TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Survivng Traumatic Brain Injury’

TBI Tales . . . . . . . . . . . . . . . A Friend? The Need for Better Understanding of Brain Injury

A Friend?
The Need for Better Understanding of Brain Injury
by
Alan Gregory

presented
by
Donna O’Donnell Figurski

Alan Gregory 1

Alan Gregory Brain Injury Survivor

 

I was working at my minimum-wage, 3- to 4-hours-per-day job when an old friend came in. He asked why I was working there and not at my former job. (I had been an accountant at a large manufacturing firm – a job I held for more than 30 years.) I told him I lost my job after I suffered a traumatic brain injury (TBI).

Of course, my friend didn’t know what a TBI was, so I explained it to him. He then assumed I must have been in a car accident. But, when I explained to him that I had slipped on ice and landed on my head, he rolled his eyes and moved on.

I wanted to grab him and tell him, “Yes, it’s true, and it totally messed up my life!”clipart-of-person-slipping-on-ice-7

I deal with my brain injury every day. I struggle with the fact that I can no longer financially support my family. Some days, I have to force myself to get up, after I have bounced around the house all night with my head not allowing me to sleep. I used to have a great, salaried job, at which I usually worked ten hours per day. Now, I can barely work a total of ten hours in a week. Ugh!

I honestly wonder what my friend’s reaction would have been if I had told him that I had a heart attack or a stroke or even cancer. I am sure that his reaction would have been sympathetic and understanding with an offer of “If I can do anything …”

k23633524

A little understanding and compassion go a long way.

Well, I don’t want his sympathy. We have survived these past two years without his help. A simple dose of understanding would have been preferable, rather than the perplexed look, the sudden turn and walk away, or the “Yeah, right” head shake that we survivors of brain injury all too often get from others.

 

 

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(Photos compliments of contributor.)

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Caregivers SPEAK OUT! . . . . Malissa Mallett (caregiver for her son)

Caregivers SPEAK OUT!

Malissa Mallett (caregiver for her son)

presented by

Donna O’Donnell Figurski

“Malissa Mallett will be my guest tomorrow (Sunday, February 17) on my radio show (Another Fork in the Road) on the Brain Injury Radio Network. She has been caregiver for her son, who had an anoxic brain injury, since 1997, when he was an infant. Malissa is Program Director for the Brain Injury Alliance of Arizona (BIAAZ). We will discuss caring for her son and the effect of her expertise (opioid use on the brain.) My show broadcasts live at 5:30 PT (blogtalkradio.com/braininjuryradio), or it can be heard as a podcast anytime (https://survivingtraumaticbraininjury.com/category/on-the-air-show-menu/).”

Malissa Mallett

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

Malissa Mallett

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

Laveen, Arizona, USA     Program@biaaz.org

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?

The survivor is my son. He was 2 months old. His brain injury was caused by aspiration, causing him to stop breathing (anoxic brain injury).

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?

My care began in April 1997. I was 22 years old. I was my son’s main caregiver then, but I’m not now.

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Babies get brain injury too

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

No

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

I had just returned to work after giving birth. I was not able to continue working, since my son required 24-hour supervision for his heart and lung monitor.

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

Occasionally. My family, who were trained in CPR, would care for my son to give me a break or a night out.

cartoon-hospital8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

In the hospital

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

No

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?

No

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

This is difficult to answer given my son’s age at the time of his brain injury.

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

My life was challenging all throughout my son’s life.

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

I will never know what could have been.

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

Does not apply

15. What do you like least about brain injury?

shakilaramanwordpresscom

Learn about brain injury

The lack of understanding in the community

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

Yes. Education.

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

Yes, it has. We can discuss this on your radio show. It’s too much to explain here.

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

Not anymore

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

I would love for my son to be successful and independent.

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

supportTake care of yourself.

Be surrounded by supportive people.

Educate yourself.

 

(Clip Art compliments of Bing.)

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Past Blast: Mansion Dancing Under the Stars

“TBI Tales: Mansion Dancing Under the Stars”

(originally published April 26, 2014)

presented by

Donna O’Donnell Figurski

mansion-at-westport

David and I met on the dance floor when I was 16 years old. He was 17. We fell in love under a strobe light. Through our married years, we danced at weddings and at parties, but when David’s Traumatic Brain Injury left his body as limp as Raggedy Andy, I never dreamed that David and I would ever dance again. But, during a recent trip to Westport, Massachusetts, to spend time with our son, Jared, his fiancé, Emily, and her family, we found ourselves staying in a mansion … only feet from the Atlantic Ocean. Our host, dancers-thSusan, was beyond gracious, concerned about our every comfort. On our second night there, she threw a big family party on her extensive patio and even more expansive grounds overlooking the ocean; and she invited us. We stopped in about midnight.

