TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury Stories’

SPEAK OUT! . . . . . . . . . . . . . . Faces of Brain Injury – Evonia with her Mom, Amber Baxley

SPEAK OUT! Faces of Brain Injury –

Amber Baxley (caregiver for her two-year-old daughter, Evonia)

presented

by

Donna O’Donnell Figurski

 Brain Injury is NOT Discriminating!

bigstock-cartoon-face-vector-people-25671746-e1348136261718It can happen to anyone, anytime, . . . and anywhere.

The Brain Trauma Foundation states that there are 5.3 million people in the United States living with some form of brain injury.

On “Faces of Brain Injury,” you will meet survivors living with brain injury. I hope that their stories will help you to understand the serious implications and complications of brain injury.

The stories on SPEAK OUT! Faces of Brain Injury are published with the permission of the survivor or designated caregiver.

If you would like your story to be published, please send a short account and two photos to me at neelyf@aol.com. I’d love to publish your story and raise awareness for Brain Injury.

 

 

Evonia

Evonia – Brain Injury Survivor

(Note: Today, May 19th, 2016 marks Evonia’s first anniversary of her brain injury. She has a long road ahead, but she has a very loving and supportive mother who will help her through)

Baxley, Amber 2 Caregiver of Evonia

Amber Baxley – Mother of Evonia – Survivor

I’m feeling emotional. Today is the one-year anniversary of my daughter’s brain injury. (My daughter, Evonia, will be three next month.) Evonia’s life was forever changed a year ago today. At 3:00 pm on May 19th, 2015, my now two-year-old daughter was shaken and got her traumatic brain injury (TBI). There is not a day that goes by that I don’t wish I could go back to that day and stop it from happening. I made a huge mistake that day. I chose to leave my daughter and her big brother with a man I thought I could trust – a man I thought loved his family, especially his children, more than anything in the world. Man, was I wrong! I wish I had taken my children with me. That day, not only did my daughter’s life forever change, but also I learned that you cannot always trust those who are supposed to be the ones you can trust.

Baxley, Amber 2 Caregiver of Evonia 3

Evonia – Brain Injury Survivor

Evonia spent three weeks in a coma fighting for her life because of him. She spent three months in the Pediatric Intensive Care Unit trying to recover some. My daughter had bleeding of the brain caused by her having been shaken. The blood tried to clot and caused a stroke. As of now, my little girl has had a total of five brain surgeries. She’s also had surgery to place a feeding tube into her stomach and another to remove it. Evonia will likely need to have other surgeries as she gets older. Before everything happened, Evonia was a bright, bubbly little girl – full of life. Because she was always exploring, she was always getting into things. Evonia was perfectly healthy. Now she has to fight to regain every milestone she had already surpassed.

Baxley, Amber Caregiver of Evonia 1

Evonia – Brain Injury Survivor

I so wish I could go back and do that day over again. She would have never had to go through this. If I could, I would do it in a heart beat.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Survivors SPEAK OUT! DuWayne Hall

SPEAK OUT! – DuWayne Hall

by

Donna O’Donnell Figurski

 

Hall, DuWayne 1

DuWayne Hall

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

DuWayne Hall

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

Colorado Springs, Colorado, USA    Braindamagedguy@gmail.com

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

August 16, 1992 – I was 32 years old.

4. How did your TBI occur?

It was a single vehicle motorcycle accident. (For complete story see Guest Blog.)

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

As soon as I became aware in the hospital!

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

I was on total life support, so they did whatever was necessary for that. My arm was tied around my neck because they expected me to die.

I was not wearing my helmet at the time of the accident. I had my right ear torn off; they sewed it back on. My right cheek was crushed from my shoulder’s smacking my face as I face-planted the road. They put a titanium cheekbone in to fix my face. My right eye was hanging out of its socket; it had to be placed back into my skull. I sustained a closed-head injury. My right frontal lobe and the pons portion of my brain sustained what they refer to as a “contracoup” injury (that is, the brain is damaged exactly opposite to the impact point). They implanted a shunt on the top of my head. I’ve got a metal plate in the top of my head.

