TBI – Survivors, Caregivers, Family, and Friends

SPEAK OUT! – Pauline Southern

by

Donna O’Donnell Figurski

Pauline with her TBI

 

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

Pauline

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

South Carolina, USA

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

6/22/2012    52 years old

4. How did your TBI occur?

Another 18-wheeler hit the 18-wheeler my husband was driving. I was asleep in the sleeper in the back and got tossed around like a rag doll.

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

I’m not sure who first realized it. Just to name a few issues – I had a problem remembering old friends, finding words, and doing math. I had a shortened attention span and a panic attack every time I got into a car. I was distracted all the time and slept a lot. There is much more. I just can’t remember them all.

6. What kind of emergency treatment, if any, did you have?
(e.g., surgery,

tracheotomy, G-peg)

I was taken by ambulance to an emergency room in a little town in Iowa. I don’t have much of a memory of what went on, other than that I was treated for nausea and for pain for rib injuries. I don’t remember anything else.

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

No

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

Yes. I did Out-patient physical therapy, occupational therapy, and speech therapy. I spoke with a psychologist. Now I am doing PTSD (post-traumatic stress disorder) therapy. I’ve also had vision therapy for double vision and blurry vision. It’s been a year and counting.

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

I can’t control angry outbursts. I have no patience, have panic attacks in the car, cannot tolerate people who don’t understand what I’m going through. I have balance and vision problems. I cannot multitask. I have memory loss (short-term and some long-term). I can’t read more than one chapter in a book, and then I don’t remember what I read. I used to be able to cook for hundreds of people, and now I have trouble cooking for two.

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

I’m not able to do things I used to do – bookkeeping, quilting, reading. I can’t drive a car for more than one hour. I need a GPS to find my way to my destination and back home.

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

Happiness, laughing, and my friends

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

Nothing yet. I’m still trying to find something I like.

13. What do you like least about your TBI?

The way that it has changed my personality. I used to be fun-loving, happy, and

smiling. Now I’m sad and angry all the time.

14. Has anything helped you to accept your TBI?

Not yet. I’m still trying to accept it.

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

Yes. It has brought me closer to my husband. He is my caregiver, and my love for him has grown tremendously. But on the other hand, it has put a distance between me and the rest of the family. They don’t understand me. They get angry with me, and I get very angry with them for not wanting to understand me.

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

Yes. Because of the accident, we have lost our home and had to move to a new state. I have no friends – no one who I can hang out with and do things with. I don’t like to go out in public. I feel very alone. I cannot follow conversations, and I don’t like crowds, loud noises, or lights.

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

My husband. He does a great job. I don’t think I understand how he does it. He is a very strong person and helps me with my memory. He goes to doctor appointments because I don’t remember what was said during those discussions. I have no idea what it takes to be a caregiver to someone like me. I used to be a caregiver for my elderly in-laws, so I know what it takes to be a caregiver – but not for someone as bad as me.

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

To learn more about the loss of the old me and to accept the new me. To have a life again.

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

Sit back. Buckle your seatbelt. It’s a long, bumpy road ahead. It will have highs and lows and good and bad days. Just hang in there. Don’t give up. There’s a reason we were given these injuries. Find your purpose in life.

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

I wish there was more interest and more programs that teach non-TBI survivors what it’s like to be in our heads. I guess I’m trying to say I would like the rest of the world to understand we are still people. We just do things differently.

Pauline before her TBI

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

(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.

Newsboy thA new study by Stanford scientists has shown that blood from young mice can improve brain function in old mice. This simple experiment produced a surprise result. The scientists haven’t identified the factor (or factors) yet, but it is inactivated by heat. Earlier work from this lab showed that, after receiving blood from young mice, old mice produced more nerve cells than they did previously. One of the scientists formed a company to look at therapy for brain dysfunction, including Alzheimer’s Disease. (Full story)

 

Two soon-to-be-published studies by Harvard scientists show that GDF11, a protein found in both mice and humans, can improve muscle and brain. One idea is that GDF11 improves blood flow. Another idea (not necessarily exclusive of the first idea) is that GDF11 helps stem cells. Stem cells from muscle can form new muscle cells, whereas stem cells from the brain can form new neurons. Both muscle function and brain function were improved in old mice after GDF11 injections. Maybe the result of this research will be new therapeutic drugs for humans. The scientists are hopeful that funds will be available for establishing pre-clinical trials to test GDF11 in humans. (Full story)

