TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘survivingtraumaticbraininjury.com’

Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

Survivors SPEAK OUT! . . . Thomas Hopkins, Jr (Tommy)

presented

by Donna O’Donnell Figurski

Tommy Hopkins, Jr Survivor of Brain Injury

 

 

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

Thomas Hopkins, Jr.

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

Mountain Home, Idaho, USA (originally from Wisconsin)

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

I was 19 years old.

4. How did your brain injury occur?

I have had several head traumas that led to my brain injuries. I’ll discuss the main ones. I have two injuries from February 2003. The first was due to a JDAM bomb (Joint Direct Attack Munition – a guidance kit that converts unguided bombs into all-weather precision-guided munitions). The second was from an explosion in a unit I was working with. In 2006, on my 4th tour, I had gotten a hammer to the head. I do not recall this incident at all. My fourth injury was in May 2007. I was still on my 4th tour. Our camp got morning RPG/mortar hits. The shop I was working in had one hit close by that shook the shop. The 40-lb. equipment I was working on fell over and hit me in the back of the head.

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

I started noticing issues after my first injury back in 2003 – daily headaches, ringing in my ears, light sensitivity, plus I would invert numbers.

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

Due to the units I was in, I did not get treatment. I’ll rephrase that – due to the units I was part of, unless you lost a limb, your sight, etc. or your life was in danger, you were not allowed to seek medical treatment.

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

No coma

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

I started seeking help once I got out of the army. I started at the VA (medical care at hospitals of the Veterans Administration). It was not the best outcome.

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

I have convergence insufficiency (a condition in which your eyes are unable to work together when looking at nearby objects, creating double or blurred vision),

photophobia, daily headaches that turn into migraines, and constant tinnitus. One doctor said I have damage to the autonomic and limbic systems in my brain. Other doctors have said that I don’t even have a brain injury! (LOL) I have no concept of time; I experience jerks (involuntary muscle movements); I search for words; my speech is slurred; my brain often won’t let me get my words out; and I have a poor memory. I do not feel 60+% of my body, and my lower limbs do not work a lot of the time. “Partial Para” is what they call it. At times, I need to be in a wheelchair.

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

Worse

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

I miss my memory. It used to be photographic.

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

Retirement (LOL) … Driving my wife nuts (LOL) … Um, working my brain in different ways to work on problems and situations that come up in my hobbies

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

I’m not Johnny-on-the-spot anymore. I miss my memory. My body is going to shit.

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

MY WIFE. Even though most of my injury is “invisible,” she showed me that I also have physical scars that I and others can see.

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

Yup. That’s a very long answer.

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

Yup. We lost a lot of friends and family because I was not the same Tommy I was before I was brain-injured in the war.

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

Tommy Hopkins, Jr. Brain Injury Survivor
Caregiver – Kristina Hopkins

MY WIFE! I have a rough idea of some of what she does for me, but I have no clue of what all she does.

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

My “plan” is to maintain what I have and live each day as if it is my last.

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.

Yes. You have to adapt to your new self. That old person is gone. I had to realize I will never be as I once was, BUT I am still able to do most things with adaptation.

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

My advice: Good days come and go. Work with the day you have because you don’t know what tomorrow will bring.

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(Photos compliments of contributor.)

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Brain Injury Resources “I Give Up” Composed and Played by Elijah Bossenbroek

Brain Injury Resources …

“I Give Up”

Composed and Played by Elijah Bossenbroek

presented by

Donna O’Donnell Figurski

This is an amazing piece of piano music composed and played with breathtaking emotion by the young and upcoming (some say “genius”) pianist Elijah Bossenbroek. It’s Pianoa very moving piece, about which commenters have written “sad,” “uplifting,” and “inspiring.”  I can only assume that Bossenbroek has “triumphed” over an extremely sad part of his own life.

It is an appropriate piece for survivors of brain injury, who usually experience these emotions at one time or another. Listening to this piece gave me chills.

Never Give Up

 

 

 

Never Give Up!
Scream!
Yell!
Breathe. Breathe. Breathe.
Move on…

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Past Blast – “Guest Blogger … Ken Collins – 38 Tips for Living with a Brain Injury”

Past Blast  (originally published December 29, 2014)

SPEAK OUT! Guest Blogger: Ken Collins

(Host on the Brain Injury Radio Network)

offers

38 Tips for Living With a Brain Injury

 

Boy Blogger thOn December 31st, I will have lived with a traumatic brain injury for 38 years. I have used several strategies for co-existing with and minimizing the effects of my TBI. I know now that the brain-injury recovery process is ongoing and that there are four major areas to work on during recovery: (1) Getting Organized, (2) Being Responsible, (3) Following Through, and (4) Moving On. I learned a lot over the years, and I want to share my experiences. I have listed 38 tips (one for each year) that could be helpful to you.

