TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Survivor’

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.

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(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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Past Blast: Survivors SPEAK OUT! George Visger (former NFL player)

SPEAK OUT! George Visger (former player for the San Francisco 49ers)

Survivors SPEAK OUT! George Visger

(former NFL San Francisco 49ers player)

(originally published July 7, 2014)

presented by

Donna O’Donnell Figurski

 

 

#74 NFL San Francisco 49er, George Visger @ 1981

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

George Visger

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

Cypress, California, USA     visgergeorge@gmail.com

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

I was first injured – had surgery – at age 22 during the 1981 Super Bowl season with the San Francisco 49ers.

4. How did your TBI occur?

I had a number of concussions throughout my 12 years of playing organized football. My first serious concussion occurred at age 13, during my third year of Pop Warner. I was hospitalized on that one. My final, and most severe, concussion occurred in 1980 against the Dallas Cowboys. I suffered a major TBI in the first quarter, yet I never missed a play by the use of over 20 smelling salts during the game (or so I was told later in the week when my memory returned). I also never missed a practice. Several months later, early in the ‘81 season, I developed hydrocephalus (water on the brain) and underwent emergency VP (ventriculoperitoneal) shunt brain surgery at Stanford. I have since survived nine emergency VP shunt brain surgeries, including five in a nine-month period in ‘86-‘87 while completing my Biology degree. I have also had several gran mal seizures, and I have been on anti-seizure meds for over 30 years.

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

I realized I had a problem during the ‘81 season. I developed major headaches and projectile vomiting. I saw balls of light in front of each eye each night. The team doctors diagnosed me with high blood pressure and prescribed diuretics for over two weeks, until I suffered focal point paralysis of my right arm. The team doc diagnosed me in the locker room with a brain hemorrhage. I drove myself to the hospital, where I underwent emergency VP shunt brain surgery.

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

tracheotomy, G-peg)?

I have had nine emergency VP shunt brain surgeries since then. They drilled a hole in my skull and installed a permanent drain tube, which runs to a pressure valve in the back of my head. They plumbed that to drain into my abdomen. I am also on Lamictil for seizures.

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

Nine months after my first shunt surgery, the shunt failed while I was fishing in Mexico with my brother. It took him a day to get me home, and I was in a coma from the pressure on my brain. I had two more brain surgeries ten hours apart and was given last rites. I was 23 at the time.

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

I was never offered rehab. In fact, I was forced to sue the 49ers for Work Compensation just to get my second and third brain surgeries paid for. Until now, it was brain surgery, out the door, and “See you next shunt failure.” I did use Vocational Rehabilitation Services when I returned to school in ‘86 to complete my Biology degree. But, I was on my own to rehab after each of the five brain surgeries that I had while finishing my degree. I discovered B.R.A.I.N. (Brain Rehabilitation And Injury Network) founded by Sue Rueb in Cypress, CA, last year while speaking at a TBI conference. I literally moved there last August to get daily treatments – first treatments I have ever had. I do neurocognitive therapy and Yoga therapy, and I counsel other TBI survivors, which helps me as well.

How long were you in rehab?

I’ve been rehabbing since August 2013.

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

I have gran mal seizures, MAJOR short-term memory issues, poor judgment, anger-management issues, loss of direction, poor concentration, problems getting my words out or thinking of the right word, numbness in extremities, constant headaches, vision problems when my shunt goes out, diminished hearing, personality changes, problems handling finances, and brain seizures from alcohol, to name a few.

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

I completed a Biology degree in 1990 at age 32 after eight brain surgeries, and I followed my second dream to be a wildlife biologist. I have never let my injury define me, and I thank God for it. I wouldn’t be where I am now had I not been injured. But recently, things have begun to spiral out of control. I lost my environmental consulting business (Visger & Associates, Inc.) in 2009, and I lost our house in 2011. My wife of nearly 19 years, and the mother of my children, and I are going through a divorce. It’s been too much for her.

Visger, George  2008-06-15 21.03.51

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

I miss my family. I miss being The Giant – the guy who “could do anything,” as my wife used to say. I miss being able to remember things. I literally do not remember numerous out-of-state bow-hunts, months of my life, kids’ activities, etc.

