TBI – Survivors, Caregivers, Family, and Friends

Archive for the ‘Survivors SPEAK OUT!’ Category

Survivors SPEAK OUT! . . . . Robb Anthony Filippes

Survivors SPEAK OUT! Robb Anthony Filippes

presented by

Donna O’Donnell Figurski

 

Rob Filippes 052018

Robb Anthony Filippes – survivor of brain injury

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

Robb Anthony Filippes

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

Evansville, Indiana, USA

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

May 22, 2016

4. How did your brain injury occur?

I had a full cardiac arrest.

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

I realized I had a problem when I woke up, and I had to go to HealthSouth Deaconess Rehabilitation Hospital.

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

Well, I was on life-support … cartoon+infus

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

Yes. One week

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)?

Yes. I was an inpatient at HealthSouth.

How long were you in rehab?

One month

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

I lost my short-term memory. Balance is a problem. Sometimes I need to use a cane or a walker. My personality changed; I became nicer.

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

My life is better.

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

Nothing. I was a drug addict for 35 years. (I’m 51 years old.)

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

I greatly appreciate that I’m still functioning. I’m very lucky.

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

I dislike my short-term memory loss.

14. Has anything helped you to accept your brain injury?Shrink 2

I still have a hard time accepting my brain injury. I go to a “shrink” now.

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

My brain injury actually made my home life better. I was about to lose my marriage over it. (I lost my first marriage from it.)

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

Robb Anthony Filippes & Wife

Survivor – Robb Anthony Filippes & wife

Yes. I don’t see anyone.

17. Who is your main caregiver?

My wife

Do you understand what it takes to be a caregiver?

Not really. She does everything for me and our family.

18. What are your plans?

I hope to help others with addiction.

What do you expect/hope to be doing ten years from now?

Rob Filippes Survivor 2 0520118

Robb Anthony Filippes – survivor of brain injury

I hope to still be alive and to have helped people, even if it’s one person.

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.

Get counseling right away

20. What advice would you offer to other brain-injury survivors?

Never Give UpDon’t give up!

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

All brain-injured people are in my prayers.

 

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Survivors SPEAK OUT! Kuna Williams

Survivors SPEAK OUT! Kuna Williams

presented by

Donna O’Donnell Figurski

 

Kuna WIlliams1. What is your name? (last name optional)

Kuna Williams

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

I currently live in Tempe, Arizona. At the time of my accident, I was a homeowner in Surprise, Arizona.

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

I received my traumatic brain injury (TBI) on July 27, 2006. I was 26 years old.

4. How did your brain injury occur?

I was involved in a motorcycle accident a couple blocks up the street from home. I was on my way to play a game of billiards.

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

When I was hit, a gentleman found my cell phone and called the phone number titled “Mom.” My mother and my father drove from Glendale to the scene of the accident – Surprise. I was taken to the hospital while in a coma. The following morning my mother was advised that, among other injuries, I had received a traumatic brain injury.

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

I received emergency treatment and was ambulanced to the hospital. I was unresponsive at the scene of the accident, and therefore I was intubated. My left lung was collapsed (left pneumothorax) for which a chest tube was inserted. My left wrist was broken. (I had an open left distal radius and ulna fracture.) It was repaired with multiple screws. An EVD (external ventricular drain) was made for a closed head injury and remained for two weeks. I received a trache (tracheostomy tube) and was placed on a ventilator. (A tracheostomy tube is inserted into the trachea for the primary purpose of establishing and maintaining an airway.) A GJ-tube (gastro-jejunal tube) was also inserted. (GJ-tubes can be used to bypass the stomach and feed directly into the second portion of the small intestine.)webpage-clipart-hospital9-1

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

I was in a medically induced coma for twelve days. About four months after my accident, they put in a ventriculoperitoneal (VP) shunt (which redirects excess fluid away from the brain to the abdomen, which can more easily tolerate surplus fluid). They also installed an inferior vena cava (IVC) filter (used to prevent blood clots from moving through the blood into the lungs), which will stay inside for the rest of my life.

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 both inpatient and outpatient rehab. Inpatient rehab was for three months and included physical therapy, occupational therapy, and speech therapy. Holistic outpatient rehab included physical therapy, occupational therapy, cognitive therapy, and speech therapy. Holistic rehab was for a total of eighteen months. I continue to see a neuropsychologist.

