TBI – Survivors, Caregivers, Family, and Friends

Archive for April, 2014

Survivors SPEAK OUT! Julie


SPEAK OUT! – Julie

by

Donna O’Donnell Figurski

Julie Pre-TBI

This photo was taken on Julie’s 16th birthday – one month before her accident.

 

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

Julie

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

Atlantic Canada

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

 1995 (16 years old)

4. How did your TBI occur?

MVA (motor vehicle accident)

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

Right away

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

tracheotomy, G-peg)

ICU (intensive care unit)

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

Yes – 2 weeks or more.

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


Yes – pain clinic, chiropractor, acupuncture, physio, massage, meditation, etc.

How long were you in rehab?

It has become a part of life…Keep your body and mind healthy.

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

I have balance, perception, personality, and memory problems (to name a few).

There were physical, chronic pain, arthritic, and TMJ (temporomandibular joint)problems from the accident.

Epilepsy (grand mal and petit mal) formed 10 years later.

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

I was 16, so I don’t know how my life would have gone. I know I had a plan for myself, and the MVA changed it all.

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

Feeling normal

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

My family and trying to stay positive

13. What do you like least about your TBI?

It changed everything about me… but on the outside I still look the same.

14. Has anything helped you to accept your TBI?

 After almost 20 years, I suppose time made me accept it.

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

 I lost friends. I became extremely moody, very hateful, and difficult for a very long time. My parents split shortly afterward. The accident was just the last thing to tip things over the edge for them. Depression and anxiety ganged up on me, and everything piled up, feeding off one another, leading to an unhappy life for a very, very long time.

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

 You name it…

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

 My husband and I work together. He helps me with learning, any physical obstacles, during/after seizures, and over the past five years or so things seem to have improved in many ways.

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

 Working and enjoying life with my family

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

 No one knows what you are going through. No one knows how long it will last. Everyone has a different story. You are no less important than anyone else. You are still a person and still count.

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

 Don’t let yourself get depressed. That dark place will take you nowhere fast and can keep you for a long time.

Julie Post-TBI

More recent photo. Post-TBI

Write about your feelings, draw, paint, sing, do anything you can…but be sure to get your feelings out and make peace with life and how it has gone for you.

 

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.)

 

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.

Gabby Giffords & Mark Kelly: TED Interview

Gabby & Mark TED Intreview Apri 2014

 

 

When TED interviewer, Pat Richards, asked former Arizona Congresswoman, Gabrielle Giffords (who is recovering from a Traumatic Brain Injury caused by a gunshot wound to her head), if she wanted the “old” Gabby Giffords back or whether she was embracing the “new” version of herself, Gabby emphatically said, “The New One! … Better! Stronger! Tougher!”

Listen to the interview – “Gabby Giffords and Mark Kelly: Be passionate. Be courageous. Be your best.”

Gabby and Mark are working for a safer world. See Americans for Responsible Solutions.

(Photo compliments of TED.)

(Disclaimer: The views expressed are not necessarily mine.)

 

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Survivors SPEAK OUT! Len

SPEAK OUT! – Len

by

Donna O’Donnell Figurski

unknown

 

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

Len

2.    Where do you live? Email? (optional)

Georgetown, Ontario, Canada     tbi4life@live.ca

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

April 16, 2005      38 years old

4.    How did your TBI occur?

As VP of sales for a large Fortune 500 company, I was on a sales conference trip to Costa Rica. On the 2nd day, there was an organized team-building event – an ATV ride up the mountains. During the event, I hit the back of another rider and flew off into a cliff. I fell into an 8-foot-deep hole, and the ATV came and landed on me. Luckily for me, I did have a helmet on. I had no memory of the accident or anytime after for approximately 5 weeks.

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

When I came back to Canada, all the focus was on my back injury. (I shattered 5 vertebrae.) The doctors just kept telling me I was depressed, etc. … and I kept telling them I didn’t feel sad. They kept giving me meds, which I thought was the reason I was feeling so different. I went back to my job, but they kept reducing and changing my responsibilities. I suddenly felt so unbelievably lost in a world in which I was once very confident and successful.