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

I enjoy being able to use my injuries to help others. I feel it is my God given mission in life now.

13. What do you like least about your TBI?

Loss of my marriage

14. Has anything helped you to accept your TBI?

I’ve been helped by my belief that God has a plan for me and that “something good comes out of everything.”

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

It has destroyed my marriage, and I lost my ability to provide for my family.

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

Social activities were impacted, as I liked to drink back in the day. Now the only impact is that I will forget to attend a social outing. I have never been embarrassed about my injuries. I’m just as goofy now as I was before my injury.

17. Who is your main caregiver?

I was single until my late 30’s, and I have been my main caregiver ever since. My mom stepped in for a few days during surgeries, and my older brother, whom I worked with, kept an eye on me. My wife has done what she could over the years, but she has never been through a surgery with me.

Do you understand what it takes to be a caregiver?

I understand better than most what it takes to be a caregiver. I also understand what caregivers go through. I call it the “Ripple Effect.” My family members and caregivers have taken a worse beating from my TBI than I have. It is much harder on our loved ones than it is on ourselves.

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

I founded The Visger Group – Traumatic Brain Injury Consulting in 2010, and I have spoken all over the country. I coordinate directly with the NFL on rule changes to reduce TBIs in football at all levels. I have spoken at congressional hearings, conduct motivational talks at schools and businesses, and currently am working with our veterans suffering from TBI. I am also suffering from frontal lobe dementia, and I hope to kick a few butts and rattle a few cages while I can, in hopes of changing the way the medical field treats TBI survivors and families. In ten years, I expect to be working with government agencies, our military, academics, and sports leagues. I plan to be leading and speaking at TBI-recovery groups.

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.

George Visger #74  4th row from bottom, 2nd from right  @ 1981

George Visger #74
4th row from bottom, 2nd from right
@ 1981

In football, there is a saying: “Short, Choppy Steps.” If you over-stride, it’s easy for someone to knock you on your butt. You want to keep your butt down, your head up, and take short, powerful 12-inch strides. Forget about breaking long touchdown runs. Get the little things done each day, and you will reach your goals. If a football team only got four yards each play – no more, no less – they would never lose a game. Think about it. They would get a first down every three plays, and they would score every time they had the ball. Life is no different. You need long-term goals for sure: score a touchdown, win the game, win the Super Bowl. But, you will NEVER get there if you don’t get your four yards a carry. We sell wrist bands on our website (www.thevisgergroup) that say “Short, Choppy Steps” and another one we give to coaches and players that says “Use your head, DON’T use your head.” Focus on small daily victories, and you’ll win the game.

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

Keep in mind everyone has a cross to bear. Carry your cross; don’t let it carry you. All of us TBI survivors have a lot to give to everyone. Turn your negative into a positive and touch people’s lives. Focus on your positives. Work hard, and put it in God’s hands. It will all work out.

That’s all anyone can do.

You can learn more about George Visger on his blog and these YouTube videos.

George Visger Blog – Life Before and After Football

George Visger talks about his life in these videos:

The Damage Done — George Visger’s Concussions

Battle Scars: Stagg High Alum, Former 49er Fights on Despite Brain Injuries

George Visger addresses specific topics in these very short videos:

Visger-275x300

Do Helmets Give Football Players a False Sense of Safety?

Would This Retired NFL Player Do It Again?

Thank you, George, 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.)

(Photo compliments of George.)

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.

 

(Clip Art compliments of Bing.)

(Photos compliments of contributor.)

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Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Survivors SPEAK OUT! . . . . . Steven A. Marderosian

Survivors SPEAK OUT! Steven A. Marderosian

presented by

Donna O’Donnell Figurski

 

Steven A. Marderosian Before TBI 20190429_120335

Survivor – Steven A. Marderosian Pre-TBI

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

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

4. How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, 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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

surfer-boy-clipart-1It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

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

I dislike needing way too much sleep and always being tired no matter what I do or don’t tired-clipart-they-7do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

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

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisyno-noise-clipart-1 places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of income, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in m

Steven A. Marderosian After TBI 20190429_113920

Survivor – Steven A. Marderosian Post-TBI

y experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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.

