Even knowing that the survivor is not responsible, would not act this way pre-brain injury, and will probably feel really bad after the incident, it will still be difficult to accept the aberrant behavior. It’s human nature.

empathyThe caregiver, family, and friends need to understand that the survivor’s outburst may occur because of his or her frustration with the reality of the new life – lacking the ability to do the things he or she once did easily and/or experiencing loss of independence and/or the realization of a futile situation. Also, an outburst might be triggered by uncontrolled pain, depression, or any number of ailments. So, showing compassion or empathy, providing comfort, support, and encouragement will go a long way to helping your survivor.

 

What can one do when faced with irrational behavior by the survivor? It often helps to leave the area when an outburst begins. Don’t try to reason with the survivor – your efforts will probably not be fruitful. Remember, the survivor’s brain is injured, and he or she can’t help the aberrant behavior. It might help to talk about the behavior in a calm manner after the incident has subsided, or … maybe let it go.

Try to determine if there is a specific trigger for the outburst. If one is identified, try to avoid those situations that provide it. At the very least, knowing the trigger can help the caregiver, family member, or friend understand a little more. As time goes by, the caregiver and the survivor may each recognize the triggers and be able to eliminate them or lessen their impact.gg60887323

 

Identify the survivor’s actions immediately prior to an outburst. Does the survivor show signs of agitation, tense his or her muscles, or become distracted? If so, take note and maybe remove the survivor from the area. Large groups of people (as in malls, family gatherings, or parties) can often cause agitation in a survivor, which in turn may cause an outburst.

Any overwhelming situation can bring about an outburst. Having to be ready to leave the house at a certain time can cause stress. So allow more time. Don’t rush.

Give plenty of notice for planned events. Make sure there are no surprises. If a survivor knows in advance that there is a family gathering to go to on Friday night, then he or she can plan for it. Surprises and unexpected events often cause anxiety and confusion, which can easily bring on an outburst. So plan ahead.

 

ClipArt-AfterTheFire7Get counseling. Counseling for both the survivor and the caregiver (or family member) can be helpful. Visiting a neuropsychologist or a behavioral therapist can help (see below). They are able to teach compensatory tactics to avoid or lessen the effects of an angry outburst. The survivor may employ deep breathing, alter thoughts to a more pleasant topic, leave the area to regroup in a quiet place, let friends know the trigger points, and ask for help. Periodic reminders can help those who struggle with memory. These are all simple and effective ways to compensate.

There are a lot of little tricks that can be incorporated into the lives of survivors and their caregivers, family, or friends that can make life easier for all.

 

Helpful Links

What Does a Neuropsychologist Do, Exactly?

Who Are the Rehab Specialists?

Cerebellum

Frontal Lobes

Parietal Lobes

Temporal Lobes

Occipital Lobes

What Are the Functions of the Prefrontal Cortex?

After Brain Injury: The Dark Side of Personality Change Part I by Janet M. Cromer RN, LMHC

 

Click here to listen to my show

“Behavioral and Emotional Changes After Brain Injury” on “Another Fork in the Road,” on the Brain Injury Radio Network.”

 

(Clip Art compliments of Bing.)

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