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

Spinal fusion x 5
Induced coma

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

4 1/2 weeks – I think it was mostly induced because I kept trying to move and they were afraid I would do more damage to my spine.

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 was an Out-patient. Once I was finally diagnosed with MTBI, the nurse came to my house for over a year. However, I was still trying to work and in denial. Over time I was no longer able to work, and Out-patient services started coming again for about another year. I also saw a neuropsychologist, who I am presently seeing on a bi-weekly basis.

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

Everything! At least that’s how it feels – my short-term memory; I have a hard time communicating what I’m thinking; I misunderstand what people are saying to me; I get stuck on things; I really struggle making decisions; I lose my temper because I misunderstand what is happening (usually when things are happening fast or loud). Sometimes I seem to mix things up in my head, and then people have a hard time convincing me I’m wrong because I feel so strongly that I am right and that they are just trying to take advantage of me.

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

My life is completely different. I am not the person I was. Now after 9 years I have a hard time explaining how I am different because the old me seems like a dream.

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

I was a proud professional who my kids could look up to and people would listen to. I enjoyed my career and loved helping people become successful.

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

I have yet to discover anything I enjoy.

13. What do you like least about your TBI?

Lack of security and not being able to give the people around me a better life

14.  Has anything helped you to accept your TBI?

Yes. I was really struggling after I was told I had a TBI, so I googled and came across some videos, such as “You Look Great” by John Byler. Watching these helped me relate how I was feeling and helped me communicate this to my family. I then started the TBI4life twitter account mostly because it gave me somewhat of a purpose.

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

It has been very hard on my marriage. Luckily for me, it all happened around the same time…. I mean my wife was in the process of leaving right around the time I started to accept my TBI. It was that acceptance that I believe saved our marriage. By accepting, it enabled me to explain to her why I did the things I did – that I knew I was wrong but here’s what was going on in my head, etc. My wife is now my biggest supporter, and I love her with all my heart.

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

I no longer have a social life – big change considering we used to hold parties at our house all the time and would be constantly out at events, etc.

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

My wife is my main caregiver. It takes patience … lots of patience!

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

My plans are unknown.  I just want to feel as if I have some sort of purpose – a life.

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

The sooner you accept and understand this is a life-long journey, the sooner you can start to rebuild. NEVER underestimate the impact a TBI will have on your life.

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

I hope this helps others in some way, and a big THANK YOU for having the interest in our stories.

 

Thank you, Len, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

 

If you would like to be a part of this project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

 

TBI Tales: SPEAK OUT! . . . . . . . . . . . Mansion Dancing Under the Stars

mansion-at-westport

 

David and I met on the dance floor when I was 16 years old. He was 17. We fell in love under a strobe light. Through our married years, we danced at weddings and at parties, but when David’s Traumatic Brain Injury left his body as limp as Raggedy Andy, I never dreamed that David and I would ever dance again. But, during a recent trip to Westport, Massachusetts, to spend time with our son, Jared, his fiancé, Emily, and her family, we found ourselves staying in a mansion … only feet from the Atlantic Ocean. Our host, dancers-thSusan, was beyond gracious, concerned about our every comfort. On our second night there, she threw a big family party on her extensive patio and even more expansive grounds overlooking the ocean; and she invited us. We stopped in about midnight.

 

The partygoers were huddled around the fire-ring … music still blaring. Jared and Emily began to dance on the patio. I swayed. David sat in a tall patio chair. Then the unthinkable happened. David asked me to dance. I hadn’t expected that! David can barely walk – dancing had not been on his radar for more than seven years. I looked at him expectantly. Was he kidding, being facetious? ballroom_dancing_stars_swinging_lg_clrNo! With a huge grin, I answered, “Yes!”

