TBI – Survivors, Caregivers, Family, and Friends

Archive for June, 2014

Brain Injury Resources . . . . . . . . . . TBI Awareness, The Drew Carter Project Interviews Me!

Interview with TBI caregiver, Donna O’Donnell Figurski
as seen on TBI Awareness, The Drew Carter Project

 Drew, thank you for your interest and for taking your time to interview me for your blog. Drew writes about a lot of great topics. I hope my readers will stop by to see what he shares with his readers – as we raise awareness of TBI – one view at a time.

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1. How do you find time for yourself? Does this change according to your husband’s recovery? (I think I remember you telling me he had one)

My husband’s traumatic brain injury happened more than nine years ago. He wasn’t expected to survive any of his three brain surgeries (for a cerebellar hemorrhage, removal of an aneurysm, and removal of an arterio-venous malformation), but he did! When David returned home from his stays at the general hospital and the rehabilitation hospital (two and a half months after his event), picture a rag doll. He was reduced to an infantile state and was completely dependent on me. He was unable to feed himself, dress himself, and take care of any of his daily activities. Fortunately, some friends and family helped me in the beginning. After taking a family leave for three and a half months to stay by David’s side in the hospitals, I returned to teaching my first graders. However, whenever I was home, I was totally responsible for David’s welfare. For at least a year, I was never able to leave him alone. David was a prisoner without bars. So was I.As the years passed, David became more adept at caring for himself, and slowly I felt confident enough to leave him alone at home for short periods of time. The intervals grew as the years marched on, and now I can comfortably leave David for long spans of time. This has freed me immensely. I am able to run errands without having David accompany me. I am able to attend my writing-group meetings, and I have joined the theater, as an actor, assistant stage manager, and director. Despite my new freedoms, David and I remain tethered together by our cell phones. I am only a phone call away.
Unfortunately, because of David’s severe loss of balance, even nine years later he cannot leave the house unassisted.

2. Do you have a sense of community, like support groups or other services?

When David was released from the rehabilitation hospital, I took him to a local brain-injury support group. Although David’s brain was severely damaged, he was not able to relate to the other folks there. He said it made him feel worse, so we stopped going.

When David was in the hospital, I met a woman whose husband had a TBI two weeks after David. I made a point of getting to know her because I thought I could help her. Though the TBI of Judy’s husband is very different from David’s TBI, Judy and I became close friends. But, since we live a distance apart, we offered support via email, phone calls, and an occasional visit.

I was not aware of any other support groups for caregivers back then. It was only in December of 2013 that I found via Facebook brain-injury support groups online. I am now an active member of several traumatic-brain-injury groups, all of which offer friendship and support and answer questions for both caregivers and survivors.

I’m so glad to have found these groups. They provide instant information and support for anyone who needs it.

3. What have you found to be the hardest part of a TBI recovery?

Wow! That’s a hard question. The lives we knew were ripped from us on that fateful morning of January 13, 2005.

I feel very much like Dorothy, when the cyclone picked her up in Kansas and dropped her on the yellow brick road. Like Dorothy, I searched for a way home to the secure and familiar. Unlike Dorothy, I’m still searching.

When something burst inside David’s head, our lives changed forever. It was a complete role reversal. In an instant, I was suddenly in charge, and I was not prepared for my new life. Before TBI, David oversaw the business of running our home – juggling the bills, doing home repairs, making decisions, and . . . taking out the trash. I liked it that way. I chauffeured the children to their soccer games, gymnastic meets, doctor’s appointments, etc. and prepared breakfasts, lunches, and dinners. I liked it that way. In the evenings when David returned from his laboratory at Columbia University and I came home from my 1st or 3rd graders, we fit in “walk-talks” through the neighborhood. We liked it that way.

After David’s TBI, I had to figure out how to run the house. The kids were grown and gone, but I had to pay the bills. (What bills? I didn’t even know what bills we had!) I had to get money from an ATM. I know it’s crazy, but I didn’t know how. David had shown me many times, but, like Scarlet O’Hara, I never paid attention. “Tomorrow, I’ll do it tomorrow.” Well tomorrow slammed me in the face on January 13th, 2005. I was stuck when David slipped into an unconscious state and the code slept with him. I didn’t know who to call for home repairs or to distinguish between junk-mail and important mail, and . . . I had to take out the trash.