 

1. Regain trust in yourself and in others.

2. Try not to be critical of mistakes you make. In the early years of your recovery, there will be too many of them to count. Learn from these mistakes and move on.

3. Find purpose and meaning in your life again. This will make it easier to get out of bed in the morning. Having a sense of purpose and meaning will give you something to live for and will help you feel worthwhile, help motivate you, and improve your recovery process. You will start feeling better about yourself.

4. Keep stress and anxiety to a minimum every day. Reducing stress and anxiety will Stress free zoneincrease your self-esteem and make life easier. Stress and anxiety trigger the fight-or-flight response in the mid-brain. You don’t have any control over this response because it is part of the Emotional Nervous System. When the fight-or-flight response is activated, it increases confusion and makes it harder to process information.

5. Regain your self-confidence and self-respect.

6.Be proactive.

7. Stay focused, calm, and relaxed as much as possible. This will make it easier to think, and you become less dependent on others to remind you. Becoming more responsible for yourself will build good habits on your part and will improve your self-esteem and self-confidence in the long run.

8. Get a large calendar. Put it up on your wall and use it. Make sure it’s in a location where you will always see it. An iPad (or clone), a smart phone, or a note pad with a calendar and alarm does the same thing. A calendar will also relieve stress and anxiety by helping you stay on task and not forget.

Key rack9. Get a key-holder and put it by your door to put your keys on when you come home. Do this every night so you won’t have to look for your keys in the morning. Starting your day off on the right foot will make your day easier and help to relieve stress and anxiety.

10. Make a “To Do” list to help you stay organized. iPads, iPhones or other smart phones, and note pads work wonders with this. The list will help you and make you feel good about yourself.

11. Making a list before you go shopping will save you money by cutting down on impulse-buying. It will also help you become more responsible and less dependent on others. Being less dependent on others improves your self-esteem.

12. Get lots of rest, and slow down. Many times we try to do too many things at once, and nothing gets done. Sleeping on an issue or concern can be the best way to help you figure it out. Getting enough rest will give you valuable energy to think better and solve difficult situations. Sufficient rest will also relieve stress and anxiety.

13. Set up a routine and stick to it. A routine will make it easier for you to follow through with what you have planned for the day. By doing the same thing every day, you will start building trust in your capabilities again.

14. Eat healthy foods, and get lots of exercise. Doing these things will help you get the blood with its oxygen circulating to your brain.Healthy Foods

15. Get a dog and take it for walks. In my case, I have nine dogs, and they take me for a walk every morning and night! They also give me the unconditional love and companionship I need to feel good about myself and be happy.

16. Find ways to relax that aren’t counterproductive to your well-being. Abusing alcohol and drugs to “relax” is counterproductive. Long walks, yoga, and Tai Chi are much better for you and will make processing and problem-solving much easier. Stress and anxiety will be reduced.

17. Be patient.

18. Pay attention and become an active listener. Actively “hearing” what people have to say is more important than passively “listening” to what they say. Watch their body language. When I get distracted, sometimes it is harder to understand what a person is saying. Stay relaxed and focus. Take deep breaths – nothing works better than getting oxygen-filled blood to your brain.

19. Be around positive people and people who care about you. Nothing is more depressing than listening to someone who’s always complaining about his or her life or about what is going wrong in the world. Become active. Don’t just sit around hoping things will get better. Quit talking about a problem, and do something about it instead.

20. Don’t take criticism personally. When people don’t understand things, they criticize them. Constructive criticism can make you a better person in the long run.

21. Keep an open mind. Remember that your family and friends want to help, but sometimes they don’t know how. Many people don’t understand what you are going through, so don’t hold them responsible for this.Breathe

22. Stay calm; stay relaxed; take deep breaths; and move on!

23. Be careful of those you hang out with because they will set the stage for how you act. Friends who judge others and criticize you aren’t “friends.”

24. Grudges will only hold you back. They will be like anchors and keep you from being able to move on.

25. Lighten up on yourself, your family, and friends who want to help you.

26. Worry less and smile more.

27. Be content with what you have. Others have it much worse than you.

28. Find ways to stay active and be less isolated. Get out of your head and into the outside world.

Never Give Up29. Don’t give up – embrace adversity. Have adversity give you the resolve it will take to get better and improve your life. This will be up to you and no one else. People will be there to help you, but all of the work will be up to you. Use it or lose it!

30. Take ownership of your recovery. Remove the word “can’t” from your vocabulary.

31. Life is hard for most people. Life after a brain injury will definitely be hard, but not impossible. It will get easier over time – be patient! Make the best of every day and move on.

32. Thinking too much about a problem or issue can cause depression. This will trigger the fight-or-flight response, and you will be like a dog chasing its tail.