I had road rash from being dragged 100 or so feet before the motorcycle stopped sliding. My arm was shattered at the elbow. My collarbone was broken in two places. I had knee surgery.

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

I was in a coma 24 days. On the 25th day, my living will was going to become effective, and they were going to unplug me from life support.

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational, physical, speech, and/or other)?
How long were you in rehab?

I was in rehab three years. I relearned everything from how to go to the bathroom to how to eat again, talk again, and interact again. I was just like a child relearning how to do everything – dress myself, cook, shower, stand upright, etc.

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

As a result of my TBI, I became increasingly more isolated, until Facebook came into the picture about ten years ago. I walk with an uneven gait. I have problems seeing just one of something. I’m partially deaf. My face is partially paralyzed. Over the years, I’ve developed PTSD (post-traumatic stress disorder) as a result of multiple TBI’s. I get frustrated very easily, but it is perceived as anger by others.

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

It became more burdensome and unfulfilled.

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

I miss friends, family, social relationships, and camping. Any exercise is burdensome. Personal relationships ended. I can’t defend myself. I lost my hospital job of 8 years.

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

Nothing!

13. What do you like least about your TBI?
It gave me PTSD. Anybody diagnosed with it understands what I am talking about! It is hell!

14. Has anything helped you to accept your TBI?

It is hard to define “accept.” I know that it has happened and that I can’t do anything about it. I believe all things happen for a reason, but I cannot find any good being returned because I am disabled. So, if I can help keep one soul from going through the hell I’ve been through these last 24 years, then that would be worth it to me!

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

I have been married two times since my TBI. No lady wants me because I’m broken, not only physically, but also emotionally and mentally.

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

I have no social life! At first, people seemed happy that I did not die. However, after time, I no longer had the number of friends that I had before my accident. The example would be that I receive a get-well card at the hospital with approximately 825 signatures of people wishing me well during recovery. If only 25 percent were sincere, I would have 207 friends. I have two – one who lives out-of-state and one who lives out-of-town. I am constantly lonely and feeling rejected!

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!

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

I don’t have any plans. I believe that life has ended for me! I am just waiting to die.

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 TBI survivors with your specific kind of TBI.

I’m too gullible. Most TBIers are.

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

Hall, DuWayne 2

DuWayne Hall

Be patient with yourself. Recovery takes a long time!

 

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

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

(Photos compliments of DuWayne.)

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

 

Surviviors SPEAK OUT! Marie Cooney

SPEAK OUT! – Marie Cooney

by

Donna O’Donnell Figurski

 

Cooney, Marie Sailboat

Marie Cooney – 1st Sail post-TBI

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

Marie Grace Cooney

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

Saint Paul, Minnesota, USA

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

June 29, 2005, at the age of 44

4. How did your TBI occur?

I had been a professional stagehand for approximately 20 years. We were setting up for a Carlos Santana concert. Years later, I learned that it was a very unusual setup, where two diamond-shaped trusses were to be built onto the stage. But when they were flown out, they extended over the audience. A co-worker had just yelled that it was a very dangerous situation. As I crossed from the stage-left side of one truss to the other side towards center, I noticed in a flash that there wasn’t any stage below me. A friend told me that I tried to cover my head protectively as I flew off the edge. I landed head first on the cement floor of the Xcel Arena, and many people thought I was dead. Another friend jumped to my aid to slow down the profuse bleeding. When my body went into seizures, those who witnessed the injury knew I was not dead. Thank God, the paramedics arrived within minutes, and I was transported to Regions Hospital’s Trauma Center.