Those are some of the things that were very difficult for me. Another was dealing with insurance companies. Fighting with them to pay the bills was overwhelming and extremely stressful. The phone calls and the letters seemed unending. I felt it was unfair for my insurance company not to pay the claims that they so proudly advertised they would do when they were recruiting my business. I kept my part of the bargain. I paid my hefty insurance payments for countless years on-time each month, with no reminders or urging from the insurance company. I never missed a premium payment, though I hadn’t need of their services. Yet, when it came time for them to cover David’s hospital and doctor bills, they tried to renege, not only making me jump through hoops, but also making me feel like I was shaking a tin can on the corner. It was not only downright insensitive, it bordered on criminality. I know many folks will relate to this. I am not alone.

But, the absolute worst of course, was losing the man I married. The man I met at age sixteen went to sleep in a coma, and the man who woke up is a new version of him – a wonderful guy, just the same, whom I will love to forever, but I often miss the “old” guy too.

4. What has been the easiest part of recovery?

This question, too, takes some thought. When I brought David home after his spending two and a half months in hospitals, I thought I would lose my mind. Not only was he like a rag doll and able to do nothing for himself, he was also not quite right with his thinking. He didn’t understand what was going on, and it was very difficult for him and me to live our daily lives without the hospital support. For years, I became his extra self. I did everything for him.

But after time, as he slowly regained some of his missing skills, life became a little easier. David eventually returned to his laboratory at Columbia University. His nature before his TBI was always good, but with his job, he was usually on overload and lived with a lot of stress. After his TBI, he seems more relaxed and lets many things roll by. He tries to make things easier for me, and, now that he is more able to care for himself, he encourages me to pursue my many interests. I have become involved with the theater and my writing groups. I am able to meet girlfriends for lunch dates and walk-talks, or slip out for a quick coffee with a friend.

So, I guess David’s accepting attitude, coupled with his persistence to get better and to make a better life for both of us, is what gets us through.

5. Have you found a spiritual path helpful?

Truthfully, neither of us follows a spiritual path, but our belief and love for each other is what bolsters us through each day, week, month, and year. Together, we will do this!

 

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Survivors SPEAK OUT! Amy Rankin

SPEAK OUT! – Amy Rankin

by

Donna O’Donnell Figurski

Rankin, Amy Book

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

Amy Rankin

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

Auburn, New York, USA

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

October 30, 2004           Age 23

4. How did your TBI occur?

While walking home, I was hit by a drunk driver in a pickup.

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

The driver of a passing car saw the truck flipping and called 9-1-1. They found my roommate dead a ways from myself and the truck.

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

Wonderful doctors removed half my skull to relieve swelling. I had a tracheotomy and a G-tube (gastrostomy tube).

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

Yes, 33 days

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?

I did rehab in Baltimore (but it wasn’t great) at Kernan Hospital. After they put my skull back together, I went to St. Camillus, where I did wonderful speech, physical, and occupational therapies both as an In-patient and an Out-patient. I did other therapies after my discharge from St. Camillus as an Out-patient. I continue to work with a language pathologist.

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

I’ve worked very hard to overcome many of my disabilities. I’ve run a couple of 5Ks and wrote a book about never giving up – Nobody Thought I Could Do It, But I Showed Them, and So Can You! (Amazon.com). My vision continues to be trouble. I cannot recognize people. It gets embarrassing.

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

Better – My faith in God has grown. I’ve met and worked with absolutely wonderful people.

Worse – I don’t like the loss of independence, the embarrassing moments, and not being with my friends as often as I’d like.

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

I greatly miss driving and being with friends.

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

I love to volunteer and to help other TBI victims or any victim. I wrote my book to help others. I met my great boyfriend, who is also a TBI survivor.

13. What do you like least about your TBI?

I don’t like being unable to drive and see friends. I’m sad that I can no longer teach Special Ed. I miss teaching very much, but I believe my book can do some teaching for me.

