TBI – Survivors, Caregivers, Family, and Friends

Archive for July, 2014

SPEAK OUT! . . . . . . . . . . . . . . . . . . . . #2 Itty-Bitty GIANT Steps

SPEAK OUT! #2 Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

SPEAK 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 donnaodonnellfigurski@gmail.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 are this week’s Itty-Bitty Giant Steps.

Cheri Richardson Hicks . . . I managed to make a six-hour drive to go to my 20-year reunion for high school. It felt so good to reconnect with old friends. I walked a lot, but I kept up. It was a lot of fun. By the way, Donna, I really love taking part in your website. It’s fun to do.

Andi Ramsay . . . Not Itty-Bitty, but this week I rode over 100 miles for my local Headway (a brain injury charity).

David Figurski . . . I traveled cross-country and back. I flew from Phoenix, Arizona, to Boston, Massachusetts, to enjoy several days with the parents of my son’s new wife in her parents’ rented vacation cottage. My son, his wife, and her two sisters and their families were also there. Both Donna and I had a delightful time.

Congratulations to all contributors!

(Clip Art compliments of Bing.)

 

Brain Injury Resources . . . Unleashed Talents

Can TBI Unleash a Talent That We Didn’t Know We Have?

 

Brain th-2TBI survivors are usually defined by others in negative terms. Survivors are often seen as people who are no longer able to do something they once did easily or as people who are physically disabled. It has become strikingly evident from the interviews on this blog (Survivors SPEAK OUT!) that TBI survivors, once they have accepted the new normal of their lives, often show immense courage and determination. They have aspirations and exhibit motivation that is intensified or that wasn’t even known to exist. Here are two videos that show a positive outcome from TBI.

The first video is long (1 hr, 5 min), but it is mesmerizing. In it, neurologist Dr. Darold Treffert discusses (with videos) the “savant syndrome.” It is thought that some abnormality in the brain unleashes a skill that normal people find to be phenomenal. At 29 min 20 sec into the video, Dr. Treffert discusses “The Acquired Savant” – a person who has become a savant after a brain injury. Although becoming a savant after a brain injury can happen, it’s rare. But, any model of the brain has to be able to explain the savant syndrome. Dr. Treffert suggests that the brain comes “fully loaded with software” and that the normal functional brain eventually suppresses much of its intrinsic “software” to reduce stimulation. This means that we all may have suppressed talents.

The second video is much shorter (15 min) and is relevant to all TBI survivors. Ann Zuccardy redefines what it means to be smart. A person may define himself or herself by a certain talent or ability. Does one’s life then become unfulfilling when that skill is lost as the result of a brain injury? Ann Zuccardy, who was affected by a brain injury, tells us that the loss of a dominant skill allows a person to nurture and/or develop other skills that may have been ignored. These other skills can be as useful as or even more impressive than the dominant one was.

(Clip Art compliments of Bing.)

 

SPEAK OUT! Guest Blogger . . . . . . George Visger (former NFL SF 49er)

SPEAK OUT! Guest Blogger George Visger (former NFL SF 49er)

Short, Choppy Steps

 

Boy Blogger thAnyone who has ever spent time on the gridiron will know what those words mean. But their meaning holds truth far beyond the playing field and can be applied to everything we do in life.

In football, the object of the game is to win. But to win, you must score. To score, you need to punch the ball across the goal line.

But what if the goal line is 99 yards away?

Short, choppy steps will get you there – not long strides and an occasional 50-yard run.

In football, everything starts with a good stance. You need balance. Just like in life. You need to get yourself into position to succeed before you can succeed. A bad stance, and you’re beat before the ball’s snapped. When playing defense, if you have too much weight on your right foot, you’ll never be able step with that foot, and the offensive linemen will easily be able to cut you off if the play is going that way. If you have too much weight forward, like you have during a passing situation, you can never react quickly enough if they call a run to the inside.

A good stance is a balanced stance. Try it.

No, I mean try it. Everyone who can, stand up.

Stand up tall – feet, shoulder-width apart, and toes, even. Move your dominant foot back about 10-12 inches so your right toes (if right-handed) are even with the instep of your left foot. Now push your chest out and your butt back. Slowly squat down until your elbows touch your knees. Once your elbows make contact, lean forward a bit and place your hand on the ground with your thumb directly under your nose.

That’s a balanced stance. You can easily move in any direction from that position.

