TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Brain Injury Radio Network’

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.

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Survivors SPEAK OUT! … Jo Dalton

Survivors SPEAK OUT!   Jo Dalton

presented

by

Donna O’Donnell Figurski

Jo Dalton – Brain Injury Survivor

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

Jo Dalton

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

Switzerland

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

Age 28

4. How did your brain injury occur?

Traffic accident – head-on collision at 50 mph

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

My car was smashed up, and it was obvious that I was injured. My husband was driving his car behind me and was terrified that I was dead.

medical-helicopter6. What kind of emergency treatment, if any, did you have?

I was helicoptered to the Emergency Room. I became very agitated, and it took three men to get me into the helicopter.

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

Yes. Around 45 minutes

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 released from the hospital after five weeks: three weeks in one hospital and two weeks in another. I remember very little of it. My physical therapy was five weeks with a couple of “islands of memory.” I had some neuropsychology, although I don’t remember it. At the second hospital, I believe I had some physiotherapy. At two months post TBI (traumatic brain injury), I saw the treating-neurologist from the first hospital. That doctor said that I “could go back to work and forget all about it”! The treating-doctor from the second hospital saw me as an outpatient, and she was not happy. She organized six neuropsychology appointments for me. That was the only rehab I had.

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

Initially, I had phobias about closed doors and the dark. My balance was a little out. I was told by one psychiatrist that my personality caused depression and insomnia; by another, that if I was tired, I would sleep. I found it incredibly hard to teach – I had forgotten everything I learned in college and in five years of teaching. I felt I had lost my identity. I was assessed by a neuropsychologist recently. I was told that I am slow to respond, that I have aphasia, that I get tired very quickly, and that I don’t deal well with stress.

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

I was an ambitious, full-time, Primary School teacher. I loved my job, and I was studying for a Master’s Degree in Education to achieve promotion. Because of my brain injury, it was impossible to continue either. I was confident and outgoing. I was enjoying living in a new country (I’m English, and I wanted some experience abroad). My life has changed entirely, but not all for the bad. I appreciate the small things in life (for example, fresh air, my dogs, reading (though it’s harder now to concentrate), clean bedding, and the beauty of nature (quite easy to appreciate here in Switzerland!). I also appreciate my friends and see the importance of supporting other people.

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

I miss quite a lot really! I miss the ambition and energy that I had, the love of my job, and my independence.

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

I enjoy getting outside with my dogs, exercising, and being involved in forums to help TBI survivors.

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

I dislike the fact that I am slow; that I have insomnia and depression, for which I’ve been taking benzodiazepines and antidepressants on and off for the last sixteen years; and the inability to have children unaided – my periods stopped and have only restarted since I stopped work. I’ve miscarried five times – presumably due to stress. I wanted to have two children, but I am lucky to have the one daughter whom I do have.

clock-clip-art-4ib4bm5ig14. Has anything helped you to accept your brain injury?

Time! To me, it’s the biggest healer. Time passing has put things into perspective and allowed me to accept that I cannot have my life back as it was. But, there are other things I can do. I am currently in the process of making a claim for help from the state, and if I receive an allowance, I would like to work with just one dyslexic student.

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

Thankfully, I am extremely lucky to have a supportive husband and family. I found out who my true friends are, and I am lucky that they have been so much help. The ones who weren’t were clearly not really friends.

Jo Dalton - Brain Injury Survivor

Jo Dalton – Brain Injury Survivor

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

For the first five or six years after the accident, I didn’t really have a social life – talking to more than one person was impossible. I became tired very quickly and had to leave, straight away. I was not keen to have too much noise around me. I spent quite a lot of time watching films in my apartment, as I was not keen on going out during the day. I live in a French-speaking area and lost a lot of confidence with language. In the last two years, I’ve rediscovered the need for a social life. I go out a couple of times a month, easier since I stopped work after a seizure in September 2015.

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

My husband is my main caregiver. We are both currently coming to terms with what this has meant for both of us at different stages in my recovery. He is now seeing a psychologist to give him some direction and help.

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

I would like to be doing dyslexia tutoring on a small scale, raising awareness of TBI by talking in schools, and perhaps doing some voluntary work.