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

Due to my TBI, I have memory issues, changes in the speed of processing, a field cut (vision loss), and balance issues.

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

Certain aspects of my life are better. I have more of an appreciation for what life has to offer, and I am more optimistic about what can be achieved. My feeling of optimism comes from my Faith, the many resources that are provided, and networking.

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

I miss cruising custom cars.

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

Kuna Williams and Evie

Survivor of Brain Injury – Kuna Williams & wife, Evie

I enjoy spending time with my wife, drawing, attending brain injury events, participating in church, and – best of all – being a caregiver and helping others who have physical and/or mental challenges.

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

I don’t have much that I don’t like. It’s just sad how it took an accident to bring this new outlook on life.

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

What helps me with acceptance is that I realize It can always be worse. I attend support-groups. Others with the similar conditions share with you their compensations, and you share your tips and tricks. You feel good about how you can help someone. I accept my challenge and realize I can use compensations. Acceptance is tough, but, once you have accepted your circumstance, think Oh well. Move on … things WILL get better!

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

Yes. What has changed is that I’m not out gallivanting and abusing substances. What has also changed is my financial life and spending tactics.

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

See my answer to the previous question.

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

I am a survivor, but I also work as a caregiver. My main consumer has a TBI (just like me), and the other gentleman was born with challenges and wasn’t expected to live as long as he has. I treat them as friends that I can relate to. I don’t make their challenges a characteristic.

logo18. What are your plans? What do you expect/hope to be doing ten years from now?

I have previously done computer-aided drafting before and after my injury occurred. I also worked retail before I got back into drafting. After my TBI, I was no longer good at drafting. But, I am good at talking to people, and I love to draw. So, that is what led me to being a caregiver part-time and designing T-shirts part-time.

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.

Kuna Willaims & Evie 2

Survivor of Brain Injury – Kuna Williams & wife, Evie

Survivor of Brain Injury – Kuna Williams & wife, Evie

I’ve learned from my rehab that “Things Take Time.” Don’t rush things, but keep trying. Show steady persistence until you develop a routine for something. Find something you are good at or something you want to do.

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

Find your Niche!

 

You can learn more about Kuna at the following sites.

SortaFixd

weremovingforward

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Survivors SPEAK OUT! . . . Su Meck

Survivors SPEAK OUT! Su Meck

presented by

Donna O’Donnell Figurski

 

 

1 Su Meck 10862625_10204051895112757_5004286472948685848_o

Su Meck – Brain Injury Survivor & Author of “I Forgot to Remember”

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

My name is Su Meck.

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

I currently live in Northern Virginia (USA) outside of Washington D.C.

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

3. My brain injury occurred on Sunday, May 22, 1988. I was twenty-two years old at the time.

4. How did your brain injury occur?

A ceiling fan in my kitchen fell and hit my head, knocking me down. As I fell, my head hit the kitchen counter, and then hit the floor.ceiling-fan-clip-art-1160226

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

My husband, Jim, was sitting right there at the kitchen table reading the Fort Worth Star Telegram when the ceiling fan fell on me. He saw the whole thing.

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

Jim called 911 right away. The ambulance came and took me to the closer (smaller satellite) hospital. But it was quickly determined that I needed to be at the bigger downtown Forth Worth hospital because that hospital actually had an MRI (magnetic resonance imaging) scan machine.

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

Whether or not I was in a coma depends upon which pages of my (handwritten) medical records one reads. I was definitely in and out of consciousness for a few days, but I am unsure as to if I was in an actual 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?

Rehab? In Texas? In 1988? LOL! The “rehab” that I had was terribly inadequate, especially by today’s standards. I was assigned a physical therapist and an occupational therapist, but it is unclear what specifically those people did with me.

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

The most significant loss for me was experiencing total retrograde amnesia, which means I lost all of my memories of roughly the first twenty-two years of my life. Initially, both short- and long-term memory were affected. I did not recognize my husband, my two children (ages 2 and 1), any other family members, or friends. I also couldn’t walk, read, count, brush my teeth or hair, feed myself, etc. My personality post accident is the opposite of my personality from before the accident.