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

Apparently I yelled out a horrible cry, which got the attention of everyone within earshot. My friend Colette, who tried to warn me of the imminent danger, closed her eyes and prayed, “Please God, don’t let Marie die!” Years later, my friend Michael told me that he heard my head crack like a bowling ball being smashed on the ground and that I “danced the Mariachi without the music.” My friend Melissa jumped to my aid to slow the bleeding. Aaron assisted her when I started to come to and tried to get up. Jeff, Chip, and other stagehands told me not to move – that I was hurt. I later learned some were afraid I might have broken my neck or injured my back. Matt was the first stagehand to reach 9-1-1 on his cell phone, though I understand that many others tried simultaneously. I do NOT remember any of this, though I have been told by friends that they will never forget.

I realized there was a serious problem when I opened my eyes at the hospital and saw my friend Sherri. “What are YOU doing in a hospital?” I asked. “No, no, no!” she corrected me. “I’m here to get your keys!” “Why?” I asked. “I need to take care of Tucker….” “You’re not going anywhere!” she explained. As I touched my head, I felt tremendous pain and saw blood on my hand and myself. I realized I was the one in the hospital!

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

I was transported to the Regions Hospital Emergency Room. There I was stitched up; they did scans of my head; and I had X-rays taken of my neck, back, and hands. I was then transferred to their Trauma Center, where a nurse was always in my room. Unfortunately, I was only kept there for two days because I seemingly made sense, which I don’t remember, and I could go to the bathroom by myself. I also think they might have thought I lived with a person – instead of my dog, Tucker! Melissa and Sherri kept asking if they could call my Mom. I was too scared to tell them that all I could remember was the picture of the rotary-dial phone we had when I was a child and the number. I could not remember where my mother or either sister lived. I didn’t know I had such a thing as a cell phone and hoped I’d figure it out when I got home. I kept repeating over and over, “I had a previous head injury. My records are at Noran and Abbott.” Then I’d fall asleep again, only to tell the next person the same thing at the next location.

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, physical, speech, or other)?

I wish I had done rehab at Regions Hospital. But when the doctor wrote orders for physical therapy, I asked if I could go to some place closer to home – to where I could walk. I wish he had had the sense to tell me I had a serious injury and needed a hospital familiar with TBIs. I also went to counseling in the town in which I lived. I eventually went to a work hardening program, where they evaluated both my physical and my cognitive conditions. As an outpatient, I saw a neuropsychologist and speech therapist at Regions. I was also treated by a neurologist, physiatrist, migraine specialist, urologist, optometrist, psychiatrist, neuro-ophthalmologist, and various counselors who included EMDR (Eye Movement Desensitization and Reprocessing) and PTSD (Post-Traumatic Stress Disorder) therapy techniques and DBT (Dialectical Behavior Therapy). Eventually I was a resident at Courage Center in Golden Valley, Minnesota, as part of their Chronic Pain Program. A number of months later, I also participated in the Community Reintegration Program (for people with brain injuries) for only four of the typically six-month program because of medical denials by State Fund Mutual, the workers’ compensation insurance company.

How long were you in rehab?

I am nine years post-injury. I see my neurologist and my psychiatrist   approximately every six months. I also see my neuro-ophthalmologist as needed for optic-nerve injections for eye pain.

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

I have severe sensitivity to lights, sounds, crowds, and chemical smells. A visor and dark amber, Churada-framed, protective eyewear are essential parts of my daily wardrobe. I carry various types of earplugs to dampen what is called “auditory discrimination” – the inability to filter out foreground and background noises. I’ve peed in my pants in the presence of Clorox. I have been told this and the extreme nausea could have been the results of petite seizures. I am, or have been, on various anti-seizure, anti-pain, anti-depression, and anti-anxiety medications. I have also been treated for migraines. My balance has been helped and my pain has been lessened by pool therapy. I have experienced many emotional changes throughout my recovery process. I would consider myself among those with heightened emotions post-TBI, as opposed to having dampened emotions. Greater self-awareness and an ability to deal with fluctuating emotions have come with time.

