TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury’

SPEAK OUT! Guest Blogger: Broken Brain – Brilliant Mind Change . . . for the Better

SPEAK OUT! Guest Blogger:  Broken Brain – Brilliant Mind

Change . . . for the Better

 

Boy Blogger thWhen it comes to TBI recovery, it’s easy to feel like things are never going to change. After I fell down a flight of stairs and hit my head in 2004, my personality changed dramatically. Before my fall, I used to be very levelheaded and thorough. I was competent to an extreme. Being a Type A overachiever was a big part of my personal identity, and any time I fell short in the know-how department, I worked my butt off to make up for it. I was very funny, once upon a time, and I was fun to work with. People sought me out and asked specifically to have me assigned to high-profile, high-stakes projects at work. I could pick up new skills with little or no problem, and I was always up for a challenge.

After my fall, I basically fell apart. I lost the ability to read things and understand them. I hardly could sleep. I was always on edge, and my hot temper flared at an instant’s notice. The worst was I lost my sense of humor. I no longer thought anything was funny. Plus, I could not learn new skills . . . at all. I could never figure out for myself where to begin new tasks, and, when others told me where to begin, I could not stick with things long enough to complete them. But I could not see that something was “up” with me. It was always someone or something else’s fault.

And I thought that nothing would ever change. So did my spouse. Both of us figured the old me was gone for good.

But it hasn’t turned out that way at all.

I somehow managed to find a neuropsychologist who is a strong believer in neuroplasticity — the idea that people’s brains change and that we can get better after TBI. My “neuropsych” is convinced that the brain can rewire itself, and so am I. In fact, I have been a believer in neuroplasticity for 30 years. Back in the early 1980s, I came across a scientific report that showed the brains of rats that had been exposed to a rich learning environment versus those that had not received any stimulation. The brains of the stimulated rats were chock-full of additional connections (their wiring). The proof was in the picture, and it was undeniable. If that happened to the brains of rats, surely it happened with humans as well!

In the last 5 years, since I started my TBI rehab, I have seen so many changes for the better. I realize now that my fall in 2004 was really the most recent of a series of mild traumatic brain injuries, which started when I was a kid. I’ve had at least 9 mild TBIs since I was about 7 years old, and there could have been more that I just can’t remember. So, I’m not just recovering from a fall in 2004. I’m recovering from a lifetime of concussions — some of them worse than others, which finally culminated in my nearly catastrophic traumatic brain injury ten years ago.

To say that I’m a different person now would be an understatement. There have been many ups and downs, and some days I still wonder who the heck I am. But in the end, things are so much better now than they were just five short years ago. TBI recovery takes years and years — and even when we reach a level of decent functioning in the outside world, our inside world can still feel like utter chaos.

My life can “feel” very chaotic, when it’s actually very calm and orderly. That’s one of the weird and frustrating things about my injury — it makes many things seem far worse than they are, and I tend to react to that impression, rather than stepping back and taking a logical look at things. It’s hard to trust my brain, when it’s constantly sending me signals that something’s wrong while everything is actually pretty awesome.

But to be honest, it’s tough to believe everything is okay when you have constant issues that never seem to go away. I get overwhelmed by back and neck pain, loud ringing in my ears, sensitivities to light and noise, and feeling like I’m always playing catch-up. My memory comes and goes; I’m tired a lot and have trouble sleeping; and my energy level is unpredictable. Some days I just need to disappear into my own world — going for long walks in the woods or walks on the country roads around my home, spending time surfing the Web, working in the yard or my workshop, or just sleeping all afternoon on the weekends.

After years of trying to fix the problems, I’ve found that a better strategy is to concentrate on creating new and better experiences that eclipse the bad ones and to get my mind off my troubles. Yes, I’m in pain. Yes, I forget things. Yes, I often feel like I’m in damage-control-mode. But when I focus my attention on the good parts of my life, the troubles fade away and become part of the scenery, instead of the defining factors of my life.

My present recovery strategy is to enjoy myself as much as humanly possible. I go out of my way to slow down and really enjoy the life around me. I want to give my brain as much good to react to, as bad. I’m an expert in identifying problems that I can fix, and it gives me a lot of pleasure to fix them. At the same time, there’s more to life than constant problems. Being able to stop and enjoy an amazing day…just breathe deeply and soak it all in…really taste the food I’m eating…feel myself getting stronger when I work out in the mornings before work…and feel my body soaking up the water I drink after my workout is done. All those things are good for my spirit AND my brain. I figure the more good things I notice and dwell on, the more “wiring” for good I’m building in my brain.

Traumatic brain injury comes with a host of predicaments and issues that you’d never expect to come up in a regular life. If I’m going to have to deal with all of that, I might as well get to enjoy myself too. There’s a ton of stuff I cannot control in my life — but my attitude and my outlook are something I can control. So, I focus my energy there.

Granted, it doesn’t always work. It takes a lot of energy, and some days I just can’t manage the whole “positive” thing. So, I cut myself a break, make myself a nice steak dinner, watch a man-against-nature television show, and call it a day.