Don’t try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

(Clip Art compliments of Bing.)

(Photos compliments of contributor)

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What is your name? (last name optional)

Steven A. Marderosian

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

Barrington, Illinois, USA; E-mail: steven@marderosianlaw.com

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

February 28, 2018; I was 49 years old.

How did your brain injury occur?

AVM (arteriovenous malformation) rupture – hemorrhagic stroke

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

My wife heard me sounding confused while talking to someone on my phone. Later she saw me looking at my phone as if I didn’t know what it was or how it worked. Then I started to notice my left arm going numb, and then, my left leg. I tried to “walk it off,” but I crashed to the floor.

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

My wife raced me to the Emergency Room, where I triggered a “stroke alert” response. I recall only the very start of it. My wife was kept outside a curtain, so I don’t know any of the details before I stabilized.

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

By the grace of God, no

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?

Towards end of two weeks in the Intensive Care Unit/neurology (and removal of my AVM by rare cross-craniotomy brain surgery), I had physical therapy, occupational therapy, and speech therapy evaluations in the regular hospital. I spent two more weeks in a rehab hospital for physical, occupational, and speech therapies. I then moved home with six more weeks of physical therapy and occupational therapy in a partial admission “day rehab” at the same rehab hospital. My total was more than two months of rehab.

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

My left side was paralyzed from the shoulders down – it was near total from the ribcage down. (I had no balance – I couldn’t stay up on all fours.) My left shoulder/arm/hand was moderately impaired. I have no real cognitive deficits per se, but my mental processing is disabled in high-level speed and volume capacity. My AVM was at the border of the frontal and parietal lobes, bleeding into the frontal lobe in the right hemisphere. It fractured me emotionally.

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

It’s a mixed bag. I got up on a board and surfed just three months “post op” (against a “no contact sports” order). I’m physically stronger and even faster than I was pre TBI. But, my mental processing speed and capacity are still disabled. A bipolar diagnosis a few years pre TBI (likely due to progressive blood flow abnormality) appears to have been rectified by the AVM removal. But, while my mood is more stable, I still struggle to figure out my new personality. My general emotional state is different and strange.

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

I miss the lightning-fast mental processing and the seemingly limitless volume capacity. I miss not having to relearn every maneuver in black belt karate and fighting, downhill (telemark) skiing, and all other physically demanding things I’d been doing. I miss the 6-6.5 hours of sleep per night without ever napping or feeling tired.

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

I like that I care about the real suffering in the world (i.e., not my own, by comparison), in the midst of which I lived and rehabbed. I like having a far more stable mood and seemingly being cured of bipolar disorder. I’m looking forward to this second chance to fix past mistakes and live as God wants me to. And to never, ever, fear anything in the world again – other than God.

What do you like least about your brain injury?

I dislike needing way too much sleep and always being tired no matter what I do or don’t do. I don’t like figuring out my new altered personality, my future career, and even my likes and dislikes. I don’t like having to relearn every advanced physical maneuver and regaining my previous mental processing speed and volume capacity.

Has anything helped you to accept your brain injury?

I have been greatly helped by my undying (and now bulletproof) faith in Jesus Christ; by my eldest son, who is bipolar (now I want him scanned for an AVM too) and is the only one in my family who understands my continuing emotional turmoil; and by the support of my close friends in Christ and by my BFF of 45 years.

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

I look, speak, and act “fine,” so family (except my eldest son) and others don’t really understand my continuing emotional turmoil and new personality. So, I keep my inner feelings mostly to myself (and to my BFF, to my eldest son, to my bible study group, and to my therapist).

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

I was kind of a homebody before, so my social life is not much different. But, busy, noisy places, like crowded restaurants, create a sensory overload that can become overwhelming, especially after high-stress or high-volume days. It’s like I can hear every individual sound of 100 people, intercoms, TVs, and devices all blaring at once. I just want to scream, “Will everyone please just shut the f#@k up!?”

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

I’m so undeservedly blessed that I don’t have or need a caregiver anymore. My wife had to do it for the first few months after I moved back home, but I’ve been mostly on my own since then. My “emotional caregivers” are probably my BFF, my eldest son, my bible study group, and my therapist.