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

At first, “everything” was worse. I wanted the “old” me back, at least some of me. I didn’t ever want to be a stagehand again. Then I wanted to. Then I was afraid it could kill me. I thought the oversensitivity ruined “everything.” I used to sail competitively. I wanted to be able to sail, but I knew a knock to my head could kill me. I wanted to move back to the East Coast, where I was raised, but my medical treatment and my legal help were here. I was a ship without a rudder, lost at sea, and escalating depression was overwhelming me.

Things have gotten better, as I have learned to use compensatory strategies to live my life as it is now. I have had many supportive people who have helped me with many aspects of my life. “I have reclaimed my life!” I proclaimed one day. “Work comp no longer owns me!” I told my counselor, “I bought a sailboat!” Although I didn’t return to competitive sailing, this was an extremely important step for me. In ways I was now capable of, I was reclaiming parts of my life that I had loved before. I wasn’t afraid of denials or surveillance by workers’ compensation. I was choosing life for me! And now, I have a wonderful new partner, Nanette, who loves me just the way I am and is supportive in every way, without being “my caregiver.” We care about each other tremendously.

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

  1. Sailing competitively with my friend Steve and others at the Wayzata Yacht Club.
  2. Working in theater, especially running a spotlight and seeing all types of shows!
  3. Friends and family. I missed my nieces growing up. I lost touch with too many friends, until Facebook.
  4. Being “fearless,” not in the sense of being cocky, but rather in being totally comfortable and at ease.
  5. The wonderful sense of spontaneity. Also not being so tired so much of the time.
  6. My dog, Tucker!
  7. The feeling that I could do anything I wanted and go anywhere I liked.
  8. It is hard to be a high-achieving person who is really smart, but who has a TBI and feels so dumb.
  9. I started arguing with people I love. I felt so misunderstood, especially in the first few years.
  10. Writing plays and being active in the arts community, in addition to my theater career.

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

  1. Choosing to sail again and sharing that love with others.
  2. I didn’t know if I would ever have a partner again. Amazingly, I met Nanette! There is hope – even if relationships end.
  3. My dog, Rico, and Nanette’s cats, Shiloh and Hildy!
  4. Making new friends; getting back in touch with people I thought I’d never see again.
  5. Hugs and kisses. Forget formalities! Let me hug you tightly! So many friends have been hugged or have hugged me, now that I have returned to stagehand work in a very limited, but fulfilling, capacity.
  6. Joy in life again – even if it is simpler. (A brush with death makes simple things seem to be much more!)
  7. Renewed relationships with my family, who didn’t understand so much at first. I traveled to Ireland with my Mom recently.
  8. A spiritual awareness that we are not alone. I “experienced” my Dad during my first head injury, even though he had died years earlier. I would not admit this at first, but now I do freely.

13. What do you like least about your TBI?

Extreme hypersensitivity, fatigue, predictably unpredictable days, difficulty making plans.

14. Has anything helped you to accept your TBI?

Time, time, and more time. Rest, rest, and more rest. Others with TBIs. Courage Center friends and staff. A sense of humor. My lawyer, Gerry, who helped put things in perspective when “everything” seemed out of control. Writing a blog for Lash and Associates. Co-facilitating a brain injury support group. Reclaiming scripts.

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

I lost my housing multiple times. I didn’t know if landlords were trying to get around service animal laws, if my anger was too piqued, or if I lost my sense of diplomacy. Courage Center and HUD tried to help me, but I still had to move, which was a bigger mess each time. Now I can take partial responsibility, but it is really important to know your rights, the laws regarding reasonable accommodations, and anti-discrimination laws. Losing my housing caused extreme difficulties with my family and some close friends. I felt blamed and condemned for things that were not my fault.

Now I live with my partner, Nanette, in Saint Paul. We also have my sailboat in Duluth, where I can sail within the safety of Duluth Bay or out on Lake Superior, depending on the weather and my crew. My relationships with my family have improved with time, and I’m back in touch with various friends. However, I have also lost some friends, which is sad. As Nanette says, “Communication is key!” Try to keep the doors to communication open, no matter what part of the TBI equation you find yourself in.

