TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Brain Injury’

SPEAK OUT! NewsBit . . . . . . . . White House Concussion Summit

Newsboy thWhite House Concussion Summit

 

Parents, coaches, teachers, and others are becoming increasingly concerned that youth sports can affect children’s brains and in many cases cause life-altering injuries (see “Children’s Brains at Risk,” in my “So Whaddya Think?” category, May 28, 2014). To address this epidemic-like problem and to increase awareness of the hazards of concussions, President Obama held the Healthy Kids & Safe Sports Concussion Summit today. The President called for more research into the brain and in better equipment. Several organizations, both commercial and publically funded, have made commitments of money and effort to find a solution to this “invisible crisis.” The goal is a national plan that will cover all youth sports. (Story 1 with video, story 2, story 3, and the White House fact sheet)

 

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Survivors SPEAK OUT! Tabbie

 SPEAK OUT! – Tabbie

by

Donna O’Donnell Figurski

Tabbie Survivor MRI Photo 050215

Tabbie on her way into the MRI

 

 

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

Tabitha! But my friends and family call me Tabbie!

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

In the U.S!

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

I got my TBI back in September 2012, and I was 14 years old!

4. How did your TBI occur?

My TBI occurred during the warm-ups at an away volleyball game. A girl from the opposing team purposely served a ball at my face to get me out of the game.

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

My mom realized the next day, but she couldn’t take me to the doctor because it was a Saturday.

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

tracheotomy, G-peg)

I didn’t get any. The first doctor I saw said it wouldn’t be possible for me to get a concussion from a volleyball.

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

I don’t think so, but I don’t remember anything after I got hit until the next day.

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 saw a psychologist, but that’s it for any type of rehab!

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

Balance, dizziness, lightheadedness, constant severe headache/migraines, poor concentration and focus, noise/light sensitivity, tiredness, memory

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

It’s been a bit of both! It’s been mostly better right now, because I can do a bit more than I could since I got hit.

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

My way of exercising and learning/education

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

The people I’ve gotten to meet, the people I’ve gotten to help, and the fact they’ve allowed me into their life/journey!

13. What do you like least about your TBI?

The amount of extreme pain I’m always in

14. Has anything helped you to accept your TBI?

Yes! Prayer, acceptance of having a TBI, and forgiving the person who had caused all of this for me!

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

Yes. It’s hard to relay how I’m feeling to family, and I’m constantly tired.

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

It has in weird ways! My friends became distant when I was homebound, but I’ve also gained tons of support through social media.

17. Who is your main caregiver?

My parents

Do you understand what it takes to be a caregiver?

I think I do for the most part, but all I can say is “God bless them” because I know it’s hard on then too.

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

I just want to be able to reach out and inspire as many people as I can in awareness and happiness! I’m not sure what I’ll be doing in ten years honestly, but I know it’ll be something great!

19. What advice would you offer to other TBI survivors

Not to lose hope and to know that you’re not alone in this. It’s a bumpy journey, but what you’ll get from it and the people you’ll meet are worth it!

Tabbie

Tabbie – doing what she loves – playing volleyball

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

If you ever need someone to talk to, you can follow my twitter account: @brainyblondegal (https://twitter.com/brainyblondegal). I’m always here to help!

 

Thank you, Tabbie, 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 Tabbie.)

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.

SPEAK OUT! Guest Blogger Joel Goldstein

SPEAK OUT! Guest Blogger Joel Goldstein

What Veterans Need………….and Deserve

 

Boy Blogger thChristmas 2001 my wife and I were plunged into a parent’s worst nightmare – a car accident resulting in our teenager’s traumatic brain injury.  After a month long coma, he gradually emerged with severe and disabling cognitive, emotional and physical deficits.

Eight months of grueling hospital therapies and the school district agrees with the hospital – Bart is not ready to return to class and would be better served by placement in an institution. We railed against warehousing our 17-year-old son in a convalescent home and fought time and again to win Bart a chance to struggle, heal and progress.

We were determined to keep the bar up, set with difficult, but attainable, goals, and then raise the bar again and again. Who knows for sure how far anybody can go? It takes a little faith. These officials were not mean-spirited so much as driven by economics and statistical models of probable outcomes, without taking into account the character of the boy or his family.

