TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘“Prisoner Without Bars: A Caregiver’s Story”’

SPEAK OUT! News Bit . . . . . Football, Brain Injury & Kids

Football, Brain Injury & Kids

presented

by

Donna O’Donnell Figurski

 

newsboy-thIs American football a dying sport? With football’s prominence in American culture, it seems safe to assume no one would predict that its days are numbered. But, there is a growing undercurrent that may eventually lead to the demise of football as we know it. There is more and more evidence that the constant subconcussive hits experienced by football players lead to a high risk of the brain disease CTE (chronic traumatic encephalopathy). CTE can lead to early dementia, football12depression, suicidal thoughts, or problems with cognition, memory, or impulsive behavior.

Recently published by the Journal of the American Medical Association is more evidence of the enormous risk of developing CTE by playing American football. (CTE can at present only be confirmed upon studying brain tissue at autopsy, although research is being directed to finding a test that can detect CTE in the brains of living players.) A study of 202 brains of former football players was done by researchers at the VA Boston Healthcare System and Boston University. They found CTE in 87% of all the brains studied. Of the 110 brains of former professional players in the NFL (National Football League, the premier professional football league in the US), 109 (99%) showed CTE. Playing only college football did not significantly reduce the risk of having CTE, which was found in 91% of the brains of former college players. Playing less football did seem to lower the risk. Only 27% of the brains of former players who played through high school, but no further, showed evidence of CTE. Also, the severity of CTE was probably less with less playing time.

brain4The results have important implications for players. Many players feel they’ve been left ignorant of the risks of brain injury by the NFL, or worse, assured by the league that there is minimal risk. [Some players have quit or retired early (1, 2). Recently, a class-action lawsuit about concussions brought by former players against the NFL was settled for $1 billion.] The NFL has argued, and most players and fans who know about CTE believe, that the brains being studied are biased toward CTE because the autopsied brains in large part are from players already suspected of having a brain injury. Dr. Ann McKee, a Boston University researcher who has examined many of the brains, has stated that the results are staggering even for a biased sample (go to 1:35:58 in the video). She has stated, “It is no longer debatable whether or not there is a problem in football; there is a problem.”

Evidence of any CTE in high school football players is particularly disturbing (go to 1:29:08 in the video). Parents have taken note. Even though the NFL is actively promoting football directly to children, enrollment in youth football leagues is significantly down. Dr. Bennet Omalu, who discovered CTE by studying the brain of Mike Webster, the football-teamfamous Pittsburgh Steeler Center, wrote an Op-Ed in the New York Times titled “Don’t Let Kids Play Football.” During my radio interview of George Visger, a former lineman for the NFL’s San Francisco 49ers who had to quit the game because of a brain injury, he speculated that the preeminence of football in American society will disappear because the NFL’s talent pool will dry up. He speculates that the cost of liability insurance will be too high for youth football leagues to pay (go to 30 minutes into my interview of him).

There is no doubt that American football is exciting to watch, and there are many benefits to playing such a demanding team sport. But, difficult as it is to believe, it seems likely that the high risk of brain injury will eventually end the game.

 

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TBI Tales: . . . . . . . . . . . . . . . . . . . A Messy Kitchen & Fruit Salad

 

A Messy Kitchen
by
Michael Puffer (caregiver for his wife, Maria)
presented by
Donna O’Donnell Figurski

 

Puffer. Michael & Mari a

Maria Puffer – Brain Injury Survivor Michael Puffer – Caregiver for Maria

I came home after a long day and found what looked like a mess in the kitchen. I sat down and put my face in my hands and cried. I couldn’t believe what I came home to. I wasn’t angry, but I couldn’t stop the tears.

Twenty-three months ago, the state of the kitchen would not have been a remarkable finding. Tonight, it was truly unbelievable, and I was blown away!Messy Kitchen

Just under two years ago, I thought I had lost the most important person in my life. My loving wife, Maria Puffer, was in a horrific car accident. She suffered a severe traumatic brain injury and a spinal cord contusion, and she was in a coma at North Memorial Hospital near Minneapolis.