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

It is hard to make plans with others. For the best results, they need to understand and accept that I might become extremely fatigued, need to take medications, rest, or even go to sleep. After six years, I have been able to attend some theater shows. I ask people to stay, even if I need to leave, so I can live vicariously through them. Loud music, concerts, dances, and strobe lights are all OUT! Quality time with smaller groups is better than lousy time with large groups. At family events, I plan breaks and rest periods.

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

I am a person with a Traumatic Brain Injury, and I am my own caregiver. Through others I know, I have learned to understand and appreciate the dedication, love, fatigue, frustration, and various emotions that caregivers also experience. Nanette is someone who cares deeply about and for me, as I also care deeply about and for her. But it is important that we each have some sense of autonomy and a shared life, without Nanette’s being in the role of “caregiver.” Having said that, I must also confirm she is the most understanding, accepting, and supportive person in my life.

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

Marie Cooney Playwright

Marie Cooney – Playwright

We laugh about this! I love Nanette, but I absolutely cannot tolerate the Minnesota winters. She has been telling me it’s okay to leave and calls me her “Wandering Pirate Girlfriend.” I finally believe her. I plan to spend as much time as possible doing things we love together, especially attending many smaller theaters and dance productions, which are not as assaulting. I enjoy traveling between Saint Paul and Duluth and will be getting away for at least some parts of the winters. I want to return to being a playwright, to participate in the Playwrights’ Center in Minneapolis, and to travel to wherever the production of scripts might bring me. In ten years? I will be almost twenty years post-TBI. I could be doing almost anything – with rest, as needed!

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 TBI survivors with your specific kind of TBI.

Don’t be in such a rush to get back to your previous life or move on from your injury. Time, time, time! Take the time you need. Rest, rest, rest! It’s a long road to recovery. Laughter truly is the best medicine. There will be good days, and there will be bad days, and there will be good ones and bad ones again. Stay in the hospital or in rehab as long as you can, and get as much help as you can from the people who really know about brain injuries. (People who say they are “experts” aren’t always telling the truth.) Get a great QRC (Quality Rehabilitation Consultant) who is recommended by your lawyer, not by the workers’ compensation insurance company.  Don’t take it personally – you are in a system that is designed to cut you off as soon as possible. “Powerhouse” attorneys can be “slaughterhouse” attorneys. Get personal recommendations. A great TBI attorney will listen to and respect you, not treat you as someone who doesn’t know anything. Offer reasonable accommodations, as needed. If an attorney won’t work with you, he or she won’t work for your greatest good, so run the other way.

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

Get all the help you possibly can from every source possible. A physiatrist or a PMR (Physical Medicine and Rehabilitation) specialist is an important part of your team. If you don’t have one, get one. Keep a sense of humor. Admit when life’s unbearable. Believe that it will get better.

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

Cooney, Marie Sailboat 2

Marie Cooney – Skipper – pre-TBI

In our support group, NOTHING IS OFF THE TABLE! Everything is open for discussion, no matter what. Some thing you are afraid to discuss might be the very thing others need to talk about. Take chances. Share all your feelings. Accept tears of sadness and tears of laughter. Both are welcomed and accepted, as is everything in between.

 

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

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

(Photos compliments of Marie.)

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

 

 

 

Survivors SPEAK OUT! Richard Johnson

SPEAK OUT! – Richard Johnson

by

Donna O’Donnell Figurski

 

RJohnson-Portrait1. What is your name? (last name optional)

Richard Johnson

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

Minneapolis, Minnesota, USA

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

My TBI happened October 2003. I was 53 years old.

 4. How did your TBI occur?

While cleaning the gutters on my house, I took a step from the roof onto the ladder. The ladder slipped, and down I went – hitting my head on the cement slab in my driveway.

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

 My daughter – 13 years old – saw me fall and ran over. When she saw that I was unconscious and bleeding, she called 9-1-1.