We began exploring nonconventional therapies, cobbling together an unofficial “medical board” of trusted physicians. “Members” didn’t know each other or that they served on a “board.” If we found a promising therapy, we’d ask each of them whether it might do any harm. Some exciting approaches failed this Hippocratic test. Eventually we tried several therapies. Though harmless, some proved useless too. Others, including hyperbaric oxygen (HBOT), craniosachral therapy (CST), neurofeedback and high doses of Omega-3 fish oils, were remarkably successful, gradually transforming Bart’s life prospects. Successes were anecdotal, but a neuropsych exam several years after the accident reported that the examiner had hardly ever seen such improvement in someone so severely injured.

Today, with high school and even a semester of college under his belt, and a couple of years of cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own apartment. How different the outcome had we heeded the advice of well-meaning busy bureaucrats. Brain injury is far and away the leading cause of death and disability in young people. It leaves roughly 2% of the population permanently disabled, yet remains a stubbornly invisible epidemic. With the controversy surrounding concussions in sports and TBI, the signature injury of this generation of wounded warriors, that may be finally changing.

TBI will remain a tragic legacy of wars in Iraq and Afghanistan for a lifetime. According to the Woodruff Family Foundation Remind.org, there are 320,000 TBI survivors among combat veterans. Today the elements of the VA and DOD are experimenting with HBOT for severely wounded warriors. Sheer weight of numbers presents a unique opportunity to improve outcomes for survivors, military and civilian.

Like other nonconventional therapies that helped Bart, HBOT is relatively safe, inexpensive, easy to deploy and scalable. For the cost of a couple of F-16 fighters, one could outfit and staff 300 TBI treatment centers in existing VA and DOD facilities around the country. Technicians and therapists can be trained to deliver HBOT in months, not years; medics, corpsman, LPNs, and EMTs are all suitable candidates. As an alternative to setting up centers in VA facilities, one might issue vouchers directly to veterans’ families. Private clinics should spring up to meet the demand.

After wounded veterans have been treated, centers could migrate to the civilian sector, helping the wider fellowship of TBI survivors, most of whom have no access to these treatments. Thousands might leave nursing homes, cut back on their meds and live more fulfilling lives. Nothing we could do for so little could ease the suffering of so many.

Scientific proof is still the gold standard in medicine, but in its absence what risk is there in trying alternative therapies with well-established safety records? (Divers have safely used HBOT to prevent the “bends” for 200 years.) Of course, nothing is 100% safe and effective, not even aspirin or acetaminophen. In much of Europe, HBOT is already standard treatment for TBI. The obstacles to adoption here seem to be more bureaucratic – doctors, hospitals, the FDA and insurers have yet to sort out reimbursement protocols.

For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Best practices of conventional medicine only take us so far, often ending at the nursing home door or heavily medicated at home, facing long empty hours and overwhelming family resources. Survivors are already more susceptible to a number of conditions, including Alzheimer’s, Parkinson’s, suicide and subsequent TBIs. To do nothing – to ignore safe alternative therapies – is to make a decision fraught with risk. Faced with this existential dilemma, we chose to try for a better outcome. Military families of wounded heroes, who have already sacrificed so much, deserve no less.Joel Goldstein & Bart

 

Joel Goldstein, author of No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury, Potomac Books, has written about TBI for Exceptional Parent, Brainline.org, Adoption Today, and Military Special Needs Network. To learn more or to contact Joel: www.tbibook.com.513KpXRBWqL._SY344_BO1,204,203,200_

 

Thank you, Joel.

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

Caregivers SPEAK OUT! Shirl

SPEAK OUT! – Shirl

by

Donna O’Donnell Figurski

Shirl 35571_137366786279300_5704951_n

 

 

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


Shirl


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


Seville, OH, USA       mstrow7@gmail.com

3.    What caused your survivor’s TBI?


Car accident – July 24, 2010

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

I began Sept. 2010.
Yes. I am the main caregiver.
I began care at age 48.

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

No

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

Somewhat. I just had a paper route. No, I was not able to continue.

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

No

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

Immediately

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

He wasn’t in a coma, but he didn’t respond for 15 days. I visited every day, played music, and talked to him.

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

Yes. He had 4 weeks of In-patient rehab. He had Out-patient rehab for physical therapy and speech therapy.

How long was the rehab?

Several weeks.

Where were you when this was happening?