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

My life totally changed. Better or worse? It’s way more complicated than that. I don’t personally know what my life was like before the accident. I have to rely on the memories and stories of others who knew me. Which, by the way, really kind of sucks.

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

I don’t have any memory of anything from my life pre TBI (traumatic brain injury): all of my childhood/teenage/early adulthood memories, learning how to ride a bike, birthdays, grandparents, learning how to play piano and drums, vacations, my first crush, my first kiss, pets, losing my virginity, college-looking (the first time), sorority rush/initiation/parties/friends, meeting and falling in love with my husband, my wedding, the pregnancies of my two boys and their first years, and so many, many, many more …

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

Advocating for my fellow TBI survivors. I love speaking to groups of survivors, caregivers, and anyone really about what it is like to live with a TBI.

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

Nearly everything else

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

Even though there are still some days that I feel as though I can’t do, or understand, or remember a damn thing, the process of writing my book helped me to come to terms with how far I have actually come since my accident.

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

Oh yes! I don’t feel as if I am part of my family (my parents’ and siblings’ family). I think of my kids as more like my siblings. And my husband? Well … We are still married (33 years) … But since my accident, there have been some genuinely shitty times!

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

I’m sure it has changed in many ways, but one thing that comes to mind (and the thing that was most noticeable when I was in college at both Montgomery College and then at Smith College) is the fact that I feel way more comfortable around people in their 20s and 30s than I do around people my “real” age (50s).

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

Jim, my husband, is my main caregiver now. But at times, my children often took on the caregiver role because Jim traveled so much.

3 Su Meck & Jim 10835181_659603147482572_2314662174685025134_o

090518 PressKit_DonnaODonnelFigurski dmf3 091218

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

Wow! This is a tough one. I would love to continue writing (and publishing) stories, essays, lyrics, whatever. I always wanted to be part of a working/performing rock band, playing drums as well as singing. I want to become more proficient on the guitar, uke, and piano. I’d love to travel around speaking and educating people about what it is like to live in this crazy world as a TBI survivor. I’d love to move back to New England. I want to ski, and hike, and learn to swim. I’d love to have a dog (a service dog would be great to keep me from wandering). I want to take long extended vacations to Australia, New Zealand, England, Ireland, and even Canada.

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.

Be happy with who you are now, even if you are one hundred percent different from the person you were before. Be honest with yourself and others. It is okay to ask for help. Graduating from Smith College in 2014 was a huge accomplishment for me. In fact, Smith almost did me in physically, mentally, and emotionally. But Smith also gave me a tremendous gift: An enthusiastic love of reading and learning. Keep learning!

I forgot to Remember Book Cover20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Please buy and read my book, I Forgot to Remember: A Memoir of Amnesia. (I’m shameless!) And, if you like it, please write a positive review on Amazon and/or Goodreads. (Yes, I’m truly shameless!)

 

 

Please check out Su Meck’s book. It’s a great read!

 

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Survivors SPEAK OUT! . . . Gage Mabry

Survivors SPEAK OUT! Gage Mabry

presented by

Donna O’Donnell Figurski

 

Gage Mabry 1

Gage Mabry – survivor of brain injury

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

Gage Mabry

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

Missouri, USA

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

October 24, 2015  I was 20 years old.

4. How did your brain injury occur?

I was working, and a fifteen-pound scanner fell from a twelve-foot ladder overhead. It landed on top of my head.

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

Immediately. I knew that I took a good hit to the head. It was like being a cartoon character in a slow-moving cartoon.

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

There was no emergency-care immediately after the accident. I continued to work the rest of my shift. I was disoriented, my vision was blurry, and I developed a massive headache. It wasn’t until my mom tried to wake me up that we realized there was a problem.1304_Symptom_12

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 was sent to a company doctor, who at first diagnosed my injury as a concussion. When my symptoms continued to persist and worsen over the next few weeks, the company sent me to have a CT (“cat”; computerized tomography) scan, which showed no abnormalities. Over the next three months of “rest,” my symptoms continued, and new ones developed. So now, my brain injury was diagnosed as Post-Concussion Syndrome. I was sent for neurological testing, which showed deficiencies in brain function. I was then referred for further treatments to involve pain management, balance therapy, and counseling. But, due to the situation, I never received any treatment other than what my family could try and provide. Now after two years and an independent medical exam, I’ve been diagnosed as having “Diffuse TBI” (traumatic brain injury).

