TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Brain Injury’

Survivors SPEAK OUT! Laura Miller

Survivors SPEAK OUT!

presented by

Laura Miller – Brain Injury Survivor

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

Laura

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

London, Ontario, Canada     brainsageyoga@gmail.com 

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

My first motor vehicle accident that caused a TBI (traumatic brain injury) with memory loss was June 5, 2002. I was 28. 

4. How did your brain injury occur?

I was rear-ended while I was stopped at a red light. I woke up to people around me and looking at me. They didn’t help whatsoever. My vehicle was seized, and I was very unsure of everything. At first, I didn’t even know I had had an accident. I didn’t know anything about my personals, like phone numbers, etc. All I saw when I tried to think was blackness. I was so cognitively impaired that finding the right words was very difficult. I didn’t know what my past was. I had no awareness or memories of events in my life, my child, or my child’s father.

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

At work, the customers noticed. It was thought that time off would help. But I went to the doctors a few weeks later. I thought I was concussed. It wasn’t my first concussion, so I thought it would get better. But I wasn’t getting better. The concussion was responsible for humiliating incontinence at night. I incorrectly thought I could handle the headaches, the noise, not understanding the concept of time, and the daily forgetting to do my pre-TBI mom and wife duties. I had a high-volume job with a multi-million-dollar company, but I had no memory of how to conduct my managerial duties. Unfortunately, in the grief of my confusion, I resigned. To this day, I consider that to be one of the worst mistakes of my life. All because of my accident and the brain injury.

The doctor then set up MRIs (magnetic resonance images), CAT (computerized tomography) scans, and a few other appointments, and I found a lawyer as well. The lawyer set up neuropsychology testing. In the year following my accident, a diagnosis was made. I had a moderate traumatic brain injury (whiplash 3) with amnesia. I couldn’t remember how long the doctor had said it might take me to “heal” to my pre-TBI state. The neuropsychologist highly doubted I would ever return to my pre-TBI level of function. He said that, in his expert opinion, my brain injury was catastrophic and permanent. 

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

I had no emergency treatment. I should have had first responders immediately, but I didn’t for some reason. But a legal case was set up soon after the accident. The lawyer had me take tests, and several people were involved: a nurse case manager, a rehabilitation therapist, and a physiotherapist. Therapy was scheduled for my neck and shoulder and for speech. (My stutter was pretty bad, and, when my breathing got in the way of thinking, the stutter would get worse. I would start crying when my breath stopped from the panic of having no thoughts. My neck injury meant that my tongue couldn’t lift properly to pronounce certain words.) My personal research indicated that I may have a neurological hairline fracture, which can affect several parts of the brain. If so, it could explain my symptoms. Also, I had already had a pre-existing severe frontal lobe concussion when I was a child. I and others thought that this may have been responsible for my learning difficulties – not the learning disability I was diagnosed with. But my new injuries in 2002 stopped my learning dramatically. My TBI made a mess of my life. Like many other survivors, I had to do combat with my insurance company.

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

No

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 occupational therapy, a rehabilitation therapist, speech therapy, counselling, physio, massage, chiro, and gym. I had a team of about ten individuals. I feel to this day my therapy was very well organized. 

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

I had many difficulties with balance and my gait at first. I had throbbing headaches. 

Smells would make me vomit. My heart felt like it was going to jump out of my chest. I had no sense of direction, and I was completely unorganized. I couldn’t lift my right leg fully to get into the tub or to walk, so I had assistants for the first few years. I slept in a chair for almost three years because I couldn’t sit up or roll out of bed.

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

From 2002 to 2005, I had an additional three accidents, with a pregnancy loss in one of them. My marriage broke up. (I was married for ten years, but I had no memories of this marriage.) I was diagnosed as having clinical depression, and I was extremely suicidal. The medications helped neither. So, needless to say, my life got worse.

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

I don’t know. I have no clear memories.

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

I started having a better view of life with in-depth yoga. I also used my free time from being unable to work to see if maybe in the future I could become a teacher and be an inspiration to others in the brain injury and mental health communities. Yoga has the ability to calm the autonomic nervous-response system; calm the vagus nerve, which transmits information from the surface of the brain to tissues and organs elsewhere in the body; and chill out PTSD (post-traumatic stress disorder) and anxiety. (My anxiety was always heightened, but with my rehabilitation therapy of thought process, yoga, and meditation, my anxiety is now probably 50% controllable most days.)