18. 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.

As a survivor, you need to educate yourself, accept that recovery is a long, long haul, and find online support. We are talking years of recovery. And, hard as it is to hear, it is very unlikely that you will get back to how you were. On the other hand, the strength you gain from dealing with life after a brain injury is enormous and empowering. I would also say that you shouldn’t accept what every doctor tells you. Very few “get” brain injury, and you must not allow anyone to make you feel that it’s your fault in some way.

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

See my answer above. Also, know that [time] + [acceptance] = [ease in life]. Oh, and don’t push yourself too far, too fast. It doesn’t produce good results, as I’ve discovered!

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

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(Photos compliments of contributor.)

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SPEAK OUT! . . . . . . . . . . . . . Guest Blogger . . . . . . . . . . . . . . . Karen Dickerson

Never Give Up!

by

Karen Dickerson

presented by

Donna O’Donnell Figurski

Girl Blogger cartoon_picture_of_girl_writingOn March 2nd, 2014, I was involved in a car accident that changed my life forever. My speech was slurred; I couldn’t read; I couldn’t even write my own name.

dickerson-karen-survivor-120315-1

Karen Dickerson – Brain Injury Survivor

Two months after my accident, I was so proud to write my name again that I signed divorce papers I couldn’t comprehend. I also signed so that my brain injury wouldn’t be used to take my children away. For fifteen years, I was married – and in an abusive relationship. I had three children, and I was left with nothing. Not even child support. I had lived a fairly comfortable life, financially speaking. I just wanted out and couldn’t take the confusion of court proceedings, but yet I couldn’t understand why. Everyone said I looked “normal.”

I struggled to feed my children. I swallowed my pride even when I was standing in line at a food pantry. I walked dragging my left leg to my speech, physical, and occupational therapy sessions, thinking that my leg problem would just go away in a few weeks. A friend helped me buy a car with what little money I had. I spent a few cold nights sleeping in it, confused as to where I was, what I was doing, and when my next appointments were. I’d yell at anyone who crossed my path – losing friendships. Family left me all alone. I fought with my auto insurance company for my rights in a no-fault state, and, after several months, I finally received compensation for wage losses.

I’m not sure how it happened (as things are a complete blur at times), but I finally found a good doctor and a nurse case-manager to help me. I was put into a neuro rehab program an hour away from home. (I had to let my children go live with their dad.) Seven days a week, I learned basic living skills and tried to control my anger and frustrations and emotional outbursts. I had constant legal issues, as I was beginning to realize that what I had signed in my divorce was not what I thought. The settlement was not good for me. As a result, I had to fight for my children and for child support. After a few battles, I won their support! After getting through those struggles, I finally realized I needed to take this TBI (traumatic brain injury) head on and fight to get my life back.counsleing

I was angry that I couldn’t do the simple things a child could do, and I was frustrated that I had tested intellectually as lower than high-school level. As hard as it was, I learned coping skills to control my damaged frontal lobe and to try to focus. After my rehab program ended, I moved back home to be with my children. I went to all my therapies (three times a week) and to numerous tests and doctors. I got my kids to and from school every day. I learned how to cook again. After almost two years, I was finally beginning to live a somewhat normal life again. I was even able to meet a wonderful, humble, and understanding man. What were the chances that his own brother-in-law had a TBI? The new man in my life knew exactly what I was going through and accepted my flaws and deficits.

I then started to get interested in learning about this misunderstood injury. I attended the BIAMI (Brain Injury Association of Michigan) meetings in Lansing, Michigan. Using social media as a tool, I advocated and educated others. Hearing good vibes from all over the country and the world, I began to realize how many people just like me were out there. I had to do something about brain injury, as I was so misunderstood and I was tired of being called “crazy.”social-media

I began to excel in all my therapies, which moved me into vocational training. I was asked to put my résumé together. I did – I looked at it and saw that I never had the opportunity to go to college. I was a single mom at nineteen, and I married someone who wouldn’t allow me to grow. I could have gone back to real estate, but how was that helping people? I could have returned to the ophthalmology career that I had for years, but I was limited by the small area I live in. I had already worked for the one surgeon, but he told me that he didn’t trust me with his patients anymore because of my TBI.

th-1As hard as occupational therapy was for me, it was also fun. I gained friendships with my occupational and speech therapists. Even if I couldn’t do their tasks that day, they were still there for me to talk. They comforted me and encouraged me to keep on going. I looked into the OTA (occupational therapy assistant) program and thought Why not see if I can try it? With my disability, there should be some accommodations, and, after what I’ve been through with so many occupational therapy sessions, I thought I might just know a little about it!

