TBI – Survivors, Caregivers, Family, and Friends

Archive for September, 2014

Survivors SPEAK OUT! . . . . . . . . . . Lisa Parker McGreggor

SPEAK OUT! – Lisa Parker McGreggor

by

Donna O’Donnell Figurski

McGreggor, Lisa Parker1. What is your name? (last name optional)

Lisa Parker McGreggor

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

Tampa Bay, Florida, USA    parkermcgreggor@yahoo.com

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

July 24, 2000     I was 15 – only two weeks shy of 16.

4. How did your TBI occur?

Car accident

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

When I didn’t get up at the scene

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

I had a G (gastrostomy) peg (feeding tube). My spleen was removed.

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

Yes. I was in a coma for three months.

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

Yes. I had rehab at the hospital for six months. Afterwards, I was still going, but insurance would only pay every three months.

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

I have a problem with my balance. My mood is an issue. My right arm is drawn up.

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

My life may be better, but it’s lonelier.

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

My freedom

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

Food

13. What do you like least about your TBI?

The fact that it exists

14. Has anything helped you to accept your TBI?

Reality

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

Yes. It made me reliant on my parents. I hardly ever go out, so I don’t have a boyfriend.

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

Most of my friends left.

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

My mom is my main caregiver. Yes, I understand what it takes.

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

I don’t have any plans.

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.

You can never “quit.”

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

Be strong.

Enjoy the ride. Life is shorter than you think!McGreggor, Lisa Parker 2

Thank you, Lisa, 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 Lisa.)

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.

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Caregivers SPEAK OUT! . . . . . Trisha

SPEAK OUT! – Trisha

by

Donna O’Donnell Figurski

 

Trisha

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

Trisha

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

Rural western Oklahoma, USA

3. What is the TBI survivor’s relationship to you? How old was the survivor when he/she had the TBI? What caused your survivor’s TBI?

My son fell asleep while driving to work. The pickup left the roadway and rolled several times, and he was thrown through the window. It was ten days after his 20th birthday.

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

I began immediately – the morning of November 3, 2011 – as soon as I got the phone call from the Highway Patrol telling us what had happened and that my son was being medevacked to a hospital in Oklahoma City. I called my husband; he left work, and we headed that way. I stayed in Oklahoma City the entire four months. I am still his main caregiver, but my husband, my son’s girlfriend, and my other sons help.

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

I had two younger sons, ages 16 and 11, at home. (They’re still at home.) My stepdaughter, her husband, and their four children had just moved in with us about three weeks before the wreck. They moved out about three weeks after we came home from the hospitals. And I was about six months pregnant.

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

I was running my own photography business, and I still am.

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

Every church, countless people in our area, and family not only prayed, but also made it financially possible for me and my sister to stay in Oklahoma City the entire time my son was in the hospitals and also for my husband to be there whenever he had time off work. My husband’s bosses also were also able to get him extra time when it first happened, so he was able to stay for several weeks before he had to go back to work.

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

Immediately, at all the hospitals

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

Yes. My son was in an induced coma. We stayed by his side and prayed, until they’d make us leave at night. Then we’d be right back in the morning.

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when this was happening?

My son was at Oklahoma University Medical Center first. Then he went to Select Specialty Hospital for a few weeks. From there, he was at Valir Rehabilitation Hospital from the middle of December until we came home in February. He had about 8 weeks of therapy at Elk City Hospital as an outpatient after we came home. Since then, we’ve continued doing therapy ourselves at home. I was with him the entire time, except at night, when we’d go to the motel.

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

Trisha's Son after TBI

Trisha’s Son after TBI

My son suffers from short-term memory problems, lack of balance and coordination, problems with fine-motor skills, and incontinence. One of our biggest battles has been depression. He is in a wheelchair, but he is able to use a walker for short periods of time.

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

Everything is pretty much centered around my son. He can be home alone, but only for a couple hours at a time. If I have to leave, I need to make sure either someone else is here or will be here.