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

headacheI have severe migraines that last for days, photophobia, sensitivities to loud sounds and to certain smells, and balance issues. I also have issues with depression, anxiety, anger, and fatigue that are so bad that I can’t even function some days.

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

This is a hard one. My old life is gone, but my new one is filled with good and bad … it’s a work in progress!

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

Activities I used to do; my friends.

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

All the possibilities

Gage Mabry 2

Gage Mabry – Brain Injury Survivor

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

The headaches

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

My mom!

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

This has been a roller-coaster ride. It has devastated my family financially, but it has brought us together – with more love and support for each other that we had before. My friends and girlfriend have their lives to live, and I just wasn’t part of their plans anymore.

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

This difference has been the hardest for me to accept. I went from being a popular, outgoing, and athletic person to a withdrawn, angry, and depressed person overnight. Social anxiety has been the hardest things to try and overcome, but I’m doing it day by day. Finding humor in that anxious setting has been the best medicine ever! I explain it to people as an “EMP” … electrical magnetic pulse … when I can’t remember my left from my right or forget how to speak. It eases the tension.

Mabry, Darlene Watson Caregiver

Darlene Watson Mabry – Caregiver

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

My MOM! And, yes, it has been so hard for her. I don’t know how she does it. She’s a

superhero to me!

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

I still have my dreams that I will fulfill. They have just been altered. Instead of a “Game Designer” … it’s a “Game Broadcaster”; my physical-fitness regimens have been modified to walking instead of running. “Compromise” is what my mom calls it!

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.

You may have setbacks, but that doesn’t mean the game is over!

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

Never give up – regardless of how bad it gets – because you belong to a special group now … you are a Survivor!

 

Gage’s mother wrote a moving “Faces of Brain Injury”  Click to read

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Survivors SPEAK OUT! . . . . . . Deb Brandon Ph.D., Author

Survivors SPEAK OUT! Deb Brandon Ph.D. and Author

presented by

Donna O’Donnell Figurski

 

Deb Brandon 1

Deb Brandon, Ph.D. Brain Injury Survivor Author of “But My Brain Had Other Ideas”

 

 

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

Deb Brandon

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

Pittsburgh, Pennsylvania, USA     deb@debbrandon.com

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

March, August 2007     I was 47.

4. How did your brain injury occur?

Brain bleeds and subsequent brain surgeries

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

In the spring of 2006, I had some fleeting symptoms (dizziness, poor balance, vertigo, tingling in my arm). In September 2006, I mentioned them to my doctor at my annual check-up. She sent me for tests, including a brain MRI (magnetic resonance imaging). I was diagnosed with bleeds from cavernous angiomas (tangles of thin-walled blood vessels in my brain). The following spring (March 2007), I suffered from loss of hearing and experienced a seizure. That night, I came down with the worst headache you could imagine, which was when I realized I’d suffered another bleed (confirmed in the Emergency Room).

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

I had a CT (computerized tomography) scan, which was followed by an MRI in the Emergency Room. I was then hospitalized for a couple of days, during which time they did routine tests.

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?

Deb Brandon Surgery

Deb Brandon, Ph.D. Brain Injury Survivor Author of “But My Brain Had Other Ideas”

After the acute bleeds in the spring of 2007, I underwent outpatient physical therapy to help me with my pathetic balance. After the two brain surgeries to remove the bleeders (the only known treatment for cavernous angiomas), I spent a week in inpatient rehab, at which time they worked on my balance, problems with my eyes [nystagmus (rapid, involuntary movements of the eye), double vision, and weakness of muscles in my left eye], and I had occupational therapy. At the end of that week, I suffered a seizure, which led to a third (emergency) brain surgery. I never underwent rehab after that, except for stuff I was doing at home (video games for the brain, exercise).

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

I have problems with balance, memory, attention span, sequential thinking, vocabulary access, and task initiation. I also suffer from vertigo, paranoia, debilitating fatigue (which exacerbates all the other symptoms), crippling headaches, sensory overload, seizures, anxiety, severe depression, and (occasional) suicidal ideation. There’s probably more, but I can’t remember right now. 🙂Droopy Flower

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

My life is harder, but much better.