I took the test and was accepted to Baker College! (Two years and five months post TBI.) I went to orientation yesterday and teared up as I walked on campus.

Karen Dickerson - Brain Injury Survivor & College Student at Baker College

Karen Dickerson – Brain Injury Survivor & College Student at Baker College

As I sat in a loud room with others picking their classes, I struggled to drown out the noise, as audio is still a daily struggle. The abbreviations and so much on the class schedule – even with military times, were problematic. I thought for one second I can’t do this. Then I remembered all those times I did “do it,” and I focused and got my class schedule done. At 39 years old, a TBI survivor, a domestic-abuse survivor, and a mother of three, I am a college student!

This program is offered near Grand Rapids, Michigan, over three hours away. As I checked in, I met the president of the college, and he noted where I was living. All I could say was, “I’m going to do this.” It is in my heart. God has gotten me this far. I will NOT give up!

Trike Treks – David Figurski

Trike Treks – David Figurski

presented

by

Donna O’Donnell Figurski

David Figurski 2004 Pre-Brain Injury

David Figurski – pre-brain injury

My husband, David, bought a Catrike 700 in April 2015.  He rides three days each week, 15 miles each day. David loves his trike. Despite not being able to walk outside unassisted because of a balance problem, he feels “normal” when he rides. He has found that people have a lot of curiosity about the trike. People have stopped him to ask questions. One woman talked to him from her car when they were at a Stop sign.

David is excited because he just broke 2,500 miles. But he still has a ways to go before he equals the 5,390 miles ridden by Dan Zimmerman and Catherine Brubaker on their cross-country trek.

David’s cumulative mileage as of 10/13/16               2,580 mi

Miles to reach 5,390* miles                                          2,810 mi

UPDATE:

David’s cumulative mileage as of 09/04/117               3,727 mi

Miles to reach 5,390* miles                                          1,663 mi

*done by both Dan Zimmerman and Catherine Brubaker on their cross-country ride

Figurski, David Trike

David Figurski – post-brain injury on his Catrike 700

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SPEAK OUT! . . . . . . . . . . . . . Guest Blogger . . . . . . . . . . . . . . . Ed Steeves – Standing Still

Standing Still

by

Ed Steeves

presented

by

Donna O’Donnell Figurski

 

Boy Blogger thNo matter how great it sounds, we can’t go back. No matter how much we may want to, that bridge has burned. The past has passed for a reason. We need to accept that it is over. We can only take the lessons we’ve learned.

Now we have a choice, since we can’t change the past or return to it. We can’t get the past back and never will. So, the decision that we have to make is Will we move on into the future, or will we simply stand still?k20874676

I, for one, will go forward with my life. I have decided that, somewhere ahead, there is something better to find. Because, if we just stand there and stare at what’s dead and gone, we will surely lose our mind.

The thing we fail to notice at times is that, no matter how amazing the past was, the future is better. The past, sadly, is occupied only with our memories, and it’s our prison. Only in the future can we all be free.

Ed Steeves - Survivor

Ed Steeves – Survivor

It’s OK to take some time to reflect – to forgive and move on. I’ve finally given up on all that’s there in the past.

But remember that life is still alive in the future, and we are never certain how long it will last.

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.

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SPEAK OUT! . . . . . . . . . . . . . Faces of Brain Injury . . . . . . . . . Bob Bernardi (survivor)

SPEAK OUT! Faces of Brain Injury –  Bob Bernardi (survivor)

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.