There’s always tomorrow.Broken Brain Brilliant Mind Gravatar dc1f49ad8493ea68c0c1c5e9b24d2e69

 

Thank you, Broken Brain – Brilliant Mind.

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

 

You can read more about Broken Brain – Brilliant Mind on his blog.

(Clip Art compliments of Bing.)

On the Air – Brain Injury Radio “Prisoner Without Bars” (segment 1)

On the Air – Brain Injury Radio

“Prisoner Without Bars” (segment 1)

by

Donna O’Donnell Figurski

 

images-1When I was asked to host my own radio show, my first reaction was disbelief, quickly followed by “Are you kidding?” Being a radio host is something I had never aspired to. It had never crossed my mind. I didn’t have the least idea of how to go about achieving a goal such as that.

I’ve never spoken in front of an adult audience, unless, of course, you count Back-To-School-Night audiences of parents who are dying to meet their child’s new teacher and see what their child will be doing for 6 hours each weekday while under my tutelage. My audiences were always 9 years old and under. They made up my “captive” audiences as I taught them to read, ‘rite, and do ‘rithmetic. (I admit some may have felt they were a “captured” audience.)

After I got over my first feeling of doubt, I let the idea tumble in my brain. I felt flattered, and the seed began to grow. “Why not?” I have a story to tell. I know a LOT about Traumatic Brain Injury (TBI). I had already written a book, “Prisoner Without Bars: Conquering Traumatic Brain Injury” (searching for a publisher) about David’s and my life living with his traumatic brain injury, and I write a blog dedicated totally to raising awareness of TBI and helping survivors and caregivers. So, I said, “YES!”

Then came the hours and days of preparation. Yes, I knew my story. It’s never far from my mind, but I wanted the show to be organized and cohesive. When the day of the show arrived, so did the butterflies that were doing a jitterbug in my stomach as the minutes clicked down the clock to showtime. “Your show will start in 5, 4, 3, 2, 1 second. You’re ‘On the Air.’” There was a second of dead air time before the Brain Injury Radio logo music began. Then there was no turning back…

“We lived a normal life…until we didn’t….”

I hope you’ll tune into my show the 1st and 3rd Monday evenings of every month. The show airs at 5:00p Pacific time and runs for 90 minutes.

See you “On the Air!”

 

(Clip Art compliments of Bing.)

On The Air – Brain Injury Radio Discrimination of TBI Survivors

On the Air

with

Donna O’Donnell Figurski and Julie Kintz

images-1With my first radio stint under my belt (my interview with Kim Justus on her show, “Recovery Now,”) I felt relieved. I’d made it through my first time on “live” radio. Now my new friend, Julie Kintz, another Brain Injury Radio Network host asked me to help her co-host a show. Her computer sound was not working properly and she didn’t want to not do a show.

Though I was nervous, I felt that it would allow me to familiarize myself with the studio and the studio hosting tools, and give me more practice on the air before I took the microphone myself. And . . .  I wanted to help a fellow host. So, I reluctantly agreed.

There were some glitches before the show. We expected to be interviewing a guest, but because communications got twisted, the guest never arrived. Julie and I had only minutes to decide what to do as the minutes ticked down to “On the Air” time. Since we’d planned to discuss discrimination of TBI survivors with the guest, we decided to pursue that topic as our discussion for the evening. I think it turned out well. What do you think.

You can listen here.

(Clip Art compliments of Bing.)

On the Air – Brain Injury Radio Donna’s Interview with Kim Justus

On the Air

with

Donna O’Donnell Figurski & Kim Justus

     (interview to tell David’s TBI story)

images-1I was surprised when I got a Private Message from one of the Brain Injury Radio Network hosts one evening while I was browsing through the many Traumatic Brain Injury sites that I belong to on Facebook. The host, Julie Kintz (“Quantum Leap”), asked if I’d be interested in becoming a BIR host too and referred me to Kim Justus, who is in charge of recruiting new hosts.

Of course, I was interested, but I wondered if I could even do something like this. I told David (my husband), and, surprisingly, he encouraged me. (He usually worries that I’ll take on too much.) I was glad for his encouragement, but I wasn’t convinced yet and threw the idea around with several close friends. They also gave me their “thumbs up.” I agreed to do it!

Then Kim invited me to be a guest on her show (“Recovery Now”) as a Traumatic Brain Injury caregiver. She wanted me to tell an abridged version of David’s and my story of our travels in the TBI maze.

I am featured in the first two hours of Kim’s three-hour show. You can listen by clicking the link below. So sit back, relax, and enjoy the show.

My show, “Another Fork in the Road,” will debut on Monday, August 4, 2014, at 5:00 pm Pacific time. It will air the 1st and 3rd Mondays of each month. On that show, I will tell a more complete version of our tale based on my book, “Prisoner Without Bars: Conquering Traumatic Brain Injury,” which is searching for a publisher. I hope to see you there.

Subsequent shows will feature interviews with TBI survivors and caregivers and offer brain injury resources and interviews with professionals in the field of TBI. There will also be discussions on current topics of interest.

(Clip Art compliments of Bing.)

Click here for a list of all “Another Fork in the Road” shows on the Brain Injury Radio Network.

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! . . . 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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