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

I dislike the grief. The grief of all my losses is still pretty hard for me.

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

Not really, but I am doing work to try and accept my brain injury. My child is super-supportive and has been guiding me to be independent and to try a new way of life. I do yoga. I am going to neurology school. I now see that I am worthy of something in life. I work on acceptance multiple times a day.

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

Yes! My daughter and I still have struggles. She was under 10 when I was injured, and she had no true support other than her dad. I am thankful he was a good dad for her. Looking at her with no memory is a heartbreaking lens to deal with. As for romance, I haven’t had a real relationship since my divorce. I haven’t been in the right frame of mind. One day I hope the universe will align with my life and help me find true love.

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

I don’t do much socially, mostly because of my PTSD and my financial situation. I’m integrating my yoga life into volunteer work.

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

My daughter helps me and assists me with the big decisions. I also have about five other family members who keep regular contact. Even though it’s difficult, they will help if needed. But it’s important for me to be in charge of my own care and to live independently. This helps with my depression.

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

I’m trying to see how this yoga business will work out for me. I want to do workshops and classes. Maybe I could work alongside a rehabilitation therapist for TBI patients. I am writing an autobiography. I’d like to better my financial situation so my child will be set just in case. And I hope to be in a loving forever relationship as well.

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.

Talk! No matter the dark thoughts, talk! I wouldn’t be here now if I hadn’t been honest about my thoughts of suicide. Keep negative friends away. Participate, even when your mood doesn’t want to! Know that one day, things will click, and your life will begin to change for the better. Your responsibilities for daily living may seem overwhelming at times, but never stop planning. It can be a time saver. (I plan all my meals in advance and make them on the weekend. I save at least eight hours a week by having my meals already made.)

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

Do yoga and meditate! Seriously, they’re life-changing.

Be educated on what depression medication does with TBI. (I plan to give a workshop on this topic.)

Stop repetitive thinking. (You can do this by smelling essential oils, having positive thoughts, or by doing deliberate simple actions, like moving a limb or picking up a picture.)

Learn how to breathe. (Proper breathing is so important to brain injury problems, like PTSD and anxiety.) I have a saying: “Once we own our breath, no one can steal our peace.”

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Survivors SPEAK OUT! Meghan Beaudry

Survivors SPEAK OUT! Meghan Beaudry

presented by

Donna O’Donnell Figurski

Meghan Beaudry – Brain Injury Survivor

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

     Meghan Beaudry

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

     Houston, Texas, USA        meghan_wang@yahoo.com

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

     In 2009, I developed lupus, an autoimmune disease, that turned into brain inflammation. I was      twenty-two. Five years later, in 2014, I had another severe brain inflammation flare in which I forgot both how to walk and much of my past.

4. How did your brain injury occur?

Lupus is an autoimmune disease.

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

I first realized something was wrong when I began to struggle in grad school.

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

A female Doctor.

A female Doctor.

I had a difficult time getting diagnosed, so I did not receive treatment the first year I was sick. I saw seven doctors before I was diagnosed with lupus. 

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

No.

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?

No.

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

I have some short-term and long-term memory loss. While I don’t have noticeable balance problems, I have a poor sense of balance for someone my age.

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

My life has changed in many ways since I’ve survived brain inflammation. In some ways, it has improved. I’m more fearless and confident. Because living with brain injury and lupus takes up so much energy, I have little energy for negative thoughts and people who might hold me back

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

I miss being able to memorize information quickly and with little effort.

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

I never would have started writing if I hadn’t developed a brain injury. It’s been an honor to be able to share my experience so that others with brain injuries can feel less alone.

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

I dislike the fatigue that comes with lupus, as well as worrying that I will have a memory slip when speaking, presenting, or performing.

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

What has helped me let go of my grief is understanding that, while living with brain injury is not a choice, grief is. I’d rather only live with one chronic condition than with two.

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

It took a while for my family to accept that my abilities and needs were different after my diagnosis. My second episode of brain inflammation led to my divorce because my husband was emotionally unable to handle it.