14. Has anything helped you to accept your TBI?

I’ve been helped by God and by the positive attitudes and support of my family and all my doctors and therapists.

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

We moved to a beautiful new house. I met my wonderful boyfriend. I don’t communicate with my girlfriends from college as much as I used to.

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

My boyfriend also survived a TBI. We don’t see each other as much as we’d like to. When we do, it’s magical.

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

My father is my main caregiver. I dedicated my book to him. I know both my parents have given up a lot and changed dramatically. A good caregiver is caring and has love and respect for you.

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

I’m hoping to go back to school to become a recreational therapist and to have my book help even more people.

19. What advice would you offer to other TBI survivors

Have a positive attitude.

Be aware of the love of other people.

Do what you can.

Find something to smile about daily.

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

A TBI changes your life forever, but don’t feel disabled. Work out of it! Believe you’re a survivor!

 

Thank you, Amy, 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.)

(Photo compliments of Amy.)

 

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.

 

SPEAK OUT! NewsBit . . . . . . . . . . . Public Release of the First Comprehensive Guidelines on Concussions in Children

Public Release of the First Comprehensive Guidelines

on Concussions in Children

 

newsboy-thChildren’s Hospital of Eastern Ontario, the Ontario Neurotrauma Foundation, and a panel of 30 experts from the US and Canada established and released guidelines meant to standardize the identification and management of concussions in 5- to 18-year-old children. Dr. Roger Zemek, who headed the panel, said, “We’ve developed a reliable resource that is valuable for everyone affected by pediatric concussion: from children and their families, to healthcare providers, and to schools and recreational organizations. This is so important because children get more concussions than adults do, with increased risk because their brains are still developing.” The group read over 4,000 publications and considered current technology. In one example, a pocket-sized device will allow a coach to determine on the sideline whether a player has a concussion or not. There are explicit guidelines for the diagnosis and care of concussions in children, as well as for determining when a child should return to school or play a sport again. The guidelines have been posted on a website and are freely available to anyone, especially parents, educators, coaches, and heathcare providers. (Full story)

 

 

 

SPEAK OUT! NewsBit . . . . . . . Implanted Microchip Allows Paralyzed Man to Move His Fingers by Thought

Implanted Microchip Allows Paralyzed Man

to Move His Fingers by Thought

newsboy-th

 

Paralysis can be a serious outcome of a traumatic brain injury. Research by scientists and physicians at Battelle Memorial Institute and Ohio State University resulted in the ability of a paralyzed man to flex his fingers. In a first, a microchip implanted into the man’s brain allowed him to curl his fingers simply by thinking about moving them. The result was simple – moving fingers – but the significance of the result is enormous. This small success will eventually lead to huge gains in the thought control of prostheses and in the quality of life for many TBI survivors. (Full story)

 

 

 

Survivors SPEAK OUT! . . . . . . . . . Drew Carter

SPEAK OUT! – Drew Carter

by

Donna O’Donnell Figurski

Carter, Drew Rehab

 

 

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

Drew Carter

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

Asheville, North Carolina, USA

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

My TBI happened 13 years ago. I was 20 or about 21.

4. How did your TBI occur?

I was in the second semester of my first year at Western Carolina University. I was attending a party and fell off a retaining wall. I hit my head on the concrete.

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

I was diagnosed with ADHD (attention deficit hyperactive disorder) and a learning disability before my accident. After my TBI, they got much worse. My accident put me in a coma for five weeks. I slowly woke up from the coma, and my injuries were obvious.

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

I had a tracheotomy and a belly tube for food. When I came out of my coma at Mission Hospital, they sent me to Shepherd Center in Atlanta and then to Thomas Rehabilitation Center.  

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

I was in a coma for five weeks at Mission Hospital in Asheville.

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?

I don’t do rehab anymore. I do exercise regularly, and I practice speaking.

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


At first, I had a lot of problems. I had to learn to swallow. My physical ability came back first, and then my mental ability returned. I’m about at a level people might say is normal. I believe that, as TBI survivors, we can continue to grow and pass what we think our limits are. It’s the TRUTH.

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

For me, I would say my life is far better. Going through the ordeal made me a stronger person. After the accident, I was forced to grow up faster.

