TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Another Fork in the Road’

Survivors SPEAK OUT! Mike Gephart


Survivors SPEAK OUT! Mike Gephart

presented by

Donna O’Donnell Figurski

Mike Gephart

 

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

Mike Gephart

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

Oshkosh, Wisconsin, USA

-Email (optional)

geppyonbass@gmail.com

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

My brain injury happened on March 12, 2014. I was 40 years old.

4. How did your brain injury occur?

I was heading home from work on a 2-lane 55-mph county highway. As I approached an intersection, there was a man waiting in the oncoming lane with his left blinker on. He was struck from behind at 61 mph by an inattentive driver. The man waiting to turn was killed instantly. So less than a second later, I had a 54-mph head-on collision with a dead man (he was pronounced dead at the scene of the accident). car acciddent R

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

Another person instantly realized I had a major problem.

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

Twice, on the way to the ER (Emergency Room of a hospital, the EMS (Emergency Medical Service) paramedics got my heart beating. By the time my (now “ex”) wife got there to identify my body, I’d been put on machines. I was in a medically induced coma for nine days, and I was incognizant for 14 more days. After those 23 days, I heard the words “traumatic brain injury,” which described my biggest problem. 

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

Yes. I was in a medically induced coma. Of the nine days that I was comatose, two were spent trying to get me out of the 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?Cognitive Rehab 8-85260_ms-health-cognitive-rehabilitation-cognitive-behavioral-therapy-cartoon

I was in rehab at the hospital for a week after regaining cognizance. Then I went home and was given physical, speech, and occupational therapies by a home service. Once I could walk with crutches, I had outpatient therapy for another four months.

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

I had problems with balance and executive functions. My disability today is basically all about my executive functioning. I had third-party disability insurance through an employer. Because my injuries happened on my way home from work, they got a lawyer to get me on SSDI ASAP (Social Security Disability Insurance; as soon as possible). Because of my executive functioning, “ASAP” meant five years. 

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

I choose not to dwell on all the “bad” things that happened because of my accident. In my 1st or 2nd night of cognizance, crying in my bed alone at 3 am, I had a panic attack about everything that had occurred – and was going to happen. It was at this moment that I heard an internal voice say to me: Mike, bad things happened and will continue to happen far more than anything good.

*Energy you waste fearing Bad is energy you steal from loving Good. (I call that advice “Themandment.” And every one of the 10 commandments that Moses only had to climb a mountain lie safely under the umbrella of Themandment.)

So how has my life changed? I was blessed with clarity and the ability to reinvent my identity in and my understanding of this plane of existence.

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

Daughters RI miss being in a family unit with my daughters.

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

I’m blessed to know from experience what will happen with my soul when my body dies again.

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

I don’t like having to acknowledge my brain injury when it reminds me of why I can’t and shouldn’t try being what I was. 

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

Themandment helps me several times daily. 

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

The relationship with my ex-wife after the accident can’t even be called a relationship.

I came back a new man, and relationships, with what I call “1st Reality Sufferers,” are difficult because of my 2nd perspective. 

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

My social life has changed. I used to be a local rock star with a day job who went where he wanted and felt comfortable. Now, I don’t feel comfortable in many places, I have fewer friends, and I gig far less. 

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

My mother has power of attorney for me, and she is my emergency contact.  Early on, my in-laws watched over me while my (now “ex”) wife went back to work. 

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

I don’t plan further than a month yet. My world changed in less than a second. So living in the moment is paramount. Live in the Moment OIP

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.

Themandment: Energy wasted fearing bad is energy stolen from loving good. 

That one passage is a notion I wish I could have had in my 20s. Before my accident, I could spend a day worrying about things that might happen. It hurts to think back to all of the things I didn’t take the time to love and feel blessed to have.

One piece of advice a TBI mentor gave me. 

He said: “You didn’t unlearn anything in your accident. 

But you need to reinvent a new way to do everything! … with 40 years of experience.” 

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

I suggest three things: 

  1. Themandment
  2. Reinvent new neuro-pathways.

Relearning how the old ones worked is pointless. 

  1. Unconscious bodily functions! 

Focus on things like making it to the toilet on time. 

The reason newborns and the elderly wear diapers is because of brand new or deteriorating neuropathways. 

Don’t wait for your primary doctor to tell you about it.

 *****

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Read All About It! . . . . . . . Prisoners without Bars: A Caregiver’s Tale

Read All About It!