33. Be good to yourself.

34. Don’t take life too seriously.

Ken Collins for Blog

35. Don’t let the little things get you down. When you think about them too long, they seem bigger than they really are.

36. Don’t beat yourself up over things you can’t control. This will only increase your stress and anxiety and trigger the fight-or-flight response.

37. Be happy with yourself and don’t try to live up to others’ expectations.

38. Most importantly – don’t set unrealistic expectations for yourself. Be strong. Find hope – because with hope, anything is possible!

Stop by the Brain Injury Radio Network to hear Ken. His show airs every 1st Thursday of each month from 5:00p to 6:30p Pacific Time.

Thank you, Ken Collins.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Survivors SPEAK OUT! . . . John Bradshaw

Survivors SPEAK OUT! . . . John Bradshaw

presented

by Donna O’Donnell Figurski

 

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

John Bradshaw

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

Apple Valley, California, USA

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

July 4, 2012     Age 56

4. How did your brain injury occur?

Car accident

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

The impact was immediately known to be serious. I was in a coma at the scene of the accident.

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

I was air-lifted from the scene of the accident. My condition was assessed. I had CT (computerized tomography) and MRI (magnetic resonance imaging) scans, and I was put on a respirator.

7. Were you in a coma?

Yes

If so, how long?

Deep coma: 1 week; sleep coma: 3 weeks

8. Did you do rehab?

Yes

What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)?

I had my therapies – occupational, physical, and speech – both as an inpatient and as an outpatient.

How long were you in rehab?

My therapies basically lasted 1+ years. I still do physical therapy every year to help with balance and strengthening.

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

I have problems with balance and perception. I have a personality disorder, a mood disorder, memory-loss, and nervousness, to name a few issues.

10. How has your life changed?

There is no normal. Every day is different.

Is it better?

No

Is it worse?

Yes

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

In general, I miss knowing where I am, my quick train-of-thought, and my memory.

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

I enjoy the people I have connected with through support groups and rehab.

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

I dislike not knowing things in general and not understanding why I am like this.

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

Yes. Jesus sent me back to let everyone know he and his father are alive. They love us, so it doesn’t matter what church you go to. They want to see us come home.

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

Yes

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

Yes. I find it very difficult to interact with others now.

17. Who is your main caregiver?

My wife

Do you understand what it takes to be a caregiver?

No

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

I have no plans for the future. I take it 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 survivors with your specific kind of brain injury.

(No answer)

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

Life will never be the same. Take it one day at a time, and believe it does get better with time. My wife’s favorite reminder motto is: “I am not what has happened to me … I am what I choose to become.”

 

 

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SPEAK OUT! Itty-Bitty Giant Steps

SPEAK OUT! Itty-Bitty Giant Steps

presented by

Donna O’Donnell Figurski

Itty-Bitty GIant Steps for Blog

SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at donnaodonnellfigurski@gmail.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

Kathleen Lynx
Survivor of Brain Injury

Kathleen Lynx (survivor) … I just had to crow. It’s been nine years post TBI (traumatic brain injury), and I was able to sew a pair of PJ pants. They were originally going to be capris, but after a few errors, I have sleep pants. I goofed on measuring and had to put in eight inches of side panels so they would fit, but I finished them. It’s the first item I have sewn that fits. Yeah!

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Past Blast: “Brain Injury Resources – Unleashed Talents”

“Brain Injury Resources – Unleashed Talents”

(originally published July 29, 2014)

presented by

Donna O’Donnell Figurski

 

Can TBI Unleash a Talent That We Didn’t Know We Have?

 

Brain th-2TBI survivors are usually defined by others in negative terms. Survivors are often seen as people who are no longer able to do something they once did easily or as people who are physically disabled. It has become strikingly evident from the interviews on this blog (Survivors SPEAK OUT!) that TBI survivors, once they have accepted the new normal of their lives, often show immense courage and determination. They have aspirations and exhibit motivation that is intensified or that wasn’t even known to exist. Here are two videos that show a positive outcome from TBI.

The first video is long (1 hr, 5 min), but it is mesmerizing. In it, neurologist Dr. Darold Treffert discusses (with videos) the “savant syndrome.” It is thought that some abnormality in the brain unleashes a skill that normal people find to be phenomenal. At 29 min 20 sec into the video, Dr. Treffert discusses “The Acquired Savant” – a person who has become a savant after a brain injury. Although becoming a savant after a brain injury can happen, it’s rare. But, any model of the brain has to be able to explain the savant syndrome. Dr. Treffert suggests that the brain comes “fully loaded with software” and that the normal functional brain eventually suppresses much of its intrinsic “software” to reduce stimulation. This means that we all may have suppressed talents.