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

The active and outdoor lifestyle we had

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

This is actually a difficult question to answer. Post-TBI for us is also the start of our daughter’s life. She was born one week after my son and I got home from Valir.

15. What do you like least about TBI?

Even though it is going on three years, there are still times that I feel like it’s a bad dream, and I’m waiting to wake up. I’m distressed by the fact that my son had a ton of friends before, and now he will go weeks, sometimes months, at a time without seeing or hearing from any of them.

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

I honestly don’t know if I have actually accepted it yet. To me, acceptance pretty much means we give up, and he hasn’t given up. In fact, this week, for the first time ever, he has walked on a treadmill. For the first time since the day before his wreck, I saw him make full strides with both feet! He didn’t do his normal “step with one foot, catch up with the other” like he does when he uses his walker.

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

Yes. We had to remodel one of our bathrooms to make it accessible for a wheelchair. His younger brothers help out with some of his needs.

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

My son and I both have friends who no longer come around. People, including his own grandfather, get upset with us because he refuses to go to their houses. Yet, their homes don’t have access for a wheelchair – let alone have a bathroom that he could get into if needed.

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

I take things day-by-day, with a lot of prayers going up.

Trisha's Son before TBI

Trisha’s Son before TBI

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

Fight for answers from all doctors or “teams.” Insist on seeing each one. When the accident first happened, my son had “teams” of doctors for his different injuries. We never saw the neurology team. They always came through before we were allowed into his room. His brain injury was made out to us like it was a secondary injury – not that bad. In reality, it was his worst injury, but that’s not what we were told.

 

Thank you, Trisha, 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 Trisha.)

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

Survivors SPEAK OUT! Luke R. Hostetler

SPEAK OUT! – Luke R. Hostetler

by

Donna O’Donnell Figurski

 

Use This Hostetler, Luke

Luke R. Hostetler

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

Luke R. Hostetler

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

Woodburn, Indiana, USA     Lrhostetler@gmail.com

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

September 10, 2010     Age 26

4. How did your TBI occur?

I fell down stairs.

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

Friends looked for me when they realized I was absent from the party for too long. The doctors diagnosed the TBI!

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

I had a tracheotomy, and a feeding tube was inserted. My jaw was wired shut. 😦

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

I think I was, but I don’t think it was for an extended period of time.

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

I had rehab (occupational therapy, physical therapy, and speech therapy – maybe others), both as an inpatient and an outpatient. Rehab was maybe two years?

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

My right optic nerve is damaged. I have a problem with short-term memory. 😦

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

I’ve met many new people, so that’s a very good thing!

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

I miss my occupation and driving!

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

A new friend whom I met because of my TBI. 🙂

13. What do you like least about your TBI?

My short-term-memory is junk. 😦

14. Has anything helped you to accept your TBI?

My new friend. She also has a TBI!

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

Home life: At 30 years old, I still live with my mom, and I depend on others for most everyday activities.

Relationships: I’ve made countless new friends. That’s ALL GOOD. 🙂

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

I am much more of a social being.

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

My Loving Mother, Vicki Rose Hostetler, is my caregiver. I know and understand it’s hard work, and I appreciate that!

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

I hope to be able to live independently. I’d like to have had found the love of my life!

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.

Patience is a virtue!

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

Live your life in stride. Good things come to those who wait. God has a perfect plan. 🙂

Hostetler with Muskie 10639383_10204875651152455_5899253425922197294_n

Luke R. Hostetler & Muskie

 

Thank you, Luke, 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 Luke.)

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.

 

Brain Injury Resources “You Disappear”

“You Disappear” by Christian Jungersen

(Insight Into the World of Brain Damage)

reviewed by

Donna O’Donnell Figurski

"You_Disappear"_Jungersen-205x300

You Disappear by Christian Jungersen

As anyone who has had a brain injury and his or her caregiver know, life is forever altered. It will never be the same. Christian Jungersen takes his readers on the twisted journey of Frederick, a headmaster at a prestigious school; Mia, his wife and a reputable schoolteacher; and their teenage son, Niklas. Unlike many brain injuries that occur by an impact, an accident, or a hemorrhage, Frederick’s brain “injury” evolved over time, changing his personality bit by bit. Mia slowly noticed inexplicable changes in her husband. Talking too loud and eating too much were just two of the little signs that were manifested as Frederick’s brain changed. While on a vacation in Majorca, Frederick drove unusually erratically and dangerously. His driving caused their rental car to scrape a stone cliff. When Frederick, in a crazed state, jumped from the car, fell down a hillside, and woke in the local hospital, he was forced to seek help, and the mystery of his strange behavior is unveiled.