The partygoers were huddled around the fire-ring … music still blaring. Jared and Emily began to dance on the patio. I swayed. David sat in a tall patio chair. Then the unthinkable happened. David asked me to dance. I hadn’t expected that! David can barely walk – dancing had not been on his radar for more than seven years. I looked at him expectantly. Was he kidding, being facetious? ballroom_dancing_stars_swinging_lg_clrNo! With a huge grin, I answered, “Yes!”

We didn’t Cha-Cha or Swing, as we had learned in our Ballroom Dance classes. We didn’t attempt the Fox Trot, or even the Waltz, though Paula, our dance instructor after David had his TBI (another story), would have been proud of us if we had. But, we did our own dance. We swayed back and forth – never moving our feet. We call it the “TBI Sway.” We swayed with my head resting against David’s shoulder and his hand gently placed at the small of my back. We swayed with David holding on to me for dear life … for balance. We danced under the stars to an old favorite, “Unchained Melody” by The Righteous Brothers, with the sounds of ocean waves lapping the shore, with smiles on our lips, and remembrances of days gone by … and the promise of our days ahead.dance under stars

anim0014-1_e0-1As I say after each post:

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Permission granted to “Reblog” my post.

(Clip Art compliments of Bing.)

(Photos compliments of ME.)

If you have a story to tell, please contact me at donnaodonnellfigurski@gmail.com

New NEWS: . . . . . . . . . . . . . . . . New Website for Prisoners without Bars: A Caregiver’s Tale

New NEWS: Prisoners without Bars: A Caregiver’s Tale – New Website

presented by

Donna O’Donnell Figurski

I launched a new website dedicated to my Writing Life. It’s simply called, “donna o’donnell figurski – Author.”

Donna Figurski Website Banner

It tells about Me, Me, Me. Who Am I anyway?

You can learn about my books here.

The site includes my online and print publications. You can even find the links to the articles so you can read them right now.

It shares some of my favorite books–both for adult and for children. How many have you read? What’s your favorite?

It lists Praise for Prisoners. Oh MY Gosh — I can’t believe what folks are saying about Prisoners.

Thanks for reading my book, Prisoners without Bar: A Caregiver’s Tale. Did you know that there aren’t many books about brain injury? But, here are a few good ones.Prisoners without Bars

 

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! Jim Ledgewood

Survivors SPEAK OUT!  Jim Ledgewood

presented

by

Donna O’Donnell Figurski

Jim Ledgewood 1

 

 

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

Jim Ledgewood

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

Phoenix, Arizona, USA

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

January 27, 2006      Age 27

4. How did your brain injury occur?

I was shot with a 9 mm on the left side of my face.14 Jim Ledgewood 071518 f0282624

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

I did not realize I had a brain injury until seven years after being shot. My company brought to my attention that something was off.

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

I had multiple surgeries. They had to put twenty-five coils around my carotid artery to stop the bleeding around my brain.

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

I believe they induced a coma in me. Not sure, though.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I had inpatient rehab (cognitive, physical, and speech therapies) at St. Joseph’s Hospital/Barrow Neurological Institute and at Mesa General Hospital; outpatient rehab (cognitive, physical, occupational, and speech therapies), for one week at Mesa General and for one week at Chandler Regional Medical Center.

18 Jim Ledgewood 071518 f293356169. What problems or disabilities, if any, resulted from your brain injury(e.g., balance, perception, personality, etc.)?

The frontal and temporal lobes were damaged, so all the things that those two parts of the brain control were affected in a negative way.

Donna’s note: The cerebral cortex can be divided into four sections, which are known as lobes: frontal, parietal, occipital, and temporal.

Following a frontal lobe injury, an individual’s abilities to make good choices and recognize consequences are often impaired. Damage can cause increased irritability, which may include a change in mood and an inability to regulate behavior, such as anticipation, goal selection, planning, initiation, sequencing, detecting errors, and initiating novel responses.

The temporal lobe is located behind the ears and extends to both sides of the brain. It is involved in hearing and holds the primary auditory cortex, which receives sensory information from the ears. Secondary areas process the information into speech and words. Left temporal damage can disturb recognition of words and impair memory for verbal material.