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

I’ve been lucky to know friends who understand my limitations, especially because of the fatigue I experience daily. In many ways, brain inflammation has deepened many of my existing friendships.

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

When I was very sick and bedridden with the second brain inflammation flare, my mother-in-law moved into my house to take care of me. Her selflessness and positive energy were huge factors in my recovery.

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

I hope to have published a memoir about my experience.

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.

I use my phone to help me remember everything. There are so many apps to help you keep track of your life.

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

Always remember that the lowest point in your injury/life is not the point at which you will stay forever.

 

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Brain Injury Resources~Book Review “Now One Foot, Now the Other”

Brain Injury Resources …

“Now One Foot, Now the Other”

by author/illustrator Tomie dePaola

presented by

Donna O’Donnell Figurski

 

Now One Foot, Now the Other

Now One Foot, Now the Other by author/illustrator, Tomie dePaola

Now One Foot, Now the Other by Tomie dePaola is one of my favorite books. I love all of Tomie’s books, but this one touches the heart.

My husband, David, had a traumatic brain injury in 2005 and, like Bob, had to relearn to walk. I guess I was my husband’s “Bobby” as I helped David to learn to walk again.

This book is so important in helping a child understand what happened to grandpa (grandma, anyone) when they suffer a debilitating brain injury. It is even an eye-opener for adults.

I highly recommend this book to any audience.

P.S. I once had drinks with Tomie dePaola and my friend, Paula Danziger, (author of the Amber Brown books) at the Roosevelt Hotel in New York City while attending an SCBWI conference. (Society of Children’s Book Writers and Illustrators)

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Caregivers SPEAK OUT! . . . Drew Niemann

Caregivers SPEAK OUT! Drew Niemann

presented by

Donna O’Donnell Figurski

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

Drew Niemann – Caregiver – Host of A Battle Within

Drew Niemann

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

Lancaster, Pennsylvania, USA

3. What is the brain-injury survivor’s relationship to you?

My wife, Terry

-How old was the survivor when he/she had the brain injury?

(No answer)

-What caused your survivor’s brain injury?

Terry had a bicycle accident and two falls, which resulted in three concussions within three years. The second impact syndrome certainly played a role. (Second impact syndrome happens when the brain swells rapidly shortly after a person suffers a second concussion before symptoms from an earlier concussion have subsided.)

4. On what date did you begin care for your brain-injury survivor?

On and off – beginning in September 2014 

-Were you the main caregiver?

Terry Niemann – Survivor of Brain Injury & Drew Niemann – Hosts of A Battle Within

Yes

-Are you now?

I’m more of a “support” person now.

-How old were you when you began care?

49

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?

Yes

-If so, were you able to continue working?

Yes

7. Did you have any help?

Yes

If so, what kind and for how long?

On and off for days and weeks

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

Immediately

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

No

A Battle Within – Podcast

10. Did your survivor have rehab?

Yes

-If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)?

Terry had physical, occupational, speech, vestibular, and vision therapies – all as an outpatient.

-How long was the rehab?

The duration of therapy depended on the particular injury being treated.

-Where were you when your survivor was getting therapy?

(No answer)

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

Day to day living; assistance in accommodating and with medical appointments

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

Some days are better; some days, worse.

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

I miss outdoor and physical activities. 

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

I have a clearer understanding of what is important in life.

15. What do you like least about brain injury?

I dislike what the brain injury has taken from Terry and the pain it has caused her and continues to cause her.

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

Time

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

Yes. Roles changed in the household. Terry’s no longer able to work as a teacher, so it has affected us financially as well.

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

Yes. We cannot do the things we once did or do them to same level. We need to choose differently now.

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

(No answer)

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. Learn as much as you can. Take time for yourself. Be sure to allow your loved one to do what he or she capable of. If you can and if it is possible, allow for his or her independence.

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Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Caregivers SPEAK OUT! . . . . Roxanne Greene

Caregivers SPEAK OUT! Roxanne Greene

presented by

Donna O’Donnell Figurski

Roxanne Greene – Caregiver for a survivor of brain injury

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

Roxanne Greene

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

Wichita, Kansas, USA

  1. 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?

My husband was 35 years old when he developed sepsis due to an unknown infection. While he was at the hospital for that, the doctors discovered the presence of three frontal lobe brain tumors. My husband’s brain lost oxygen as they were trying to save my husband’s life. He also had a secondary brain injury – brain swelling – after brain surgery.