I was at home. I visited him and then brought him to out-patient rehab.

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

Short-term memory loss

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

I guess it’s both. It has been the hardest thing I’ve gone through, yet it has taught me a lot.

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

Fun times with my husband

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

Time to relax a little

15.     What do you like least about TBI?

What it does to the family. Personalities changed – anger, pain

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

Finding support groups on Facebook
Seeing there are others in the same place as us

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

Yes. There were trust issues for a while – misunderstandings. Our children didn’t understand why their dad acted the way he did.

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

Somewhat. I don’t do much with friends.

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

Not sure. Would like to travel with my husband, but probably won’t have the money since have to work all the time and there isn’t enough.

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

Go to a neuropsychologist for counseling if needed. Or, go to someone for counseling. Find support groups. Read as much as you can to learn about TBI. Try to understand your survivor and be compassionate.

 

Thank you, Shirl, 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 Shirl.)

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

 

Caregivers SPEAK OUT! . . . . . . . . . . Donna O’Donnell Figurski

Image 2

SPEAK OUT! – Donna O’Donnell Figurski

by

Donna O’Donnell Figurski

 

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

Donna O’Donnell Figurski

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

Arizona, USA     donnaodonnellfigurski@gmail.com

3. What caused your survivor’s TBI?

My husband, David, was exercising before going to work. He usually did 12 chin-ups. That morning he did 13. DRAT!

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

David had surgery for a subarachnoid hemorrhage on January 13, 2005. That was followed by another surgery for the removal of an aneurysm, and yet another surgery to remove an Arterio-Venous Malformation. Thursday the 13th was our “unlucky” day (not Friday the 13th). Thursday the 13th was the day that the title “caregiver” was bestowed upon me. I was 56 years old when I became David’s main caregiver.

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

No. Both of our children were grown and living across the country. (But, of course, you always worry about your children no matter how old they are.)

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

I was employed. I was a first-grade teacher. I called for a substitute from the ambulance and was not able to return to work for three and a half months. After David was released from the rehab hospital and settled into home life again with our support system in place, I returned to my six- and seven-year-old munchkins.

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

Initially, family and friends surrounded us, but within a few short weeks they needed to return to their own lives. When, two and a half months later, David returned home from the rehabilitation hospital, I invited some friends to live with us. I am so grateful for their help. David was unable to be left alone, even for a short time. He was completely incapacitated. Makes you wonder how he was released from the hospital! I could not have returned to work without the assistance. I had the help for about a year.

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

My care for David began the moment he stumbled into our bedroom with his head filling with blood, through both his hospital and his rehabilitation stays, and when he returned home two and a half months later.

Though now, nine+ years later, he is independent in many ways, I remain his caregiver for many activities. He is unable to leave our home unassisted. I am his private chauffeur and “chief cook and bottle washer.” But … he does the laundry!

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

Yes. He fell into coma before he was placed into the ambulance. Though he struggled for consciousness after each of his three surgeries, he remained in coma for nearly two weeks.

While he slept the sleep of the ignorant, I read to him, played music – our old favorites (The Righteous Brothers), gave him arm and leg massages to stimulate his muscles, provided constant chatter, tried to communicate through hand squeezes (right hand squeeze = yes; left hand = no), provided the doctors with daily information since I was constantly with him, and I begged David to come back to me.

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

David did extensive rehab. Almost four weeks from the initial event, David was transferred to an acute facility, where he worked with physical, occupational, speech, and ADL therapists for three hours/day. I spent about fourteen hours each day cheering him on. After release from the rehabilitation hospital, he continued as an out-patient. When I returned to work, our friends took him. When David returned to his laboratory, he continued his therapy with a physical therapist for two hours/week. I wasn’t there for those sessions. He continued that therapy from 2006 until 2013, when he retired from Columbia University.

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

Imagine a newborn babe. David required constant care, even when asleep. He needed to learn to eat, dress, and care for hygiene. He couldn’t walk and had to be transported via wheelchair. He had a feeding port in his stomach, and I had to not only feed him through the port, but also play nurse and clean and dress the wound. Any ingested food was mashed or finely chopped. I applied medication to his eyes and patched one for sleeping each night, and I kept track of and doled out about fifteen medications throughout the day.