Ever since that day, Maria has fought to show us she is still with us and she is ever-determined to recover and get her life back. Week by week, day by day, hour by hour – she never quits, complains, or feels sorry for herself. Maria practices walking with a walker an hour a day, sometimes nearly falling asleep because she always wants to push herself. She thanks me every night for taking care of her. She shows all of us what true grit and love is.

Fruit_salad_clipartMaria asked me a few days ago where the Kitchen Aid mixer was. I told her it was in the pantry. The next day – there it was on the counter. Maria asked daughter Samantha to pick up the ingredients to make fruit salad. I told her we would make fruit salad over the weekend, but there never was time to do it.

Maria didn’t wait. She made the fruit salad by herself.

My tears were tears of joy and wonder. When she came into the kitchen, I reached out, gave her a huge hug, and said, “You are awesome!” (Maria is absolutely the strongest person I’ll ever know. I can’t believe how lucky I am to be in her life!)Man & Woman Hugging

We had dinner together and enjoyed the very best fruit salad in the world for desert.

I will try forever to be the best husband that I can be. I know I have the best wife, and she deserves the best from me.

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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 BlogSPEAK 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 neelyf@aol.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.

Daniel Bellmore - Brain Injury Survivor

Daniel Bellmore – Brain Injury Survivor

Daniel Bellmore (survivor) … I graduated from grad school with my Master’s Degree in mental health counseling, specializing in trauma and addictions.mental-health

David Smith (survivor) … In the past week, I’ve been working for a guy I met in town. I have been cleaning out his basement, 16358690_1201798153189065_1370881325_nthe entire house, etc. Yesterday, I began painting a bedroom, and I plan to finish this morning. I went to a TBI (traumatic brain injury) workshop – an art-therapy group. I also went to a “celebrate-recovery” group – I’ve been trying to help a friend.

clip-art-painting-314011I have difficulty staying focused on these accomplishments and others, since I woke out of a coma eight months ago. I’m glad that I can do these things.

YOU did it!

Congratulations to contributor!

(Clip Art compliments of Bing.)

(Photos compliments of contributors.)

As I say after each post:anim0014-1_e0-1

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. I don’t care!

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SPEAK OUT! . . . . . . . . . . . . . Guest Blogger: Ed Steeves

Making a Choice

by

Ed Steeves

presented by

Donna O’Donnell Figurski

Boy Blogger thI had a month to get ready. Yet mentally, it seemed a short time to prepare, but I would have gone immediately if it were possible. It had been such a long time coming, honestly. I was sitting around being idle for way too long. To be completely honest, this was one of the bravest things I chose to do, so I had to be strong. It was like getting the courage up to jump into the deep end, while uncertain about how cold or how deep the water is.
dive-in-poolFor the very first time in well over five years, I felt that the choice was completely up to me. I wondered if I should just consider playing it safe – dip a toe in and try to slowly get into the water, all the time staying at the edge of the pool. Or, if I should take the chance – go for the adrenaline rush.

I was tired of chickening out – of playing a fool. For the first time in a very long time (well, to be really truthful, possibly for the first time in my life), I made a choice for me, with only myself to thank or blame. I could have cut the tension with a knife.

suitcaseSo, off on my trip I went, with no end in sight, with no final destination set, but I knew I would figure it all out. I wanted to begin to live my life without all of the restrictions. Did I feel I was ready for that?

Ed Steeves - Brain Injury Survivor and World Traveler

Ed Steeves – Brain Injury Survivor and World Traveler

Without any doubt!

I headed off on an amazing adventure – to see who I could become and to travel the world. I followed the path that I dreamed of: the Philippines, Hong Kong, Bangkok, Australia, New Zealand, and more. I was ready to see the future into which I had been hurled. I found myself, did some soul-searching, and tested my limits.

 

Thank you, Ed Steeves.

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

(Clip Art compliments of Bing.)

(Photos compliments of Ed Steeves.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

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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 BlogSPEAK 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 neelyf@aol.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 lastname to be posted, please tell me in your email or Private Message.)