SPEAK OUT! – Trish Herzog

by

Donna O’Donnell Figurski

Herzog Trish 042314  photo

 

 

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

Trish Herzog

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

Platte City, Missouri, USA         herzogtrish@gmail.com

3. What caused your survivor’s TBI?

An auto-racing accident

4. On what date did you begin care for your TBI survivor? Are you the main caregiver? How old were you when you began care?

June 6, 1998     I was the main caregiver.     I was 33.

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 TBI? If so, were you able to continue working?

No. I was a housewife.

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

Yes – in-home caregivers for 11 years, until my husband passed away in 2009 as a result of complications from his TBI.

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

Immediately – in the hospital

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

Yes – for 6 days. I cried, prayed, journaled, and read books and pamphlets about TBI to educate myself about the condition as much as possible.

10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab

In-patient for 3 months

Out-patient for over a year and off and on, as needed in the years

Where were you when this was happening?

I was with my husband during most therapies, except for speech. They suggested against my being there, as I was too much of a distraction for him. He didn’t filter things as well after he suffered the TBI.

11. What problems or disabilities of your TBI survivor required your care, if any?

My husband was full-care. He was paralyzed from the waist down and remained in a wheelchair for the remaining 11 years of his life. He suffered memory issues and speech dysphasia issues initially. His motor skills were also affected. He had significant spasticity in his legs. He had a shunt put in due to hydrocephalus. He suffered a few strokes after his TBI over the years. We spent quite a bit of time in and out of the hospital for various infections and health issues

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

My husband died in 2009. I cared for him and managed his care in our home from 1998-2009. It was exhausting at times, but I wouldn’t have had him anywhere else. After he passed, it was quite an adjustment period for me. Losing him and losing the chaos of daily life, with therapists and caregivers in your home, was quite the change

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

I missed our intimacy. We were still able to cuddle and be affectionate, but I became the stronger role in our relationship after he was injured. I missed my protector, my confidante, etc. We still had that together, but the dynamic was somewhat changed. He was still my best friend.

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

I can’t explain how, because my husband was my best friend and we were so close, but, in the years after he was injured, we became even closer at deeper levels. We were in this together, and we fought the battles of day-to-day TBI life together.

15. What do you like least about TBI?

It took away the husband I loved and married and left me with a different one. I loved him just as much, but in some ways very differently.

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

We saw humor in so many things on a day-to-day basis. You have to find the humor in the basic things. Our general positive outlook on life and love for each other helped us survive and thrive in the shadow of TBI.

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

It changed our dynamic completely. I took on more of a motherly role with my husband. My parents, seeing everything I was dealing with and managing, developed a greater respect and appreciation for me as an adult and not just as their little girl. I was making life-and-death decisions and handling rather scary things.

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

Yes. It was isolating, to a certain extent. Life moves on for others after the initial traumatic occurrence, but you are still dealing with the day-to-day of your new TBI life. The real friends and family will hang around. You find out who your diehard friends are.

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

I am doing it now. As I said, my husband died in 2009. I have been rediscovering who I am for over four years now. It’s still a process. I was a caregiver for so many years. It was who I was, and when he passed away, my entire purpose and reason for existence went away too. I had to figure out what I wanted to do with my life and re-invent myself…solo. It’s an ongoing process.

20. What advice would you offer other TBI survivor caregivers? Do you have any other comments that you would like to add?

You have to take care of yourself. If you are going to be in it for the long haul, respite is a must! In the years of dealing with a loved one with a TBI, there were ups and downs, sadness, laughter, eureka moments, and exhaustive moments. It was all worthwhile, every minute of it. I am a far better person today because of the hand my husband and I were dealt back in 1998. I have a much greater appreciation for many things we often take for granted – life, love, health, all of them. I miss my husband, and I wish I still had him with me…TBI or no TBI.

 

Thank you, Trish, 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 Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Photo compliments of Trish.)