#74 NFL San Francisco 49er, George Visger @ 1981

#74 NFL San Francisco 49er, George Visger @ 1981

On offense, if you don’t score, you can’t win. To score, you have to move the ball. If the offensive lineman fires out with a long stride – like you would do when sprinting, it’s very easy for the defensive player to knock him on his butt. Holding your head up and looking 90 yards down the field at the goal line is a great way to get your cranium removed. Considering the cranium is a fairly important organ, it’s best you hang on to it. You need to keep your butt down, your face up, and your neck bowed and to take short, choppy steps.

Try it.

A long stride with your head up is a narrow stride. Any pressure from the side will knock you on your butt. To maintain the most strength, you want short, choppy steps. Fire out, and keep your butt down and your face up. Stick your face into the numbers, and, with your butt under you, drive with short (12-16 inch) strides. That’s where you get your power. Not a long, narrow, unbalanced stride with your neck craned up and your head looking downfield. Focus on the short, choppy steps.

If a football team got only 4 yards every play on offense – no more, no less, they would never lose.

Think about it.

Only 4 yards a play, and you would NEVER LOSE!

George Visger #74  4th row from bottom, 2nd from right  @ 1981

George Visger #74
4th row from bottom, 2nd from right
@ 1981

That’s a first down every 3 plays. You would score every time you had the ball. NO ONE could stop you.

Every one has a cross to bear. Some crosses are much heavier than others. I have met people on my journey, who have silently carried crosses I could never even lift. Yet they pack them – everyone.

And never complain.

If we looked downfield every day – gazing at where we want to be in life and thinking about what we have to deal with to get there, we’d never score. You need to keep that goal line in the back of your mind every day of your life – every play, but to get there, you need to focus on each step. One day at a time. One step at a time.

A single short, choppy step each day wins games.

Set a short-term goal each day, and focus on that.

In 1986, at the age of 28, I returned to school to complete my Biology degree, after an Orange Bowl, a Super Bowl, three emergency VP (ventriculoperitoneal) shunt brain surgeries, and several gran mal seizures. I needed four semesters of Chemistry (Chem 1A, Chem 1B, Organic Chem, and Bio Chem), two semesters of Physics, two semesters of Pre-Calculus, and other fun classes to complete my degree in Biological Conservation and to attain my second dream in life – to be a wildlife biologist. (My first dream was to be the greatest NFL player of all time.) At the time, I was working construction during the day, earning a Class B General Contractors license in the evenings, and bouncing at bars at night to survive. (No, all NFL players are not millionaires. I was a 6th-round pick in 1980 and signed for $35,000.)

After I returned to school in 1986, I survived five additional emergency brain surgeries during a 9-month period in ‘86-’87, while taking Organic Chem, Physics, and other classes. I was in Organic Chem three times when my shunt blew out. I had emergency brain surgery, and I dropped out of school. After the first, I came back and took the class again. Another shunt blow out and another brain surgery, and I dropped out of school again. Happened a third time. This time, I was determined not to drop out. Brain surgery on Saturday, and I left the hospital on Sunday, 23 hours later. I was sitting in Organic on Monday when I had a >50-minute gran mal seizure. I was hospitalized for a week. It seemed I had developed an infection in my shunt on that one. They sent me home with a PICC line (peripherally inserted central catheter) in my arm, with a pump taped to my bicep, and with a tube that ran directly into my heart to deliver antibiotics. I packed that around for 10 days and had to drop out of school again.

I came back the next semester, but by then I had developed dyslexia and major short-term memory issues from my surgeries and gran mal seizure meds. (I’ve been on Dilantin, Depacote, Phenobarbital, Kepra, Zonegran, and now Lamictil.) After discovering through my own investigations that each one causes short-term memory problems, I had my doctors change the meds because I didn’t like the side effects. I had to write on my notebook where I parked my truck each day, or I would spend an hour or two walking up and down each row of cars in each parking lot on each side of Sacramento State University looking for my truck.

I came back the next semester so frustrated I met with my counselor, Mr. Sterling Ebel, a man who had as much influence on my life as anyone other than my father. Mr. Ebel was a man who quietly gave me information on how best to achieve my goals and connected with me as a person and a man. He was a man who wore the same tiny tie clasp every day I knew him. It had two words:

“TRY GOD.”