 

We didn’t Cha-Cha or Swing, as we had learned in our Ballroom Dance classes. We didn’t attempt the Fox Trot, or even the Waltz, though Paula, our dance instructor after David had his TBI (another story), would have been proud of us if we had. But, we did our own dance. We swayed back and forth – never moving our feet. We call it the “TBI Sway.” We swayed with my head resting against David’s shoulder and his hand gently placed at the small of my back. We swayed with David holding on to me for dear life … for balance. We danced under the stars to an old favorite, “Unchained Melody” by The Righteous Brothers, with the sounds of ocean waves lapping the shore, with smiles on our lips, and remembrances of days gone by … and the promise of our days ahead.

dance under stars

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As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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(Clip Art compliments of Bing.)

(Photos compliments of ME.)

If you have a story to tell, please contact me at donnaodonnellfigurski@gmail.com

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.

 

Brain Injury Resources . . . . . . . . . . I’ll Carry the Fork

I'll Carry the Fork thI’ll Carry the Fork

by

Kara Swanson

 

Kara Swanson’s life was changed forever the day a minivan ran a red light and struck her car. This accident left Kara confused and frightened and with a Traumatic Brain Injury. Her TBI will impact her for the rest of her life. Kara’s book, “I’ll Carry the Fork” tells of the hardships that Kara endured as she struggled through her injury trying to regain her life. Kara approaches this serious topic with humor and hopes that her story will help other survivors and their families and friends understand the process of healing and recovering from a Traumatic Brain Injury.

You can learn more about Kara Swanson on her blog at Kara Swanson’s Brain Injury Blog.

 

As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

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If you like my blog, click the “Like” button under this post.

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(Clip Art compliments of Bing.)

 

SPEAK OUT! Guest Blogger * Lauren

                                 SPEAK OUT! Guest Blogger *Lauren*

Girl Blogger cartoon_picture_of_girl_writing

 

It’s been 18 months since I acquired my TBI and I want to give you an overview of those 18 months in this post. It’s of course impossible to include everything (that would take up a book!), but I hope that there’s something in what I write that resonates with you or comforts you or helps you understand what you or your loved one may be going through.

My journey started in October 2012 when I woke up in hospital. I had no idea why I was there or even where I was. It turns out I’d been in a medical coma for 4 days, which would explain my confusion about what day it was! I’d had a subdural bleed whilst I was playing roller derby. It happened very suddenly and I was rushed off to hospital. I’d had a craniotomy and I spent 9 days in hospital in total, which I believe is pretty quick for TBI admission. I just wanted to get home. I was bored in hospital and was utterly convinced everything was fine.

I got home and carried on as usual. I went for nights out. I travelled to see my family in England. (I had just moved to Belfast, Northern Ireland, at this point.) I figured all I’d need would be a few good nights sleep and I’d be OK again. This stage, which I now recognise as denial, lasted for about 8 months. I was in reality quite sick. I looked dreadful, but there was no way anyone could tell me that. I just didn’t believe it.

It was about 8 months post-op that things started to feel “not right.” I started feeling incredibly tired all the time. I was starting to get scared and anxious and avoiding people. I stopped leaving the house. Luckily, I have an excellent GP who I went to see, and he referred me to the Community Brain Injury Team, something that I didn’t even know existed. I was never told about this on discharge from hospital. Through the Brain Injury team, I got access to a neuropsychologist and an occupational therapist, as well as a physiotherapist, who would be a great help later in my journey. This set the scene for what was to become the hardest 10 months of my life so far. I became very low and depressed, very anxious and spent many days crying and wanting to not exist anymore. I had a stage where I didn’t get out of bed for a month. I couldn’t; I was scared of “out there.” Everything felt so overwhelming and hopeless I thought I would never get better. I got very bad health anxiety where I was convinced every sniffle and ache was cancer or some incurable disease. I was incredibly lost and alone. This didn’t just affect me; it affected my partner too, who lost his independent and busy girlfriend.