Prisoners without Bars: A Caregiver’s Tale

presented by 

Donna O’Donnell Figurski – author

Donna & David with ARC of Prisoners without Bars: A Caregiver’s Tale

My memoir, Prisoners without Bars: A Caregiver’s Tale, is not only a story of David’s and my struggles after his traumatic brain injury, but it is also a love story. Though my memoir addresses a dire topic, it is peppered with comedic situations. They say laughter is the best medicine, and again, they are right.

Prisoners without Bars is a heart-wrenching memoir that will make you laugh, cry, and G-A-S-P. I promise!

Boy Laughing

Girl Crying girl-crying-clipart-34

Girl Gasping 2

It’s not a beach read, but it reads like one. It’s fast! It’s easy! It’s fascineasy. I mean fascinating.

What Readers are Saying!

Jackie said – “A beautiful and touching story.”

Anonymous Amazon Customer said – “I loved this book. almost couldn’t put it down.

jlgwriter said – “I found the story powerful and compelling.

Todd & Kim said – “This is such an inspirational story of survival! The book is a very easy read and informative as well as inspiring!!”

Judy said – “Donna O’Donnell Figurski tells her story of grace, love, frustration, anger, disappointment, strength, joy, and above all hope.”

Marge said – “I read it in one fell swoop… I guess the word that would describe your book, your life, and who you are is SUPERCALIFRAGILISTICEXPIALIDOCIOIUS.”

Anonymous said – “This book pulled me in immediately and didn’t let me go until the end! ”

Helen said – “Could not put this book down. Written for easy reading. It was like having a conversation with a friend.” “I finished it in one day with some teary moments along with some chuckles. A must read!!”

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Survivors SPEAK OUT! Simon Limbrick

Survivors SPEAK OUT! Simon Limbrick

by

Donna O’Donnell Figurski


Simon Limbrick 2

1. What is your name? (last name optional)
My name is Simon C. Limbrick.

2. Where do you live? (city and/or state and/or country) Email (optional)
I live in Gloucester, UK.

3. On what date did you have your brain injury? At what age?
My brain injury happened in 1980. I was 15 at the time.

4. How did your brain injury occur?
My brain injury occurred when I was crossing a duel carriageway on my bicycle – something I did safely on hundreds of occasions. R

5. When did you (or someone) first realize you had a problem?
When I emerged from my coma (See my answer below.)

6. What kind of emergency treatment, if any, did you have?
My CT (computerized tomography) scan revealed a massive left temporal hematoma (The left temporal lobe is associated with understanding language, forming speech, and remembering verbal information); an aneurysm deep in the basal ganglia, which may have affected my coordination; and that I’d broken my neck in three places. The hematoma was operated on straight away at my local hospital, Gloucester Royal. They weren’t equipped to deal with the aneurysm, so, as soon as the first operation was completed, I was put into an ambulance and red-lighted 35 miles to Frenchay Hospital in Bristol. When I emerged from a two-week coma, I found I was paralyzed from the neck down. I also had a tracheotomy tube in my throat.

7. Were you in a coma? If so, how long?
Yes – two 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?
During my five-month stint at Gloucester Royal, I underwent the full raft of therapies: physio, speech, and occupational.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?
I had to relearn how to use my limbs, how to talk, how to dress myself, and how to walk. Although my right side had “come on line” first, walking was something I found very hard to do. Compounded by balance issues, I had a dropped right foot – a trip hazard in itself. I had leg braces made, but these meant I had to learn to walk with a slightly wider gait, as the inner rods and spurs would meet and cause me to stumble.

It was evident early on that I had fixed and dilated pupils. The right eye recovered some time after, but the left eye remained fixed. As the left eyelid gradually opened, double vision was apparent. This caused me to miss the bowl of the toilet a few times until I re-adjusted! My balance was shocking. Even when given a wheelchair later on, I told my hands to release, but the left was slow to react. As a result, I often got my fingers caught in the spokes. I compensated by learning to push with my right arm and steer and pull with my right leg.

My short-term memory and concentration were atrocious. My personality, mainly shy and introverted, now flourished in the attention I was getting from all quarters. My inhibitions quickly diminished in hospital. My personality grew with this new “gift” of disinhibition. Unfortunately, it was a double-edged sword, as I found I often did not engage my brain before putting my mouth into gear. I caused untold damage to myself and much angst to others countless times because of my lack of social inhibitions. There was nobody else to blame for this.