The second video is much shorter (15 min) and is relevant to all TBI survivors. Ann Zuccardy redefines what it means to be smart. A person may define himself or herself by a certain talent or ability. Does one’s life then become unfulfilling when that skill is lost as the result of a brain injury? Ann Zuccardy, who was affected by a brain injury, tells us that the loss of a dominant skill allows a person to nurture and/or develop other skills that may have been ignored. These other skills can be as useful as or even more impressive than the dominant one was.

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

 

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Caregivers SPEAK OUT! Bill Duwe

Caregivers SPEAK OUT!

Bill Duwe  (caregiver for his son)

presented by

Donna O’Donnell Figurski

Bill Duwe Caregiver

Bill Duwe – Caregiver for son, Ray

 

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

Bill Duwe

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

Broken Arrow, Oklahoma, USA     wduwe@cox.net

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?

I am Ray’s father. He was 34 when he suffered a brain-stem contusion in a motor-vehicle accident.

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

Ray was released from the hospital on January 27, 2001. We shared caregiving with his wife until November 2001, when Ray moved to our house. My wife and I have been his main caregivers since November 2001. I was 60 years old.

Bill Duwe Wife & Son Ray IMG_6570 (2)

Bill Duwe and his wife – Caregivers for son, Ray

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

No, but my wife’s mother was requiring some assistance. Eventually, we were caring for her and Ray in our home. She passed away in 2007.

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

Yes, I was employed. My employer helped by allowing me to work from home a day or two a week. I worked for 2½ more years. Then it seemed better for me to retire.

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

Absolutely! Currently, I have eighteen volunteers who help with stretching exercises for Ray. I trained these volunteers. We exercise Ray twice a day on a physical therapy table. For seven of those exercise times each week, a volunteer comes to help. Exercise takes about 45 minutes. Some volunteers come once every week; some, twice a month; and some, once every two months – depending on their availability. This does wonders for everyone’s morale – my wife, Ray, the volunteers, and I are all uplifted in spirit.Volunteers

In addition, I employ a nurse for two hours to bathe, give medicines, help dress, and help exercise Ray twice a week. My wife will have knee-replacement surgery next month, so we will employ this nurse two hours a day, six days a week, during my wife’s recovery. Two of Ray’s children will also come to help us during her recovery.

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

We received ten days of family training on the rehab floor of the hospital before they released Ray. They trained us in physical therapy, occupational therapy, speech therapy, and all daily care. We did most of his care during those ten days.

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

Ray was in a deep coma. He did not respond in any way for one month. He partially opened his eyes exactly one month after the injury. We camped in the waiting room day and night. We took turns going home at night for a shower and an occasional night of sleep at home.

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?

Ray received inpatient therapy during the ten days of family training. After he was released from the hospital, we were able to get various periods of outpatient or home-health therapy for a few years. We have always been directly involved in any therapy.

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

Ray is a non-verbal quadriplegic. He requires complete 24-hour care. Ray’s ability to communicate is very limited. Frequently he can close his eyes for “Yes.” Sometimes he can shake his head for “No.” Occasionally he can smile, but the heavy doses of seizure medications have dulled his ability to show emotion.

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

There have been significant adjustments to our daily life. We made major accessibility accommodations. We have a wheelchair-van. We built a custom accessible home. I would not say life is better or worse. We learned how to adapt. We travel extensively – road trips and cruises. We are able to do what we want – it just takes extra planning and effort. We enjoy going to church, eating out, etc. Ray goes with us. Many of Ray’s friends have connected with us. Ray’s children are close to Ray and us.

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

We very much miss the old Ray.

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

It has provided opportunities to connect with and appreciate Ray’s friends. We enjoy sharing our experiences with other caregivers and friends we make in our travels and with therapy students.

15. What do you like least about brain injury?

The devastation to the survivor and his family

87747316. Has anything helped you to accept your survivor’s brain injury?

Ray’s demeanor indicates he has accepted his injury. Knowing he accepts it helps us accept it.

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

Our marriage is strong. Unfortunately, Ray’s marriage did not survive. Ray’s children are close to Ray and ready to help when needed. We may be closer to his children than we would have been otherwise.

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

We seldom attend church-class parties in a home because it is difficult, or impossible, to get Ray into most homes. Otherwise, we have an active social life. My wife and I each have social activities we attend individually.

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

In ten years, I will be 87. I expect to still be taking care of Ray in our home. I may need more help, but who knows? My health is good. I expect Ray, my wife, and I will be traveling.

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

  • Make the effort to find support, and work to keep support.
  • Take care of yourself and your life.
  • Remember, you know your survivor’s medical history better than any doctor does. Use your knowledge to help the doctor. (For instance, scar tissue in Ray’s lungs may be misinterpreted as pneumonia on an X-ray.)

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“We Still Have Him to Love” by Bill Duwe

 

 

I have written a book, “We Still Have Him to Love” by Bill Duwe. I wrote it to help other caregivers. It is available on Amazon.com.

 

 

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