TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Brain Awareness’

Caregivers SPEAK OUT! . . . . Carol . . . (for her husband, Andy)

Caregivers SPEAK OUT!

Carol (caregiver for her husband, Andy)

presented by

Donna O’Donnell Figurski

 

Carol1. What is your name? (last name optional)

Carol

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

Toronto, Ontario, Canada

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

Andy is my spouse. He was 53. He was in a motorcycle accident on his way to work.th

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

I began care the day of the accident. I was in the hospital every day for eight to ten hours waiting for Andy to wake up. We finally came home after five months. I became his full-time caregiver, and I still am. I was 50; I just turned 52.

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 brain injury? If so, were you able to continue working?

Yes. I was working full-time, but I resigned after the accident.

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

We were lucky to have a full team of therapists. But, we had no support-workers because Andy felt that the people were invading his privacy.

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

Immediately. I was in the hospital every day to give my husband moral support and the healing effect of touch.

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

My husband’s coma was induced. I was in the ICU (intensive care unit) with him all day. Holding his hands. Playing his music.e799afda1f4dee4bd0c8c6e0606325b1

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 your survivor was getting therapy?

My husband was admitted to rehab for almost three months. It was exceptionally long. But, he was not in a position to benefit from all the therapies. He suffered from seizures, and the medication made him tired. He slept most of the days. I was at rehab with him all day. I tiptoed out for coffee breaks, but I didn’t go far.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

I help with Andy’s problems with gait, balance, cognitive functions, memory, and emotional lability (involuntary, sometimes inappropriate, emotional displays of mood, which are overly rapid and exaggerated). I take care of meals, finances, housekeeping, and Andy’s soiled beddings. After continuing physio three times a week, Andy found that his gait and balance improved. The problem with his urinary tract got better on its own. I still accompany him to all his therapy sessions because of his memory problem.

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

Life has become simpler. No running after unnecessary things. This gave me the chance to notice more, and I realized that there all lots of kind and helpful people around the community. Our roles changed – I have to deal with the house and finances.

13. What do you miss the most from pre-brain-injury life?hotel-clipart-transparent-background-4.png

We travel together two or three times a year. Andy was the one who used to plan and book the trips and accommodations. I miss him sharing his ideas about everything.

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

Being with him. Seeing the progress every day. Listening to his fears and seeing him happy.

15. What do you like least about brain injury?

A lot of people are not aware of TBI (traumatic brain injury). I myself never heard of it until my husband was diagnosed as having a TBI. It has drastically changed his life. I have to deal with all the house work and repairs. I have to make the final decisions.

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

Yes. Andy used to tell me that there are no regrets in life. Everything is done through our own decisions. We cannot say “What if … ?”No Excuses

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

Yes. My role is now changed. My two children and I miss Andy’s ideas, suggestions, and guidance.

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

Yes. I have become overprotective. I don’t want to leave my husband alone. My friends are all working, so not only is there no time to meet, but it’s also not easy for me to leave the house without him.

volunteers19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love to volunteer and help other people.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Be patient; time heals. It’s a learning process to both the survivor and the caregiver. And, it’s absolutely worthwhile! It changed my perspectives in life.

 

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SPEAK OUT! NewsBit . . . . . Blood Test Developed for Brain Injury

Blood Test Developed for Brain Injury

presented

by

Donna O’Donnell Figurski

 

th-1The Centers for Disease Control has reported that traumatic brain injury (TBI) accounts for more than 2.5 million visits to emergency rooms (ERs) in the US every year. Many people with a concussion do not even go to the ER because they have no symptoms and don’t believe that the ER can diagnose a brain injury if it’s not serious enough to be detected by a number of indirect tests. A CT (“cat”; computerized tomography) scan is usually ordered if a brain injury is suspected, but only 10% of CT scans detect a brain injury in people with a mild head injury.

thA quick, sensitive, and accurate blood test will soon be available for ERs EmergencyRoomto know if the brain has been injured. Some people will be negative. They will not need a CT scan and can go home with no worries. Others who are asymptomatic may actually discover that they’re positive for a brain injury. The ER doctor can then take appropriate action.