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

I was admitted into Hennepin County Medical Center (Minneapolis) in the Brain Injury ICU. I was placed into a medically induced coma. I had a craniotomy and a tracheotomy. A feeding tube was put in, and a cast was put on my left arm, as I broke my wrist in the fall.

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

Yes, a medically induced coma for 3½ weeks.

8. Did you do rehab? What kind of rehab (i.e., Inpatient or Outpatient and Occupational, Physical, Speech, Other)?


After being weaned from my coma, I was fitted with a protective helmet and transferred from HCMC into Bethesda Hospital in St. Paul for my second post-injury month. I began with inpatient cognitive, physical, speech, and occupational therapies. The trach was removed, but not the feeding tube. After Bethesda, I was transferred to Regions Hospital (St. Paul) for my third post-injury month. In Regions Hospital, I continued with inpatient physical, speech, and occupation therapies. The feeding tube and cast were removed. In January 2004, I was released from the hospital, and I went back home. I then began speech and occupational therapies as an outpatient at Courage Kenny Rehabilitation Institute (Golden Valley) until October 2004.

How long were you in rehab?

I had rehab a full year from the date of injury until I was able go back to my “pre-injury” job.

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

Aphasia is my main problem. Talking is an ongoing issue, and, in my humble opinion, that issue will never go away. Most of the time it’s not a problem, but my aphasia comes and goes. Background noises are problematic – another side effect. It’s really hard (if not impossible) to filter out background noises, especially in “loud” or “busy” situations. I also have minor balance problems, so I’m very careful when walking.

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

My “new” life is just slower than it was before. It’s not worse – only different. I look carefully at everything that I am going to do. I question if I will need help, and, if so, I make sure to ask for help. Fatigue is a problem. I get tired more easily.

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

I am unable to ride my bike anymore. I don’t think I have the balance to do it, and I refuse to find out. One brain injury is enough for me.

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

I enjoy being a co-facilitator for the Brain Injury Support Group at the rehab institute that I used during my outpatient therapy. I also became a member of the Minnesota Brain Injury Alliance Speaker Bureau.

13. What do you like least about your TBI?

I cannot multitask. It’s way too hard to be focused on the task at hand.

14. Has anything helped you to accept your TBI?

My family has helped me more than anything else. They understand me.

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

Home life – Not much is different, except I need more help to finish tasks/projects.

Relationships – Old friends are harder to find or meet up with, but I think a lot of that is because their lives haven’t changed.

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

With aphasia, I do not often go to parties or events, especially if they’re loud. It can be almost impossible to filter out background noises, unless I’m with people who understand my limits.

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

My wife is my main caregiver. I remember what my injury did to my wife and kids. So I just try to make sure their lives are getting better as well.

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

My future plan is to retire in 6 years. In 10 years, I hope that my recovery is still going 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 TBI survivors with your specific kind of TBI.

I wish I had known about support groups. Not just for me, but for my family as well. It would have given them (and me) a better understanding of the recovery process. TBI affects the entire family, and a local support group lets us know we are not alone.

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

Don’t look for a book to tell you what to expect. There is no such thing. You can Google all day long, but there is no easy answer for a traumatic brain injury. But Google will help you find online support groups, where you can post questions or vent issues that you’re fighting with.

 

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

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

(Photos compliments of Richard.)

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

Survivors SPEAK OUT! . . . Daisy Lou

SPEAK OUT! – Daisy Lou

by

Donna O’Donnell Figurski

Daisy Lou

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

Daisy Lou

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

Boyertown, Pennsylvania, USA

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

The first one was on July 6, 2012. I was 30 years old. The second one was in February 2014. I was 32 years old.

4. How did your TBI occur?

Someone ran a stop sign and T-boned my car for the first one. I don’t remember the accident, but my car was totaled. For the second one, I fell in the street on six inches of ice.