Simon Limbrick 110. How has your life changed? Is it better? Is it worse?
One never fully recovers from this sort of trauma. We learn to cope with it, or not, in our own ways. Me? I have learned the value of laughter – of being able to laugh at myself. How can we justify laughing at others if we cannot laugh at ourselves? In essence, having others laugh with us instead of at us changes our whole outlook on life. It enables us to put things into perspective.

11. What do you miss the most from your pre-brain-injury life?
I missed my youth and fitness, definitely. I miss my dexterity.

12. What do you enjoy most in your post-brain-injury life?
I enjoy my gratitude … my ability to put things into perspective … laughter … love … and the empathy to communicate with others.

13. What do you like least about your brain injury?
I dislike that, because of my brain injury, I’ve hurt people and I’ve made mistakes.

14. Has anything helped you to accept your brain injury?
Even though I cannot remember the incident, accepting my brain injury was key, but it was an accident.

Of all the cars I could have come into contact with that day, the car I collided with turned out to be driven by my dad’s best mate! Both he and two or three other witnesses attested that I caused the collision by pulling out when I did. I was then able to see things in perspective. I realised that the incident was an accident. I finally stopped blaming myself for the hurt I was causing others.

15. Has your injury affected your home life and relationships and, if so, how?
Of course my life and relationships were affected! My personality changed, which my family and friends … and I … found hard to cope with. Two friends – my closest – stuck by me, no matter what – even when their school exams were on. After I left the sheltered environment of the hospital, the severity of my situation dawned on me. Although I had made and continued to make great strides physically, the fact that I could not control my emotions and aspects of my behaviour continued to cause anger, intense frustration, and distress both in myself and in others. This situation went largely unvented and inevitably led to feelings of hopelessness and depression, which in turn led to thoughts of suicide. I’m ashamed to say that I even got uncomfortably close to seriously considering it a few times.

16. Has your social life been altered or changed and, if so, how?
My pre-accident social life was mainly confined to school, friends, and family. The gift/ curse of disinhibition has its pluses and minuses, as I’ve already mentioned. Learning how best to deploy it takes years, and, even after four decades, I can still get it wrong. However, I am a much more confident and outgoing person compared to my younger self. (Perhaps I would have been anyway. I guess I will never know.) Simon Limbrick & Wife 3

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I am fully independent and have been living on my own for the past 27 years – though I do need help whenever I am faced with filling out a form.

18. What are your plans? What do you expect/hope to be doing ten years from now?
It may seem somewhat pessimistic, but I tend not to make plans. I have a will, of course, and my kids are looked after, but aside from that, I live day to day – not planning too far ahead.

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.
Never accept a prognosis. If you do that, you’ve lost 50% of the battle straight away.

To illustrate this point, I can remember my mother telling me I had not been expected to survive the first operation – or the second. “If he does,” the doctors told her, “he will be in a wheelchair for the rest of his life and needing 24-hour care.” I promised her she would have me back just like I was before.

Also, my consultant told me that I had 3rd-nerve damage in my left eye. The result is that I have a lazy left eye. I was told that I would never be able to move it and that I would be blind in that eye eventually. I reminded him that I was not supposed to pull out of my coma and that I should not be making the gains I was achieving. Within the first year, I had achieved slight lateral movement in my left eye. Over the years, it became more pronounced. It took a further 37 years to induce a good measure of vertical movement. My left eye is not yet synced with the right, but maybe it will be over time.

The road to recovery is never complete from this sort of trauma and is fraught with many pitfalls. The trick is to never give up. Win as many of the small battles as you can so you tip the advantage in your favour.

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
a. NEVER ACCEPT A PROGNOSIS. If you do that, you’ve immediately surrendered 50% of your chances of recovery.
b. DO NOT RELY ON ALCOHOL OR DRUGS TO GET YOU THROUGH. You are stronger than you believe you are. Excepting prescribed medications, mood-altering drugs just anchor you to dependence. You will never discover how strong you really are until you face reality and deal with it in the flesh.
c. DON’T BE AFRAID TO CRY. Realising pent up emotions enables you to carry on.
d. BE COMPASSIONATE IN ALL AREAS OF LIFE. You wouldn’t wish on anybody what you’ve been through.
Life Isn't Fair Re. ACCEPT THAT LIFE ISN’T FAIR. We need emotions to help us learn. Grow towards the light. Don’t become a weed and strangle those next to you. Treat others as you would want to be treated.
f. LEARN TO FORGIVE YOURSELF – AND OTHERS.
g. REALISE THAT YOU ARE NOT PERFECT.
h. REALISE THAT RESPECT, REAL RESPECT, IS BORN NOT OUT OF FEAR, BUT OUT OF COMPASSION. Compassion is a strength, not a weakness.