 

Bob Bernardi - survivor

Bob Bernardi – survivor

Bob Bernardi (survivor)

Recently was an anniversary. It’s been 24 years since that terrible day back in 1992, when I lost control of my car and suffered my traumatic brain injury. Needless to say, I have experienced a lot of life’s lessons – both good and bad. I am still here, and I have accepted my standing in life, but that is not to say that I am not a fighter. If I feel that something is not right with my care or if I have questions, then believe me when I say I am going to express my concerns or ask my questions! I have had the very best in medical care and some of the worst, and, for that reason, I will not just “go with the flow.” I am sure that most of you know that, when the human brain is hurt and damaged, that alteration is an alteration to “us.” Our brain is “us.” Just trying to get back to our original selves is what we strive for. I know I can be a pain to many of my friends outside of the brain-injury community with how I view everyday life. But all that we have shared in the brain-injury community make us friends. I know that I depend on their views. I would be lost without the brain-injury community, and for that I am thankful!

 

Thank you Bob Bernardi for sharing your story.

 

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(Photos compliments of contributor.)

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SPEAK OUT! NewsBit . . . . . . Common Mouse Cell Type Converted to Neurons

SPEAK OUT! NewsBit

Common Mouse Cell Type Converted to Neurons

presented by

Donna O’Donnell Figurski

 

newsboy-thCommon Mouse Cell Type Converted to Neurons

You’ve probably heard of the promising future of cell therapy. The excitement comes from the fact that injuries might be treated by implanting fresh, healthy cells. Stem cells, which can mature to many different cell types, have been discovered in almost every organ in the body. They hold enormous potential for helping to heal injured organs. Already, scientists are devising methods to add new muscle to damaged hearts and to add insulin-producing cells to the body to cure Type I diabetes. The brain also has stem cells, and much of the natural recovery from brain injury is due to stem cells, which rebuild the damaged part of the brain. The beauty of stem cells from the brain is that they can develop into healthy neurons and replace damaged circuits. But the natural healing of the brain is often insufficient. Scientists have been looking for ways to make more stem cells and to activate them so that implanting them is practical and they can result in more healing.scientist

I want to tell you about exciting basic research on cell therapy that may make possible or speed up the development of new therapies for brain injury. Scientists at Duke University have found a way to make neurons from common mouse cells, called “fibroblasts,” without resorting to stem cells. The scientists made a modified protein and put it into fibroblasts. The modified protein found and activated the master regulator genes needed to turn on the genes for the cell to become a neuron.

In the past, a cell’s change into a neuron required that extra copies of the master regulator genes be introduced into the cell. The cell maintained its neuron-like properties only if the extra activators were present. If the extra copies were lost, the cell reverted to its original form. Scientists said that the neurons were “unstable.” Still, it was a breakthrough. To help stabilize the neurons, extra copies of genes for the master regulators were added to its chromosomes. The neurons still weren’t perfectly stable, and the presence of extra copies in the chromosomes was unnatural.

In the new method, activation of the neuron genes is natural. The neurons are “stable,” even when the modified activator protein is gone. As far as the scientists can tell, the neurons formed this way appear to be like natural neurons.

MouseOf course, these studies need to be done with human cells. But, because the mouse is similar enough to humans genetically, new neurons are likely to be made from human cells. If so, cell therapy to treat brain injury will become common in the foreseeable future. One benefit is that therapy can be personalized. It’s not practical to get your neurons from a brain biopsy, but your easy-to-get fibroblasts can be converted to neurons. Those neurons can then be tested with therapeutic drugs to see what works best with your genetic background. Also, the implanted cells would not be rejected by your body (prevention of rejection is the reason for immunosuppressive drugs today) because the neurons would be made from cells of your own body. (Full story)

 

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Caregivers SPEAK OUT! …… Raine Turner

Caregivers  SPEAK OUT!  Raine Turner,

(mother of survivor, Ryan, and author of “Only Son…Only Child”)

presented by

Donna O’Donnell Figurski

 

 

Raine Turner - Caregiver & Author: Only Son...Only Child

Raine Turner – Caregiver & Author: Only Son… Only Child

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

Raine Turner

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

Edmonton, Alberta, Canada

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?

The brain-injury survivor is my son. At 16, he was in a car 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?

I began care August 13, 2003.

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

No

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

I was self-employed and unable to manage my business.

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

Not really

Raine Turner Caregiver & Author

Raine Turner Caregiver & Author

 

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

In the hospital

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

Yes. I sat beside my son’s bed and read to him.