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

Here is this week’s Itty-Bitty GIANT Step

harry-jordan-survivor-120916

Harry Jordan – Brain Injury Survivor

Harry Jordan (survivor) I’ve been blessed with many things in my life, but recently I was in tears. My left foot – on the side I had the stroke on – hasn’t moved since 2009 (pre stroke), but the other way-clipart-waycool2day, I was able to push down and move it! I know I’m being so emotional over something so small, but it’s HUGE TO ME! Maybe I am getting better. Maybe.

 
itsnottoolate-2015-1

simon-limbrick

Simon Limbrick – Brain Injury Survivor

 

 

Simon Limbrick (survivor) It’s been thirty-seven years since my TBI (traumatic brain injury), and I’m now learning that I should not have pulled out of my coma or made all the gains I did. I was determined to bring further improvement to my left eye, which sustained third nerve damage. I was told that I would eventually go blind in it and that I would definitely not be able to move it. In one of my annual eye checks, an optometrist remarked that he had never heard of someone with my condition having the eye improve year after year. In the last twelve months, there has been definite, noticeable vertical movement, as well.  My message to others? IT’S NEVER TOO LATE FOR HEALING!

YOU did it!

Congratulations to contributors!

(Clip Art compliments of Bing.)

(Photos compliments of contributors.)

As I say after each post:anim0014-1_e0-1

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

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it intact with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it intact with your enemies. I don’t care!

Feel free to “Like” my post.

 

SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . . Carol Starke-Pyle (caregiver of her son, Thomas)

SPEAK OUT! Faces of Brain Injury – Carol Starke-Pyle

(caregiver of her son, Thomas)

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.

Carol Starke-Pyle (caregiver of her son, Thomas)

carol-starke-pyle-1

Carolyn Starke-Pyle – Caregiver for Brain Injury Survivor

 

This is my son’s story. Thomas was 43. He trained/rode horses for a living. He was very athletic, vivacious, funny, etc. He came to visit me one Sunday, and, as the day wore on, he became more and more delusional. I called an ambulance. My son knew his name, knew where he was, and walked to the ambulance. I followed to the Emergency Room. I was able to see Thomas twenty minutes later, as he was waiting in the cubicle. He could not talk – he babbled incoherently. He could not sit up or walk. He didn’t know me. He was admitted and was given many tests: a CT (computerized tomography) scan, an MRI (magnetic resonance imaging), and a spinal tap. The CDC (Centers for Disease Control) was called in. It was concluded that Thomas had brain damage. After two weeks, Thomas was transferred to a neurological center. He didn’t know how to swallow, he knew NO ONE, he was in a huge crib, and he was in diapers. More the-brain-hispinal taps and more MRIs. I was told his frontal lobe looked as if a bag of M&Ms had been tossed into it. Infectious/viral disease had been ruled out. It was determined that, due to numerous concussions from falls off horses, his brain had suffered too much damage – which was IRREVERSIBLE! I collapsed when his doctor said, “The Thomas you knew a month ago is no longer with us.” He continued to tell me that my vibrant son would need a nursing home for the rest of his life.

I went onto Facebook and shared my anguish and pleaded for prayers. A prayer chain encircled the globe. Meanwhile, I attended TBI (traumatic brain injury) seminars and met with social workers and more doctors to find a special nursing home for Thomas. Two months later, on my visit, his nurse grinned and said she had a surprise. Thomas was standing up! The next week, he was walking, then talking (he made little sense, but … !), then recognizing us, and then eating by himself. As I was a teacher, I chose to stick up all sorts of stimuli – photos of family, friends, pets, and horses. horse_adoptable_bay_animated_by_hikari_yumi-d5hrf17Thomas slowly improved (contrary to the opinions of ALL specialists). After four months, with short-term memory loss and some loss of intelligence, Thomas was released. I asked his doctor to explain. He looked at me and quietly said, “It is a miracle!”

My son is back to work with horses, has absolutely NO memory of the hospital, has a touch believe-clip-art-at-clker-com-vector-clip-art-online-royalty-free-qep8hi-clipartof short-term memory loss, and is as bright as he always was. BELIEVE IN MIRACLES! I am praying for YOU ALL!