The thing with TBI is that it’s a traumatic event. You lose who you are; you completely disappear overnight. What I was experiencing was a grieving process. I was grieving the loss of my hopes, my health, and my beliefs about the world. That is a huge blow and takes a long time to process. I cannot adequately describe the rollercoaster that I have been through, but if you have experienced a TBI, you will know exactly what I’m talking about.

Where am I now 18 months later? Well, my energy is still not 100%, but it’s better than it was. I can stay up past 4 pm now! I am able to leave the house without my heart pounding and without my bursting into tears. I’m starting to think about reinventing my life again. I still get a little anxious at times. I still cry (not every day anymore), but the difference is now I can see that it’s OK to feel sad. It’s OK to cry. It’s OK to get angry, to be mad at the world sometimes because this is all part of the process and to truly heal you need to GO THROUGH these feelings. They hurt like heck and they can make your day a bit less fun, but if you don’t go to those dark places, when you feel them they will be suppressed and pop up another time. What else did I do to help myself? I read. A lot – books about trauma, grief, mindfulness, gratitude and neuroscience. I wanted to understand my enemy. I started to meditate daily; it gave me a place to calm the mind and just let those thoughts and feelings drift on by. I leant on my partner and family. I forced myself to face those fears about the scary outside. I now hope to study again. I want to learn to be a Counsellor or Psychologist and help others through trauma and grief.

TBI recovery is not a straight road. It goes backwards and forwards and up and down. You need heaps of patience and to learn to be kind to yourself. You have to know there will be slip-ups and stumbles, but remember the most important thing I tell myself nearly every day:

THIS IS NORMAL AND IT WILL PASS.Vandal, Lauren Blogger Photo IMG_20131024_132051

BIO:

Lauren is 37 and lives in Northern Ireland. She is currently finding her way back to the big wide world and writes about her TBI journey at Braingirl and Next Doors Cat.

 

Thank you, Lauren.

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

 

Brain Injury Resources . . . . . . . . . My Stroke of Insight: A Brain Scientist’s Personal Journey

My Stroke of Insight th

 

My Stroke of Insight: A Brain Scientist’s Personal Journey
by
Jill Bolte-Taylor, Ph.D

 

There are several books published about Traumatic Brain Injury (TBI). Of course there is Jill Bolte-Taylor’s book, “My Stroke of Insight: A Brain Scientist’s Personal Journey,” which is amazing. It took Jill nearly eight years to regain her near-normal self after suffering a stroke. She has been a speaker about this subject for TED talks. Her talk, called How It Feels to Have a Stroke, is worth every second of the nearly twenty minutes. Dr. Taylor is a neuroanatomist, a scientist, who studies the nervous system of the brain. Her book will help you to understand the differences between the right hemisphere and the left hemisphere of your brain.

 

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As I say after each post:

Feel free to leave a comment by clicking the blue words “Leave a Comment” below this post.

Please follow my blog. Click on “Follow Me Via eMail” on the right sidebar of your screen.

If you like my blog, click the “Like” button under this post.

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(Clip Art compliments of Bing.)

Survivors SPEAK OUT! Matthew Davis

SPEAK OUT! – Matthew Davis

by

Donna O’Donnell Figurski

Matt Alta

 

 

 

 

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

Matthew

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

Stamford, CT, USA

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

1996/97         age 25

4. How did your TBI occur?

skiing

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

CT scan

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

cranial surgery to pull out compression fracture and hold in place with small plates

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

no

 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?

out-patient,  2 months

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

mood issues – easily overwhelmed

irritability

attention span

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

just different

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

clarity of thought

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

being alive

 13. What do you like least about your TBI?  

not knowing what effects are from the TBI or age, etc.

 14. Has anything helped you to accept your TBI?

the book Brainlash 

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

have to be careful not to snap at people

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

not as much patience

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

wife (she is recent)

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

being a dad

holding a job

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

be patient; understand its normal to feel these things

 

Thank you, Matthew, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

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

If you would like to be a part of this project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

(Photo compliments of Matthew.)

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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