“Sterling, I can’t keep doing this crap. I can’t even remember where I parked my truck, much less Organic Chemistry. I just want a degree. I don’t care what it’s in. Just find me a degree. I need to get on with my life,” I ranted one day, as I barged into his office without an appointment, ready to quit.

“You’re 12 units from a Social Science degree,” he calmly replied after studying my transcript and telling his receptionist to hold his next appointment.

“OK, I’m a Social Science major,” I said.

That semester I took 6 units towards my Social Science degree, and passed both classes. The next semester, just 6 units shy of a BA in Social Science, I decided I’d give Organic Chem one more shot. I’d never quit on anything in my life, and words of my father, Big Jack Visger, the greatest man I’ve ever known, rang in my ears:

“Shoot your best shot.”

If I didn’t make it through Organic on this one, God didn’t mean for me to be a biologist. I was shooting the last round in my chamber.

On the fourth try, I powered through Organic – a “Short, Choppy Step.”

Physics 1B – Short, Choppy Step

Pre-Calculus – Short, Choppy Step

Bio Chem – Short, Choppy Step

In 1990, at the ripe old age of 32, with 172 units completed, gran mal seizures, and eight VP shunt brain surgeries under my belt, I earned a Bachelor of Science degree in Biological Conservation. Graduating made playing in the NFL look like child’s play.Visger, George

Another Short, Choppy Step.

And I continue to take short, choppy steps each day.

 

Thank you, George.

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

 

 

SPEAK OUT! . . . You Are Invited! Launch “Another Fork in the Road” on Brain Injury Radio Network: Donna Tells Her Story Aug. 4, 2014

Come one! Come ALL!putthis_on_calendar_clip_art

What:        Launch “Another Fork in the Road” on Brain Injury Radio Network: “Thursday, the 13th – an unlucky day!”

Why:         Donna tells about the onset of David’s Traumatic Brain Injury and their life together after TBI.

Where:     Brain Injury Radio Network

When:       Monday, August 4, 2014

Time:         5:00p PDT (6:00p MDT, 7:00p CDT, and 8:00p EDT) 90 minute show

How:         Click: Brain Injury Radio Network.


Call In
:    424-243-9540

Call In:     855-473-3711 toll free in USA

Call In:    202-559-7907 free outside US

or SKYPE

If you miss the show, but would like to still hear the interview, you can access the archive on On Demand listening (Archived show) will be available after the show

(Clip Art compliments of Bing.)

SPEAK OUT! . . . You Are Invited! Interview with Stephanie Carbone July 27, 2014

                         

                           Come one! Come ALL!putthis_on_calendar_clip_art

 

What:        Interview with Stephanie Carbone

Why:         Her husband, Sean, is accused of a crime. Is he “unjustly condemned?”

Where:     Brain Injury Radio Network

When:       July 27, 2014

Time:         5:00p PDT (6:00p MDT, 7:00p CDT, and 8:00p EDT) 90 minute show

(Clip Art compliments of Bing.)

Survivors SPEAK OUT! Julie Kintz

                                                        SPEAK OUT! – Julie Kintz

                                                       by

Julie Kintz

Donna O’Donnell Figurski

 

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

Julie Kintz

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

Fort Wayne, Indiana, USA     juliekintz@gmail.com

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

1991     Age 21

4. How did your TBI occur?

Car accident

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

My car went off a cliff in California. There was a house being built, and the construction workers saw it happen as they sat on the roof eating their lunches. They are the reason I am alive today. I doubt that I would have ever been found. I never did get to thank them.

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

I had surgery to relieve the swelling in my brain.

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

Yes.     One week

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

I did not have any rehab, although I really needed it.

How long were you in rehab?

I never had the opportunity to attend a rehab center.

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

I find it funny that this question is difficult to answer. I do not see them as “disabilities” as much as I see them just as the realities of my life. My condition has become the way it is. I normally do not think about it very much. For instance, the left side of my body is weaker than my right. My left leg is three inches bigger than my right leg and has little muscle tone. My legs look like the “before” and “after” pictures for when someone begins to work out. I used to think of myself more like “the elephant man.” Then I learned to accept me with all my flaws because I have so many positives going for me. The effects of my injury that cannot be seen are frontal lobe damage (both on the right and left sides) and damage to my hypothalamus/pituitary axis. I have learned great coping skills, but I still struggle with ADHD (attention deficit hyperactivity disorder) and other frontal lobe issues, including memory issues.