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

For the first year and a half, David could never be left alone. Not only was his independence impacted, so was mine. I thought I’d lose my mind. I went to work, did errands, and was home every other minute. That was difficult. I was responsible for David’s household duties, the bills (of which I was ignorant), his many errands, and … the trash (the worst Green Smiley). Nine+ years later, life isn’t better; it’s different. It’s easier than the first five years, but it’s much more difficult than pre-TBI. Would I turn back the clock to pre-TBI time? YES! Definitely!

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

Everything! But mostly I miss David’s being able to drive. (I hate being the primary driver.) I miss his being the man-in-charge too. Though recently he started to take over many of the business duties of running a house, which is a complete relief to me. I miss his coming home after a long day at lab and hugging me – happy to see me. I miss his running down the stairs in his running shorts and shoes and watching him from the window as he headed down the street for an eight-mile run. It’s the simple things I miss.

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

David seems more relaxed. His position as Professor at Columbia University was very demanding of his time and energy. He gave it his all. He has become more social, and we have many dear friends who he would not have had time to know pre-TBI.

I love working together on trying to publish my book, “Prisoner Without Bars: Conquering Traumatic Brain Injury” and promoting brain injury awareness through my blog (Surviving Traumatic Brain Injury).

15. What do you like least about TBI?

I love to travel. I had hoped in retirement that we would travel the world together. It’s obvious now that that won’t happen. Air travel is challenging at best. David’s lack of balance is the biggest culprit, making it difficult for him to maneuver in the outside world. He is also unable to drive a car. Since I am not fond of driving (he was), this also curbs our over-the-land ventures far from home. Ultimately, it’s the limits that TBI puts on our lives that I dislike the most.

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

I am just so grateful that David is still with me. I have cheered him every step of the way. David’s positive attitude, his endless work and exercise to improve his condition, and his own acceptance have been a great help to me. The internet is a wonderful source of knowledge about TBI. And books! I’ve read tons of books to understand more about TBI and how others deal with it. Below is a list of some not to miss. You can find more on my blog.

Books not to miss:

“In an Instant: A Family’s Journey of Love and Healing” by Lee and Bob Woodruff

“Gabby: A Story of Courage and Hope” by Gabrielle Giffords and Mark Kelly

“I Forgot to Remember” by Su Meck

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

I told every surgeon to give him back to me. I didn’t care how. I got my wish. Though from operating room to recovery room, they made a slight switch. David looked similar to his pre-TBI self, but he had changed. Sometimes I don’t know this new David. That’s not bad – I like this new guy too. It’s just that I miss the pre-TBI David – the boy I met when I was 16 and the man I married at 20 and had children with. I feel like I am having an affair – and it’s legal!

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

In the beginning, yes, my/our social life was greatly diminished. Pre-TBI David and I enjoyed Friday and Saturday date nights – dinners/movies. That became impossible when David could no longer move on his own or eat by himself. Occasionally friends visited. Eventually David regained his social skills, and, because he is more relaxed, he enjoys people more. Now we go out with friends or entertain at home, and we’ve reinstated our Friday date night.

I pursue many out-of-house activities, such as attending my writing groups, reading my work at open mics, lunching with friends, and acting and directing in the theater.

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

I hope to continue my work of bringing awareness to TBI through this blog and of being active on internet brain injury support groups. I want to share TBI Survivor and Caregiver stories with my readers.

It’s my dream that my book, “Prisoner Without Bars: Conquering Traumatic Brain Injury,” about my husband, David, will soon be published and in the hands of those who will find knowledge, hope, inspiration, and solace in our story.

I hope that David will continue to improve, no matter how slowly, and someday be able to run the marathon that he had always dreamed of.

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

Read tons of books.

Surf the internet for information.

Keep a positive attitude. I know, that one is hard. (I never let David see me cry. I was afraid it would scare him.)

Join a support group – in real life or on online site(s).

Take care of yourself. Remember the safety demonstration spiel on every flight. “If the oxygen pressure drops, place the oxygen mask over your face, then help any traveling companions who may need assistance.” You first! Take care of yourself! When your survivor had a TBI, your “oxygen pressure” dropped. PUT ON YOUR MASK!

Never give up!

david-donna-april-21,-2006

Donna & David July 2005 6 months post-TBI

 

(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 Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Photos compliments of ME.)

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uniquely hand-crafted jewelry by donna

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