  1. 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 as my husband’s caregiver on February 13 2007 – the day I took him to the Emergency Room. I was his main caregiver then, and I still am now. I was 38 years old at the beginning of this journey – 12 years ago.

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

My husband and I had four young children – ages 3-12 at the time.

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

I was not employed at the time. I was a stay-at-home mom.

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

I was very blessed to have a lot of support. My husband’s parents were able to help, and I had other friends and family that came alongside me – helping with the children, meals, or house, etc.

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

The support began the minute we arrived at the hospital. Our pastors met us there shortly after we arrived. During my husband’s entire hospital stay and even through rehab, I always had someone with me.

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

Yes. My husband was in a coma about 5-6 weeks. He woke up very slowly and had to learn everything all over again. It was a very challenging time for the both of us. I was there as his cheerleader – cheering him on. It was hard to have a balance between caring for my husband and taking care of the children. I was very overwhelmed at times, but again, family support was crucial to my husband’s success.

  1. 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?

Yes. My husband had inpatient rehab for about a month, and then he transitioned to in-home rehabilitation, where the therapist would come into the home to do therapy. My husband had physical, occupational, and speech therapies and even counseling. He was in intensive therapy for about a year, and he had outpatient cognitive therapy off and on for another year?

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

My husband’s brain injury caused him to become aggravated easily. He has had memory problems and also issues with communication. I had to watch him when he was around the children in the beginning. He was totally dependent on me for everything. I was like a single mother – I paid the bills, and I took care of the house, cars, etc.

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

My life has changed drastically. My husband and I both say our new marriage started February 13th, 2007. He was then, and is now, a different person. We had to figure out how to be married again to each other as new people. It has been good because our love is stronger than before. It has also been very difficult because this is not what I pictured for my future. I have moments of self-pity and sometimes wish it could be the way it was. Those moments are fleeting, and I know I have so much to look forward to.

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

I miss my husband’s going to work every day. I miss his doing projects around the house. I miss his being able to be the protector and the provider that he once was. I miss being a stay-at-home mom and spending one-on-one time with the children (even though most are grown now).

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

My husband and I get to spend more time together. My husband is more loving than before. Before injury, he worked a lot and was not home as often.

  1. What do you like least about brain injury?

I miss having more financial freedom. I sometimes don’t like having to do everything, including all the paperwork that goes into maintaining a home. I have to organize all of my husband’s doctor appointments, medications, and dealings with SSDI (Social Security disability insurance). It can get so overwhelming sometimes that I just want to cry.

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

Accepting the reality of my husband’s condition has helped. It is what it is. There is nothing I can do to change what happened to my husband. I decided I can either wallow in self-pity or pick up my feet and move forward. I have also read many books on brain injuries and educated myself through this journey. The one thing I wish for is a brain injury support group for caregivers. I know I am not alone.

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

Yes. I have become the main parent and disciplinarian, as my husband cannot parent without getting overwhelmed and angry. He has improved, but the children, even as adults, come to me for advice.

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

We both had close friends before my husband’s brain injury. We would go out and socialize and have people over often. Now we still have friends, but we rarely have anyone over to our house. We go out with family once in a while, and my husband has a few friends that will invite him to lunch once a month. It sometimes happens that my husband will not make the most appropriate comment.

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

I am a grandparent now, which brings a new set of challenges. My plans are to continue my education. I am in school to become an ASL (American Sign Language) interpreter for the deaf. I had to go back to work to increase our income just so we could pay the bills. I would love to travel some, but I am not sure if that will ever become a reality, as I have to work full-time.

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

Roxanne Greene – Caregiver

Even though your life has changed, remember you are stronger than you realize. I look back and think of how much I have accomplished and learned about myself during this time. I am not sure I would have gone back to school if my husband had not become ill. Caregivers have been giving a gift that most people never get to experience. We get to see miracles every day as our loved ones fight to improve their lives. It’s a humbling thing to be a part of such a journey.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Prisoners without Bars: A Caregiver’s Tale

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Surviviors SPEAK OUT! . . . . . Craig J. Phillips . . . . . Survivor of Brain Injury

Survivors SPEAK OUT! Craig J. Phillips

presented by

Donna O’Donnell Figurski

Craig J. Phillips
Survivor of Brain Injury

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

Craig J, Phillips

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

Charlotte, North Carolina, USA

My email is secondchancetolive1@yahoo.com.