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

I do not remember my life before the accident. I lost the memory of my life previous to the accident. I still struggle with both long- and short-term memory issues. I have learned to accept where I am at the moment. Doing this helps to empower my future. At any second, we can decide if we are going to be a victim or a survivor. I may struggle with an issue for a bit. Then I decide that the only way to go is forward and determine what will help my goals become reality.

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

I wonder what I would have been capable of doing if not for this brain injury.

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

I have the ability to understand the shortcomings of others, even if they do not want to understand mine. I also have embraced the idea that this is my journey, and I try to make the best out of what is in front of me.

13. What do you like least about your TBI?

The struggle of living with chaos in my head can be overwhelming. The lack of understanding about brain injury by our society makes everyday life a bit tougher than it needs to be. It is the reason why I am working on starting a brain injury center – so one could say “I found my purpose by having these struggles.”

14. Has anything helped you to accept your TBI?

The more I understand who I am outside of my injury, the more I have learned to love myself unconditionally. By doing this, I am not afraid to try new things.

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

Yes. Emotional dis-regulation was not understood when I had my accident, like it is now. My family did not know how to deal with it, so I was left to fend for myself.

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

Absolutely! I really need a lot of downtime, even 23 years post brain injury. I enjoy being with people, but eventually I need time in a quiet place. I do spend a great amount of time alone.

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

I have been my main caregiver since the accident.

18. What are your future plans?

I will be starting graduate school in the fall in a Purdue University program: Interpersonal and Organizational Communication Theory. By attaining this degree, I hope to help those with brain injury live a fuller and more productive life.

What do you expect/hope to be doing ten years from now?

I am currently working with some wonderful professionals to open a not-for-profit brain injury center where I live. My dream is to build centers all over to educate survivors, their families, and professionals about brain injury. The center will also focus on the unmet needs of those with brain injury. These are considered secondary to the original problems. These would include, but not be limited to, the following: low self-esteem, making and keeping friends, and learning to communicate effectively.

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.

Come to terms with where you are in life. Instead of spending time wishing the injury did not happen, accept it and figure out what you can do to get you to where you want to be. Accepting that your brain injury cannot be changed frees your mind to figure out how to get you to where you want to go. If you do not know where you want to go, then try new things. Finding your passion will help you heal both your body and your mind. What we think really does affect how well we heal. You will get what you look for. If you are looking for how bad life is, you will find things to verify it. If you look for the good, you will find that as well. Finding who you are will help put you on a better path.

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

Find who you are – not who people say you are, but who you truly are. Let your struggle build you to be the best you can be. Look at it as if you were writing a book. Every day, when you wake up, ask yourself, “What do I want to write in my book today?” You can choose to write about how you overcame a struggle just to get out of bed. When you conquer that struggle, it will fuel you to set a new goal. Everyone climbs a mountain one step at a time.

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

It is important that you find a support group in your area. Support group members can be a great deal of help in figuring out what doctors and professionals in the area will be good, or not so good, for you to see.

Also there are a ton of Facebook support groups; find some that you feel comfortable in. They can be a huge source of support and knowledge. Please keep in mind that people can use these groups to prey on people who are desperate for a cure. A red flag should go up if they, or people they know, are making money off what you are sharing with them. Ask for research. If the research is not from a reputable source (for example, the Mayo Clinic), then research it some more. Ask others on the site if they have heard of it. There are others on the site who will help with the research. If it sounds to good to be true, it normally is.

Educate yourself about brain injury.  Make sure you know what your MRIs (magnetic resonance imaging) and other tests tell you about your injury. You will need to learn to be your own advocate. But, getting an advocate can be of great help when you are too fatigued to advocate for yourself. A great place to start is at the Kintz, JulieBrain Injury Association of America (BIAA).

I also have a talk show, Quantum Leap, on the Brain Injury Radio Network. On it, I discuss current research, as well as interview professionals who work in the brain injury world. The network has shows seven nights a week. Volunteers who either have a brain injury or are caregivers run the Brain Injury Network. Just as brain injury is different in everyone, the hosts have different approaches to their shows. Everyone should be able to find a show that he or she enjoys.

 

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.)

(Photos compliments of Julie.)

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.

Brain Injury Resources . . . Facts and Myths About the Brain

Facts and Myths About the Brain

Brain th-2

 

This short video tells us what’s known to be true about the brain and clears up some common misconceptions.

 

(Clip Art compliments of Bing.)

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