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?

Yes. My son had rehab both as an inpatient and an outpatient.

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

At first, self-care. Also eating, walking, etc.

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

Trick question. It made me realize what is important in life. It taught me patience, which I did not know I had.

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

I dislike my son’s loss of the chance for a normal life. I miss having a relationship for myself.

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

Nothing!

15. What do you like least about brain injury?

Only Son...Only Child by Raine Turner

Only Son…Only Child by Raine Turner

My son’s daily struggles

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

There is no choice but to accept.

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

Yes. I did not have a relationship at all for ten years. The one I had at the time ended due to stress. It’s now hard to find someone who wants to be involved with this situation.

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

Yes. But it’s getting better now with my son in school and his not living with me.

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

I hope to be on a beach!

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

Buckle up! It is going to be a long, tough ride.

 

 To learn more about Raine Turner, check out her website, “Only Son Only Child: a journey through love.” Look for her book on Amazon.

 

(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.)

 

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SPEAK OUT! NewsBit . . . . . . Inosine Helps Brain-Injured Monkeys Recover Fine Motor Control

SPEAK OUT! NewsBit

Inosine Helps Brain-Injured Monkeys Recover Fine Motor Control

presented by

Donna O’Donnell Figurski

My husband, David, is a traumatic brain injury survivor since 2005. He is physically disabled as a result of his brain injury. As a molecular biologist from Columbia University, David is always searching for ways to improve his own life after his brain injury. He recently stumbled on this exciting research project, and we wanted to share this hopeful concept with others.

 

Disclaimer:

Neither David nor I is a medical doctor, and we are not suggesting any medical solutions. We are only publishing this article for your information.

 

Newsboy th

 

Inosine is a small molecule found in cells. Research with mice and rats has shown that inosine is released by stressed or damaged neurons. Inosine can turn on the genes for axon development. Axons are the long, threadlike membrane extensions needed for neurons to send an electrochemical message to other neurons. The new axons from undamaged neurons can rewire the brain (plasticity) to allow circuits to form that compensate for circuits lost from damage.

Adding inosine to neurons in culture stimulates the formation of more axons. Would inosine stimulate an increase in plasticity by increasing axon formation and thereby help recovery from brain injury? Consistent with this idea, neuroscientists found that rats recovered from brain injury better when inosine was present.pTqKnRpgc

Now neuroscientists at Boston University report testing inosine’s effect on a primate – the rhesus monkey. The study was small (8 monkeys) because monkey experiments are expensive, but, despite the small number, the results were significant. At the beginning, all 8 monkeys could easily grasp food treats with their dominant hand. The part of the brain needed for the required motor skills in the dominant hand was then deliberately damaged in each monkey. The 8 brain-injured monkeys were divided into two groups: 4 monkeys were treated by giving them inosine, and 4 were given a placebo. The researchers didn’t know which monkeys were getting inosine and which were getting the placebo.

After 14 weeks of treatment, the monkeys were examined for their ability to grasp a food treat. Three of the four inosine-treated monkeys grasped the food with their dominant hand normally. Fine motor control in the hand seemed to be the way it was prior to the brain injury. In contrast, the placebo-treated monkeys retrieved their food by using a compensatory strategy. The placebo-treated monkeys still had a problem with fine motor control in the hand.

mouse-hiThis preliminary study has extended evidence of the inosine benefit from mice and rats to a primate. The result indicates that inosine may one day benefit human victims of brain injury. Inosine is already in clinical trials for the treatment of multiple sclerosis and Parkinson’s Disease. Inosine appears to be safe – athletes have taken inosine supplements for decades.

Strictly speaking, this experiment addressed recovery of only a specific movement. The brain injuries were highly controlled – all were nearly identical, and they were in a specific area of the frontal lobe that affects fine motor control of the hand. Inosine experiments of this type have only been done in animal models. But even with all these caveats, there is reason to be optimistic. Inosine treatment may become a common human therapy for brain injury. Clearly more research is needed before inosine is shown to be useful in the clinic. (Full story)

 

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SPEAK OUT! Guest Blogger . . . David A. Grant . . . . . . . . . . . . . You Gave Me the Life I Was Destined to Have

You Gave Me the Life I Was Destined to Have

by

David A. Grant

presented by

Donna O’Donnell Figurski

Boy Blogger thI’ve been thinking about you again and wondering how life has been treating you.