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SO, WHADDYA THINK? . . . . About Faulty Filters After Brain Injury

SO, WHADDYA THINK? . . . . About Faulty Filters After Brain Injury

by

Donna O’Donnell Figurski

so-whaddya-think-brain-th-4

After a brain injury, many survivors may experience an extreme behavioral, emotional, or personality change. This can be a real problem with keeping friendships. For example, a person who was once the life of the party and can no longer party for any number of reasons—overstimulation, for one—is not that fun to be around. Lack of filters can be another problem.

We all use filters to control what comes from our brains and out of our mouths, and we don’t always say exactly what is on our minds for fear of offending someone. However, some survivors have diminished control over their filters and blurt out whatever they are thinking, possibly offending their friends, who then keep their distance. So essentially, the survivor is pushing away friends without really meaning to.

Sometimes anger and resentment, and perhaps perseveration about the injury—nonstop talk about the injury, can alienate friends because the friends just don’t get it. Because brain injury has damaged parts of their brains, brain-injured survivors are usually not the same person they were before their injury. After all, they’ve looked death in the face and pushed it aside.

Whaddya You Think?

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SO, WHADDYA THINK? . . . . ABOUT INVISIBLE BRAIN INJURY

So, Whaddya Think? About Invisible Brain Injury

by

Donna O’Donnell Figurski

so-whaddya-think-brain-th-4

 

Invisible Brain Injury comes with a whole set of problems. Because the survivor looks “normal,” their friends, family, and strangers often think they are faking their problems––neuro fatigue, memory loss, lack of organization, and other cognitive deficits.

My husband, David’s, brain injury is obviously visible, so he doesn’t run into issues where people doubt his injury. But for those survivors whose injury is “all in their brain” and not easily seen or realized by the general public or family and friends, major problems may arise. Folks too often believe that a brain injury should be healed in weeks or months, just like a broken bone. But the fact is that brain injury takes a lifetime of recovery.

Whaddya You Think?

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Survivors SPEAK OUT! Ariel Johnson

Survivors SPEAK OUT! Ariel Johnson

by

Donna O’Donnell Figurski

Ariel johnson

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

Ariel Johnson

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

Long Island, New York, USA

-Email (optional)

ArielAnn.Johnson@gmail.com

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

My brain injury occurred on December 13th, 2007. I was 17 years old.

4. How did your brain injury occur?

My brain injury is from a car accident. While rounding a bend, I entered the oncoming lane, collided with a van, and hit a tree.     Car Accident R

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

I realized I had a serious problem the minute I woke up from the coma I had been in for a month and a half.

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

I had a craniectomy (surgery to remove a portion of the skull), brain surgery, then eventually cranioplasty (surgery to repair the skull).

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

Yes – for a month and a half

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 was hospitalized for about three months. I received outpatient physical rehab for about five months after I was hospitalized. I was at Mount Sinai Outpatient Rehab’s Phase Two program, which taught me emotional regulation and how to be aware of myself.

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

I have issues with sensations on my right side because I have nerve damage there (hemiparesis). My personality changed completely – I didn’t care as much about certain people in my life who were not helping me. My perception of life got better as I became more in touch with my family and who I was as a person. I had emotional issues in the beginning of my recovery, but I feel like I have healed a lot of me. I can now give back and help others.

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

The accident was a blessing in disguise; I am so grateful that it happened. I would not know where I would be if it did not happen. I learned structure and life experience.

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

I miss the friends I once had. For a long while (and I mean almost 13 years), I was letting go of my friends. We were all at a point of our lives when we were moving on to college, and they did not understand my brain injury. I expected a lot of them, and I feel it wasn’t fair on my end. Plus, I found comfort in knowing that my sisters (including one childhood-friend whom I consider to be a sister) were my true friends all along and would never leave me.

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

I value learning to be so self-aware, learning to be structured, and understanding that I have been to hell and back. No one can bring me down.