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

I can’t tolerate the blatant dishonesty and BS involved in practicing law anymore (especially litigation, where it’s the worst) – not my own, but that of others who simply “double down” when I catch them and call them out. Far too many “judges” seem even worse than the lawyers. My BFF and I have done construction rehab work, and we just launched a demolition and construction company. In ten years, I hope it will be my main source of oncome, with my eldest son working with us and me taking only select legal work “on the side” (which sounds like Heaven). I wrote a book on God’s miracles in my experience. I hope to write more and to speak to inspire and help others overcome their crises and follow Jesus Christ.

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.

Don’t try to force yourself back into who you were; you simply aren’t that person anymore and never will be again. I always say that as well as I’m doing now, “everything is different” somehow. Embrace who you’ve become and the power your experience and resilience have given you to overcome any obstacle. And, help others do the same.

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

Thank God constantly for every breath you take; every blessing you have; and even every challenge, setback, and outright sorrow you experience. All these things work together to achieve God’s will to make you stronger and better as the person He wants you to be. And never, ever, sweat the “small stuff” again – life’s just too short.

 

With all God’s blessings to all survivors everywhere,

Steven A. Marderosian

 

So, Whaddya Think? . . . . . . . . . Do Motorcycle Helmets Protect the Brain?

So, Whaddya Think?

Do Motorcycle Helmets Protect the Brain?

by

David H. Figurski, Ph.D

presented by

Donna O’Donnell Figurski

David H. Figurski, Ph.D. survivor of brain injury

Whether or not motorcycle helmets reduce head injuries is a topic that is highly controversial. Witness the fact that some states have motorcycle helmet laws while others don’t.

Clearly, helmets do not prevent all brain injuries. Former National Football League lineman George Visger (San Francisco 49ers), who’s a survivor of a football-induced brain injury, worries about the false sense of security that helmets can engender.  (Listen to minutes 12:00-14:00 of Donna’s August 16, 2015, interview of him.)

On the positive side, many people believe motorcycle helmets can reduce minor head injuries and thereby mitigate or even prevent some brain injuries. I am staunchly pro-helmet in my viewpoint, but I am also realistic about how protective a helmet actually is. Recently, I encountered someone who is an adamant proponent of the anti-helmet viewpoint. Here’s what happened.

Donna and I recently attended a lecture by Carrie Collins-Fadell, Executive Director of the Brain Injury Alliance of Arizona (BIAAZ), on the basics of brain injury and the work of the organization. At one point, I asked Carrie if BIAAZ had an official position on motorcycle helmet laws. (Arizona currently has no such law.) Given the current debate, her unsurprising answer was that it does not.

I’m a firm believer in helmets because one saved my face and possibly prevented a serious brain injury. I loved my bike, and, like most riders feel about their riding ability, I considered myself to be competent, alert, and safety-conscious. But, my bike was totaled in an accident that was not my fault.Vehicules-Moto-476361

As I rounded a bend in the Catskill Mountains of southern New York one Sunday morning, I encountered a massive oil spill that was left on the road by an emergency car repair. My tires lost their grip, my bike and I went down, and my bike ended up underneath on oncoming car. Fortunately, I was thrown from my bike and ended up down the road. (The hysterical driver thought I was still with my bike underneath her car.)

The point of this story is that I was wearing the best full-face helmet I could buy. I hit face-first. I know that because the chin-bar on my helmet was ground down from the road. Because of that helmet, I was able to walk away – although with some road-rash. I hate to think what would have happened to me if I had not been wearing that helmet.

CoolClips_vc040139I told Carrie that I was in favor of helmet laws. But, another member of the audience took issue with me and presented the opposing view. “The only reason I would wear a helmet is if a law required me to.” We had a short discussion about our opposing beliefs. There are valid arguments for both opinions, and I know much more could have been said. But, I was mindful of the time, and I suspected Carrie was eager to get back to her talk. (I know Donna was happy I ended quickly!)

Both of us made valid points. I’d like to address comments that were stated and what could have been said.

The audience-member argued that a helmet adds possibly dangerous weight to a rider’s head. This is a valid point.