I divorced my husband. My relationship with my daughter (13 at the time) suffered (although over the last couple of years, we’ve gotten closer), but my son (15 at the time) and I got closer. I am a professor at Carnegie Mellon University, and I went back to work full-time two years after the surgeries. I am a mathematician. Afraid to mess-up in the classroom, I stuck to teaching the lowest level classes we teach – calculus for the humanities students (which I came to love and now teach on a regular basis). But, several years later, I found that between fatigue and headaches, I had to cut back on my teaching load.

On the other hand, in addition to the losses I suffered, the “bloody brain” (as I refer to it) led to some wonderful gains. From a socially awkward mathematician, I became better able to connect with people and formed deeper bonds. I am much more outgoing. I now have a supportive and caring community around me. I became a much better teacher, and, whereas I liked teaching math in the past, now I am passionate about it. I also discovered a new passion – writing. To better understand my experience, I started writing an account, which later grew into a book (“But My Brain Had Other Ideas: A Memoir of Recovery from Brain Injury”) that I hope will reach as many people as possible to raise awareness of brain injury. From a journal writer, I became a published author of a book I am proud of. I figured out that I was a lesbian, a realization that filled a hole I hadn’t been aware existed.

Deb Brandon Book, But My Brain Had Other Ideas

“But My Brain Had Other Ideas”

I’m more aware and self-aware. I’m a more authentic version of myself, more me. I’m more comfortable in my own skin. I am a better person. I’m more empathetic – more willing to reach out to anyone who could use a shoulder or a hand. I’m a much better listener.

I feel that the gains far outweigh the losses. I wouldn’t want to repeat the experience, but I don’t regret it. It brought me to where I am now.

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

I miss my daughter’s uncomplicated love, though we are heading for a closeness. I miss being able to multitask and being more productive. I miss having no issues with sensory overload, seizures (though those are mostly under control now), and horrific headaches. I really and truly don’t miss them, though. I like my life now much better than my past life.

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

(See my answer to question 10.) I enjoy my environment, teaching, deeper connections with people, forming and reforming new connections, and writing. I also travel a lot (much more than I used to) – both inside the US and abroad – despite the fatigue it causes. I refuse to give in too much to the bloody brain. I want to LIVE.

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

I don’t like my fears of repeat bleeds (from my remaining angiomas) and subsequent surgeries, anxiety, and depression.

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

My life is fuller now – my relationships, my closest friends, i.e., our interactions no longer revolve around the bloody brain. My depression and seizures are pretty much under control.

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

Because of issues with fatigue, in many ways I live like a hermit. I very rarely have a friend over, and I rarely attend social occasions. I often have to hide in my bedroom to avoid sensory overload. As a result, my casual relationships are more virtual much of the time. My closer friends understand, and, if we do get together, we choose quieter settings. They know that, when fatigue strikes, I have to leave (or they have to leave). A couple of close friends are always there for me. My bonds with those friends are very strong – stronger than they were before. (See above for more details.)Fatigue

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

Though I have firmer connections with people, my social life is fairly minimal because of issues with fatigue. I have to pick and choose. However, I make more of an effort to accept invitations – mostly by past and current students. I have no interest in socializing with colleagues. Most don’t really understand my issues. And life is too short.

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

A good friend, Joyce, is very important to me. She helps me clean, cook, and do laundry. She also provides better judgment – for example, insisting I rest when I’m falling off my feet or making sure I have everything when I travel. When I wasn’t allowed to drive, she acted as my chauffeur. When she goes away, I flounder after a month – I’m too tired to work and maintain a normal household.

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

Even after the reduction in my teaching load, working is rough, though I enjoy it very much and love the challenge. In the distant future, I expect to spend time writing and (public) speaking about brain injury.

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.

  1. There is one issue that took me a few months to understand and a few years to effectively address it. Even now, I sometimes slip-up. I have trouble dealing with high volumes of incoming data, whether sensory, emotional, or cognitive.

When it comes to sensory input (noise, crowds, bright colors), I try to avoid difficult situations (parties, sports events). Also, if I find a focus, an anchor (which can be the voice or touch of a person I trust), I regain my faculties. Unfortunately, that’s not always possible.

Emotional stuff is tougher. My damaged filters have mended to a large degree. I manage, but ultimately, you feel what you feel.