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

(Reposted from my other blog – Donna O’Donnell Figurski’s Blog May 14, 2010)

A Fork in the Road to Recovery

I woke up a few weeks ago with an astounding revelation. (Aren’t they all?) But, this one really was. Though trying to sell my brilliant idea to my husband, David, would take some fancy footwork.

As our family and friends know, David is still on the long road to recovery after suffering a Traumatic Brain Injury (TBI) more than five years ago at 7:06 AM on January 13th, 2005. His TBI left his body compromised. His recovery is a balancing act – literally.

Though David’s balance has improved somewhat through the years, it is still seriously impaired. Each step David takes is deliberate, well-planned, and thought out. He is consciously adjusting his balance at every footfall. His brain constantly generates new neurons and reconnects the old in an attempt to reestablish alternate pathways to help him relearn what he already learned easily and quite well when he was a mere fourteen-month-old toddler. It’s amazing how those little tykes can balance atop their plump, squatty legs. Even more amazing that they can move them from place to place – but they do. And if they can do it … well so can David – right?

David works hard every minute of every day to relearn to walk. It’s not as easy as the two-year-olds make it look. So I had an idea to make the process easier – at  least, I hope it will.

The germ of my idea was unwittingly sown in October 2009 when I first began my salsa lessons. I admit, it was a slow-growing seed, since it took six months for it to finally hit me over the head.

On a recent morning as I pondered my first days of salsa, I recounted how difficult it was for me to make my feet and my body go where my instructor guided. He made it look easy, and I wanted my mind to comply, but my feet simply would not cooperate. I tried and tried, but the only thing I was successful at was tripping and stumbling over my own feet – not to mention my dance partner’s feet. I felt like a total  klutz. I was convinced I would never be able to do the steps. I would never learn salsa – let alone become proficient at it.  As the weeks went by and my instructor introduced the right and left turn, the hammerlock, and the cross-body lead, my mind went into swirl. No, I would never learn – I was sure of it. But, as more weeks passed, I did learn. It took time and it took practice, and after six months I can do each of those steps and I’m not too bad at it. I have even moved on to the advanced class.

What I understood on that morning of my revelation was that as I concentrated so intensely on learning each step, nothing else occupied my mind. I was entirely focused. During my lessons, it seemed that my brain rewired to accommodate the strange and foreign steps I was being asked to do. Realizing this, set the light bulb flashing. I reasoned that if my mind could overcome my dance challenge, why couldn’t David’s overcome his walking challenge?

That’s when I had my astounding revelation. It made sense to me. I had to choose the perfect time to present my idea to David, though I knew no time would be good. I knew that as soon as I uttered the words, I want you to take dance lessons. David’s immediately answer would be, “NO!”

So, I started my conversation like this … David, I have a really, really good idea. (I thought two reallys might be more convincing.) I need you to listen to my whole idea before you say anything. I don’t want you to make up your mind before I finish.” He looked skeptical. Well anyone would with that opening, but he nodded and I went on. “David, I want you to take dance lessons.” His immediate reply was “NO!” No surprise there.

I presented my ideas. He listened. One by one I ticked off all of the reasons that I thought dance lessons would be beneficial to him. He listened. I explained how I thought that the process of intense concentration might help him to overcome his balance issues as it had helped me to conquer my dance steps. He listened. I threw in the neurons and the brain-rewiring ideas. He listened. Then I told him I wanted to speak with my instructor to arrange for private dance lessons. I held my breath as I waited for his reply. He said, “Okay!”

It took a few weeks to set the lessons up, but last Monday night David had his first dance lesson with Oscar. I took the lesson with David. As we clung to each other, (He was holding on to me for dear life.) we waltzed around the room 1, 2, 3.- 1, 2, 3. Okay … so we didn’t really waltz around the room. We stayed in about a three-foot square. But at least it is a start!

When the lesson was over, I figured David would bolt. So I was really surprised when he asked to schedule the next lesson. He actually liked it. Yeah!

 

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

(Clip Art compliments of Bing.)

(Photos compliments of ME.)