Drew Carter - before TBI with his family

Drew Carter – before TBI with his family

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

I miss my young, carefree life, but with more responsibility comes more freedom.

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

I like the idea that I might be able to help and support other survivors.

13. What do you like least about your TBI?

They call me bipolar now.

14. Has anything helped you to accept your TBI?

I was helped by my faith as a Christian.

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

I became closer with my mother.

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

I lost lots of friends because my personality changed, and I had to relearn almost all my life-skills.

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

My main caregiver is my mother. I know that being a caregiver can be hard for a parent or loved one. I have seen lots of caregivers who believe that a survivor will not or cannot progress anymore. Sometimes the TBI recovery seems impossible to caregivers because they are watching the situation from the outside. This can affect the TBI survivor. I imagine it can be very hard for the caregiver. My recovery has caused a lot of stress for my mother.

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

I would like to be a successful artist. I hope to produce my own ceramics and clothing. I also want to help other TBI survivors.

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 TBI survivors with your specific kind of TBI.

Always set your goals beyond what you think is possible. Don’t just accept other people’s opinion of how much you can recover.

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

Drew Carter - after TBI

Drew Carter – after TBI

Stay strong and embrace your life.

 

Thank you, Drew, 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 this project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

(Photos compliments of Drew.)

SPEAK OUT! NewsBit . . . . . . . . . World Cup Matches Highlight Great Soccer, But Danger is Not Erased

World Cup Matches Highlight Great Soccer, But Danger is Not Erased

newsboy-th

 

 

World Cup soccer is exciting, but anyone who knows what a brain injury can do sees the violence in the sport. This article describes the danger of contact with objects or other players. Heading causes the most brain injuries, as expected, but counterintuitively not from contact with the ball. Going up for a header greatly increases the probability of other kinds of contact. Simply playing soccer can result in brain injury. Goalkeepers are at most risk for injury. Some players have begun to wear protective gear, but soccer leagues for adults have not gotten behind this welcome safety trend. (Full story)

 

 

 

TBI Tales It’s Just a Fork in the Road

It’s Just a Fork in the Road

Fork

 

Life offers many forks-in-the-road. We all run into them. As a teenager, you might have to choose between going to the Friday night football game or going to the Saturday night dance. Without knowing, you choose the dance and meet the boy you are going to marry someday. You have to wonder – would you have met someone else at the game, someone whom you would have been interested in? Who knows!

You’re graduating high school and preparing to choose your life career. Being a flight attendant would make you soar to the clouds. So, you send out tons of applications to every airline, both domestic and international, and then wait with excitement and anticipation. When weeks later each application is returned with a “Sorry you do not meet our height restrictions,” you brush away the tears as if your life were ending. Then through blurry vision you move on – searching for your next fork-in-the-road. True story!Green frok

That was a major fork that was decided for me. Of course, I was devastated. At that young age, I didn’t know there’d be other forks down the road – forks that would have better paths for me. Some years later, I stumbled onto the road to teaching young students (5- through 9-year-olds), which would become my career, one that I loved for more than thirty years. Forks can literally change the course of your life.

Some forks may be joyous. Choosing the number 4 on the lottery ticket instead of your usual 7 may put that winning ticket in your pocket.abeb43281f0b208b78694177f687e2b7

Other forks may save you time. By turning down Delancey Street instead of going your normal route down Avenue One, you may have avoided the unadvertised construction that would have added an hour to your commute.

Forks can even be disastrous, like the one that has governed my life since January 13, 2005 – the day my husband, David, had a traumatic brain injury. That morning altered the course of my/our life/lives forever.

We encounter forks in the road every day, sometimes every minute of our days. Most of the time we aren’t 062314 Fork in the Middle of the Roadaware of them or don’t think about them. Many of them we have no control over – even the ones we do don’t always have the outcomes we might wish for.

Forks-in-the-road are what make up our lives – what make our lives different from any other life.

So, enjoy the good forks. Make the best of the ones that put up the detours in your life and … get on with living.

 

(Clip Art compliments of Bing.)

(Photos compliments of John Hanlon.)

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