An objective blood test will be a game-changer for the treatment of TBIs. An obvious difference is that it will make many CT scans (and their radiation) unnecessary. On the other hand, people, especially those with a mild concussion, may discover they do have a brain injury and take appropriate steps. (Full story 1, 2)

 

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

SPEAK OUT! Itty-Bitty Giant Steps

presented by

Donna O’Donnell Figurski

 

Itty-Bitty GIant Steps for BlogSPEAK 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 neelyf@aol.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.

Lauren Ziaks

Lauren Ziaks – Brain Injury Survivor

Lauren Ziaks (survivor) … I faced a huge fear today. I wanted to hike a slot canyon, but I was scared of claustrophobia, dizziness/balance issues from recent re-injury, falling etc. But, with (a lot of) help, some positive talk, and a couple of tears of fear at a really steep part, I was able to do Zebra Slot Canyon!8f71e4d8a4fe5b982b90c51e430a75c5

Keep pushing yourself to face your fears and limitations, whatever they are for you. And, lean on those around you for help when you can.

 

 

YOU did it!

Congratulations to Lauren!

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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TBI Tales . . . . . . . . . . . . . . . . . . This Song Could Be a Caregiver’s Anthem

This Song Could Be a Caregiver’s Anthem

by

Donna O’Donnell Figurski

David & Donna Aunt Irene's Funeral 060718

 

I happened to hear this old hit song (“Lean on Me”) a couple of days ago. After listening to the lyrics, I realized it reflects what we caregivers do. We just want to help.

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We don’t look this bad.

As the song implies, we give much-needed help. “Lean on Me” could be our anthem. Give it a listen.

PS. I just had to dance with this man to that song and we each did a bit of “leaning on.”

 

(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 neelyf@aol.com. I will publish as many stories as I can.

As I say after each post:

Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

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Sneak Peeks for Prisoners

My book, Prisoners without Bars: A Caregiver’s Tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company. Here are pre-order links for Barnes & Noble and Amazon.

 

Excerpt 1

Chapter 1

Everything’s Blurry

presented by

Donna O’Donnell Figurski

… On January 13, 2005, David’s morning started much the same as it did each day. The only difference was that he delayed his rising by one hour. He planned to work at home that morning, preparing a talk about his

figurski-1

David Figurski, PhD – a few months before brain injury

research that he expected to deliver at Wesleyan University in Connecticut on Saturday. A long-time professor-friend was retiring from the faculty, and David was a featured speaker at his retirement symposium. It was an invitation and an honor that may have saved David’s life. …

 

Please leave a comment/question. I will respond.

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

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New NEWS: My Radio Interview about My Upcoming Book

New NEWS: My Radio Interview about My Upcoming Book

presented by

Donna O’Donnell Figurski

Jamie Crane-Mauzy 053118

Jamie Crane-Mauzy

 

On May 27, 2018, Jamie Crane-Mauzy, a host on the Brain Injury Radio Network, interviewed me about my upcoming book (Prisoners without Bars: A Caregiver’s Tale), which will be available to the public on November 1, 2018, but that can be pre-ordered now. The 80-minute show has been archived and can be listened to at any time.

Donna O’Donnell Figurski

Prisoners

Prisoners without Bars: A Caregiver’s Tale

 

 

 

 

 

 

 

 

 

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

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Survivors SPEAK OUT! . . . . . . . Carole Starr

Survivors SPEAK OUT! Carole Starr

presented

by

Donna O’Donnell Figurski

 

Carole Starr Survivor Speaker

Carole Starr – Brain Injury Survivor – Author of “To Root and to Rise”

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

Carole Starr

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

Maine, USA

3. On what date did you have your brain injury? At what age?

I had my brain injury on July 6, 1999. I was 32 years old.