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

In August 2012, I started having back problems. I realized in November that I was having other problems, like nausea, dizziness, balance being off, sleeping all the time, noise sensitivity, and headaches, among a multitude of other problems. But I waited until December (5 months after my accident) to talk to the doctor. For the second one, I realized I had a problem a few days after I fell, when my nose started dripping and I started sleeping a lot. I wasn’t sick at the time.

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

None

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

No

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

For the first TBI, I did physical therapy for a month and a half as an Out-patient. I did biofeedback with a neuropsychologist for four months. For the second one, I took a week off of work. That’s all.

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

I sometimes have balance problems. If I try to get up too quickly, I get dizzy. I have lots of memory problems, anxiety, impulsiveness, and trouble concentrating. I tend to tell people things three or four times because I forget whether or not I’ve told them whatever that thing happens to be. I get frustrated very easily. I have trouble talking and finding words. I don’t handle stress very well, and sometimes I can’t handle it at all. I get tired very easily, and sometimes I have to take a nap in the middle of the day.

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

It’s better in the fact that I don’t remember things. So, if something happens that is upsetting, I soon forget it. But that’s also worse because I forget things I want to remember. I’ve learned to become more patient with myself and with other people.

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

I miss being able to explain something to someone and have them understand what I’m saying. Now I can’t seem to find the right words.

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

When my brain is functioning on a capable level, I enjoy explaining to people what a TBI is like and how it affects you. To some people who seem interested, I give the address of an interesting blog to look at, so they can understand TBI even better.

13. What do you like least about your TBI?

I dislike forgetting things and feeling stupid all the time. I feel like a part of my brain has gone missing, and no matter how much I search for it, it continues to hide from me.

14. Has anything helped you to accept your TBI?

Time and talking about it with friends

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

Not really. It’s more that I forget where I put things more often, so I’m continually asking someone if they’ve seen the items I’m looking for. But my relationships haven’t really changed, and my home life hasn’t changed.

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

I always was a loner, but I’m more of a hermit than before. I tend to stay in more often or go places by myself, instead of asking someone to go with me. Even if the person is on the way to wherever it is I’m going, I don’t call them because it seems like too much work to have to drive to their house and then talk to them until I drop them back off at their house.

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

Myself – I don’t have a caregiver. Although, I live with my mom, and she’s the one I’m always asking where things are.

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

Right now, I’m just concentrating on making it through the day. I have no future plans, except to take things one day at a 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 TBI survivors with your specific kind of TBI.

Write everything down! If you have memory problems, it makes your life so much easier when you can look at a piece of paper and say, “Oh yeah, that’s what I wanted to do!”

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

Rome wasn’t built in a day…. It’s frustrating to suddenly have some part of your body go berserk on you, but don’t beat yourself up. A very important part of your anatomy was bruised and battered, and it takes time for it to heal. Everyone recovers at a different rate, so don’t expect the same results as someone else with a TBI.

Daisy Lou

Daisy Lou

 

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

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

(Photos compliments of Daisy Lou.)

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

Survivors SPEAK OUT! . . . . . . . . . . . Marty Salo

SPEAK OUT! – Marty Salo

by

Donna O’Donnell Figurski

051614 Salo, Marty Photo for Interview

 

 

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

Marty Salo

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

Tampa, FL, USA     msalo@verizon.net

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

April 7, 1982      Age 11

4. How did your TBI occur?

Bike/motor vehicle accident

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

Immediately. I was medivacked to Children’s Hospital of the Kings Daughters in Norfolk, Virginia

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

tracheotomy, G-peg)

I had an intracranial pressure monitor and I assume some other tubes. The divot in my head is still visible after all these years when the hair is cut very short.

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

I was officially in a coma for something like 53 days. I was brought home on Day 49, but I had been in pediatric ICU for 14 days.

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

I did most of the recovery at home. I was tutored by a 5th grade teacher over summer, and I progressed through Catholic primary school. I had some speech therapy at public school. I had help from vocational rehabilitation to get training leading to a job.