 

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Newsboy th

 

 

Future therapy?  Imagine that a future surgeon can make a new neuronal circuit that will compensate for one damaged by a brain injury. New research by Chinese investigators has shown that liquid metal can allow neurons to communicate. (Full story)

 

Newsboy th

 

 

Seven-time Formula One (F1) World Champion racing driver, Michael Schumacher, remains in a coma since his skiing accident in December.  (Full story)

 

Newsboy thStem Cells from Teeth Can Make Brain-like Cells

Exciting basic research from Australia could be relevant to TBI survivors. Scientists have isolated stem cells from teeth that can be induced to form neuron-like cells. Stem cells, which everybody has, have the potential to make new tissues and organs. Already stem cells are being used to repair damaged hearts in animals and to grow new cartilage in the laboratory that should eliminate joint pain in humans. It is thought that human life expectancy may be related to the number of stem cells in the body. The Australian scientists believe it is only a matter of time that the stem cells from teeth can be made into true neurons. The ability to insert into the body neurons or neuron complexes in the form of neuronal circuits could alleviate some of the problems brought on by TBI and stroke. (Full story)

 

 

Newsboy thShawn Spencer, now 30 years old, was a high-school dropout and a gang member. An accident from speeding gave him a TBI and left him disabled. He turned his life around and will graduate from college in a couple of weeks. He’s been meeting with high school teens to warn them against speeding.   (Full story with video)

 


SPEAK OUT! – Julie

by

Donna O’Donnell Figurski

Julie Pre-TBI

This photo was taken on Julie’s 16th birthday – one month before her accident.

 

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

Julie

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

Atlantic Canada

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

 1995 (16 years old)

4. How did your TBI occur?

MVA (motor vehicle accident)

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

Right away

6. What kind of emergency treatment, if any, did you have?
(e.g., surgery,

tracheotomy, G-peg)

ICU (intensive care unit)

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

Yes – 2 weeks or more.

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


Yes – pain clinic, chiropractor, acupuncture, physio, massage, meditation, etc.

How long were you in rehab?

It has become a part of life…Keep your body and mind healthy.

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

I have balance, perception, personality, and memory problems (to name a few).

There were physical, chronic pain, arthritic, and TMJ (temporomandibular joint)problems from the accident.

Epilepsy (grand mal and petit mal) formed 10 years later.

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

I was 16, so I don’t know how my life would have gone. I know I had a plan for myself, and the MVA changed it all.

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

Feeling normal

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

My family and trying to stay positive

13. What do you like least about your TBI?

It changed everything about me… but on the outside I still look the same.

14. Has anything helped you to accept your TBI?

 After almost 20 years, I suppose time made me accept it.

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

 I lost friends. I became extremely moody, very hateful, and difficult for a very long time. My parents split shortly afterward. The accident was just the last thing to tip things over the edge for them. Depression and anxiety ganged up on me, and everything piled up, feeding off one another, leading to an unhappy life for a very, very long time.

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

 You name it…

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

 My husband and I work together. He helps me with learning, any physical obstacles, during/after seizures, and over the past five years or so things seem to have improved in many ways.

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

 Working and enjoying life with my family

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

 No one knows what you are going through. No one knows how long it will last. Everyone has a different story. You are no less important than anyone else. You are still a person and still count.

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

 Don’t let yourself get depressed. That dark place will take you nowhere fast and can keep you for a long time.

Julie Post-TBI

More recent photo. Post-TBI

Write about your feelings, draw, paint, sing, do anything you can…but be sure to get your feelings out and make peace with life and how it has gone for you.

 

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

(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.

Gabby & Mark TED Intreview Apri 2014

 

 

When TED interviewer, Pat Richards, asked former Arizona Congresswoman, Gabrielle Giffords (who is recovering from a Traumatic Brain Injury caused by a gunshot wound to her head), if she wanted the “old” Gabby Giffords back or whether she was embracing the “new” version of herself, Gabby emphatically said, “The New One! … Better! Stronger! Tougher!”

Listen to the interview – “Gabby Giffords and Mark Kelly: Be passionate. Be courageous. Be your best.”

Gabby and Mark are working for a safer world. See Americans for Responsible Solutions.

(Photo compliments of TED.)

(Disclaimer: The views expressed are not necessarily mine.)

 

As I say after each post:

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 lower right corner of your screen.

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

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

Feel free to “Like” my post.

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