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

August 11, 1967 at age 10

4. How did your brain injury occur?

Motor vehicle accident – We were in a Volkswagen Beetle that was hit by a woman driving a Cadillac. She lost control of her car, ran off the side of the road, hit a pole, came across her two lanes and a grass medium, and hit our car in the passing lane. I went up over my Dad’s bucket seat and hit the windshield, fracturing my left femur.

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

My father, who was driving.

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

Hospitalization – I was not expected to live the night of the accident.  I was put into traction to set my femur. I was then placed into a full body – or Spica – cast for 5-6 months. With obvious external wounds, an invisible traumatic brain injury was not considered.

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

Yes. I remained in a coma for three weeks.

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?

In 1967, there was nothing in the way of brain injury rehabilitation. Once my external wounds healed, I was on my own to navigate life with the impact of right frontal lobe damage and a severe brain bruise. I attended two physical therapy appointments, but was then on my own to teach myself how to walk.

For details, see my article:

Finding Craig — Learning to Walk Again by Not Giving Up (Part 3)

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

I underwent two EEGs (electroencephalograms – given to detect electrical activity in the brain) and a battery of cognitive and psychosocial tests. The results showed that I probably would not succeed academically beyond high school. That conclusion was shared with my parents, but not with me. I grew up not knowing that my life was being impacted by the traumatic brain injury that I sustained when I was 10 years old. I had difficulty reading non-verbal cues and social nuances and learning sequences of information. I had to discover how I learn best and to accept myself. I am not my traumatic brain injury.

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

Better – I obtained my undergraduate degree in ten years, after attending two universities and one college and having four different majors. I obtained my graduate degree in rehabilitation counseling in three and a half years, after attending two graduate schools.

There were twenty years of getting and losing jobs. Twice, I had Department of Vocational Rehabilitation (DVR) evaluations. I was deemed to be unemployable by the DVR counselor after the second evaluation. Of my three applications for SSDI (Social Security Disability Insurance), two were denied, but I was approved after the third application.

Nevertheless, I still wanted to contribute and use my gifts, talents, and abilities. I created Second Chance to Live on February 6, 2007 (secondchancetolive.org). I have written 1860 articles and made 413 video presentations and 10 eBooks. I have 30 slide show presentations, 33 posters, and other creations.

For details, see my article:

Finding Craig – My Academic Path (Part 4)

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

I had my TBI (traumatic brain injury) at the age of 10. I don’t remember my life before then.

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

I enjoy using my creativity in ways that work for me. “Do what you can, with what you have, where you are.” Theodore Roosevelt

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

It is as it is. I would like to have more of a social life. However, I accept that I do not have the skills to have more of a social life – so it is stressful for me.OIP-1

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

When I reached a point in my life when denying my reality became more painful than my need to deny my reality, I began to grieve my reality through the five stages that Elisabeth Kübler-Ross spoke about in her book, On Death and Dying. Once I moved through confronting my denial; experiencing anger for what I was powerless to change; trying to bargain my way out of what I could not change; and experiencing depression, I was able to increase my acceptance. As I grew in acceptance of what I could not change, I was open to discovering possibilities. Possibilities through choices. Choices that helped me to get into action. Action that helped me to create hope in my life.

For details, see my article:

15. Finding Craig – My Brain Injury Awareness (Part 5)

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

Yes. As I accepted my reality, I stopped needing to convince other people of my reality. People cannot give what they do not possess. For people to accept my reality would mean that they would have to feel feelings and make changes – feelings and changes that they may not know how to feel or want to feel. Changes that they may not know how to make or want to. As I stopped trying to change people, I had more peace in my life.

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

I enjoy my solitude and my freedom to create through Second Chance to Live. I have a small circle of friends.

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

I am my own case manager. As a rehabilitation counselor, I fully understand what a counselor does. A counselor is not in the position of having to do for another person what that person cannot do for himself or herself. As a counselor, what I seek to do is to teach and encourage the individual to fish – not provide fish, so that that individual will never go hungry again.