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

There are certain things that I was able to do before my TBI (traumatic brain injury) that I cannot do now. This has affected all aspects of my life.

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

I miss the control I had over my life.Control

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

I like helping others and being able to share my story. I take pleasure in doing something that only 5% of 5% of the population is able to do.

13. What do you like least about your brain injury?Jim Ledgewood 2

Everything

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

Learning and understanding my TBI and what it is doing have helped.

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

I have to move at a different pace than others. A lot of people around me have a hard time because they don’t know or understand why I do what I do or why I express myself the way I do. Once people learn that I have a TBI, the part of my brain that was injured, and what that part of the brain controls, they get more comfortable. But, I believe they are still not 100% comfortable.

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

I was not in a relationship before my injury. I have found it hard to get into a relationship since my injury.

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

I am my own caregiver.

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

I hope to have that relationship/family that I thought I would have by now. I don’t try to look that far into the future.

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.

6iyo54M5TI would say that you should learn as much as you can about your TBI. That way you know that problem. Then you can try to come up with solutions to better your life.

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

It is not what happens – it is what you do about it that defines the person you are.

N-E-V-E-R  G-I-V-E  U-P!

 

Please leave a comment/question. I will respond.

(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.

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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.

Tripp, Manda Survivor 31775961_10155126581401650_8092491080345321472_o

 

woman-in-wheelchairManda Tripp (survivor) … Two years ago, I came home in a wheelchair.  Today, I’m walking downstairs without holding on to anything! (It’s the little things … )

 

YOU did it!

Congratulations to Manda!

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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

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Past Blast . . . . . . . . . . . . . Survivors SPEAK OUT! . . Lauren

SPEAK OUT! – Lauren

by

Donna O’Donnell Figurski

(originally published April 13, 2014)

 

Lauren - about 4 days post TBI surgery

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

Lauren

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

Belfast, Northern Ireland

3. When did you have your TBI? At what age?

September 2012. I was 35

4. How did your TBI occur?

Playing roller derby

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

It was very sudden, I felt something wasn’t right in my head, then my vision went and I collapsed.

6. What kind of emergency treatment, if any, did you have? (e.g., surgery, tracheotomy, G-peg)

Ambulance to Accident and Emergency.
A CT scan, then a craniotomy

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

4 days. It was medically induced because I kept wanting to wake up!

8. Did you do rehab? What kind of rehab (i.e., In-patient and/or Out-patient; Occupational, Physical, Speech, and/or Other)? How long were you in rehab?

No rehab to speak of, Out-patient appointments with Neuro every few months. I’m now discharged.

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

Initially I had palsy of the left eye. Most of my problems have been psychological. I also had fatigue for a long time. (It’s still here but not as strong.)

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

How do you put this into words? My life has changed in many ways, I was very independent. Now I rely on my partner a lot, mainly due to anxiety and depression.

There are things that are better – the ability to let small things slide is easy. I have an appreciation of life. I know what I DONT want anymore. My BS detector is much improved.

The bad – feeling scared for no reason. Crying a lot

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

My independence

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

The slower pace; the ability to filter stressful people

13. What do you like least about your TBI?

Anxiety anxiety anxiety

14. Has anything helped you to accept your TBI?

Time, patience, writing, lots of reading and meeting other survivors

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

It has made us a lot closer. It’s not an easy ride. It can get rough, but we’ve learnt to communicate in a much more meaningful and honest way.

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

Yes, I’ve become more isolated. My social circle reduced a lot post-injury. That hurt at first, but I’ve accepted it now. More contact with others would be nice though.

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

My partner, he’s great. He’s put up with so much. I have an idea of what he’s been through, but I’ll never truly understand how it feels. It is difficult and tiring.

18. What are your future plans? What do you expect/hope to be doing 10 years from now?

I hope to study again. I want to complete a Psychology or counselling course so I can help others. I want to be out in the world again, and most of all I hope to have my joy back.

19. What advice would you offer to other TBI survivors?

It’s hard but it will pass
What you feel is normal
Be kind to yourself, and you will also need plenty of patience!

20. Do you have any other comments that you would like to add?

Good luck to all TBI/ABI survivors. Remember you are never alone.

Lauren celebrating her birthday about 16 months post-TBI

 

Thank you, Lauren, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

 

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

(Photos compliments of Lauren.)

 

(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.

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