Cognitive input (when reading and listening): I have learnt to chunk it down – for example, work to absorb one line at a time. This has been useful in my teaching. When students have trouble with word problems, I show them how to address each chunk separately, and only then do I ask them to connect the dots and fill in the gaps to solve the problem as a whole.

Until I learned how to manage overload, I often ended up having a meltdown.

  1. Another issue that I didn’t identify as a symptom of brain injury for the longest time was task initiation. Though the end-result is the same, task-initiation difficulties are very different from procrastination. They feel different. Before my neuropsychologist explained it to me, I assumed I was managing life inadequately.

I explain it as follows: When you’ve just finished a long and involved project, it feels impossible to start the next project. In the case of brain-injury-related task initiation, there is nothing obvious that seems to be the reason behind it. It can strike randomly, and it can last anywhere from days to years. But, once you get started on the task, life is good, and you’re off and running, as if there never was a problem.

  1. A sometimes-effective strategy is as follows: When you identify a problematic task, put it on a daily task list (which has no more than two items; otherwise you’ll become overwhelmed and freeze). Then block off time for each of the two tasks on your calendar.

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

I found that neurosurgeons consider brain surgery a success, i.e., if you’re not dead or in a coma, life is good. Neurologists only seem to care about the physical symptoms (balance, vertigo, seizures, headaches).

neurologistOnly neuropsychologists seem to care about the invisible side of your disability. I found my neuropsychologist very helpful. He labeled issues I didn’t understand (task initiation, sensory overload) and suggested coping mechanisms and compensation techniques – extremely useful information that improved my life, both practically and psychologically.

I did not have the opportunity to undergo rehab/therapy (physical, speech, etc.) after my third surgery. I did everything myself. I played brain-games on the computer, went for walks (later hikes), and exercised every day. I’m sure I would have healed faster and more effectively with professional help. I didn’t have the wherewithal to fight for it myself, nor did I have anyone to fight for me.

Deb Brandon 2

Deb Brandon, Ph.D.

There is no full recovery from severe brain injury. There are always residual deficits that are exacerbated by fatigue. Pace yourselves carefully. Rest, rest, rest. But, don’t forget to live as fully as you can. Push yourselves as much as you can, but be aware of your limitations. Often it is a fine balance.

It’s an amazing journey of discovery and rediscovery.

Carpe diem within your limitations.

Life is good.

 

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Survivors SPEAK OUT! . . . . Cheri Marie Johnson

Survivors SPEAK OUT! Cheri Marie Johnson

presented by

Donna O’Donnell Figurski

 

Johnson, Cheri Marie Survivor 101717 2

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

Cheri Marie Johnson

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

Hayward, Wisconsin, USA

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

September 11, 2016      I was 24.

4. How did your brain injury occur?

I fell down 27 stairs.

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

I was out with my dad. A person from the establishment saw me fall instead of going to the restroom. The doors to the men’s room and ladies’ room were right next to each other, but I was found at the bottom of the stairs – unconscious. So, I was life-flighted to North Memorial Hospital. It was the best TBI (traumatic brain injury) ICU (intensive care unit) near me.

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

I was in an ambulance, put on a back board, given a neck brace, and brought to Spooner for a life-flight.air-rescue-clipart-14-1

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

I was in a coma for three weeks in North Memorial and then put on the general floor. I was sent to Miller-Dwan in Duluth, Minnesota (of Essential Health-Duluth). I was in another coma for three weeks because I was still bleeding in my brain. It was swollen, so they couldn’t do surgery. They said I wouldn’t have lived.

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?

When I was sent to Miller-Dwan, it was for inpatient occupational, physical, and speech therapies. I was there for four days and then put into another coma after the coma I was in in the ICU. I had a tracheostomy, and, two weeks later, I was put on the general floor for three weeks. There I had occupational therapy, physical therapy, and speech therapy. Now I’m in speech therapy. I talk differently, and I have a hard time breathing from the intubation. I am also in occupational therapy. I have bad posture, and it’s hard to breathe that way.

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

I have bad balance. (I recently fell out of the shower.) I am being put on life-alert (helps contact emergency services). I have vertigo when I lie down. My personality has changed – I’m like a different person. I have anger that I can barely handle. At times, it feels like a Jekyll and Hyde disorder.Split Personality

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

It’s worse. I am so angry all the time. I try to talk to who I am – it seems like I talk to an old friend of the person I used to be.