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

I am an author, advocate, keynote speaker, and a motivational coach. I created Second Chance to Live nearly fourteen years ago. I do not know what the future holds. I am preparing to be available to present at more conferences and organizational settings as a keynote speaker/workshop leader. I am doing the footwork – one day at a time. I am trusting the process, a loving God, and myself. More will be revealed with time. The pieces of the puzzle will come together at the right time and in the right order.

For details, see my article:

Finding Craig – Making Sense of Brain Injury (Part 8)

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.

Pursue excellence, instead of being driven by perfectionism.

I have difficulties learning sequences of information. I have written an article that explains what has helped me with this information: Neuroplasticity, Small Successes and Learning/Relearning Skills and Skill Sets.

Craig J. Phillips 120. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Trust the process, a loving God, and yourself.

See that your circumstances are a way to build you up, not to keep you down.

See that you are not your traumatic brain injury or your disability.

See the disappointments and disillusionment that you experience as important parts of your process.

See how those events move you in the direction of your destiny.

Find ways to use what you can through your gifts, talents, and abilities.

Accept your inability to do some things because of your deficits and limitations. Stop berating yourself for your inability to do those things.

Live and explore outside of the box that society seeks to keep you in through dismissing, discounting, patronizing, minimization, and marginalization.

Love, accept, and celebrate who you are as an individual.

Break free from the denial system that keeps you feeling like a mistake. Stop identifying as a patient.

Accept the things you cannot change, change the things you can, have the wisdom to know the difference, and then be at peace with that difference.

See life as a process – a journey.

Realize that your job is to learn “how-to” from various ingredients and then combine what “you learned” together to bake various “cakes.”

Realize that there is no such thing as failure, only an opportunity to learn.

Realize that what occurs in your life is meant to set you up, not set you back.

Begin to live the “now” in life.

Struggle makes you stronger.

Avoid the comparison trap.

Share with other traumatic brain injury survivors that there is hope.

Realize that what happened to you is not as important as what you do with what happened to you.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Prisoners without Bars: A Caregiver’s Tale

 

SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . Rico Principe

SPEAK OUT! Faces of Brain Injury

Rico Principe (survivor)

presented by

Donna O’Donnell Figurski

Rico Principe – Brain Injury Survivor

Rico Principe (survivor and advocate)

Don’t let my looks fool you. I have a laundry-list of deficits. Some are obvious, and some become obvious only to those who live with me. The brain aneurysm didn’t kill me, but it killed the “me that I was” and gave my family and my friends the “new me.”

The brain aneurysm turned my world upside down. I wasn’t even aware of brain aneurysms until I had the “worst headache of my life” in 2004. It gave me a 24/7-headache, occasional bouts with depression, aphasia, neurofatigue, forgetfulness, memory loss, PTSD (post-traumatic stress disorder), sleeplessness, and loss of filter.  I also have a short fuse.

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It came unannounced, and I wouldn’t be here if it weren’t for the actions of my wife (Elvie). She was there and called 9-1-1 so I could be taken to the hospital as soon as possible.

I struggle with the “baggage” that comes with being a brain aneurysm survivor, but I chose not to be burdened by it.  Instead, I chose to be an advocate. I help run a Facebook group of brain aneurysm survivors with almost 11,000 members.

This is me. A survivor and an advocate.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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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.

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.

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

Feel free to “Like” my post.

Please check out my book.

Prisoners without Bars: A Caregiver’s Tale

SPEAK OUT! Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

presented by

Donna O’Donnell Figurski

itty-bitty-giant-steps-for-blog

Andrea Coffey – Survivor of Brain Injury

Andrea Coffey (survivor) … I cooked for the first time today – just something very simple.

I’m kind of proud of myself.  Frozen pesto pasta! I threw some chicken in it.cartoon_chicken22-1

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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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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.

Please check out my book, Prisoners without Bars: A Caregiver’s Tale.th

New News: . . . . . . . ZOOM! Coffee with the Authors @ BIAAZ

New News: . . . . . . . . ZOOM! Coffee with the Authors @ BIAAZ

presented by

Donna O’Donnell Figurski

David & Donna Figurski

I’m so excited to be invited by the Brain Injury Alliance of Arizona (BIAAZ), to share my book with you. PRISONERS WITHOUT BARS: A CAREGIVER’S TALE has been called a compelling read, a true-to-life drama, and a heart-warming and inspiring love story. What do YOU call it?