4. How did your brain injury occur?

I was in a car accident. My vehicle was broadsided on the driver’s side by someone going about 50 mph.

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

My brain injury was diagnosed about six weeks after my accident. It was the physical therapist I saw for the whiplash who realized that I also had a brain injury. It became apparent to me when I tried to return to my regular life and struggled with tasks that used to be easy.

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

After my accident, I was transported by ambulance to the emergency room. They diagnosed me with severe whiplash and other soft tissue injury. The signs of the brain injury were there, but they were missed.

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

I was not in a coma.

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 didn’t receive any brain injury rehab until nearly a year after my injury. That was the worst year of my life, as I tried and failed numerous times to return to my old life. A physiatrist referred me to outpatient brain injury rehab. I’ve had physical, occupational, speech, and recreation therapies and counseling. I’ve also found help from alternative therapies, including cranial osteopathy, neuro-optometry, and homeopathy. I received rehab therapies on and off for several years. I still see several medical professionals, and I continue to make slow progress, even after more than eighteen years.

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

tired-womanI am plagued by extreme mental fatigue, sound and light sensitivities, balance issues, memory loss, visual midline shift, and difficulties with decision-making and problem-solving.

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

My life changed dramatically after my brain injury. I had to give up my teaching career and my classical music hobby. I struggled to manage everyday-life tasks. I felt dependent on family and friends. For many years, I grieved the loss of my old life. I hated the new me. It was a long process to work through that grief and start to build a new life. I try really hard not to judge whether my life is better or worse. It’s just different. That helps me with the acceptance process.

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

I miss performing as a musician. I miss being able to go a whole day without needing to rest. I miss being able to trust my brain to do what I want it to.

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

Brain injury gave me the passion for a cause that was missing in my old life. This has become my life’s work. I like being able to use my experience to help other brain injury survivors. I do that through my book (To Root & To Rise: Accepting Brain Injury), my keynotes at brain injury conferences, and the volunteer group I lead (Brain Injury Voices).

Carole Starr & Book To Root and to Rise

Carole Starr – Brain Injury Survivor

13. What do you like least about your brain injury?

I dislike having to rest every day and missing out on activities I’d like to do. I never know when too much sound, light, motion, talking, or thinking is going to overwhelm my brain and require hours or days of rest to recover from.

14. Has anything helped you to accept your brain injury?

For a long time, I didn’t think I could ever accept my brain injury. It was a long process. Some things that helped me were support-groups, reading books by other survivors, counseling, journaling, crafts, learning to laugh at myself, finding silver linings, and focusing on what I’m thankful for.

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

For a long time, I felt like I was a burden – the one who always needed help. I had to learn to accept help from my family and friends and not resist their advice. I can now manage taking care of my home, but everything requires strategies. 67-Help_me

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

My life is much smaller. My daily activities are short and quiet. If I want to do something bigger, I know that the price will be days on the couch recovering my mental energy.

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

I’ve been able to live on my own. Family, friends, and medical professionals have helped me learn strategies to take care of myself.

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

kids-hand-writing-clip-art-hand_with_pencil_5CI plan to continue writing and speaking about brain injury. I want to use my experience to make a difference. I’ve spoken at brain injury conferences and events in six states so far. I’d like to speak in all fifty! I’d also like to help other survivors create education/advocacy groups like Brain Injury Voices in other states.

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 survivors with your specific kind of brain injury.

Find an activity that the new you can enjoy and do successfully. Start small, find success and build on it. Over time, small successes can grow into large achievements and lead you in directions you never imagined.

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

Find ways to connect with other survivors – either through an in-person support-group or online. Interacting with others who “get it” is invaluable.

 

Know that progress doesn’t stop after the first year or two after brain injury. Our brains are always healing. We may never be able to return to our old lives, but we can continue to grow into this new one.

Please feel free to contact me, either through StarrSpeakerAuthor.com or BrainInjuryVoices.org.

Brain Injury Voices Logo

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

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

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