Once Frederick is diagnosed with a slow-growing brain tumor, his aberrant behavior becomes more understandable, but not excusable. As is the case for many brain-injured persons, Frederick’s behavior hampered his decision–making process. Frederick illegally took large sums of money from his school, causing the school to become bankrupt and Frederick to lose the respect and friendship of many people, including his chairman and close friend, Laust. Eventually Frederick, while seeking help, loses his job and faces a possible prison sentence.

Mia fondly remembers the years before the change in Frederick. She remembers the love they shared. She does what she can to help him, but his deviant and erratic behavior makes living with him difficult. Finally, Mia seeks help and companionship with a local brain-injury support group, where she meets Bernard, who not only becomes Frederick’s attorney, but also a “special” friend to Mia.

As Christian Jungersen so aptly states, “As any family member of someone with brain damage knows, the hard part isn’t the initial shock. The hard part comes when the adrenalin recedes and you have to set out down the endless gray corridor of disheartening days, days that look like they’ll last the rest of your life.”

As the caregiver for my husband, who has a traumatic brain injury, I understand Jungersen’s words completely. The adrenalin gets you through the early surgeries and the beginning days in the hospital. It may even carry you through the weeks in the rehabilitation facility. But the adrenalin-rush ends, and “real life” sets in when the caregiver brings the survivor home. That’s when the realization occurs that life will never be the same as it was. The survivor will never be the same as before, and neither will the caregiver. Brain damage has a way of changing the normal. That’s when the survivor and caregiver realize that the journey through the brain-damage maze has just started. They eventually realize that it has no end. Once brain damage comes to stay, it can tear families apart. But, it can also make families stronger, as they pull together to overcome the trials of brain injury.

In “You Disappear,” Jungersen portrays how one family finds their world breaking up. Will they find enough glue to repair it?

 

Jungersen 2

Christian Jungersen

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

SPEAK OUT! 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.

(Though we’ve only two contributors, their accomplishments are great.)

DuWayne Hall…I got a job! My baby step this week is working for a non-profit organization that works with TBI survivors.

Carmen Gaarder Kumm…A giant step. I taught high-school Spanish for 23 years, but I had to resign because I couldn’t do it post accident. Tuesday I taught 20 adults how to tell their name, age, and condition and how to count to 100. I can hardly wait until next week.

DuWayne Hall…I’ve just been offered another job! It provides a paid apartment, full salary, and profit sharing. And that is in addition to the job I was offered on Monday, in which I would be working with military survivors who have PTSD (post-traumatic stress disorder)! Wow! Life is funny and God is Great!

YOU did it!

Congratulations to all contributors!

(Clip Art compliments of Bing.)

TBI Tales: Can Music Rewire Brain?

Playing a Mandolin

 by

 Richard Johnson

(presented by Donna O’Donnell Figurski)

 

mandolin-for-gloggtserMy traumatic brain injury took place in October 2003. I did survive (fortunately), but one of the main side effects from my injury is short-term memory loss.

Years ago, I was in a local coffee shop drinking a cup of coffee and thinking – not “Why me? Why me?” but “What can I do to help my short-term memory loss?” The coffee shop had two people playing guitars. One person put down his guitar and picked up a mandolin. They then played three of my favorite songs. What they triggered was like a bolt of lightning had gone through me! I knew right away that learning how to play an instrument, how to read sheet music, and, most importantly, remembering what I just practiced would be the best memory therapy in the world.