More than fifteen years after my husband, David’s traumatic brain injury in January 2005, we are still searching for the light at the end of the tunnel. It’s there. It’s just still so tiny.

I hope you will join me on Saturday, October 24th at 10:30a Pacific Time for a virtual book club meeting on ZOOM.

It’s FREE! It’s FREE! It’s FREE! It’s FREE!

Please come hear me talk about my book and read a short excerpt.
Bring your QUESTIONS.

REGISTER HERE and you will receive a link to attend.

Can’t wait to see you there.

I’d love to hear what you think of PRISONERS WITHOUT BARS: A CAREGIVER’S TALE. Reviews on Amazon, Barnes and Noble, and Goodreads are really appreciated. Reviews keep books alive.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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

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Caregivers SPEAK OUT: . . . Author, Abby Maslin

Caregivers SPEAK OUT: Author, Abby Maslin

presented by

Donna O’Donnell Figurski – author

Prisoners without Bars: A Caregiver’s Tale

 

Caregiver, Abby Maslin – author of “Love You Hard”

 

 

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

Abby Maslin

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

Washington, DC, USA

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?

My husband, TC, is the TBI (traumatic brain injury) survivor. He was 29 at the time of the assault that caused his injury.

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 became my husband’s full-time caregiver on August 18, 2012. I had just celebrated my 30th birthday.

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

I had a 21-month-old son, named Jack, whom I was also caring for at the time.

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

I was employed as a fourth-grade teacher. TC’s injury occurred the weekend before school started. I was not able to return to work for a year.

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

We had family members who lived nearby and who offered intermittent help. My parents were both ill, however, and unable to help in any large capacity.

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

Immediately. It began as I was tasked with advocating for TC’s medical care.

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

Yes. TC was in a deep coma for about four days, but he took more than two weeks to fully come out of it.

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?

Yes. TC received all the therapies: speech, occupational, and physical. He received occupational and physical therapies for about one year. He received speech for more than two years.

Love You Hard by Abby Maslin

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

TC had severe aphasia (struggles with both expressive and receptive language). He had physical weakness on one side of his body and needed to relearn how to walk. He continues to have limited use of his right hand.

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

It’s really impossible to compare. My life since becoming a caregiver is far more complex and difficult. It’s required a lot of emotional growth and healing to let go of the life I had and the relationship I once shared with my spouse. This new life, however, is far richer in purpose and gratitude than it was before. I have a clearer sense of who I am, what I’m capable of, and how I want to spend my time on earth.

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

I miss the sense of safety I once felt. I miss the easy conversation my husband and I once shared. (His aphasia makes communication much more effortful.)

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

I enjoy the sense of gratitude I live with daily. I can identify and reflect on my blessings with clarity. It’s a wonderful thing to appreciate life as it’s happening.

15. What do you like least about brain injury?

The unpredictability. As a caregiver, I find that it’s difficult to align one’s expectations to the recovery of a loved one, as everything is always in flux and changing.

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

What’s helped me is the recognition that suffering is universal. My family and I were never exempt from life’s challenges and normalizing that experience of hardship has helped me make peace with its existence.

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

Absolutely. While my husband’s personality is mostly unchanged, there are subtle changes that have required us to relearn each other as people. It has shifted the dynamics of responsibility and roles in the household.

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

Yes, at first. But, we were fortunate to have many friends who stuck out the recovery process with us and with whom we still socialize. We are not as social as before, but we also have two young children these days.

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

Praying for continued good health. TC has wonderful healthy habits, but we can’t control the aging process. If all goes well, in ten years, we’ll still be working and living at home with a 14-year-old daughter and a 20-year-old son at college!

Caregiver, Abby Maslin – author of “Love You Hard”

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 forgiving of yourself and your own process of grief. It cannot be rushed. The hand you’ve been dealt is a terribly unfair one, and it is OK to acknowledge the gravity of that fact. Life with brain injury requires persistence, patience, and a lot of hope, but life can be as beautiful and as rich as before.

 

Stay Safe and Healthy!

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(Photos compliments of contributor.)

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