Last night, Sarah and I were at the high school. We went to watch fireworks.

Like we do most every year, we set up our blanket, then walked the oval track for a couple of laps. It’s a great place to people-watch.

The bleachers caught my eye as I looked up to one of the top rows – to where I was sitting when I saw you graduate.

David A. Grant - Brain Injury Survivor & Author

David A. Grant – Brain Injury Survivor & Author

You had no idea I was there at your graduation. How could you?

Except for the day we met shortly after the accident, we’ve not seen each other.

One of our own kids graduated the same day that you did. It was just another of those “chance meetings” that have too often come to pass.

I never expected to hear your name on the loudspeaker that graduation day.

Nor did I know how deeply my PTSD (post-traumatic stress disorder) ran as I fell into my seat, unable to even stand for the rest of the ceremony.

A while back, I wrote that if I had the chance, I might just thank you for changing the very course of my life.

Today, I would most likely not thank you.

fireworks-animatedBut I need to be very clear, I am not angry, nor do I hold any resentment. To hold bitterness in my heart is to allow myself to be run over again and again – every day that I breathe.

Life is just too short.

Sometimes things just happen.

Sometimes newly-licensed teenage drivers run over cyclists. We both know that better than most.

It’s a safe bet to say that you did not plan your day by saying, “By today’s end, I’ll have T-boned a local cyclist.”onbicycle

It’s weird and hard to put into words – even for a guy like me, but I am living the life I was destined to live.

You just played a small, rather impactful part.

Kind of like a long line of falling dominoes, you knocked over the first domino when you struck me that cold November day back in 2010.

And from there, that line of dominoes has continued to fall. It’s circled the globe a few times … and, one-by-one, the dominoes fall.Dominoes

While I can’t thank you for hitting me that fated day, I can now see that it was unavoidable. It was destined to happen.

Over the years, I have come to realize that I have lost my life. I spend a lot of time living for others.

A few years ago, I was able to find you on Facebook. You were in college then.

Lest we forget, you were only sixteen when we first met.

You looked like a typical college kid – happy, clean cut, smiling … ready to embrace your future and all the promise that it holds.

I looked for you again today. Not in a creepy kind of way – more so, just to see how you are.

After a few minutes, I gave up. You were nowhere to be found.

I suppose that’s best.

You most likely don’t wonder about “that guy” that you hit while you were still a kid, but occasionally he thinks about you.

I have no need to forgive you as I never condemned you. Funny how that works.

If Fate saw our paths cross again, I would most likely not let you know who I was. No greater good would be served by it.

But here, in the faux anonymity that comes with today’s world, I wish you well … and I wish you happiness.

Peace.

About David A. Grant

David A. Grant 2 101115

David A. Grant – Brain Injury Survivor & Author

David A. Grant is a freelance writer, keynote speaker and traumatic brain injury survivor based out of southern New Hampshire. He is the author of “Metamorphosis, Surviving Brain Injury,” a book that chronicles in exquisite detail the first year-and-a-half of his new life as a brain injury survivor. His newest title, “Slices of Life after Traumatic Brain Injury,” was released in 2015.

David is also a contributing author to “Chicken Soup for the Soul, Recovering from Traumatic Brain Injuries.” As a survivor of a cycling accident in 2010, he shares his experience and hope though advocacy work including a public speaking as well as his weekly brain injury blog.

David is a regular contributing writer to Brainline.org, a PBS sponsored website. He is also a BIANH board member as well as a columnist in HEADWAY, the Brain Injury Association of New Hampshire’s periodic newsletter.

David is the founder of TBI Hope and Inspiration, a Facebook community with over 15,000 members including survivors, family members, caregivers as well as members of the medical and professional community as well as the publisher of “TBI Hope and Inspiration Magazine.”

 

Thank you, David A. Grant.

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

(Clip Art compliments of Bing.)

(Photos compliments of David A. Grant.)

 

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

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