When the musicians took a break, I asked about the mandolin. I told the mandolin-player that I had never played any instrument before. I asked if I could chord with less than four fingers (I only have about two-and-a-half usable fingers), and on and on we talked. He showed me a couple of mandolin chords and said to search on Google for two-finger mandolin chords. He told me to buy a beginner’s mandolin to start and to have fun. And that’s exactly what I did. I bought a good-enough beginner’s mandolin from a friend of a friend, found a great local music store that gives mandolin lessons, bought a couple of books and DVD’s, and started playing.

Well, it’s been a few years now, and I play at least one hour every day. It seems to take a month to learn a song. I’m taking the old “practice, practice, practice” route. I’m able to remember and play (most of) those songs without reading the sheet music. If I haven’t played one of those songs in a couple of weeks, I may need to read the sheet music to remember a measure or two.

I wake up in the morning thinking about the songs I practiced and played the day before. I think about the songs I will practice and play that day by “singing” the songs in my head (not the lyrics, but how they’re fretted and picked). When I’m playing, I’m in a whole different world, and the daily toils just slide away.  I’m sure I could refer to my playing-time as “therapy,” but, for me, it’s pure bliss.

In short, playing a musical instrument is one of the main keys I have gained for rewiring my brain. I truly think that beginning and learning a new hobby or new skill is very important, as it makes us think, think, and think. I also believe that playing music, any type of music, all the time helps my brain find those broken nodes and, with its neuroplasticity, “fixes” them. And most importantly, my short-term memory problem is less and less pronounced. Sure, I can still forget what I had for lunch an hour after eating it, but I can bring that memory back a few seconds later. I can still forget who called me earlier today or why, but again it’s easier to make that connection again.

I would like to continue talking, but my mandolin is calling me.

(Richard Johnson’s experience is an excellent example of something I thought might be true – using the playing of a musical instrument to stimulate the brain and thereby help heal an injured brain.)

 

RJohnson-PortraitThank you, Richard, for sharing your story in TBI Tales. I hope that your experience will offer inspiration to my readers.

(Disclaimer: The views or opinions in this post are solely that of the author.)

 

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at donnaodonnellfigurski@gmail.com. I will publish as many stories as I can.

(Pictures compliments of Richard.)

(Clip Art compliments of Bing.)

 

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On the Air . . . . . . . . . . . . . . . . . . . Brain Injury Radio “Prisoner Without Bars” (segment 3 & epilogue)

On the Air – Brain Injury Radio

“Prisoner Without Bars” (segment 3 & epilogue)

 

images-1

The red light in the studio is blinking. A voice from nowhere says, “Your show will start in 5, 4, 3, 2, 1 second. ‘You’re On the Air.’” Then a second of dead air occurs before the Brain Injury Radio logo music plays. There’s no turning back…

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

In this third and last part of “Prisoner Without Bars: Conquering Traumatic Brain Injury,” I completed my husband David’s and my journey through the first year-and-a-half of our new life in this TBI maze. I also included an epilogue, which brings the story to current time.

I tell stories of how David loved the barium-dipped cookies during the fluoroscopy test to determine his swallowing ability – or lack of it. I tell how David insisted on having “dessert first” before all meals, of my crash course in Nursing 101, 102, and 103 before David was released to my custody – all too soon – from the rehabilitation hospital, and how he was honored as the keynote speaker at a scientific symposium in Colorado to present his research. I talked about David’s transition to home after rehab and eventually his return to his laboratory at Columbia University. The story goes on and on, as does life. There’s never a dull moment when living with TBI.

I hope you’ll tune in to my show, “Another Fork in the Road,” which airs the 1st and 3rd Sunday evenings of every month. The show starts at 5:00p Pacific Time and runs for 90 minutes. On the 2nd and 4th Sundays at 5:00p Pacific Time, Julie Kintz hosts “Quantum Leap.” When there is a fifth Sunday in a month, Julie and I will team up to cohost a show called “Another Quantum Leap in the Road.”

“See you “On the Air!”

Click on the bar below to hear this radio show.

(Clip Art compliments of Bing.)

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