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

Sometimes, my head feels weird when I’m trying to sleep at night. I also don’t like the fact that I have to part my hair a certain way to hide my scar.

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

Yes. I found help in exercise, experience, eating the right foods, word games, and just going through the motions of my recovery – both the negative and the positive parts.   Exercise R

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

My parents had been divorced for about seven years, but, after my accident, they actually got back together again. But I lost all my friends. I couldn’t keep friendships because I didn’t have any respect, love, or care for my own self. Plus, I had to relearn how to be human again.

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

Heck yea! For a while, I could not drink or drive; that limited me tremendously. Also, I could not keep relationships.

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

I am my own caregiver, but for a while, my needs were taken care of by my parents. I did have a woman take me to doctor appointments – she was lovely.

Positive Attitude R18. What are your plans? What do you expect/hope to be doing ten years from now?

In ten years, I am going to be motivating people every day through public speaking and collaborating with others on books, podcasts, and seminars. I am going to own at least five apartment complexes, each of which will make around $1 million yearly. I am going to be married and have at least two children. I am going to be happy, confident, and loving every moment of my life!

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

Time heals all wounds, but you need to go through the pain to heal. You also need to experience and practice – to push yourself even when you think it is not possible. Convince yourself that fear is just a word.

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

Enjoy every moment of your life. Perfect each baby-step, so that it turns into a habit and a better life.

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HOW TO FIND A SUPPORT GROUP

How to Find a Support Group

presented by

Donna O’Donnell Figurski

Have you ever needed a support group? Needed the help of others to assist you with the problems that life throws at you? Have you been open to asking for and accepting the help offered? Or are you like me––struggling to stand alone––and thinking you can go it alone?

Be SMART! Check out the possibilities below.

Your healthcare provider may be able to offer assistance. doctor, nurse, social worker, chaplain or psychologist

Google It! Search the Internet. Online support groups are available on social media sites like Facebook.

Local centers like libraries, churches, or synagogues may be able to direct you to an appropriate support group.

Check your local listings. Search your local telephone book (Does anyone even have a phone book anymore?) or check your local newspaper for support resources.

Ask family, friends, or anyone who knows someone with a brain injury for support group suggestions. 

Contact Organizations.

Contact a state or national organization affiliated with brain injury.

 Contact the Brain Injury Association of America to find support groups in your state. http://www.biausa.org/

Check out the Mayo Clinic for resources.

http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-200655

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Caregivers SPEAK OUT! . . . Norma Myers ~ Author, Advocate, & Mom

Caregivers SPEAK OUT! Norma Myers ~ Author, Advocate, & Mom

presented by

Donna O’Donnell Figurski

Norma Myers Caregiver

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

Norma Myers

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

Salem, Virginia, 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?

Steven was 22 years old. He was involved in a car crash with his brother Aaron. Aaron didn’t survive the accident. Aaron was 26 years old

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

August 13, 2012

Were you the main caregiver?

I resigned from my career with Advance Auto and went to Shepherd Center in Atlanta, Georgia, with Steven, but I had complete support from my husband, Carlan. He drove back and forth from Salem to Atlanta to provide support.

Are you now?

Steven lives independently.

How old were you when you began care?

47 years old

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?

I was employed, but we choose for me to resign so that I could be Steven’s primary caregiver. I returned to the workforce 2.5 years ago – big accomplishment!

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

I had my husband’s support. We also had offers of help from family and friends. We also received financial support from family and friends through fundraisers.

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

Steven was at Carilion Roanoke Memorial Hospital for a month before being transported to Shepherd Center in Atlanta, Georgia.

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

Steven was in a medically induced coma. He had a craniectomy (actually, the first of two). (A craniectomy is the surgical removal of a portion of the skull.) We sat by his bedside, and we also planned a life-celebration for his brother Aaron.

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?

Steven received every discipline of therapy available at the Shepherd Center and when he returned home to Virginia. We spent two months at the Shepherd Center for Rehab –

one month, inpatient; second month, outpatient. I spent time learning everything possible about Steven’s rehab needs for when we returned home.

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

Getting Steven to his appointments. Making sure we stayed on top of every available resource, including grants, gifts, and programs that would help Steven with his recovery.

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

That is a loaded question. It has changed in many ways, such as I feel like I was there for Steven when he needed me, which I am thankful I was able to do so. We have experienced “firsts” all over again, such as waiting for Steven to speak his first word, to take his first step, and to become independent all over again. It has made me a stronger person because not only have I experienced the death of my first-born son, but I have also experienced what it’s like to watch my other son learn how to do life all over again.