 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

Survivors SPEAK OUT! Richard Schooping

Survivors SPEAK OUT!    Richard Schooping

presented by

Donna O’Donnell Figurski

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

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

Richard Schooping

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

Orlando, Florida, USA     apebblethrown@gmail.com

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

I was 44.

4. How did your brain injury occur?

A mysterious brain infection from AIDS attacked my entire brain and spinal cord.

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

My functions in my mind and body began to slow down. Typing and talking slowed to zero over the period of a month. I watched it happen from a shattering mirror of identity.

6. What kind of emergency treatment, if any, did you have?patient-in-hospital

I was put in the hospital on liquid experimental medications to slow the attack of the mysterious virus. Also, I was on oxygen therapies to raise my blood-oxygen level. Doctors had never seen anything like this. I was also informed I had aphasia.

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

No. I was awake and asleep intermittently for days.

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

I was in a nursing home for three weeks of intense rehabilitative therapy. Then I had occupational therapy for as long as insurance would cover it – about three months.

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

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

I seemed to lose everything. I had no idea who I was during the infection. I lost my ability to swallow, my speech functions, and all motor functions. I atrophied so quickly over a few weeks that I became immobile and rail thin. Bladder control also became an issue, as well as balance and perceptions. But, I am blessed – most of everything has returned. I also worked incredibly hard to survive and shine for others.

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

My life is truly hard, but it’s also amazing. I am not able to work. I take care of my mother, which could not have happened without this stroke. My days are unpredictable – my energy can wane quickly without warning. Arthritis and neuropathy and HIV dementia fill my days, as well as domestic duties while my husband works. I am creative daily in some aspect. I add inspirations to Facebook. I am grateful. I know I am more than this body. I am an eternal spirit. I feel aware and know that I am more.

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

I miss writing music, freedom of body and mind, fluidity of speech, my handwriting, and self-reliance.

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

My compassion has deepened and expanded in my life in ways unimagined. I embrace and deepen into being a source of inspiration and hope for others. I enjoy volunteering; creating digital pieces of heART; having quality time for my sister, Laurie; and having time with my cat, Autumn. I also enjoy singing.

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

I dislike feeling caged in my body, not being able to do what I once could do effortlessly, and my speech and motor functions being so affected, but I have faith.

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

Several things have helped me: meditation, Qi Gong, chanting, forgiveness, singing, playing, and serving others.

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

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

Yes. I feel it confused and bewildered all of my friends. Many fell away, and I do not blame them. This is my journey. My marriage to my amazing husband is withstanding the strain this stroke has brought into our lives. My family is very supportive. We have all become stronger and more caring people.

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

Yes. My social life is only what I make happen now. It still takes effort to talk and think, but many new friends have opened their hearts to me and accept me as I AM.

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

My husband, Cal Kalaf, is my main caregiver. I do know what caregiving means. I understand in that I helped three previous husbands pass over from AIDS.

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

"From Suffering to Soaring" by Richard Schooping

“From Suffering to Soaring” by Richard Schooping

I will share my story of hope through my first book, “From Suffering to Soaring.” I will offer insights and strength to as many souls as possible. I plan to tour and to write more books. I will finish my second book, which shares both my and my husband’s perspectives of the stroke. I hope to write more albums as well. I want to make the most of my time while I am still here.

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 judge the stroke or disease. Things happen. There are huge patterns at play. Respond with caring and self-love. Nutrition is important. We are what we eat. This is good advice for all of our senses.

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

Richard Schooping - Brain Injury Survivor

Richard Schooping – Brain Injury Survivor

Find a creative outlet.

Get out in nature more.

Simplify your life.

Honor the entire process.

When emotions rise and attempt to capsize you, become aware of your breath and breathe through them.

Emotions are only energy.

Energy is neutral.

Look into mindfulness meditation.

Keep the faith.

Don’t blame.

Do whatever calms you.

This too shall pass.

Share your story.

 

(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 SPEAK OUT! Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Feel free to follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it with your friends. It’s easy! Click the “Share” buttons below.

If you don’t like my blog, “Share” it with your enemies. I don’t care!

Feel free to “Like” my post.

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