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

I miss singing and working for my kids.

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

I enjoy my kids and my dad. They make me so happy.

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

I don’t like all the confusion. It’s even hard to put one foot in front of the other.

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

I’m glad I’m alive and still have my kids.

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

I can’t work anymore. I’m exhausted. I need help with almost every daily task. I barely know how to take care of myself, but I still know how to take care of my kids. Relationships are a little harder because of my anger issue.

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

People like to abuse people who they know they can. I have kicked people out of my life – they tried asking me for my medicine, and I will not do that.

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

NurseI have a social worker and a nurse team help me. I also have a nurse who comes over twice a week to plan my medicine box and write down my appointments. I just did a neuropsychological test, and they are saying I need a guardian.

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

I’m hoping to feel like I am better, then okay. I hope they can find a way to fix my throat so I don’t have to live with a tracheostomy for the rest of my life. And I hope to find a way to not be so angry.

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 things that make you happy – your kids, animals, activities, etc. It will take you out of thinking about what happened.

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

I am here if you need to converse with a survivor. It’s nice to open up to someone with the same condition.

Please leave a comment/question. I will respond.

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Survivors SPEAK OUT! Jim Ledgewood

Survivors SPEAK OUT!  Jim Ledgewood

presented

by

Donna O’Donnell Figurski

Jim Ledgewood 1

 

 

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

Jim Ledgewood

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

Phoenix, Arizona, USA

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

January 27, 2006      Age 27

4. How did your brain injury occur?

I was shot with a 9 mm on the left side of my face.14 Jim Ledgewood 071518 f0282624

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

I did not realize I had a brain injury until seven years after being shot. My company brought to my attention that something was off.

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

I had multiple surgeries. They had to put twenty-five coils around my carotid artery to stop the bleeding around my brain.

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

I believe they induced a coma in me. Not sure, though.

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 (cognitive, physical, and speech therapies) at St. Joseph’s Hospital/Barrow Neurological Institute and at Mesa General Hospital; outpatient rehab (cognitive, physical, occupational, and speech therapies), for one week at Mesa General and for one week at Chandler Regional Medical Center.

18 Jim Ledgewood 071518 f293356169. What problems or disabilities, if any, resulted from your brain injury(e.g., balance, perception, personality, etc.)?

The frontal and temporal lobes were damaged, so all the things that those two parts of the brain control were affected in a negative way.

Donna’s note: The cerebral cortex can be divided into four sections, which are known as lobes: frontal, parietal, occipital, and temporal.

Following a frontal lobe injury, an individual’s abilities to make good choices and recognize consequences are often impaired. Damage can cause increased irritability, which may include a change in mood and an inability to regulate behavior, such as anticipation, goal selection, planning, initiation, sequencing, detecting errors, and initiating novel responses.

The temporal lobe is located behind the ears and extends to both sides of the brain. It is involved in hearing and holds the primary auditory cortex, which receives sensory information from the ears. Secondary areas process the information into speech and words. Left temporal damage can disturb recognition of words and impair memory for verbal material.

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

There are certain things that I was able to do before my TBI (traumatic brain injury) that I cannot do now. This has affected all aspects of my life.

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

I miss the control I had over my life.Control

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

I like helping others and being able to share my story. I take pleasure in doing something that only 5% of 5% of the population is able to do.

13. What do you like least about your brain injury?Jim Ledgewood 2

Everything

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

Learning and understanding my TBI and what it is doing have helped.

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

I have to move at a different pace than others. A lot of people around me have a hard time because they don’t know or understand why I do what I do or why I express myself the way I do. Once people learn that I have a TBI, the part of my brain that was injured, and what that part of the brain controls, they get more comfortable. But, I believe they are still not 100% comfortable.

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

I was not in a relationship before my injury. I have found it hard to get into a relationship since my injury.

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

I am my own caregiver.

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

I hope to have that relationship/family that I thought I would have by now. I don’t try to look that far into the future.

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.

6iyo54M5TI would say that you should learn as much as you can about your TBI. That way you know that problem. Then you can try to come up with solutions to better 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?

It is not what happens – it is what you do about it that defines the person you are.

N-E-V-E-R  G-I-V-E  U-P!

 

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