Helmets can add up to 5 pounds to the head, and that extra weight can endanger the neck, with consequences for the brain and/or spine. (Professional race-drivers are well aware of this danger. I raced cars at the amateur level, and, again, I considered myself to be safety-conscious, although Donna thought that racing cars at all was a strange way to show it! Nevertheless, I was the first driver in the group to use a HANS device – a carbon-fiber collar that’s held tight by the safety harness. The point is that the weight of the head and helmet is somewhat counteracted by tethering the helmet to the device. There is evidence showing that the reduction in the number and/or force of head impacts by a HANS device is protective.)dk163

The audience-member also argued that a full-face helmet cuts down on peripheral vision.  I completely agree that good peripheral vision is really important for safe riding. I adamantly disagreed with the statement, however, that a full-face helmet interferes with peripheral vision, but I didn’t take the time to give my reasons for believing that way.

It’s true that old full-face helmets have small eye-ports and restrict peripheral vision. But, many modern full-face helmets have wide eye-ports so peripheral vision is not restricted. That was a consideration when I purchased my helmets for motorcycling and car racing.

Another point the audience-member made was that a helmet does nothing to protect the brain in a serious accident and, as was noted above, may make neck injury more likely. I agree that helmets are not protective in a major accident. I know of a rider who was killed while wearing a good helmet.

A helmet will not protect the brain in a catastrophic accident, but a helmet might reduce the severity of a brain injury in a minor accident. A slight impact of the head in a highly-cushioned helmet may lead to no brain injury at all or to a less severe brain injury. But, a slight impact of a helmetless head could lead to a serious brain injury or even be fatal.incident-clipart-accident

The audience-member also mentioned that he’s been riding 40 years without a helmet. I congratulate him for the accomplishment of never having had a serious accident. I too thought I would ride my bike for many years. But, unexpected things happen. One such incident happened to me. It’s why some of us wear safety gear.

The audience-member and I ended by agreeing on a point. We both understand that, during a serious impact, no helmet can protect the jelly-like brain, which exists inside a hard skull.

I understand there is considerable joy in riding totally free and unencumbered. Motorcycles are about freedom, and the principle of individual freedom is paramo61463unt for some people. Those of us who wear safety gear are concerned with the significant risk of riding with the lack of precautions. We still experience the feeling of the impressive freedom that comes from riding a motorcycle – just a bit less.

 

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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.)

41UvDTIGD8L._SX326_BO1,204,203,200_

“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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TBI Tales . . . . . . . . . . . . . . . A Friend? The Need for Better Understanding of Brain Injury

A Friend?
The Need for Better Understanding of Brain Injury
by
Alan Gregory

presented
by
Donna O’Donnell Figurski

Alan Gregory 1

Alan Gregory Brain Injury Survivor

 

I was working at my minimum-wage, 3- to 4-hours-per-day job when an old friend came in. He asked why I was working there and not at my former job. (I had been an accountant at a large manufacturing firm – a job I held for more than 30 years.) I told him I lost my job after I suffered a traumatic brain injury (TBI).

Of course, my friend didn’t know what a TBI was, so I explained it to him. He then assumed I must have been in a car accident. But, when I explained to him that I had slipped on ice and landed on my head, he rolled his eyes and moved on.

I wanted to grab him and tell him, “Yes, it’s true, and it totally messed up my life!”clipart-of-person-slipping-on-ice-7

I deal with my brain injury every day. I struggle with the fact that I can no longer financially support my family. Some days, I have to force myself to get up, after I have bounced around the house all night with my head not allowing me to sleep. I used to have a great, salaried job, at which I usually worked ten hours per day. Now, I can barely work a total of ten hours in a week. Ugh!

I honestly wonder what my friend’s reaction would have been if I had told him that I had a heart attack or a stroke or even cancer. I am sure that his reaction would have been sympathetic and understanding with an offer of “If I can do anything …”

k23633524

A little understanding and compassion go a long way.

Well, I don’t want his sympathy. We have survived these past two years without his help. A simple dose of understanding would have been preferable, rather than the perplexed look, the sudden turn and walk away, or the “Yeah, right” head shake that we survivors of brain injury all too often get from others.

 

 

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