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

Fortunately, I had been brilliant as a child, and much of the brilliance continued. There were memory problems, I guess, as well as balance problems and the need to re-master skills from traumatic amnesia. I read more online. I’ve been excited about the Internet from my days in college – even before then. I had been excited about my Apple 2c with a 300-baud modem, which allowed me to communicate to others through asynchronous communications.

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

I adapted. I chose easier courses, changed majors at the university, graduated with an undergraduate degree in Religious Studies, and continued to get my Master’s Degree in Library and Information Science. There are still situations where I can get overwhelmed, I suppose.

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

I don’t really have much memory of my pre-TBI life. I have only vague, fleeting memories of childhood.

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

I like having fun. I like going to EPCOT and Disney World. I enjoy being around other happy people.

13. What do you like least about your TBI?

I’ve been different from others, but I didn’t really understanding how different from others I was. I just knew that things were not as easy for me. I have adapted by not driving, after an accident at age 19 or so.

14. Has anything helped you to accept your TBI?

My father is in AA. He exposed me to the Serenity Prayer: “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

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

From childhood, there is no comparison. Fortunately, I met a woman who would later become my wife. She has been very beneficial to me and my experiences.

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

Again, childhood and adulthood are largely incomparable, but I’d venture to say that as a financially minded individual, I don’t spend a lot of money on alcohol or cigarettes. We have a pretty happy life, even if not much time is spent out drinking with fellas, or whatever. Other usual socialization patterns exist.

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

My mother, then my wife. My wife is not so much of a caregiver as a partner, but she does drive.

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

It’d be very nice if I were somehow able to get something going where I work at the VA Hospital – doing something to help others with computers and expanding awareness. But, I’m happy enough continuing to work with computers, getting them ready for issuance to providers.

19. What advice would you offer to other TBI survivors

Keep on progressing. Life gets better if you allow it to get better. Most people probably want to see you succeed. Some bosses might not have patience, but your progress is more important. Do not compare yourself to peers who are doing more than you are. Compare yourself to where you have been. Appreciate what you have overcome to get where you are.

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

So many things. Realize that you are not alone. Realize that others have had similar journeys. Realize that others probably would like to see you succeed. Your success builds collective good will, and helps people feel better.  http://martysalo.wordpress.com/ is a website I maintain. I have some TBI-related stuff there as well.051614 Salo, Marty Photo 2 for Interview

 

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

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

 

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

TBI Tales: Dancer Extraordinaire

(Reposted from my other blog – Donna O’Donnell Figurski’s Blog Sep. 3, 2012)

Meet Paula Nieroda 

Paula was David’s dance instructor for almost two years. She not only guided him through his dance steps, but she assessed his every movement to help him regain his balance.

Paula is much more than a dance instructor.

She is a wonderfully sensitive and compassionate young woman.

David and I took lessons with Paula once a week for nearly two years.

 

 

We learned a number of ballroom dances, including the Cha-Cha, the Tango, and the Swing – all very quick dances, which we did not do so quickly. We learned the Waltz and the Fox Trot, too. We stumbled around the dance floor amid the elegant contestants who were preparing for their next performance. They twirled and glided and dipped and swooped with feet barely touching the floor, while we firmly planted one foot and then the other in slow succession hoping that we would not topple over. We never did.

Paula taught David form – focusing on his posture. “Renew! Renew! Renew!” was her mantra – the reminder to David to stand taller.

When Paula moved to another studio, too far from us, we did not continue our lessons because we knew we could never replace her.

Paula is also a performance dancer and has competed and won many dance contests.  In the video below you will see Paula in action. In a pink fairy-princess gown, she glides over the floor with her partner, George Valasquez, who performs an amazing routine with only one leg.

Paula is truly an inspiration.

Watch this video to see what I mean. Truly AMAZING!!!!!

 

 

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

(Pictures compliments of ME.)

(Video compliments of YouTube.)

 

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My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

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