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

Witnessing my sons’ enjoying being brothers. I miss being a mother to both of my sons. I also think about what Aaron’s life would look like at every stage of his life if he had survived and what Steven’s life would look like without a traumatic brain injury (Ambiguous Loss).

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

Celebrating Steven’s victories in life. Helping other families navigate through their journey of TBI (traumatic brain injury).

15. What do you like least about brain injury?

There is no cure, and it’s an invisible disease. I also wish that when people are curious about what happened to Steven, they would ask instead of stare … Steven is fully comfortable in discussing his accident.

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

13 NORMA MYERS , Steven, Dad Graduation

Steven’s motto helps me put things into perspective … ”Deficits do not define him.” He is an overcomer.

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

We rearrange life to be available to Steven should he need us if he has a seizure. Currently, with no license due to seizures, we make sure he is where he needs to be all while balancing our careers. We make it work as a family!

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

Of course! As parents, we will always put our son’s needs first.

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

I have no idea! We can only take one day – actually one minute – at a time, always trying to better ourselves and be thankful that, while this journey isn’t what we planned for our lives, it’s what God gave us. And we will do the very best we can day by day to honor Him.

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

tenor

Every brain injury is different, so please don’t do the comparison game. Take one day at a time. Tap into every resource available to you, and, trust me, there are so many out there. You are not alone – there is no shame in asking for help! I will do anything for my fellow brain injury survivors and their families. I am here to offer a word of encouragement through my blogs and volunteer work. Don’t give up!

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Clip Art compliments of Bing.)

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Survivors SPEAK OUT! Jordan Fallert

Survivors SPEAK OUT!     Jordan Fallert

by

Donna O’Donnell Figurski

Jordan Fallert

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

My name is Jordan Fallert.

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

I live in St. Louis, Missouri, USA.

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

I got my brain injury on February 5th, 2021. I was 23 years old.

4. How did your brain injury occur?

I got my TBI (traumatic brain injury) from a car crash around 5:30 on a Friday. I had just left work to go home to study for a test for my master’s degree. Studying

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

What saved my life was that a fire truck had responded to a fire on that same road. They were told their backup was no longer needed. Their captain (who was in an SUV, not the fire truck) saw the crash happen. I was unconscious on impact, and they had to use the “Jaws of Life” to get me out of the car. After I was rescued, they took me straight to the hospital to have emergency surgery. I was in a coma for six weeks. I slowly gained consciousness and became aware pretty quickly that I was in the hospital, but I had no idea why. That was my biggest indication that something was wrong. Also, I couldn’t walk, and I had extreme right-side weakness.

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

After I was rescued from my car and in the ambulance, the firemen realized very quickly I was having extreme difficulty breathing. I was hit on a road that had a speed limit of 45 mph. I was turning onto the road and going about 12 mph, and the other driver was speeding and going over 60 mph. Even though I was going so slowly, the force of the impact caused my diaphragm to rupture, my lungs to push on my stomach, and my stomach to push on my heart. Once I was at the hospital, I was immediately taken to the trauma floor. I was in surgery for about six hours.

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

I was in a self-induced coma for about six 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?

Yes. I did a lot of rehab. I was in the hospital for about four months. As soon as I was conscious, they began putting me into rehab. I did speech, occupational, and physical therapies. After I was released from the hospital, I stayed with my mom in a house on the hospital campus and did intense outpatient therapy. And when I came home, I did more therapies at a hospital near me. It’s difficult to say how long I was in rehab, but I would guess about nine months.

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?  wearing-specs-retro-cartoon-girl-teen-vector-illustration-148518868

My vision is one of my biggest problems so far. I go to a neuro-ophthalmologist to help combat my double vision. I have had some personality changes that my mom would probably agree with. But I would consider a lot of these “personality changes” to be normal for a very intelligent 24-year-old who had the whole world going for her. Someone else’s actions took that away. I also lost my independence.

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

My life has changed, but I wouldn’t say it’s better or worse; it’s just different. (I personally have really tried my best to think like that.) My life has changed in that I have to rely on people a lot more than I am comfortable with. I got a car for my 16th birthday (almost ten years ago), so I’ve always been able to go places and do things without having to ask other people for rides and things like that. It feels like I was knocked down a peg or two.

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

This is a bit of a complicated question for me. My life was in such a weird place when my crash happened. Courses all went online because of COVID. I had to come home–exactly from my undergrad degree. I continued with a job where I had my internship at, but I hardly saw my friends because of COVID. They were all in different cities in the US, and we couldn’t really travel. So I guess what I really miss are my college years because those are the most recent and foremost in my mind. Because of the accident, I have retrograde amnesia. So I don’t remember anything from about two years before.

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

Jordan Fallert & CavapooBefore my accident, I was on a breeder list to get a cavapoo puppy. I was sixth on the list, and a litter was born in May 2021. Some people skipped on this litter of two (the Tom and Jerry litter), so I was able to have my choice. I chose Tom and renamed him Brew. He has been my saving grace after my brain injury. He’s my best friend and constant companion. I don’t know what I’d do without him.

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

I don’t like feeling weak. This right-side weakness has been an uphill battle to deal with. But it’s getting better.

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

My parents have really been my saving grace. They have never given up on me and never make me feel like I am limited. If I want to do something, they encourage me and help me do it.

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

I continue to live with my parents since my brain injury. I was living with them before due to COVID. My parents have been nothing but great. But I have had a lot of friendships wither and decay, which has been hard in and of itself.

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

Yes and no. I didn’t have a social life before the accident because of COVID. After the crash and when I came home, I had some friends come see me at my house, but they slowly drifted away. It’s hard when you can’t drive, so you are always having to ask others to drive up to see you or drive you somewhere.

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

My main caregivers are my mom and my dad. I do not understand–and hope to never understand–what it takes to be a caregiver. I just know that they are the strongest individuals I know.

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

My plans are very fluid and always changing. I recently (less than a month ago) got my license, and last week, I was able to buy my own car. With these changes, my attitude and outlook have drastically improved. I feel like I can conquer the world if I have this outlook. A Traumatic Brain Injury won’t keep me down and will not limit me. I won’t let it!    R

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 was always angry that my brain couldn’t heal faster, but my mom kept reminding me that it’s not like a broken bone. It’s an organ that controls your entire body, so give it time to heal.

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

Don’t take your anger out on your caregiver(s). They want to help you get your life back. Hug everyone tighter, and tell them you love them. A brain injury will only limit you if you let it.

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Clip Art compliments of Bing.)

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Survivors SPEAK OUT! . . . . . . . Bill Gasiamis Stroke Survivor & Podcaster

Survivors SPEAK OUT!     Bill Gasiamis

Stroke Survivor & Podcaster

by

Donna O’Donnell Figurski

Bill Gasiamis

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

Bill Gasiamis

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

Melbourne, Australia

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

My stroke happened on February 12, 2012. I was 37.

4. How did your brain injury occur?

It was caused by bleeding of an AVM (arteriovenous malformation).avm-clipart-1

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

It was seven days before I took any action about it.

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

I was in hospital for seven days. After six weeks at home, my brain bled again (March). It bled again in November 2014, and then I had surgery.

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 inpatient rehab for one month and out-patient rehab for six months. I had to learn to use my left side again and learn how to walk.

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

I have numbness on my left side. Fatigue is a problem. I have minor balance issues when I am tired.

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

Life is better. It’s more complicated because of what happened but my personal growth has been huge.

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

I miss playing running-sports, like soccer.R-2

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

I have a new appreciation for working on things that are hard and take a long time to complete.

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

Sometimes, I wish I had more energy.

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

I was helped by lots of counselling.

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

It has, but for the better. By my own standards, I am a better person than I used to be.

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

No

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

I don’t have one. (I am my own caregiver.)

03 BILL GASIAMIS mage-1024x998-118. What are your plans? What do you expect/hope to be doing ten years from now?

I intend to continue to interview stroke survivors on my podcast, to speak on stroke-related topics, and to write books on stroke recovery.

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.

Survivors need to understand that emotional recovery is a very important part of recovery. It is often overlooked. Emotional recovery supports both the physical and mental aspects of a survivor’s recovery.

R20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Take responsibility for your own recovery, and learn to put your energy into solutions instead of focusing on the problem.

Get Your Copy Now!

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Click Links under Book

  PAPERBACK!   Read it Now!    

                                                  e-BOOK!   Read it Now!  

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Stay Safe and Healthy!

Clip Art compliments of Bing.)

(Photos compliments of contributor.)

As I say after each post:

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